Has anyone been diagnosed with mantle cell lymphoma?

[islander33]

I was diagnosed with Stage Three A mantle cell lyphoma . I have had two rounds of chemo so far so good.

[billd]

I was diagnosed mantle cell lymphoma 2 years ago I had chemo and a stem cell transplant.

[KarenHett in reply to billd]

How are you doing

[islander33]

I was diagnosed mantle cell lymphoma 4 months ago I am presently having chemo and than a stem cell transplant. If you don't mind sharing How did all of that go for you. Thanks Brien

[billd in reply to islander33]

Now in remission. the transplant is the worst part .I am 71and have bad heart. Its a hard pull ,good luck still have problems thinking.

[KarenHett in reply to islander33]

How are you now? I hope ok

[Reem-ayoub in reply to islander33]

Hi Brien. May I please know what treatment you are on. My husband has been recently diagnosed. He is 49 and we are trying to decide on treatment followed by transplant. Thanks

[islander33 in reply to Reem-ayoub]

Hi I was diagnosed Sept. 2013 Stage 3 MCL. My treatment was 6 months of chemo Bendamustine and rituximab .I achieved remission so I was able to have an Autologous Stem Cell Transplant. I than was on rituximab as preventative Maintenance for 6 months Do to the harshness of the treatment I have to get an infusion of IVIG every 28 days. To date I am healthy and in remission. I wish you all the best and if you have any other ? please let me know. Brie

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[Reem-ayoub in reply to islander33]

Glad you are well! Was yours indolent? May I ask your age?how soon after BR treatment did you have transplant?

Thanks for making time to answer my questions. I might have more 😉

[islander33 in reply to Reem-ayoub]

Oct .2013 started BR treatment. Lasted 6 months. My MCL was

classed as aggressive. My prognostic indicators were high June 2014 had transplant . I was 61 I am now 64. Please ask all the ? you want I am more than happy to help. Brien

[Reem-ayoub in reply to islander33]

So how often were the sessions ? How many sessions? Did they alternate B and R? What were your symptons when you were diagnosed? Was the red blood count good or was it dropping? What about WBC? Any prominent lymph nodes, spleen?

[islander33 in reply to Reem-ayoub]

I got 6 treatments of BR every 28 days I would get B first and R second day. My symptoms was a lump on the left side of my neck. CT scan showed i had lymph node involvement down my sternum and all around my spleen. Bone marrow and spinal fluid had no signs of cancer. That made me Stage 3. However my Ki67 was 57% that put my cancer in the aggressive stage. My blood counts were up and good and sometime low and not so good. I hope this helps One more thing I was lucky in the fact I tolerated the chemo very well and worked all through my treatment. Except for the stem cell transplant that kicked my but. Good luck and keep me posted how its going Your Friend Brien

[Reem-ayoub in reply to islander33]

Sure will! Thanksagain.

[Reem-ayoub in reply to islander33]

Hi Brien, as get closer to chemo new questions arise. Did you take any vitamins/supplements when you started? Did you eat well and did certainfoods bother you? We're you able to workout and how often were you tired (only aroundtreatment time or ?) any tips? By the way we're you priposed any other chemo regimens or BR was brought up from the start?

I think I asked too many,,,,,I'll give you a breather. Stay strong 💪

[islander33 in reply to Reem-ayoub]

Hi There is never to many question,s . I took no vitamins and no supplements I ate all through my chemo just like I normally would eat For the last 8 years I have been pro. ski patroller and Mountain rescue. I have always been very active. Through my chemo I worked full time , No as far as ot6her options to chemo . My oncologist laid out the plan . I trusted him and we went forward. My age is 64. I am in great health . My advice would be to you keep yourself in good shape eat well drink lots of fluids and keep a very positive attitude. Good luck Brien

[Reem-ayoub in reply to Reem-ayoub]

Hi Brien! How are you doing my friend?raja's first round of Bendamustine/Rituximab treatment done. He is feeling great thank God. I am wondering if you had a colonoscopy during diagnosis? Raja had his last week and dr is worried that he might bleed as the scar tissue would still be u healed? Any thoughts on that?

[islander33 in reply to Reem-ayoub]

Yes I had a colonoscopy , I had no problems with the procedure. No bleeding. I had mine after all my treatments. My blood count was good at the time of the procedure . This might of helped and the reason i had no complications

[Reem-ayoub in reply to islander33]

Hi Brien! Hope you're feeling great! Saw dr today and decided to start BR on Monday. We call it "the healing journey". Fingers crossed! I hope we achieve remission and move on to ASCT.

[Reem-ayoub in reply to islander33]

Hi Brian! I hope you are well! Haven't heardfrom you past few days! Raja is getting hot flushes at night and some during the day. He feels hot in the face and he has some water retention (face a bit puffy). Is that normal?otherwise energy level is good and no nausea.

[islander33 in reply to Reem-ayoub]

Hi I never got hot flushes You must understand that we all have different out comes when it comes to treatment. I had some nausea and low energy levels . It sounds to me that he is doing well and I hope that this continues through his treatment . Please keep me in the loop Brein

[Reem-ayoub in reply to islander33]

Hi Brien! Hope all is going well this holiday season! Just a quick question. It was brought to our awareness by a haematologist that BEndamustinecould have a toxic effect on stem cells putting the ASTC at risk. Are you aware of that? I know your transplant was successful but just thought I'd ask if you had come across such info?

[moors3029]

My husband was diagnoised in June of 2011 with Mantel Cell stage 4, no symtems and did a watch and wait until Aug. 2012. Then started 8 rounds of R-Chop from Aug. til Jan. In April of 2013 had an auto stem cell transplant. He is 70 this month in remission and doing well. He was a Vietnam Vet and was in country during Agent Orange and his disease may be related to his service.

[moors3029 in reply to moors3029]

This is an update on my husband. He was in remission for 3 years after the auto stem cell and last April fell out of remission. He just finished 6 session of two days each of RB. He will go in on Nov. 28 2016 for pet scan to make sure he is in remission and then they will do a maintenance program of Rituximab.

[Reem-ayoub in reply to moors3029]

Wishing your husband complete and everlasting remission. BR apparently is quite tolerable. How did he tolerate his? My husband finished his first round last week and is feeling quite good. His next session will be on the 5th and 6th of December. Please keep us posted and will hold you and your husband in our prayers!

[moors3029 in reply to Reem-ayoub]

He tolerated the BR very well. He gets his pet scan on Monday and we are praying he is in remission. Then they will do a maintenance of Rituximab.

[Reem-ayoub in reply to moors3029]

Hi! How did your husband's PET Scan go? Just wondering, what was the treatment he has before getting stem cell transplant a few years back?

[moors3029 in reply to Reem-ayoub]

The PET scan was clear and then he had a bone marrow biopsy and that also showed that he is in remission. We are so thankful. He did a wait and watch for 16 months and then started R-CHOP. Then was in remission and did an AUTO stem cell transplant 3 months later. He was then in remission for 3 years. We think he fell out of remission last year because he came down with shingles and we think it lowered his immune system so much that it returned. The doctor was going to do a maintenance of Rituximab but when they didn't see any signs of the Mantel Cell in the bone marrow they decided to let his body rebuild back up. Hope your husband is still doing well with his treatments. Keep in touch. Sending prayers your way.

[KarenHett]

Where are you now??? My husband just into his 3rd treatment. Decided not to do stem cell. ... I'm a mess

[C180ji]

Hi all, I find this interesting I was diagnosed in January 2014 with Mantle Cell Lynphoma. It was a big shock to me after a first ever mammogram routine. I was sent to hospital for a check up and they decided to do a biopsy, I was called back two weeks later to be told sorry it's not good news it's MCL. They tried to explain but I just couldn't take it in. I have had scans bone marrow test bloods test and so on. 3years on W/W and hope for a few more years like that. It's good to read about others with this illness and what next to expect. I wish everyone the best and a great Christmas 🎄