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907672 tn?1381029323
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.





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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.  
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Sorry Mocha, I meant that post for Ken!!  But would like you input as well.
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1081992 tn?1389907237
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.



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1081992 tn?1389907237
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.
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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
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1081992 tn?1389907237
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.

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1081992 tn?1389907237
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.
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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
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1081992 tn?1389907237
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".
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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!
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1081992 tn?1389907237
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.
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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!
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1081992 tn?1389907237
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   :)
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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?
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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!!
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907672 tn?1381029323
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.    
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907672 tn?1381029323
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
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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.  
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1081992 tn?1389907237
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.
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1081992 tn?1389907237
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.




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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.  
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1081992 tn?1389907237
yes, have a nice Thanksgiving and relax a little. Good luck to you both :)
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Happy Thanksgiving to you and yours too!  Praying we will have much to be thankful for.  I am trying so hard to stay optimistic.
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907672 tn?1381029323
Happy Thanksgiving, Eileen.  I agree, put it on the back burner for a while and enjoy your family.
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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.
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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!!
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907672 tn?1381029323
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.
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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!
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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!
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907672 tn?1381029323
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.  
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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!  
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1081992 tn?1389907237
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.
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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!!
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1081992 tn?1389907237
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
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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!!!  
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907672 tn?1381029323
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.
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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.
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907672 tn?1381029323
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.
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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!
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907672 tn?1381029323
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?  
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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!
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907672 tn?1381029323
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.
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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!
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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
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907672 tn?1381029323
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.
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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!

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Guess you can't post email addresses!  I thought that might happen.
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907672 tn?1381029323
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?
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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!
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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.
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