Relapse after Stem Cell Transplant.

ozzie2
ozzie2 Member Posts: 17
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi all am new here,has anyone had a stem cell transplant (autologus) and it never worked?Had one this time last yr and Ct in July showed nodes still there,was told it is scar tissue(not happy with the reply)so had a PET in Dec last yr,showed cancer still present,Dr thinks my intermediate nhl large diffuse B cell was hiding a low grade nhl ?possiable..but he is also saying it is a mixed b cell lymphoma ,How? as no biopsy's have been done to confirm this! nodes are still small 13mm ,but I really would like some answers to this question.Many Thanks.

Comments

  • sfleming
    sfleming Member Posts: 8
    #2
    Hi oz. Sorry your BMT was not as successful as you would have liked it to be. I have not had a BMT but I did go through chemo for diffuse, large b-cell NHL in 2002. I would suggest you get yourself to a bigger and/or better doctor and hospital. Perhaps the National Institutes of Health or the ACS can help you with that. It seems your oncologist may not have a good handle on your situation. I went to Columbia Presbyterian in NY and felt they were fantastic. If you want some names or suggestions, just email me and I'll be happy to help out. My recommendation is get to one of the bigger, better major cancer treatment hospitals, even if it requires travel. They will have better resources and access to clinical trials. Best to you!
  • betharant
    betharant Member Posts: 5
    #3
    I have a mixed b cell lymphoma of the bone marrow. I was told that it began as a small slow growing b cell lymphoma and then transformed into a large aggressive b cell lymphoma. Don't know how. It just happened. It was not diagnosed through any noninvasive testing. They ended up doing 4 open bone biopsies on my hips and femur until they found some living cells.
    That's the only way they were able to recognize that it began as a cmall b cell cancer. I know that's not what you wanted to hear but sometimes it just happens and no one knows how or why yet. I hope you find the answers you are looking for. I agree with suzann. You need to get to a larger institute with more experienced and more highly trained doctors. May God bless you since there's no such thing as luck. Keep on praying.
  • ozzie2
    ozzie2 Member Posts: 17
    #4
    HI all many thanks for the replies,suzann and betharant.First of I am in Australia and my Specialist is the top in his field,so makes it hard to go else were,if I could I would.He has taken all my reports etc to the States as I am one of those people that don't act normal with this illness..LOL..wish I did!.Also I was dx with this illness in DEC 1999 and have chemo CHOP and then DHAP and also High dose chemo(can't think of the name )also have had BC in 1996 had the lot for treatment,mas,chemo radio etc and got Lymphodema..Think I drew the lucky straw? LOL..but the other illness has never worried me and yes it was grade 3,stage 3.But this NHl has got me beat.. Haven't had MabThera yet..(Rituxan in many countries!)but I believe this works better with Chemo? and I think I have done my lot with the chemo,as there is only so much one can have?The Lymphoma has never been in my bone marrow, always come's back clear,was also dx as having a really good outcome with the stem cell transplant, so felt really positive,now I don't know what to believe! just hoping it is low grade ,as if it is high grade have been told no more can be done,(great,) and I am only 53(gosh now you all know my age!Lol. oh well at least I can laugh !)thanks once again for the reply's..hugs and god bless.
  • tadevine
    tadevine Member Posts: 6
    #5
    I have been fighting NHL since 1991.In 1999 I had a BMTP at Henry Ford hospital in Michigan.I was pleased with how they handled me.My doner was my sister.I also changed to her blood type.1 year after I had the BMTP,I had a relaps.I went into treatment, and I can't remember right now what they used.But it put it back int remission.I have been in remission now for 3 years.
    As for your BMTP.I am sorry about the problem,but it sounds to me you best get your but into another Dr. for a second opinon.A BMTP isn't nothing to play with.Even if it was your own.It can go wild on you but any little cold or infection can kill..I would seak a second opinon soon.
    You can get me at:sniperus@tir.com
    Good luck
    Thomas Devine
    TCA 00-50943
    TOM'S TOY TRAINS
    Flint - Michigan
    Lionel and American Flyer
    Collector and Restoration
    E-Mail:sniperus@tir.com
    Web Site:tadevine.homepage.com
    Vietnam 1970 (sniper)
  • tadevine
    tadevine Member Posts: 6
    #6
    I have had a BMTP and had a relapes after just one year.I was treated with retixon and they brought it back under control.I have been clean for 3 years.My sister was my doner.
    So just because you had a relapes doesn't mean it didn't work.There is still hope with yours.Hang in there.I have been at it since 1990.

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