Mantle Cell Lymphoma

Lawclerkone

I was diagnoised with Stage 4 Mantle Cell Lymphoma on March 2, 2012. I was given a 3 phase treatment plan. R_EPOCH, Spinal Tap injections of chemo and stem cell transplant.

First phase treatment consisted of 5 days in the hospital for R-EPOCH chemo by IV then 2 weeks out at home for 6 separate treatments. Second phase was 4 Spinal Taps of chemo to keep the cancer from crossing the blood brain barrier and getting to my brain and spine. Third phase is stem cell transplant.

I have completed the first phase. One more spinal tap and phase two will be done. Phase three starts August 9th, 2012 after the CT and PET scan results. I will post again after my stem cell transplant is complete. The doctors told me the side affects. So I prepared for them mentally. I also did a lot of research on the internet for this type of cancer in particular. I am aware of the negative posts and the positive posts.

Witnessing both those who have cancer and have given up and those who have had a positive attitude, those who keep a positive attitude through it all, exercise, drink green teas and juices with pomogranite definitely benefit.

I will continue to post throughout time because I plan on being a surviver.

Terry

allmost60

Welcome...
Hi Terry,
Sounds like you have a full plate! I agree with the idea that having a positive attitude helps. I believe we heal faster and enjoy life more with a positive attitude...works for me! During treatment it is harder to stay positive than afterwards...fear of the unknown can get us down at times. I am in the last phase of my treatment regimen and hoping the worst is now behind me. You can click on my picture to read my "about me" page. I'll be thinking positive thoughts for your upcoming SCT. Please keep us informed, and "welcome".
Best wishes...Sue
(FollicularNHL-stage3-grade2-typeA-Dx 6/10-age 61)...considered stable.

anliperez915

Hi Terry
Hi Terry,
Welcome to the group, hope your treatments went good as well as your spinal taps. I know you will do fine in your SCT, you sound like a very strong person. My dx is Splenic Marginal Zone NHL, stage 4 with tumors in spleen, liver and bone marrow involvement. Just started Rituxan treatment again after 6mo brake, so far so good! Please keep us updated on how everything went for you. Take care of yourself, sending positive thoughts your way.

Keep that positive attitude

Sincerely,
Liz

jimwins

Welcome
Hi Terry and welcome to the group.

I was also treated similar to you with R-EPOCH for Diffuse Large B
Cell Lymphoma. I had 6 cycles just like you in the hospital.
So far, I'm in remisson and no more treatments are planned.

You'll find very caring and supportive folks here. Please feel
free to come here and share all you want.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

miamiboy

jimwins said:

Welcome
Hi Terry and welcome to the group.

I was also treated similar to you with R-EPOCH for Diffuse Large B
Cell Lymphoma. I had 6 cycles just like you in the hospital.
So far, I'm in remisson and no more treatments are planned.

You'll find very caring and supportive folks here. Please feel
free to come here and share all you want.

Hugs and positive thoughts,

Jim
DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission.

Mantle Cell Lymphoma (MCL)
At age 61 in Sept 2012 I was diagnosed with stage IV MCL. A MCL tumor was found in my colon in a CT scan done for an unrelated reason. Soon after the diagnosis I had surgery to remove the tumor. Following that I had R-CHOP six times which resulted in a complete remission and then in May 2012 I had an auto stem cell transplant done. After the transplant I got a c. diff. infection which I am still fighting. It has been a rough road to travel but I am keeping a positive attitude and am dealing with the changes in my life that have resulted from having MCL. I've read a lot about MCL and agree with the comment that it is important to note the date of the material being reviewed since many things about MCL have changed in recent years. I would be happy to share any information or comment on any questions you may have.

Tom

hunter46

Mantle Cell

Im currently over 5 years out I had Stage 4.  Went thru RhperCvad, Stem cell transplant  Valcade,Bendomustine, and now am on Ibrutiniv which is not chemo but a inhibitor.  Being treated at Minneapolis VA. The only side effect in two months of treatment is leg cramps.  I am looking for somebody that has taken Ibruiniv and did they have same side effect.  My tumor after only two months taking drug is gone.  You take this drug until desease returns or side effects make it impossible to contineue treatment. 

Max Former Hodgkins Stage 3

hunter46 said:

Mantle Cell

Im currently over 5 years out I had Stage 4.  Went thru RhperCvad, Stem cell transplant  Valcade,Bendomustine, and now am on Ibrutiniv which is not chemo but a inhibitor.  Being treated at Minneapolis VA. The only side effect in two months of treatment is leg cramps.  I am looking for somebody that has taken Ibruiniv and did they have same side effect.  My tumor after only two months taking drug is gone.  You take this drug until desease returns or side effects make it impossible to contineue treatment. 

Possibly

Hunter,

Becky, a regular here (screen name Illead), has a husband who is on a new MCL drug; I do not recall if it is Ibruiniv or not.  She checks in every few days, and no doubt will write to you soon.   I'm glad the drug is working well for you.

max

illead

Max Former Hodgkins Stage 3 said:

Possibly

Hunter,

Becky, a regular here (screen name Illead), has a husband who is on a new MCL drug; I do not recall if it is Ibruiniv or not.  She checks in every few days, and no doubt will write to you soon.   I'm glad the drug is working well for you.

max

Hi Hunter

Welcome to the site.  Yes my husband has MCL,  You can look up the particulars on our page if you want, just click on our picture.  Bill was also stage 4, he was diagnosed this month in '11, so it has been 3 yrs.  He received Bendamustine/rituxan, he relapsed this past Feb.(2 yrs in remission).  He is on Ibrutinib also, and after 3 months, his cat scan shows barely a trace.  It still amazes me that it was released for use just in time.  The doctor he was referred to at Stanford Univ. is one of the researchers.  We are very thankful.  Yes, he is having leg cramps, we weren't sure if it was the ibrutinib or not.  They seem to have calmed down but they were pretty intense and felt like he had a steel plate in his calf.  He has always had cramping, especially in his upper abdomen, and they have been more frequent and intense, but like the leg cramps, they have calmed down too.  He also has an odd headache that comes and goes, not especially painful.  Also feels more tired, but that could be the heat and his age (65).  He is planning on calling the drug company and talking to the pharmacist there.  Are you taking 4 pills/day?  Are you having to pay for any of the drug?  Our Medicare prescription plan is Humana and they pay 80% after the deductible.  He has a renewable grant and they pay the deductible and our 20%, so we pay nothing, thank goodness, as you know, it is a very expensive drug habit .  If you want to personal message us, you can do that also by clicking on our picture, (our email addresses are not exchanged), it would be good to share how things go down the line.  It is too bad that we are in this position but very thankful for the determination of the researchers and we are so happy for you too.

Our best to you and your family,

Bill & Becky