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Mantle Cell Lymphoma

Suki7
Posts: 2
Joined: Dec 2010

Hi everybody,
In 2008 I was diagnosed with NHL and did the chemo treatment, I relapsed shortly after chemo treatment. More test was done and I was diagnosed with stage IV Mantle Cell Lymphoma.
March of 2009 I got intense chemo followed by a allogeneic stem cell transplant. March of 2010 my big test (CT Scan and Bone Marrow) all came out clear. Tomorrow Dec. 8th is my next CT Scan, no bone marrow test this time. I couldn't be happier with the test results I have gotten so far, but I am so scared every time a test is to be done.
Is there anybody on here that has Mantle Cell Lymphoma? If so I would love to talk.

Hulsy's picture
Hulsy
Posts: 11
Joined: Jan 2011

Hi Suki,

Yes, I have same cancer....had autologous stem cell transplant on March 4, 2010. Previous to the SCT, I had 6 rounds of intensive chemo a week at a time in the hospital....it was a rough road, but so far so good. I get re-vaccinated starting in March 2011.

I would love to talk to you about your journey so far. I just joined this CSN yesterday and still managing my way through this...would love to start email or phone contact. I live in Michigan

mantlecellmantis
Posts: 3
Joined: Jan 2011

you sound great.i'm happy for you but i don't know what to do.mismanaged-wish i was not an rn then i wouldn't know.no feedback from this site-was told to go to discusion board.here twice in one day.need someone who knows how i feel.used to be so upbeat.sorry-don't want to drag you down.

mantlecellmantis
Posts: 3
Joined: Jan 2011

i have stage 4 mantle cell. i have completed chopr.pet shows thyroid mass. lack support,am on fml from work due to post chop neuropathy.can not drive self to shands for further treatment,it is over 4 hrs away.oncologist now here only 1 wk per mo.have 2 minor children & my ex is evil.friends are quiting.feel alone-am alone.sounds like you are doing great.understand if you do not reply back.wish you the best

Hulsy's picture
Hulsy
Posts: 11
Joined: Jan 2011

Hi, there are very few people around to discuss this disease with. You sound like you live in a rural area without much medical expertise. I am sorry to hear that. I was also diagnosed with stage 4, was treated with r-chop and hyper-c-vad--had an intense 7 mos. of treatment...7 weeks in hospital over the 7 mos. Almost died from the pneumonia I got during treatment. I never thought I'd get through this far...in fact the drs. were very surprised. I tried to be as positive as i could and did not do the research on the internet. I am extremely fortunate with the support group of family and friends. And we are 10 min. from a major cancer treatment center.

I was very sick while going through treatment, lost hair, had neuropathy and all the bad stuff. Had the end of life discussions with the family and friends. It was a journey. I had stem cell transplant last March and will start with vaccinations this March to rebuild my immune system. It was a wretched journey, but I kept as positive as I could and joked around when I could.

I became extremely spiritual and found that prayer and music helped soothe me. I don't know if you've ever heard of Leonard Cohen, but he is a singer and has a special prayer song that I listened to and prayed with...it is called "If it be your will." You might find it helps you to reframe your mind.

There is so much that is out of our control....the more we try to control, the more frustrating it is. It is true, you have to "let go and let God"

All I can say is that there is no way I would've believed I could be here today. There are better reports coming out on the treatment of MCL...I have PET/CT scans scheduled again for next month and am scared to death. But we have to take it one day at a time and enjoy all the moments we are given.

I know you are hard against it right now....but you somehow have to allow room for positive thoughts in your life. The fear is overwhelming and can be paralizing, fight against that. Get a fighter's attitude...show your kids your will to live by setting a positive attitude. Trust me, I know how hard that is....do what you can.

I will add you to my nightly prayer list.

Hulsy

Frankz's picture
Frankz
Posts: 4
Joined: May 2011

You're getting it from all ends. A wellness group I joined two years ago at Gilda's Club helps me through the difficult times. I receive a lot comfort and support there. We only meet once a week for an hour and a half but we've made very strong and meaningful relationships and friendships. Cancer is an extremely difficult thing for most healthy people to really understand. Try to find a group it truly helps me.

Frankz's picture
Frankz
Posts: 4
Joined: May 2011

Hi Suki,
I received the same diagnoses as you in June of '07.
You’re not alone in your fears. We all feel it at scan time. I'm off to the doctor today for last weeks scan results. I see the doctor every three months and scans every six. I try to stay a little ahead of them by getting my results 48 hours after the scan. So I’m not so shocked or stunned that I’m unable ask questions when I’m with the doctor. Forget the three year prognosis my doctor told me it could be two months or two years. Hope your doing well and stay positive.

flywitheagle
Posts: 2
Joined: Feb 2012

I just been informed by my doctor based upon Flow sytomtry with D1 I have been diagnosed MCL, and I am only 55 with two college boys. I am expecting to do PET scan and Bone Marrow Biopsy next week. I have no symptoms, and what I am expecting ? My wife and me are scared to death - please share your thoughts thanks!
Eric

flywitheagle
Posts: 2
Joined: Feb 2012

I just been informed by my doctor based upon Flow sytomtry with D1 I have been diagnosed MCL, and I am only 55 with two college boys. I am expecting to do PET scan and Bone Marrow Biopsy next week. I have no symptoms, and what I am expecting ? My wife and me are scared to death - please share your thoughts thanks!
Eric

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