Anyone else have Mantle Cell Lymphoma?

Hi - I'm 61 and was diagnosed with Mantle Cell Lymphoma a little over two weeks ago. I'd had swollen lymph nodes (largest 1.5cm) on both sides of my groin for 4 years with no real B symptoms (although very occasional night sweats around my neck/chest area). During those 4 years a myriad of doctors did CT's MRIs, ultrasounds, special blood tests etc. The 1.5cm node never got bigger during that time and all the doctors I saw said it didn't have the characteristics of anything malignant. In fact, when I would palpate it myself, it sometimes felt swollen and sometimes felt smaller which was strange.

My pulmonologist asked me to have the node biopsied (complete dissection) 2 months ago to rule out sarcoidosis. To my shock and dismay, the results came back Mantle Cell Lymphoma CD23+. Had a PET and bone marrow biopsy and it showed it was isolated in the right groin lymph nodes and had not spread yet. Doctor staged it at 2. It's really scary and I'm also terrified of both the treatment and disease.

I'm overseas so it makes it even more difficult to cope. The oncologist is recommending Rituximab and Bendomustine for 6 cycles (6 months), and depending on how I respond to it, possible maintenance therapy with Rituximab.

I called two Lymphoma oncologists in the US who a friend referred me to, and the one from MD Anderson said that at his hospital they probably would even offer to treat it at the moment and advise Watch and Wait only. The other oncologist also said he might recommend Watch and Wait or possibly localized radiation. But my fear is watch and wait for what? If it's eventually going to turn agressive and possibly spread, it would require more agressive treatment.

Can I ask you, is your MCL 23+ or 23-, what area of the body did they find it, and was it an incidental finding or did you have symptoms?

Hi!
I'm afraid I don't know what 23+ and 23- mean. They found it during a routine physical with blood tests. I didn't have symptoms. It has not spread to any of my organs yet.

My oncologist report says
"She does not have palpable lymphadenopathy, and the results
of the CT scan of the CAP does not show evidence for lymphadenopathy, or splenomegaly. This is consistent with stage I disease.
Reviewed the implications of mantle cell NHL, and how it can be a very aggressive tumor, and often requires aggressive high dose
chemo/immunotherapy and bone marrow transplant for long term disease control. However, for patients with early stage disease, normal
LDH levels, and no evidence for lymphadenopathy/splenomegaly or bone marrow suppression, observation is an appropriate response, as it
can take several years for the disease to progress.
If she shows progressive lymphocytosis, or develops new lymphadenopathy, will set up a staging PET/CT scan, and consider induction
chemo/immunotherapy, or referral for evaluation of high dose chemotherapy and ABMT. Because of the recent increase in the lymphocyte
count, will repeat a CBC in 3 months.

Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.

Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.

Understood. So we were diagnosed by different methods. My post-op lymph node ressection has not been fun. Fives weeks out and it still hasn't completely healed.

Regarding "watch and wait," at Stage 1 it sounds like you have time and that would be an appropriate option. With mine at stage 2 but no spread and appearing indolent, it's been suggested that it could be an option for me as well. I listened to an online seminar where a lymphoma specialist, Dr. Lauren Pinter-Brown, stated that "lymphoma may not and does not have to naturally progress from one stage to another." So I'm really really struggling with whether to begin treatment for my Stage 2 as my oncologist in Bangkok is recommending, or watch and wait as two other lymphoma experts in the US had suggested I might be able to do. It's stressing me out which I realize isn't good for my disease.

Hi @nhlbob, it’s been a while since we’ve chatted and I’ve been wondering where you are on treatment. I know you were struggling with water or not to stay in Bangkok or head to the US. Did you make any decision about that and the treatment options?

Hi Lori - thank you so much for the contact. Since we last messaged, I've had two tele med appointments with my Mayo oncologist who is absolutely great!!! I can't tell you te level of comfort I feel and the confidence I have in in compared to the doctors inBangkok. I'm flying to Mayo Rochester in two weeks. I've had a neuromuscular issue for a decade that my Mayo oncologist at wanted me to have a workup done with a neurologist there to see if the lymphoma is related or not, as that would dictate treatment. My Mayo oncologist has also requested the pathology sample from the Bangkok hospital because he wants to make sure the disease is actually mantle cell or if it's some other subtype. They'll be running FISH, genetic and next gen sequencing tests which will give a much clearer picture of things. Assuming the diagnosis is still mantle cell after the testing, my Mayo oncologist had indicated if he is certain the neuromuscular symptoms are separate (which he suspects they will be), he indicated I would be a candidate for watch and wait. But he also said that he feels I would go into remission with perhaps only 4 cycles of the BR treatment and might not need the full 6 cycles which is standard. So I'll hopefully know where things stand by August 5th.

How are you? I hope well!

Oh, what a relief to know you’re heading to Mayo! I know from experience the peace of mind that we feel when we reach the Mother Ship…hope embraces you. ☺️ I can tell you’re feel a lot better about all of this now after all the indecision and second guessing.
Safe travels to Rochester! It’s my home away from home! Please let me know how everything goes for you. All set with lodging?

I do feel a whole lot better and have been able to sleep which has been great. The one thing still lingering for me is whether I'll require a stem cell transplant after the BR treatment if that's the route taken. The oncologist said we'll cross that bridge when we get to it and don't need to worry about it at the moment, but my OCD keeps reminding me there's still a potential worry ahead. Survivors I've spoken to have said SCT's are not pleasant which scares me. Did you go through one?

The lodging is set, I'm staying at the Hyatt House hotel. Ever stay there?