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Mantle cell lymphoma

Ncros814
Posts: 2
Joined: Feb 2011

Hi Everyone: My husband was diagnosed with mantle cell lymphoma in September. He went through R Chop and had an auto stem cell transplant in February. First Pet scan after stem cell was negative. Are there any stories from long term survivors of mantle cell lymphoma? After going through Rbeam and the transplant we are still worried. Also he has been having "itchy skin" for which they prescribed low dose Prednisone and a cream but he still is itching. It seems to move from arms to legs and the facial area and he's not getting any relief. Has anyone else had this reaction? We would appreciate any help. Thanks

illead's picture
illead
Posts: 874
Joined: Aug 2012

You're living what we are dreading.  One good thing though is that I don't think bendamustine has been used that long to really know what it can do down the line.   So far it has worked wonders so our hope is that it will do that in relapse also.  It is so easy to deal with too,  Bill had no side effects and no loss of hair.  Hang in there, we just know you'll do good. B&B

hunter46
Posts: 8
Joined: Apr 2013

Have any of you experienced Nuropathy (numbness) as a result of your treatment and have you found anthing that helps?   I have tried electo therapy, Trixaicin cream,Anodyne Therapy, massage treatment. Been to three nuroalogists still have it just as bad as from the start.  I was told by two doctors if it goes away it will be after a few months well that didn't happen.  Wool slippers let me sleep thank heavens. Has anybody had success getting rid of this?  Thanks for any input.

illead's picture
illead
Posts: 874
Joined: Aug 2012

Hi Hunter,

     Bill has no problem with that but he only had Bendamustine/rituxan.  You have been through it, there may be others who can identify. Becky

Ludie
Posts: 1
Joined: May 2012

My husbands first treatment for a very Advanced Stage IV MCL was May 24, 2012...clinical trial at (MD Anderson Cancer Center in Houston Texas). of 6...7 day hospitalizations for chemo R-Chop with Velcade.....he has fairly severe neuropathy to his toes, feet and fingertips.....to date acupuncture, creams and etc. have not helped.   Last treatment was in Sept. 24, 2012 and was Disease free Oct. 4 ,2012...treatment stopped short due to cardiac toxcitiy. 

He has had two re-evaluations (every 3 months with scans and bone marrow bx) and all is well to date.    He has learned to deal with the numbness and take precautions to protect his feet.  It has lessened some in intensity, but is still there.  He  also tried Tiebetian haromonic meditation and found that extremelly helpful for this entire journey, which he continues to do daily.   His feelings were, he is alive and the numbness is the least of what he could be facing.  This MCL was an incidental finding...he felt fine...that was the really scary part of this disease.  He is active, and does most everything he has always done.

Hope all continues to go well for you.

illead's picture
illead
Posts: 874
Joined: Aug 2012

We met Bill's new oncologist today.  He is the 4th one since being dx in 7/11.  Two were on contract short term and the full time one he had left unexpectedly.  That left only 2 full time.  They finally got the third full time onc at our cancer center.  Anyway, we had a very encouraging visit with him.  He said that MCL is not as ominous as it once was and sounded very optimistic.  Of course we know they want to sound that way, but he seems to know what he is talking about.  He said something interesting that we were very happy to hear.  He said that if Bill stays in remission long enough, they may be able to use the bendamustine again.  It's when relapse occurs quickly after the first chemo, that it does not work well the next time.  He said that with the use of rituxan (around 2000), it totally changed the way of treating some lymphomas, including of course MCL.  He even said that they may find that instead of 2 yrs on rituxan, they may even extend that.  We just thought that things sound positive and wanted to share with you.  We hope you are all doing well in your battle and hope the bendamustine is doing well for you Hunter.  In our thoughts, Bill and Becky

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