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Mantle Cell Lymphoma

misspeggy
Posts: 1
Joined: Apr 2003

My husband has been diagnosed with Mantel Cell non-Hodgkins Lymphoma. I've yet to meet anybody else with this type. Does anybody have any experience with this type?

BuckeyeNut1948
Posts: 11
Joined: Jun 2012

I was wondering before if they would do the stem cell a 2nd time? My husband had auto stem cell in Jan. 2011 after being diagnosed in Aug. 2010, then treatment started with chemo in Sept. and Oct., prep for Stem cell transplant then started at end of Oct. when he was found to be 100% in remission.

I'm just checking to see also if anyone had hives as a symptom. That is what took us to the urgent care .....when they became so bad that they were on his lips, face, and he started coughing and became very hoarse. I was concerned that he was going into anaphyactic shock!!! But he had no other symptoms!!! NONE! Only when a dermatologist began treating him and ran blood tests was the start of finding out he had MCL! He had seen the Urgent care dr., then our family dr., then allergist who then sent him to the dermatologist. Nobody ran blood tests until he saw the dermatologist. So the dermatologist sent him to the local hematologist who ran more intense blood tests finding he had MCL. Needless to say, the hematologist sent him that very next week to an oncologist at the James Cancer Center in Columbus, OH, and she confirmed the diagnosis. We chose that he be treated at the James, knowing that the oncologist he was sent to was one of the best in the country!!!

What symptoms did you notice before you were found to be out of 1st remission?

Djzlady96
Posts: 6
Joined: Jun 2012

Wondering how you are doing to date.

Djzlady96
Posts: 6
Joined: Jun 2012

Wondering how you are doing to date.

Djzlady96
Posts: 6
Joined: Jun 2012

Wondering how you are doing to date.

nsouliere
Posts: 2
Joined: Oct 2011

Hi Peggy,

My husband was diagnosed with MCL on December 29, 2010. He's been through the R-C
HOP chemo treatments. Then they tried to harvest his own stem cells to do an auto - stem cell transplant, but his marrow was so beaten up by the chemo that they could not harvest enough of his own and on Sept.3, 2011,my husband received a donor stem cell transplant. The match was only a close match but we were glad to get it. He just last week developed GVH or Graft vs Host disease. The symptons were red, itchy and full body rash. He started on 70 mg of prednisone today along with all the other meds. that he takes such as pnuemonia preventative, infection fighters, folic acid, magnesium, and two drugs to prevent rejection of the stem cells. He will be 62 this coming december and before being diagnosed with MCL, the only health issue was high cholerteral. My husband was a very active man with a physical job. He now cannot work and presently has not energy at all. He can only sit in his recliner most of the day, watching tv or napping. This has been very hard for him but we try to remain hopeful. We have wonderful doctors at Dana Farber Cancer Institue in Boston,MA. Although we live an hour and a half away from the hospital, it's worth every minute. Try to get family and close friends to help you because as a caretaker, you'll need help. I don't have a lot of help but the little I have is dependable and priceless as through all this I am working full time. I must keep working now as I am the only health insurance provider. My husband was able to receive disability payments from Social Security and that too has been a great help. I wish you the best and will keep you and your husband in my prayers.

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

Hi,

Your husband and I have a lot in common. I had physical jobs for most of my adult life and I also have MCL. 2 out of 3. But I wish I had his looks instead.

A Donor Stem Cell Transplant (allogeneic)is a serious procedure which has greatly improved over the past few years. Also the resulting reward for us with MCL is a possible CURE.

You're at an excellent hospital.

Good Luck
Frank

BuckeyeNut1948
Posts: 11
Joined: Jun 2012

My husband was diagnosed with Mantle Cell Non-Hodgkins Lymphoma in Aug. 2010. He went through CVAD chemo, plus an autologous stem cell transplant. We met 2 people at the James Cancer Center at OSU University Hospital in Columbus, OH who had also had Mantle Cell Lymphoma. One was 11 years post treatment, the other 12 years. And they looked very good. My husband's started with hives that would not go away...which his oncologist stated that hives was not usually a symptom that patients had at all with MCL. Did your husband deal with hives at all? We know a woman at our church which her dad and brother both had MCL and both had hives as their first and only symptom just like my husband.

The treatment (chemo and stem cell transplant) was extremely hard on him as he lost over 50 lb. (which he had plenty to lose to begin with), but he battled it very well considering how rough the chemo and stem cell transplant were for him. He was 62 years old when he was diagnosed and started treatment.

Did you husband have hives? I'm just curious seeing that when he initially went after diagnosed, his oncologist stated that they don't see hives. But then after he was done with chemo and in remission, she released him to the stem cell transplant who once that was completed released him back to his oncologist. He was diagnosed in Aug. 2010 and she told us then when he was returned to the oncologist that since she had last seen my husband in Oct. that she had since seen a few cases of MCL with hives as the presenting symptom.

Lawclerkone's picture
Lawclerkone
Posts: 3
Joined: Jul 2012

My prayers are with you and your family. I too have been diagnoised with MCL on 3-2-12. My treatment plan consisted of 3 phases. First phase, 6 one week chemo treatments in hospital with 2 weeks off at home. I just completed 6 rounds of week long chemo treatments. Every thing looks good. I have completed 2 and have 2 more spinal tap chemo injections to complete phase 2 of my treatment plan. Since MCL is so aggressive it likes to cross the blood brain barrier in an attempt to survive. I urge everyone with MCL to check into the spinal tap procedures to prevent MCL from crossing the blood brain barrier. Phase 3 is stem cell transplant which is scheduled for Aug-Sept time frame of 2012. Anyone who wants to know, I will keep them informed as to my progress. Everyone that meets me wants to know how I can be so cheerful, content and happy. My answer, I love my children, family and grandchildren none of which want me to give up or quit. For them I will eat, exercise and be happy no matter what. I firmly believe in drinking juices and green teas with pomagrante. Don’t worry be happy!!! We can beat this with proper treatment, a paositive attitude and behavior.

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