More facts and tidbits about lymphoma...

I have a very good book called Living with Lymphoma by Elizabeth Alder.  Ms. Alder is a nuerobiologist who was also diagnosed herself with lymphoma.  It is filled with tons of scientific facts and information.  It has become my lymphoma bible and I often turn to it for answers to my own questions.  I was thinking that I would like to occasionally post and share some interesting facts and tidbits that might help others researching lymphoma.  I will title my posts "More facts and tidbits about lymphoma".

So here goes...

-The most common symptom of lymphoma is painless enlargement of one or more lymph nodes.  In fact, in over two-thirds of persons with lymphoma, visible enlargement of lymph nodes is the symptom that sends people to the doctor.  In both Hodgkin Lymphoma and NHL, lymph node enlargement is most frequently noticed in the lymph nodes of the neck.  Nodes in the groin and armpit are commonly enlarged in NHL as well.  Slow growing forms of NHL--often called low-grade or indolent NHL--often involve widespread node enlargement affecting multiple nodes.

[Ken_PA]

Posting those is a good idea, Mocha.

[Mochadelicious]

Thanks, Ken.  I hope it helps those desperately seeking answers.  I highly recommend the book to those who have been diagnosed.  The internet is a great resource, but sometimes I also like to have some good ol' fashioned books on hand when I have questions.  

[macavelli]

I have a question because you seem to know what you are talking about, can you see lymphoma in the liver?  I have been getting tests back with high ALT AST liver funtion tests
150 ALT 66AST

My doc has ruled out almost everything and i had an ultrasound which revealed nothing....

I am 23 6'0 109lb male, could i have some sort of lymphoma in a lymph gland in my liver.

thanks

ian

[Mochadelicious]

Hi Ian,
Yes, lymphoma can be found in the liver.  Funny that you ask me about this because I too have a spot on my liver that is questionably lymphoma (depending on which doctor you talk to).  My original  oncologist thought it was lymphoma because it seemed to shrink somewhat during chemotherapy.  My new oncologist doesn't think it's lymphoma and says he thinks it's a cyst.  The only way to know for sure is with a biopsy, however, because that is such an invasive proceedure, the doctors don't want to do it.  They say it wouldn't change my treatment plan anyway so no need to really know for sure.  They are keeping an eye on it however and if it gets bigger we will think about a stronger treatment.  Sorry to run on and on about myself, but I can only draw from my own experience with this matter.

I don't know much about liver function tests either since I have never had one.  Can you explain why you had a liver function test?  

[Eileen611]

Hello, my husband was diagnosed with low grade lymphoma just last night.  He had some thickening in his colon which they biopsied and preliminary status is low grade lymphoma.  However, he was told to get a small bowel series and pet scan.  Dr. said based on preliminary biopsy, he thinks it's low grade and will have to wait for results of more in depth biopsy to stage it, etc. and also for other test results.  I am terrified....is lymphoma survivable, what are the survival rates, and what is usually the form of treatment?  He is 59 years old and in good health over all.  He had a bacterial infection in his colon which is why he had colonoscopy and he has diverticulitis.  Other than that, he is a healthy, active man.  Please someone tell me he will live with this for many many years!!

[Mochadelicious]

Hi Eileen,
I'm so sorry to hear about your husband.  I know this is an extremely difficult time for you and him, but please know it's not as bad you might think.  

There are several types of slow growing (indolent) lymphoma.  Follicular is the most common type (which is what I have), but there are a few others considered indolent too.  First, let me just tell you that most of the statistical data you read on the internet is wrong.  You may have read something along the lines of survival being around 10 years, but this data is obsolete for several reasons.  One, the statistical data on survival with the use of moniclonal antibodies (such as Rituxin) hasn't been updated.  Monoclonal antibodies has been huge in the lymphoma world, and simply put, there hasn't been enough lapsed time to record the survival data since the use of them.  There are many people out there who have survived 20 plus years with this disease (and still going).  Really.  I've talked to them myself.  And two, lymphoma typically is diagnosed in older people in their 60's who often have other serious ailments at the time of diagnosis.  This information isn't weeded out of the statistical data when figuring mortality rates.  

Indolent lymphoma is not curable, but it is managable, much like any other chronic type of disease.  It is often referred to as a chronic disease because typically you treat it (usually with Rituxin plus some kind of chemotherapy regimin) whenever the symptoms show up (like swollen lymph nodes, fevers, night sweats, weight loss, etc).  You may even hear the term "watch and wait", which seems crazy to most, but studies have shown that there really isn't an advantage to treating indolent lymphoma until symptoms occur or will probably occur with in the year.  I personally was asymptomatic other than a swollen node, but because the doctors thought it was likely I would begin having symptoms with in the year they thought it was reasonable to start treatment.

Because you are so new to this, I would like to recommend that you look into the Lymphoma Research Foundation.  You can go to their website at Lymphoma.org.  There's lots of information there.  I would also like to recommend that after your husbands final diagnosis, that he seek a second opinion at a large cancer research facility.  You may have to travel some, but it is well worth the trip, even if they agree with your local doctor because it helps put your mind at ease.  

[Eileen611]

Hi Mochadelicious, I am so grateful to you for your response and all the information.  You have no idea how much you have helped me!!  You are right, all the info on the web puts survival rate at 10 years and that scared me to death.  I definitely intend to take him to a major cancer hospital, more than likely, Sloan-Kettering, for a second opinion, once all the tests are done.  Just the thought that he can live a normal lifespan with this has brought so much comfort.  Thank you from the bottom of my heart.  I can already tell that I will be logging in here frequently over the next months, even years!!  Thank you so so much!!  
Eileen

[Mochadelicious]

You are so welcome, Eileen.  I'm glad I can help.  I did the exact same thing when I was first diagnosed; went straight to the internet, which scared the socks off me.  It wasn't until several week later that I came to realize I wasn't living such as short of a death sentence than I originally thought.  

I'm happy to hear that you plan on a second opinion at Sloan-Kettering.  I hear that's a good place to go.  I got mine at Fred Hutchinson in Seattle.  It was quite a drive for us but it surely put my mind at ease.  I know you are just starting this journey, but if you get a chance I would highly recommend that you and your husband attend a lymphoma conference put on by the Lymphoma Research Foundation.  I went to one (in Seattle), and it was phenominal.  It was coordinated with the Fred Hutch doctors and was extremely informative.   I know LRF travels all over the nation to give these conferences so they may have one coming near you.  You might check the website to see when and where the future conferences are going to be held.  

Please keep us posted on your progress and please feel free to send me a personal message if you have any more questions.  

[Eileen611]

So here I am again with my mind racing in a million different directions! I alternate between sheer terror and certainty that my husband wiii be ok.  I hope you won't mind if I ask you more questions of a more personal nature. How long ago were you diagnosed, at what stage, what treatments have you had, is remission a word that is used with lymphoma?D id you have any symptoms that sent you to the doctor?  How are you feeling now?  Until his colonoscopy we had no idea lymph nodes were in every corner of the body! My husband has no symptons, had a clean cat scan and clean blood work 2 weeks ago. Is this in his favor?  Do you think the doctor would have said it was low-grade lymphoma even though it was the preliminary pathology report without being sure?  I am terrified that tomorrow's pet scan will reveal even more bad news or that the small bowel series on Thursday will.  Thak you again for your patience and time and please accept my apology if I am being too intrusive...this site is a God-send and so are you!!   Eileen

[Mochadelicious]

Hi Eileen,
I am happy to answer your questions.  It's perfectly natural to have lots of questions.  I encourage lots of questions, actually.  It's at this point that you and your husband need to be vigilant in his care by doing lots of research and asking lots of questions.  As I said at the beginning of this post, you might want to head to your local library or even better, purchase online the book "Living with Lymphoma" by Elizabeth Adler.  It's probably the best book I've found on lymphoma and I often refer to it when I have questions.  

Mine is quite a long story.  I was diagnosed in May of last year at the age of 36.  It took over 3 years to get properly diagnosed.  I first developed a small lump on my breast and had it checked out by my gynocologist.  He sent me for a mammogram which came back as a "thickening" but said it wasn't anything to really worry about.  The following year I developed another, much larger lump on the same breast.  I went back to my gynocologist who referred me to a general surgeon who ended up doing an excissional biopsy on both lumps (where they take them out completely and biopsy).  The biopsy came back benign on both.  Then, the next year after that I developed a third lump on the same breast.  I went to a different general surgeon who did a punch biopsy.  This time it came back as suspicious for lymphoma.  The sample, along with the previous biopsy samples, were sent to a larger lab in Seattle for confirmation.  It was determined that all three lumps were lymphoma.  

I had no other symptoms other than the lumps.  My blood work was normal too.  I was stage 3, grade 3 follicular lymphoma.  The biopsy showed that some areas under the microscope showed aggressive disease and my doctors thought I would probably start developing B symptoms with in the year (B symptoms are night sweats, fever and weight loss).  Some people also develope itching.  They recommended R-CHOP therapy.  R stands for Rituxan (the monoclonal antibody that I spoke of earlier).  CHOP is a chemotherapy regimin made up of 4 drugs, each letter represents a drug.  

I did R-CHOP every 3 weeks x 6 treatments.  I responded very well to the therapy and I am currently doing something called R-maintenance.  Again, R stands for Rituxin, only this time I get it alone with no other drugs.  The plan is to do this every 2 months for 2 years.  I'm currently half way done with this and still doing very well.

You can say I'm in remission, but because indolent lymphoma isn't curable, I will most likely get this again.  Because the cancer grows so slowly, it makes it nearly impossible to kill each and every cancerous cell in the body.  The CT and PET scans are all clean now, but most likely I still have cancerous cells microscopically floating around in my body that the chemotherapy didn't kill.  At some point these cells will probably start collecting in the lymph nodes again and start causing B symptoms.  

I want to tell you that PET scans are notorious for revealing false positives.  My first PET scan put me in a tizzy because I had so many spots light up, which I later found out was not all cancer.  PET scans can pick up infections and muscle activity but can't distinguish them from cancer.  Your husband will have to sit very still for about an hour before his scan.  Tell him not to suck on cough drops or candy before the scan (I did this and sure enough my lower jaw lit up from the muscle activity).  

Your husband's biopsy samples were probably sent to a local pathology lab which then gave his doctor the preliminary report.  Then they probably sent the samples to a larger lab out of town for confirmation and more in depth testing.  This seems to be a pretty standard protocol, especially if you live in a small town.  I personally was glad to have a larger more advanced lab looking at the samples.  Do I think it's premature to diagnose indolent lymphoma from the preliminary report?  No.  Of the 61 or so different kinds of NHL out there, labs can pretty much distinguish one from another under the microscope by how they look and how they respond to certain chemical compounds.  Not to say they can't be wrong, but the final report will confirm that.

Good luck tomorrow and please let me know how it goes.  You and your husband are in my prayers.  

P.S.  You should really start keeping copies of all your husband's medical records.  Ask your doctor for a copy of the PET scan report along with any other scans or tests he has done.  Blood work is also good to keep.  

[Eileen611]

Thank you so much....I think I'm at the point where what is unknown is somehow worse than the knowing!  I am able to stay calm and collected, optimistic when we are at home together but here at work or alone, I just go to pieces.  I keep telling myself this is not a death sentence but I have moments where the fear just takes over.  I am in awe of your optimism and am so grateful that you are doing so well.  You have been such a tremendous source of information and comfort and I am so indebted to you!  I will post again once the PET scan is done!  Thank you for your prayers and I will keep you in mine as well!   Eileen

[Eileen611]

PET scan done, now on to the small bowel series scheduled for Thursday.  Oncologist appointment is scheduled for Nov. 28.  So right now we are at the hurry up and wait stage.  Just wish we had the pet scan answers.  I guess the doctor wants to gather all the test results before he sees my husband.  I have calmed down quite a bit, surprisingly, but I'm not sure why since I can cry at the drop of a hat.  I keep telling he will be ok, he will be ok....like a chant that goes on in my head constantly.  I am going to the bookstore after work to buy the book you recommended.  Just want to say thank you again....you are an inspiration and I am so grateful to have you on my side!!!

[Ken_PA]

When I was taking care of my father during his lymphoma, I would always ask the testing center to mail a copy of the report out directly. That way, I wouldn't have to wait for a doctor to supply it. If the center refused, I'd never take my father there again. That happened only once.

(Although AFAIK successive PETS should be done at the same place on the same machine.)

You can post the relevant text here if you like. Good luck.

[Mochadelicious]

Oh yes...the hurry up and wait phase.  How I remember it well.  They should just call it the torture stage really.   I too had moments where I felt earily calm and other moments where I'd start crying at nearly anything.  I still do to some degree, but I have a lot more calm moments now.

I think the book will be very helpful for you.  I was able to pick up a gently used one at Amazon.com for less than $5.  Once I started reading it, I couldn't put it down.  I was hungry for answers (as I'm sure you are too).  

At the hospital where I get my scans, I can request via the radiology department copies of my scans for my own records.  It usually takes them a day or two to get them ready, but they will actually put it on a disc for me and give me the paper report too.  I can actually pop the disc into my computer and see my scan.  Your hospital may do the same, but your husband may have to sign a release of information form first.  He may have already done that, but if not, make sure he lists you as someone he gives permission to release information to.

Well good luck next week.  The wait will probably be difficult, but maybe the hustle and bustle of the upcoming holidays will help keep your mind busy.  Keep me posted when you get the results, and if there's anything else I can do to help please let me know.  

You are what I consider "the good that has come from my cancer" because without people like you, I wouldn't be able to pay it forward.  If I can't pay it forward, why the heck did I get cancer?  It's the only logical reasoning I have.  :-)

[Eileen611]

I wish i could wake up tomorrow and find this was all a bad dream.  How , why did this happen?  He's a good man who has been through so  much in his life, why him ?  His children adore him , he has 2 beautiful grandsons, and he's been the love of my life since I was 13.......why?  Why him, why you, WHY?? Not a good day today, so hard to stay upbeat, optimistic. The wait for results is torturous, yet part of me doesn't want to know.  I so admire your outlook, your understanding, your kindness....thank you for "listening" to my rant.  Tomorrow will, hopefully, be a better day.

[Eileen611]

You do more than pay it forward...you are a lifeline for me and I am so appreciative!  I don't think there is any reasoning behind who gets cancer and who doesn't.....I have been praying so hard for answers and there just aren't any.  So now I will continue to pray but will also pray for a cure!  

[Mochadelicious]

I've had many of those days myself.  I hope today is a better day for you.  They say God doesn't give us more than we can handle, right?  So I took that as God must think I'm a much stronger person than I ever gave myself credit for.  Now I have this sense of strength that I never had before.  If something challenging comes my way, I tell myself "hey, if I can beat cancer then I can do this".   It really has put things in perspective.   I know you aren't the one with cancer, but because you are so close to someone that does, it's just as tramatic.

By the way, how is your husband handling all of this?  It's very important to talk about your feelings together.  It's pretty common to both clam up about how eachother is feeling because we always want to present ourselves as strong and positive towards the other person and never show fear or anger.  It's a very strange dynamic that can happen between a couple and  a cancer diagnosis.

Keep your chin up Eileen and know you are not alone in this.  

[Eileen611]

Last night we were awake until 2:00 in the morning talking.  He is not much of a talker but last night he let alot out.  He is afraid he is going to die and  not see our grandchildren grow up.  He is afraid of the treatment, we are just terrified of the unknown.  I saw an article last night regarding MCL (I think that was it) lymphoma and it scared me to new heights.  It says it starts in the gastric area and that where they found his lymphoma and that it doesn't really respond to treatment.  So here I sit, sick to my stomach and more scared then I have ever been in my life.  The doctor has the final pathology report, and the PET scan results but will not give me any answers but is supposed to call my husband this afternoon.  The wait is killing me because now I think it's the worst possible scenario.  I am praying to God for strength for my husband and for me so that I can help him somehow, be strong for him.

[Eileen611]

Ok..here goes. Pet scan showed only the area in the intestine where the initial biopsy was taken. Showed a small spot on liver but he has had that same spot for years.....a fatty something.  Otherwise pet dcsn wwas clean. My initial reaction was joy. Then we were told the pathology report states that biopsy showed " charateristics"  of mantle cell lymphoma. There goes the joy. Still need to have small bowel series done tomorrow to "rule out" amy areas there. (Wouldn't the pet scan show any problems there?). Then we see oncologist on nov. 28.  Dr said they can't stage it yet. Isn't mantle cell the  worst one to have? My husband thought he was ok and initoally, i thoight the pet scan lookimg pretty good was also a plus.  Back to the unknown and fear.  The joy is gone.

[Mochadelicious]

I must say the PET scan does sound very promising.  I'm not really understanding why they are doing the small bowel series if they didn't see anything on the PET in that area, but maybe they just want to be sure.  

Actually, my next door neighbor has Mantle Cell lymphoma.  His was pretty aggressive and in several areas of his body.  He ended up having a stem cell transplant using his own stem cells.  A SCT is a pretty aggressive treatment all in itself, however using your own stem cells is less risky than using someone elses stem cells because you're not introducing anything foreign into your own body.  The kicker is sometimes a SCT using someone elses stem cells may have more of a chance for a cure, but it is much more riskier to do.  Mantle cell falls somewhere between indolent and aggressive but the way I understand it, it reoccurs like other indolent lymphomas.   BTW, my neighbor is currently doing very well now and his scans are clean 1+ year out.

Just going by the PET scan alone, it sounds like it is only in one spot, possibly stage 1.  If that's the case, localized radiation may be an option for him.  Did you husband have a bone marrow biopsy yet?  This too affects the staging of disease.  They will probably want to do that too so they can verify if it's in the bone or not.  If it's in the bone I don't think radiation would be an option.  The pathology report will determine the grade, or how aggressive the disease is behaving.  

Ken, our other CL on this board, probably knows quite a bit more on Mantle cell because this is what his father had.  He may be able to shed some more light on the subject.  Ken, if you're reading this...any comments?

I'm glad to hear you two had a good talk together.  You are a team fighting the same disease and it's good to know how the other is feeling.  And Eileen, it would be good for you to find someone close to talk with.  You are your husband's support but someone needs to be supporting you too.  And of course, your extended internet family is here for you too.  :-)

You can do this.  




      

[Eileen611]

Again, you are the voice of reason for me!  I thought the same thing about the small bowel series. No bone marrow biopsy yet. Maybe the oncologist will order that?  My daughter read about stem cell transplants and a friend of a friend had one and is considered cured.....such a wonderful word!!  i pray that's a word we will all hear one day!  I also spoke with my best friend and my sister-in-law which helped. I have to take this one day at a time, be grateful for any good news and just keep pushing forward. My husband and I both need to come to terms with this and keep living our lives.  I am so thankful I can come here to vent, for info, for reassurance!  Meltdown is over....time to stop feeling sorry for myself and him and get on with it!! Thank you a million times over!!

[Mochadelicious]

I bet the oncologist will order the bone marrow biopsy.  Just to prepare you, it took some time (several weeks I think) to get staged and graded.  After he is staged and graded, his oncologist will probably suggest a treatment plan.  At that point, you might want to consider asking the oncologist for a referal for a second opinion at Sloan-Kettering.  Cancer doctors are very used to being asked this and shouldn't even blink an eye at it.  If they do, find another doctor.  We're not talking about a hang nail here.  

There are so many different treatment options out there like chemotherapy, localized radiation, stem cell transplants, and targeted therapies such as monoclonal antibodies, immunoconjugates, proteasome inhibitors, and Histon Deacetylase Inhibitors (HDAC's).  On top of this, scientists are continually examining new uses for established agents and are also exploring how to create newer versions of existing therapies to make them more effective and less toxic.  It really is amazing what science is doing right now.  

And you are not feeling sorry for yourself, far from it actually.  If you didn't feel this way I'd say you didn't have a pulse.  But it is good when you decide to pick yourself up by your bootstraps and decide to think positive thoughts and take on a fighters mentallity.   (Not to say you won't slip back into negative thoughts sometimes.)  

There is a saying I gravitate to whenever I start to get down.  It goes like this:  Without faith and hope you have nothing, but with it you have nothing.  I actually have a plaque that says this and it sits displayed in my living room.  There are many positive saying out there and maybe you will find one that helps you get through the rough moments.  You also might consider taking an occasional Benedril at night to help you sleep.  

And...as always, I'm happy to help.  

[Mochadelicious]

Oops...okay, I shouldn't be up so late, it's affecting my brain.  The saying should be: "Without faith and hope you have nothing, but with it you have everything" (not nothing).  

Tee-hee.  That was kind of funny.

[Eileen611]

I love your optimism and positive thinking!  Right now he is in the process of having the small bowel series. I am again praying it is clean and am hopeful since the pet scan didn't show any hotspots in that area at all. I would think if there was something there, it would have shown on the pet.  My hope is that this was caught early enough that there is the possibility of wiping it out right away with chemo or whatever is necessary. I realize mantle cell is very aggressive but hoping the early diagnosis is on our side.  I know there is no cure but there are times of remission.....my intent is to keep him in those periods.  We will do whatever is necessary and Sloan-Kettering is the next step after the oncology appt after Thanksgiving. We have much to be thankful for......this could have been diagnosed much, much later. Hopefully the early diagnosis is on our side.  Bless you and your family, Mocha.  I hope you realize the good you do here!!!

[Ken_PA]

Hi, since MSK in Manhattan is in your geographic range, I'd suggest as an alternative Dr. Andre Goy in Hackensack, NJ. I believe he's a founding member of the Mantle Cell Consortium - which was established to overcome MCL's "orphan" disease status.

Some comments on him:
http://www.ratemds.com/doctor-ratings/142950/Dr-Andre-Goy-Hackensack-NJ.html

The MCL Consortium: http://www.mantlecelllymphoma.org

He gave an MCL talk a few weeks ago which should show up in the archives here: http://www.lls.org/#/resourcecenter/pastprograms/lymphoma/

I'd think the thing to zero in on is that your husband is a rare case, because of the MCL having apparently started in the GI tract instead of in a lymph node. That might or might not affect treatment and prognosis. E.g., can the Rituxan antibodies penetrate well to there? Or maybe it might even be suitable to inject the Rituxan directly into the affected area - which is rarely done.

Radiation is particularly effective against MCL.

At this point it's a mystery why you were initially told that it's a low grade lymphoma.

One good thing to look forward to is being told that his is not the 'blastic' subtype. I hope you get that news,

There are even some cases of MCL that are not aggressive for a long time. I ran across this man's blog who has gone 9 years without treatment: http://livingwithmcl.com/  But that is very unusual - and lucky for him.

[Eileen611]

Blastic is very bad, isn't it???  When will we get that information, after the bone marrow??  The dr. said the biopsy had "characteristics" of mantle cell lymphoma so I am assuming that's a definitive answer.  Could they be wrong?  So many unknowns!!  We are supposed to get the small bowel series report today....but I keep thinking that if the PET scan was clean except for the one spot, wouldn't  this be clean too??  I am so terrified right now....blastic, rare case, God, I am sick to my stomach!!  Wouldn't the lymph nodes eventually become swollen too?  Maybe it's very early and there are some strong therapies to knock it out from the beginning.  I read that there is a chemo regimen that is very effective against mantle cell, also that stem cell transplant may be an option.  It also said that the Rituxan is very effective against MCL.  I am actually shaking right now.  

[Eileen611]

Blastic is very bad, isn't it???  When will we get that information, after the bone marrow??  The dr. said the biopsy had "characteristics" of mantle cell lymphoma so I am assuming that's a definitive answer.  Could they be wrong?  So many unknowns!!  We are supposed to get the small bowel series report today....but I keep thinking that if the PET scan was clean except for the one spot, wouldn't  this be clean too??  I am so terrified right now....blastic, rare case, God, I am sick to my stomach!!  Wouldn't the lymph nodes eventually become swollen too?  Maybe it's very early and there are some strong therapies to knock it out from the beginning.  I read that there is a chemo regimen that is very effective against mantle cell, also that stem cell transplant may be an option.  It also said that the Rituxan is very effective against MCL.  I am actually shaking right now.  

[Eileen611]

Sorry Mocha, I meant that post for Ken!!  But would like you input as well.

[Ken_PA]

I'm sorry, I didn't mean to make you feel worse. But you have been reading all these related things anyway.

My guess at the moment is that he will get radiation to a very specific area. That will most likely kill the MCL better than any chemo. So in a way, having the MCL in the GI tract might be better - though I'm just guessing because I haven't heard of primary MCL on the GI tract.

My father had received radiation therapy to the area of his temples, and the MCL was completely wiped out from there. The treatment was very powerful.

If it were me, I'd call Goy's office (pronounced Gwah as in French) and ask how many patients with primary GI MCL he has treated. Then the same at MSK.

[Ken_PA]

The reason I mentioned the blastic subtype is because your husband most likely does NOT have that. The blastic subtype has cells that are larger, so that would have turned up in the preliminary assessment in just looking with a microscope. So in a way, that is a little bit of good news heading your way - the news of NOT having the blastic subtype.

Also, I think you're quite right in thinking that the small bowel series  will not show anything, since the PET was good.

Since you also haven't mentioned that his CBC (Complete Blood Count) was not a concern, that would tend to indicate that his marrow is okay. When a lymphoma gets into the marrow, it crowds out the normal cells that produce blood cells like red blood cells, white blood cells and platelets. But your husband's counts are apparently okay, so that's a good sign.

Yes, it was also very lucky to get the early diagnosis.

It's also true that the regular R-CHOP regimen has a high response rate - the majority of patients get a complete remission.

[Eileen611]

Thank you for the clarification on the "blastic"...I would hope they would have told us that based on the entire pathology report being back.  He hasn't had a CBC yet, but he did have 2 different blood tests done prior to having that colonoscopy 2 weeks ago and they were clean, as was the CAT scan at the same time.  I hope the early diagnosis is in our favor....MCL sounds so aggressive.  I have printed all the info on Dr. Goy (he sounds wonderful!) and I am putting in a call today!  Thank you for sharing your knowledge.  I see from your profile that you lost your dad....my heart goes out to you.   Eileen

[Ken_PA]

quoting--> The dr. said the biopsy had "characteristics" of mantle cell lymphoma so I am assuming that's a definitive answer.


Nope, I don't think it is definitive at this point. Diagnosis is not always a cut-and-dry situation. In fact, some cases don't get correctly diagnosed for a long time. The process typically goes like this:

1) a biopsy is taken and a pathologist looks at slices under a microscope. They look for unusual shapes, etc.

2) they next look at "surface proteins" on the cells. A B-cell is kind of like a beach ball, except the surface isn't smooth at all. There are many kinds of proteins strands woven into the surface, like yarn or threads. They can get an idea of what lymphoma is present by identifying which proteins are there, by using a process like "flow cytometry".

3) they next want to look at what gene mutation is present, in a process like "FISH" (Fluorescence In Situ Hybridization).

So it is very arduous and takes some days to complete the process.


My approach was to learn as much as possible, so that the valuable and limited time spent with a doctor wouldn't be used up on simple questions. After that, I figured that the best thing to do was the choose to believe the best. Believing the worst doesn't help anything anyway - and besides, sometimes things really do turn out well :)

Maybe the fact that it started in the stomach means that his prognosis is much better than for the usual MCL patient.

I remember one patient (he was from England), that had the anti-MCL drug called Velcade/bortezimib. He had such terrible stomach pains that he was tempted to stop the treatment. I kept saying to him that probably means it's working really well - and that's how it turned out. The MCL was completely gone from his GI tract.

So whether they use radiation or surgery or a drug, it's quite possible that it will be effective.

[Ken_PA]

Feel free to keep posting any questions, comments or anything that you like, Eileen.

Btw, another word that you might encounter for 'blastic' is 'blastoid'. But it seems clear at this point that your husband doesn't have that.

Also, if he ends up having the chemo drug called Adriamycin aka doxorubicin. I'd have some advice on making it less harsh for him.

[Eileen611]

I am praying you are right, that the dr would have said that word blastic, if it was.  So much still unknown.  But I so much appreciate your words of wisdom and optimism too!!  I have been reading so much and trying to gather information...it seems to me that at some point, MCL was considered the worst lymphoma that you could possible have.  Now that doesn't seem to be the case.  My head is spinning from trying to process all this!!  I would be very grateful for any advice you can give us in the process of this!  So would you assume the dr would have said blastoid?  I don't know why I'm so nervous over the results of the small bowel series since the PET was pretty clean.  Again, many, many thanks!!  Eileen

[Ken_PA]

I remember for myself what it was like trying to quickly absorb all the medical info. It would be hard enough under normal circumstances, but with the stress it can be dizzying.

wrt blastic: some time after initial (and correct) diagnosis of blastic MCL, my father had another biopsy of a different area. The initial report said "probable DLBCL". For that type of lymphoma, the "LBC" part means " Large B-Cell". I figured that was an incorrect initial Dx, because the blastic type is also large and so the large blastic was mistaken for a completely different kind of lymphoma. And that's how it turned out, the Dx of DLBCL was changed to blastic MCL after the biopsy sample was sent out for the further testing by flow cytometry and FISH.

So that Dx was resolved quickly and correctly - but I remember another case where someone was diagnosed with MCL for more than a year, but then it turned out they really had a type of leukemia called CLL. Usually the Dx is straightforward, but sometimes not.

Still, I think you can forget about the blastic designation as applying to your husband. They would likely have seen the large cell size.

wrt to the series: I'd ask the x-ray tech what they see. Sometimes they give useful info, though they're not really supposed to.

You're doing a wonderful job. Try to also take a little time in the following weeks to unwind from your own stress - and don't end up getting sick yourself. It's called "caretaker syndrome".

[Eileen611]

I'm afraid to trust that the dr would have said it was blastic!!  He did say it would take time to stage it though.  We're supposed to get the small series results today some time.  I'm actually nauseous just thinking about it....which seems to be the case every day.  Can't eat at all and constantly nauseous. Anyway, I keep saying good PET scan, good small bowel series....kind of like a mantra!

[Ken_PA]

To my mind, staging is not such a big deal in lymphoma as it is in other cancers. The lymphatic system is like a series of hiways throughout the body. So the bad cells can travel around in that way. It's not the same as the metastasis that you hear about with other cancers.

Besides, you already know that the PET showed no other sites. So really what you want to know now is how aggressive it is, from that one spot. There are some so-called "markers" in blood tests to look at, but they aren't 100% reliable anyway. The other way is to observe the "behavior" - in other words how much and how fast it grows.

So unfortunately there will be a lot of waiting.

And that's a good mantra :)  I expect you'll have good news on that soon.

[Eileen611]

I am terrible with waiting....always so impatient!  We still haven't heard from the dr but reading what you posted calmed me down alot. My husband also picked up his referral for the oncologist today and it said "mantle cell lymphoma".........nothing about blastic or blastoid.  If it was blastic wouldn't the dr have written that??  I'm grasping at straws here, I know. I am praying it's not!!!   Is it possible that this is stage 1 since it's only in 1 area so far?  So many questions running through my head.  Thank God Mochadelicious and you are here.....it's very comforting to have someone to "talk" to!

[Ken_PA]

yes, I'd say that he is a Stage 1 or equivalent, because there is only the one known site.

and he almost certainly does not have blastic   :)

[Eileen611]

Thank you.....I will sleep a little bit better tonight!  Is this a possible "wait and watch" scenario ?  I don't think I would be comfortable with that.....wait for what?  For this to just explode all over his body and  then what?  I want it gone now!!  What is the protocol for that?

[Eileen611]

You have no idea how compassionate and helpful you and ken both have been. If it wasn't for this site, I would be a useless mess!!

[Mochadelicious]

Hi Eileen,
Just checking in.  Sorry I haven't posted anything today.  I've been at work and doing lots of grocery shopping in preparation for Thanksgiving...

How you doing, girl.  Are you hanging in there?  Just wondering what you found out on the small bowel series?  Any news yet?  

To try and answer your last question...I don't think watch and wait is usually an option for MCL.  I did a little reading in a book I have that was put out by the Lymphoma Research Foundation this year and it says this: "Frequently, patients with Mantle cell lymphoma have many lymph nodes, one or more organs and bone marrow involved.  The gastrointestinal tract is a very common extra-nodal site of involvement.  Mantle cell lymphoma may initially follow an indolent, or slow-growing course but may transform early into an aggressive disease and is, therefore, often treated as an aggressive lymphoma."  

With that being said, it sounds very possible that he may have caught this very early and therefore my guess is he will have to do some localized radiation and/or possibly some chemotherapy with Rituxan.    

[Mochadelicious]

If you have a decent internet connection, I highly suggest you check out these webcasts from the LRF website and presented by lymphoma research doctors.  There are many webcasts to choose from so just sit back, watch and listen.  They're incredibly informative.

http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=6300123#DiseaseSpecificWebcasts

[Eileen611]

Thanksgiving has always been my favorite holiday so I am determined to make it a happy one for my family and try, just for a few days, to put all this fear and sadness aside.  I am very anxious to see the oncologist and get started on some form of treatment, anything!  Ken mentioned a doctor in New Jersey who is doingg some good things with MCL and we will also be going to Sloan-Kettering (we live on Long Island).  The dr did not call with the results of the small bowel series yet.......I realize how busy they are but I wish they would remember there are faces and and families behind all this!  Thsnk you for the links.....I will definately be watching!  I am still praying this is not blastic....Ken made me feel more confident about that since it was never mentioned or written on the oncology referral so I am clinging to that hope.  My husband has become very calm about all this.......wants to do whatever needs to be done and get on with our lives (whatever that new normal may be).  My dream is that God allows us to share our 50th anniversary in 15 years.  

[Ken_PA]

Dr Leonard at Weill Cornell in NYC has done some work regarding indolent MCL.

(for the record, here is the free full text: http://jco.ascopubs.org/content/27/8/1209.long )

here is a regular article on the subject:
http://www.hematology.org/Publications/Hematologist/2009/2124.aspx
"Mantle-Cell Lymphoma: Not Always Aggressive"  2009

Remember that aggressive treatment chemo itself (like HyperCVAD or maxi-CHOP) can cause harm, from reducing immunity, to permanently damaging the heart or nerves, to causing other cancers, to causing death (especially from stem cell transplants).

Maybe your husband has the slow growing kind and go without any harsh TX for years, or maybe take a milder pill drug (like lenalidomide).

Here's what I would do: get the results of two blood tests for markers: Ki-69 and p53, then decide only after knowing if those two indicate an aggressive MCL. They aren't perfect indicators but they give some clue. If he has indolent MCL, then I'd probably go with Leonard. Some data shows that 30% of MCL is indolent. There is also evidence that early treatment does not give any benefit.

Goy might favor initial aggressive TX such as stem cell transplant followed by rituximab. That might be the way to go if the MCL is aggressive in its behavior.

It's all very inconclusive. There is unfortunately no way to be sure what to do.

[Ken_PA]

and also, while MCL diagnosis can get confused initially with DLBCL or later with CLL, the way to know for "sure" is by finding one of these two in advanced testing:

1) cyclin D1
2) t(11:14)

You 1st of all want to make sure that diagnosis is done by some pathologist specializing in lymphoma, who won't get confused between types.

The presence of the blastic subtype usually occurs only in later, advanced MCL.

Yes, it all can be very confusing but that's because not everything is known for sure... sorry to say.

But the thing I'd hope for is that he is indolent. The absence of enlarged lymph nodes might be pointing to that.

[Eileen611]

Once again, I am grateful for your insight, as well as Mocha's!  My hope is that, due to the fact he has no other symptoms, he is in the early stages of MCL but that it he will be treated right away. I have every intention of seeking a second and even third opinion and will add Dr. Leonard to the short list.  For now we are going to celebrate Thanksgiving and try to put aside this insanity and fear just for a few days.  You and Mocha have been so wonderful.......honest, insightful and compassionate and I am thankful for the both of you being here to talk me down from the crazy heights I go to.  

[Ken_PA]

yes, have a nice Thanksgiving and relax a little. Good luck to you both :)

[Eileen611]

Happy Thanksgiving to you and yours too!  Praying we will have much to be thankful for.  I am trying so hard to stay optimistic.

[Mochadelicious]

Happy Thanksgiving, Eileen.  I agree, put it on the back burner for a while and enjoy your family.

[Eileen611]

Hubby had a bad day today......very scared and very angry.  I'm surprised it took this long.  Tried to be upbeat and reassuring, told him we will somehow beat this into remission (would love to change that to cured) and get on with our lives and our new reality.  On to Thanksgiving.  Hopefully we will have a treatment plan in place by Christmas!!  Hope that's realistic.  My thanks to you again for being a lifeline and giving me hope.

[Eileen611]

Small bowel series "ok" to quote the doctor......should I take that as it is clean? Wouldn't he have to say if he saw something?    Then he said he wants to do 1 more test to complete his look at the small intestine, video capsule something or other. Am I over-analyzing every word he says or is he being extremely thorough??   This info was all delivered via message left on our home phone.  Anyway, can't wait until the oncology appt monday. I want answers!  Still no usual symptoms.....no fevers, night sweats, swollen nodes, fatigue.  Still hoping this is an indication that it is in a very early stage. Want to be DONE with this!! Get treated, pray for remission, get on with life. I know......I'm asking for alot.  We promised each other we were goig to let this all go for a few days and enjoy Thanksgiving and that's what we're going to do.  Bless you and your families....enjoy all we have to be thankful for!!

[Mochadelicious]

Eileen,
That is great news about the small bowel series.  Yes, it does sound like his doctor is being very thorough, but that's a good thing really.  It sounds like he'll get to swollow one of those video capsules shaped like a large pill.  That's pretty amazing.  This is the first I've ever heard anyone use this technology with lymphoma.  

I'm still a believer that this is early stage the way it's sounding.  Your oncologist appointment on Monday should help clarify a lot.  Might I recommend that you and your husband write down all your questions for the oncologist so nothing gets missed.  

Enjoy your Thanksgiving and remember the only thing you can do is take this one day at a time.  

Blessings to your family.

[Eileen611]

Thanks Mocha, you always lift my spirits.  I don't know what I would do without this forum and your help!  I am feeling better about things, and I can actually see that we could have a long future together with good things yet to come.  This will be a part of our lives forever but we will learn how to live with it, without it consuming us.  I think we will get there, especially once we have answers.  Thank you again!  A blessed Thanksgiving to all!

[Eileen611]

Here's the latest....we went to the oncologist on Monday.  He read all the test results and nothing in them indicated any type of cancer, lymphoma, etc!!  However, he did think the pathology report is correct but had it sent out to another pathologist to be sure.  We are waiting for those results.  My husband is scheduled for a bone marrow test on Monday....the dr thinks it will come back as not being in the marrow, based on the blood results from tests he took Monday.  If that's the case then we are extremely lucky to have caught this so very early (per the dr.) and he believes it to be curable because it's so early.  The downside of this is that he wants Bill (my husband...would have been nice to let you know his name earlier!), to have chemo, R-Chop to be exact.  It would be 2 sessions, every 21 days for 6 months.  Bill is very comfortable with this dr because he's gone to him for a few years now for hemacromatosis (sorry for the incorrect spelling on that one!).  We would like a second opinion but he is being so stubborn....I have to work on that because I feel it's extremely important to get one.  I'm concerned that the chemo is too extreme a treatment so early.  Please...I would love your opinion on that.  We are so very grateful for the early diagnosis, but I want to be sure we do the right thing.  Thanks so much again....hope you all had a wonderful Thanksgiving!

[Mochadelicious]

Hi Eileen,
I've been thinking of you this week and wondering how you two are doing.  First off...wow, what a wonderful thing to have caught this so early.  That's fantastic.  So let me try and get this straight.  Where exactly is the lymphoma?  They took the biopsy from a thickening of  his colon, right?  But they didn't see anything on the PET, the small bowel series or the test where he swallows the little camera?  Even on that spot on his colon?  But his pathology is coming back as MCL?  It sounds like the pathology picked it up but because he caught it so early none of the other tests are picking it up.  I bet the bone marrow will be clean too.

R-Chop is what I had too, Eileen.  6 treatments every 21 days.  Because they are treating this with the intent to cure, it's probably good to be aggressive with it.  A second opinion certainly wouldn't hurt, but ultimately that has to be Bill's decision.  Maybe you can convince him that getting a second opinion, if anything, would put both your minds at ease that you're on the right treatment course.  Going to a big research facility, where they specialize and do in depth research on MCL, would be quite adventatious in my opinion.  All I can say is getting a second opinion was a huge relief for me and my family.  Just knowing that I had two doctors in agreeance with my treatment plan was very reassuring.  

I was a little afraid of insulting my doctor when I asked for a second opinion, but he was actually very acomodating and helped to set up the referral.  I think they are used to getting that request.  Now I'm of the opinion that if they do get insulted, they need to put the patient before their ego and it's time to find a new doctor.  

One thing you might ask about is localized radiation.  If they truly believe you caught it so early and it's only on one spot on the colon, then radiation might be a reasonable option.  

Keep us posted Eileen and if you have any more questions I'd be happy to help.  By the way, I had a very nice Thanksgiving and I hope you did too.  

[Eileen611]

We had a very nice Thanksgiving....we were able to put this all aside and just enjoy the day and our grandson's first birthday that weekend!  I haven't been on here for the last days....I just needed to step back for a bit, but I don't know why!  Anyway, glad to be back and speaking with you!  Yes, we are extremely lucky to have this caught so early!  The oncologist felt the video camera test was not necessary since everything else was clean.  I haven't mentioned the second opinion again....I want to give him some breathing space right now and then I will touch on it again.  He is scared, very scared of the chemo, more so the side effects but the doctor did say there are meds to help control nausea, fatigue, etc.  He is also very concerned about being able to work.  I don't know how we'll deal with it if he can't but we'll find a way.  That, to me, is not important at all.  The idea that he can be cured....now that is my goal, my focus.  Again, I want you to know how thankful I am for you and being able to "speak" with you on here.  You have been such a tremendous source of not only information, but comfort and inspiration!  

[Ken_PA]

I would definitely go to a center that has experience with the kind of MCL that originated in the GI tract - precisely because that is rare and it might or might not respond best to standard treatment. You can't know unless you talk to a doc who has knowledge of that. Even then no one knows for sure, because there have been so few cases.

If he does get CHOP-R, I'd look into using melatonin and Co-Q10 to lessen heart damage from the doxorubicin aka adriamycin. Ask whatever doc you see if they object (they'll likely say "it can't hurt") and it is worth the try.

An alternative to doxorubicin is Doxil, which is milder - but that is one of the drugs that has been in short supply lately. Doxil can be just as effective yet  can even result in lesser hair loss - so it'll do less hurt to the whole body.

Regarding early aggressive treatment (and there stronger other ones like HyperCVAD and maxiCHOP):

1) some say it will eradicate any traces
2) some say that just wipes out the easy cells and the remaining worse ones are left to take over

In the end there's no way to be sure but I'd flip a coin and go to Goy or Leonard.

Good luck.

[Eileen611]

You touched on a very big concern of mine when you said that it could eradicate it or leave room for the worst of it to come barreling through!  This is why I feel so strongly about a second opinion.  Mocha also mentioned localized radiation,also something I want to talk about with the dr. The bone marrow is scheduled for Monday so I will bring up the alternate drugs you mentioned as well as a referral to Dr. Leonard. Again, my thanks to you for all the information you so willingly share!!

[Ken_PA]

okay, but keep in mind that melatonin and Co-Q10 are over-the-counter and might lessen harmful effects from the R-CHOP

but Doxil is indeed the alternate drug

[Eileen611]

I will definately keep those in mind....again, thanks!  He had the bone marrow test done Monday so now we wait, and pray, that it isn't in the marrow.  The dr feels not, because his last blood work showed no signs a week ago. Still praying for a stage 1 prognosis, but I am almost afraid to hope.  Will post again once I know the results.  I hate this hurry up and wait stage!!!  

[Mochadelicious]

So how did his bone marrow test go?  I've only had one so far but my doctor did a good job keeping the pain at a minimum.  I would bet it comes back clean since his blood work was clean.  

Yes, this waiting stuff is for the birds isn't it?  For me it was probably the hardest part.  I wanted to hurry up and get done with the diagnosing and staging so I could get going on the treating and getting better.  And remember, sometimes hope is all we have, so don't be afraid to use it.  I'll be waiting to hear back from you, Eileen.  Take care.

[Eileen611]

Bill did well during the bone marrow though the anesthetic injections were not pleasant.  Still waiting for the second pathology report too.....I am so nervous about that too.  Yet there are days when I think I just zone out and live in this bubble where I believe the chemo will kill this disease and he'll never have to go through this again.  Almost like being numb.  I do have hope and so does he........I can't be any other way or I will just lose it and he needs me to be optimistic and upbeat.  I can't let the fear take over. I just pray the bone marrow is good.....it all hinges on that.  So for now we are focusing on Christmas and being thankful that this was caught so early.  After the holidays, the hard part begins but he will get through it and then we keep moving forward with our lives. I guess some would say I have my head buried in the sand. Thanks for listening Mocha.

[Mochadelicious]

Hi Eileen.  I hear ya...some days it's just easier to go numb and bury our heads in the sand.  I think it's how we cope when we just need a break from it all.

I'm still keeping my fingers crossed that Bill's bone marrow is clean.  Fill the next few weeks with lots of holiday cheer, close family and maybe some spiked eggnog.  :-). Merry Christmas.

[Eileen611]

Hope you get this Mocha!  I haven't been able to post on this site for weeks now and have no idea why.  Hope all is well!

[Mochadelicious]

Hi Eileen,
So good to hear from you!  I hope all is well with you and Bill.  I am still doing well myself...still doing maintenance treatments every 2 months but I should be done with that by the end of the year.   Sorry to hear you're having a hard time getting on Medhelp.  Are you able to private message?  

[Eileen611]

Can't private message....I don't kniw why.  I couldn't even post here either so I have no clue what the heck is going on. First I thought maybe I was banned for some obscure reason or maybe blocked. Can't figure it ou.  But I am so glad you are doing well and very glad to hear from you!

[Mochadelicious]

That is strange.  I haven't been able to get on Medhelp either, but that's because I have a flakey Internet connection.  So, if It takes me a while to answer you that is probably why.  

You must have got on long enough to post on here, so my guess is it's a problem on MedHelps end.  Let me know if you continue to have issues and I'll forward it to tech support.

How is Bill doing?  Has things gotten a little easier with time?  I keep you both in my thoughts and prayers.

[Eileen611]

I am so happy to hear from you!  Also very happy you are doing so well.  I think of you often.....Bill is doing ok.  Next visit to Sloan is on Tuesday so we're getting nervous.  So far no apparent symptoms, but he's having a PET and CAT....a bit unnerving!  But I figure we already know the worst so how bad could it be.....it's inevitable it will start becoming aggressive, just a question of when.  I am praying it's not before my son's wedding in September.  Take care, Mocha, I always keep you in my prayers too!

[Eileen611]

Hi Mocha, really miss speaking with you.  Hope all is well.  Went back to Sloan Kettering on Tuesday, so far so good.  Still in the "watch and worry" phase.   Still can't post messages or into inbox.  Don't have a clue as to why!!  

Eileen

[Mochadelicious]

Hi Eileen!
I'm so glad that all went well at Sloan.  What a relief I'm sure.  So how often is Bill being scanned?  Hopefully he can keep this beast at bay for a long time.  

I'm doing pretty well myself, although I have a decision to make soon.  Back in 2010 when I was diagnosed, the doctors found that my thyroid was very enlarged on one side.  At the time they believed it to be benign since it showed a small amount of activity on the PET.  My ENT recently had me do an ultrasound of it to see if it has grown.  It has grown a little and it's pushing against my trachia.  The doctor is still pretty confident that it's not cancerous, but he thinks it would be wise to do a biopsy just in case.  He is recommending either a small needle biopsy or go ahead and have that half surgically removed and biopsied.  Right now I'm leaning towards having it removed since a needle biopsy takes such a tiny sample and could easily miss spotting a malignancy.  Plus, I've read that anything over 4 cm should be removed rather than needle biopsied.  Mine is about 3.8 cm.  it's not a rush to do this so I thought I'd talk to my oncologist to get his thoughts on it too.  

That is so strange that you still can't post a message.  I'll look into contacting MedHelps tech support for you.  Can you explain what is happening or what messages you are getting when you try to post?  I'll forward it on to the powers that be.  

It's so good to hear from you Eileen.  Thank you for keeping in touch.  I always look forward to hearing from you.

[Eileen611]

Still can't post in messages or notes and tech support has no idea why.  What did you decide to do as far as the biopsy?  What did the oncologist think was the best way to handle this?  The fact that your doctor doesn't feel it's cancer related is reassuring but this still must be unnerving for you. Almost like a "now what" type of feeling.  How are you doing other than the thyroid issue?

I guess you have already gone on your vacation.....I hope you had a wonderful time!!!

Bill had his 3 month appointment at Sloan last week and all is well....no changes, still "watch and wait".  I am extremely relieved. The doctor also said that huge strides are being made in the treatment of MCL....he was very upbeat about it which also gave us alot of hope for the future.  

Do you post on the LLS forums?   I am on there often and can post there without problems.  Also, my e-mail address is ***@**** .  I miss being able to "talk" with you!  Please let me know how you are doing!
I always look forward to hearing from you, too!

[Eileen611]

Guess you can't post email addresses!  I thought that might happen.

[Mochadelicious]

I tried to private message you and it said I couldn't because you are blocked?  This is so wierd.  Did the techs still looking into it?  I wish I was more tech savy so I could help you.  I have never posted on that other site, but I'll have to look into it and maybe contact you that way.  Do you have the same username?  I'd like to give you my email but as you can see, we can't do that here.  Maybe on the LLS site?

[Eileen611]

My user name on LLS is Eileen611.  I wonder why I'm blocked???  I've heard from tech support twice and they still can't figure out why I can't post!   The website is lls.org.....I was able to give my e-mail address to someone there.  We can give it a try!

[Mochadelicious]

I think I found you on the LLS site and I sent you a private message there.  Let me know if you get it.  

Yeah, it said you were blocked (and I know I didn't block you) :-).   I'm going to go to the powers that be and see what's going on.