Three disorders at the same time?

[lsutigers2018]

Was told I have Mantel Cell Lymphoma, Marginal Zone Lymphoma, AND Atypical CLL, all at the same time. They missed it for two years. Numerous sinus infections was reason for testing, and now a few months of detailed testing, CT scans etc. Next week will know treatment if recommended to start. Was told my spleen is greatly enlarged, bad lymph gland there, and I have lack of stamina and swollen left side of stomach. Anyone else experienced this? Was always healthy up until last year, I am 63 non smoker.

[AussieNeil Partner Administrator]

Welcome to our community!

We have very few members with two blood malignancies, but I think you are the only member with three, assuming your diagnosis is correct. While all are B-Lymphocyte lymphomas so treating one should also reduce the tumour load of the others, I would expect that your first step is having your extremely rare diagnosis confirmed by the best available expert that you can find. You haven't shared where you live or which specialist centre you are visiting. Doing so will enable others near you to recommend their CLL specialist for you to consider as a possibility for a second opinion. For everyone's privacy, I would recommend you either edit this post to make it viewable by this community only (Edit by selecting the 'More v' below your post), or by posting again with that specific question.

These links will take you to four lists of CLL specialists, with most of the content USA based. I hope that they prove useful.:

cll-nhl.com/p/cllnhl-doctor...

cllsociety.org/toolbox/cll-...

The spleen can be considered as the largest lymph gland in our body and does shrink back to normal with treatment. Other abdominal nodes could also be contributing to the swelling on the left side of your stomach. (The spleen normally is protectively tucked under the left side of the rib cage, but can extend down adjacent to the stomach when it swells sufficiently). Having a swollen spleen and enlarged abdominal nodes is a common symptom with CLL, so you have that in common with many other community members. Being a non smoker will stand you in good stead now, with improved cardiopulmonary fitness and a reduction in your risk of secondary cancers, which is a known issue with CLL.

Neil

[JR1964]

Isutigers, welcome to the community. In what Neil suggest I agree with. It is rare for any of us to have two blood disorders but three unheard of. I would question the doctor on this again. And before any type of treatment given I would seek out a second opinion from another Specialist like a facility such as MDA. If unable to go there , try the CLL Society, they have a program where you can discuss your situation with a Specialist. While these are B - Lymphocyte Lymphomas they can act in different ways as- for the MCL can be very aggressive in nature and treatment can come quickly. It is great that you are taking charge of your journey. Keep the FAITH and BELIEVE. STAY STRONG J.R. 🤠🤠🤠🤠🤠

[MsLockYourPosts Passed Volunteer in reply to JR1964]

JR - The CLL Society program you mentioned is only available to US residents currently. As Neil suggested, we really need to know where someone is before recommending specialty centers or programs. What's available varies a great deal from country to country.

Isutigers - Is that a school and mascot? Hopefully you can find a specialist with experience with a situation like yours. Good specialists aren't afraid to throw unusual cases out there for extra input. If your diagnosis is correct, I'm sure your case will be shared and top brains will be picked. Atypical seems to be somewhat typical with CLL, so don't let that label throw you.

[JR1964 in reply to MsLockYourPosts]

Sorry, you may need some background here. I believe this was the same individual I met at a support group meeting just today. Forgot to mention it there. So I know their location. STAY STRONG J.R.

[MsLockYourPosts Passed Volunteer in reply to JR1964]

That helps. If it is the same person, great that they have found a support group.

[winterwild]

Ibrutinib has just been made available in Australia on the PBS for Mantle Cell Lymphoma, which means it must be working for some people with this disease. It was made available last year for CLL. I have CLL my father had Mantle Cell and my brother has MBL. My father was also well his entire life until MCL. Hopefully Ibrutinib will be available to you. Good luck.

[bbreeland]

LSUtigers2018-Are you in Baton Rouge? I am and see Dr. Michael Keating at MD Anderson and Dr. John Byrd at OSU. I would highly recommend you get to MD Anderson so that an expert gets involved in your care. Private message me if you need more information or would like to connect.

[81ue]

When they can't figure out what you've got, and it seems to fit different categories then that's when the specialist and pathology dept has to take a look. It took 1.5 months for a university cancer center's pathology dept. to figure out what i had.

[carolly]

I understand your frustration. So far my condition has been named atypical CLL, SLL, LPD, Lymphocytosis, and low grade Lymphoma at different times. ALC 40K with a big spleen on w&w. I'm really none the wiser and never get a more specific answer when I ask.