More facts and tidbits about lymphoma...

[Mochadelicious]

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]

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]

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!  

[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]

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!

[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!

[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.