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Mantle Cell Lymphoma

msdina257
Posts: 6
Joined: Jul 2009

Looking for Mantle Cell survivors to talk too

SamCec
Posts: 2
Joined: Aug 2009

Hi: You are speaking to a survivor not only of mantle cell but also of 5 additional primaries. Let me tell you a little about myself and my cancer history.

I'm currently 65 years old. Om May 22, 1992 (some days you don't forget), I was told I had lymphoma. At that time mantle cell was not defined so they diagnose my lymphoma as a combination of small and large cell. In 1994, I was diagnose with prostate cancer and later that year had a radical prostectamy. In 1997, they found a tumor on my lung and through surgery removed my lower right lobe. In 2000, a recurrence of mantle cell in my facial area, the lacrimal duct. In 2001, a recurrence of mantle cell in my facial area, the parata gland. In 2002, a recurrence of mantle cell on my upper arm. A small tumor was found and had to be removed. In Aug/Sept 2003 because of Stage 4 lymphoma, I had a stem-cell transplant. In 2006, I had a very rare pneumonia call BOOP/COP. The doctors believe it was cause as a side-effect from the stem-cell transplant. In 2007, I had meningioma (brain tumor) that required surgery and in 2008, I had melanoma on my lower back. This also required surgery. Then again in May 2009, I had a recurrence of BOOP.

As you can see I am a survivor. As I tell people "I still wake up on the green side of the grass".

During the period of the various cancers I have listed above, I went through chemo and radiation. They made me lethargic and I lost my hair on a couple of them but I bounced back.

Today I am doing well. My oncologist sees me every 2 weeks. Every 3 months I get CT scans and every 6 months I get a PET scan. I will NOT tell you I am 100% cured but I am alive and able to enjoy my family and grand kids.

The CT scans show 2 nodes in the neck and one node on the upper left lung. These nodes have been visible in the CT scans for the past 6 months and have not grown. So for now the oncologist is keeping a close watch on them but not doing anything else. I do have a problem with my eosimophil blood count and the N-K cells. But again, these are being watched very closely. The only other problem I have Is my breathing caused by the BOOP pneumonia. I am currently going through Pulmonary Rehab.

There is one other thing I would like to say--many of your well meaning friends are going to offer alternative suggestions. My reply to them is: you need to have trust in two individuals--the man upstairs (GOD) and your oncologist.

Please, If I can be of any help or can answer any questions, don't hesitate to ask.

Sam

msdina257
Posts: 6
Joined: Jul 2009

Hi Sam,Wow you have been though alot and still going strong. Congratulations for all that you have been though. I know for going though this journey with my husband that there is only one way to go though this is to fight .And fight is what we have been doing. He has shown alot of strength and with the support of our family and friends, he will beat this. We have too many plans for our life's and intend to do them. Thank you for responding and hope to hear from other Survivors as well with this crazy Cancer. I know there are more people out there that need to hear stories of remission.

Thank you again

Dina

mcmarilyn
Posts: 1
Joined: Sep 2009

Hi Sam, Msdina, Sam, you are an inspiration!
This is my first "group". My huband, David was diagnosed with MCL in Aug. of 2008. He is 61. Our first year of marriage (yep, that's right) was spent between Dana Farber and Brigham & Womans Hosp. in Boston. Thankfully,it is about 45 mins. from our home. I am an RN. Dave received immediate disability. Hope you all know that the MCL diagnosis is on the SS"compasionate list" of diabilities. There is no waiting period. He has been in a trial, has had CHOP R withCVAD, etc., a autol. stem cell transplant and was pronounced in 100% remission in May. He is now on the final leg of the Velcade part of the trial. At diag. he was Stage 1V plus, as they also found suspicious cells in cerebrospinal fluid. He received 10 doses of methotrexate into the spine, and after 5 treatments, they could no longer get into the spine.
They then advised us to see the neurosurgeon to discuss an Omaya shunt, which is placement of a catheter into the reservoir of spinal fluid into the center brain. We felt that we did not want to risk that, and said no thanks, but they told us we had no choice. So we agreed. Two days after the surgery it became infected, he had meningitis, and it had to be removed as an emergency measure. We nearly lost him then. Funny though, they did manage to find a way to get the last 5 doses after that, with X ray guidance. Please write soon, Best, McMarilyn

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