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907672 tn?1381025723

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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907672 tn?1381025723
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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Avatar universal
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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907672 tn?1381025723
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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Avatar universal
Guess you can't post email addresses!  I thought that might happen.
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Avatar universal
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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907672 tn?1381025723
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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Avatar universal
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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Avatar universal
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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907672 tn?1381025723
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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Avatar universal
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?1381025723
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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Avatar universal
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?1381025723
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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Avatar universal
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?1381025723
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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Avatar universal
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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1081992 tn?1389903637
COMMUNITY LEADER
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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Avatar universal
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?1389903637
COMMUNITY LEADER
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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Avatar universal
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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907672 tn?1381025723
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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Avatar universal
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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Avatar universal
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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907672 tn?1381025723
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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