Stage IIIB Mantle Cell lymphoma with skin involvement just diagnosed

Posted by saltareus @saltareus, Feb 19 10:56am

Hi! 55yo female just diagnosed with MCL in December 2024. Not sure what to expect at this point. Moderate to severe skin involvement , but some positives are a negative P53 mutation and low Ki-67. Mild splenomegaly. About to go in for a fibroscan on liver and going for bone marrow biopsy. Weight gain opposed to weight loss. Any information would be greatly appreciated and welcomed.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Mar 3 11:52am

WElcome, @saltareus. I'm tagging fellow MCL members like @nhlbob @arbutus @angelu94 @ffb1234 @chastenn who can share their experiences with Mantle Cell Lymphoma.

You may also be interested in these related discussions:

- Anyone else have Mantle Cell Lymphoma https://connect.mayoclinic.org/discussion/mantle-cell-lymphoma/
- Mantle cell lymphoma: How long do I have? What's next? https://connect.mayoclinic.org/discussion/how-long-do-i-have-mantle-cell-lymphoma/

See all: https://connect.mayoclinic.org/group/blood-cancers-disorders/?search=Mantle%20cell&index=discussions

@saltareus, did you have the bone marrow biopsy? Any update? How are you doing?

nhlbob | @nhlbob | Mar 3 9:31pm

In reply to @colleenyoung "WElcome, @saltareus. I'm tagging fellow MCL members like @nhlbob @arbutus @angelu94 @ffb1234 @chastenn who can share..." + (show)

I'd be happy to answer any questions from newly diagnosed patients. I cannot seem to log back on to Mayo Clinic Connect so cannot participate in the chat on the forums.

Lori, Volunteer Mentor | @loribmt | Mar 4 10:01am

In reply to @nhlbob "I'd be happy to answer any questions from newly diagnosed patients. I cannot seem to log..." + (show)

Hi @nhlbob. It looks like you’re already logged into MCC. Just by replying to Colleens tag you popped into the conversation. So thank you for responding!

@saltareus, with her recent diagnosis of MCL would really appreciate any feedback you could give.
How have you been doing with your IVIG treatments?

randman | @randman | Mar 4 11:23am

Hi @saltareus ,

I was diagnosed with stage III MCL in 2015. Had 6 rounds of chemo, R-CHOP AND R-DHAP. I was 60 at the time. I've been in remission ever since.

Let me know if there's anything I can do.

All my best,

Randy

nhlbob | @nhlbob | Mar 4 6:55pm

In reply to @loribmt "Hi @nhlbob. It looks like you’re already logged into MCC. Just by replying to Colleens tag..." + (show)

I'm currently in remission after two rounds of low dose radiation. I have since adopted a strict Mediterranean diet & drink 30 ounces of freshly pressed juice daily (celery, cucumber, green apple, parsley, ginger, lemon). I've also eliminated all sugar and fried foods from my diet.

The IVIG treatments were not helpful for my MCL or neuropathy.

What has your medical team suggested for your situation?

Lori, Volunteer Mentor | @loribmt | Mar 5 9:28am

In reply to @nhlbob "I'm currently in remission after two rounds of low dose radiation. I have since adopted a..." + (show)

Glad to see you back here! You’ve certainly been covering the gamut of treatments since we first began chatting a couple years ago. Sending positive thoughts that the latest rounds of radiation will finally do the trick!

Your diet is similar to mine except I haven’t added juicing yet! Been toying with the idea. This may be the incentive I need to get me started. The impact on the body with eliminating sugar and fried foods is a game changer, isn’t it? I cut both from my life several years ago and if I have a momentary lapse in judgment, I can tell immediately and end up paying for those thrills! 😅 What brand of juicer do you have?

Thanks for asking, I’m actually doing well. I’m coming up on my 6 year anniversary with a bone marrow transplant for AML. That has been the gift of life.

I’ve been reading a few articles about patients with MCL who are benefitting from autologous stem cell transplants, using their own stem cells. It also appears that there are clinical trials being conducted for the possible use of CAR-T therapy for MCL patients! So there may be more potentially longterm treatments on the horizon! Has your oncologist mentioned an autologous stem cell transplant?

nhlbob | @nhlbob | Mar 5 10:03pm

In reply to @loribmt "Glad to see you back here! You’ve certainly been covering the gamut of treatments since we..." + (show)

Congrats on your 6 year anniversary, that's tremendous!

My oncologist did mention the possibility of harvesting my stem cells after I went into remission, however, MRD blood test still showed 0.34% mantle cells circulating so the idea of harvesting was ruled out. I am being monitored every 6 months with blood tests and an MRD test.

Beside CAR-T, I've been told the results coming back about clinical trials for targeted immunotherapies are encouraging which one would potentially be able to avoid chemo or a SCT.

My juicer brand is Tefal.

Lori, Volunteer Mentor | @loribmt | Mar 6 9:39am

In reply to @nhlbob "Congrats on your 6 year anniversary, that's tremendous! My oncologist did mention the possibility of harvesting..." + (show)

Fingers crossed for a clean MRD! There’s been so much ongoing R&D in the field of blood cancers with gene modification and targeted immunotherapies! It would be wonderful if you were a candidate for one of these therapies. Have you had an MRD run since completing the radiation?

nhlbob | @nhlbob | Mar 6 6:21pm

In reply to @loribmt "Fingers crossed for a clean MRD! There’s been so much ongoing R&D in the field of..." + (show)

Yes, I had an MRD run 12 months after radiation and the result was 0.34%. Having another one done in May. My PET scan was completely negative. Did you have MRD tests run post treatment?

Lori, Volunteer Mentor | @loribmt | Mar 6 9:13pm

In reply to @nhlbob "Yes, I had an MRD run 12 months after radiation and the result was 0.34%. Having..." + (show)

MRDs are part of my routine followup appts, along with a chimerism test. That test determines the percentage of my donor DNA vs my DNA. I’ve been fortunate all along that there is 100% donor/0% my cells in my bone marrow or blood tests. You might say I’m not myself these days. LOL. I have my donor’s DNA and his blood type.
Wishing you well with your next MRD. Excellent that the PET scan was clean!

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