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Hodgkins Lymphoma for the 2nd time

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Hi
I have had 2 transplants (bone marrow from sister and stem cell of my own ) transplants and it has seems to come back again . I seem to take well to all chemos they give me as I go into remission but it doesnt seem to go away. These last test said its a chance its back based of bone scars in a pet scan that then were looked at closer through an MRI. Dr did a bone marrow biopsy and then said it a possibility its back... How can they not tell if it is for sure ?.... Any advice is appreciated

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi diazr1,
The only thing I can think of is that maybe when they did your BMB they didn't get enough from the bone? My doctor had to go in 3 times(3 seperate locations) in my left hip before getting a good enough sample to send off to pathology. It was very painful and not something I EVER want to go through again! You should ask your doctor what the deal is on him saying it's a "possibility" instead of giving you a firm yes or no diagnosis. Take care, and I hope you get some answers soon. Best wishes...Sue
Follicular NHL-stage3-grade2-typeA-diagnosed June 2010-age 61.

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Hi,I'm going thru the same thing, on a PET scan there is still activity in my pelvic bone, where the cancer was it's worse. They think it's treatment related and will take a watch and wait approach. I too responded well to the chemo treatment, except for the hip area. There are acceptable level's of uptake, on your PET scan, the area that is in question, is it under 2.5???? Vinny

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

The Dr didn't tell me the scar sizes, but since then I have been losing my appetite (maybe stress). I still eat but not like a hog like I use to. I did ask for a more definite answer. Thanks and sue I'll keep u posted

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

Good luck, and please keep us updated...... Thanks

caregiver1829's picture
caregiver1829
Posts: 52
Joined: Feb 2012

hi there, if its back, ask your doc about a drug called TREANDA w/rituxin,, My wifes nhl is back for the 3 rd time,, we too had one auto blood stem cell and it only worked for a year,, countrygirl7557 used this drug 2 yrs ago on her first round of nhl and shes been clear for 2 years now.. we hopeing it will do the same for my wife.. we find out mar 14th 2012 what exactly we have and how bad.. good luck jan..

COBRA666's picture
COBRA666
Posts: 2418
Joined: May 2010

What was the initial diagnosis? John

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

I'm HL so would those meds work for me ?

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Need another BMB will be getting it tommorow . Got a call from Bone Marrow Transplant Dr and they want to get me approved for a clinical Study of Adcetris (SGN35) for Relapse HL. Well this morning I go see the oncologist and she was constantly saying "IF" it get approved and then went into if not then they will try MOPP and that I will never be cured and they will prolong my life ( Almost wish I never asked some questions ) I went crazy.

I just wanted to come on here and update everyone

Another thing I got a call from City of Hope saying I have an Infusion next friday. I hope that means it got approved

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

I hope you get approved, that is some harsh news to deal with, try to stay positive, keep us updated.... Vinny

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Diaz1, I wish you the best and hopefully you can get into the clinical trial! Will be crossing my fingers and toes for you, Good Luck!

Sincerely,
Liz

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

just completed BMB # 8 or 9 lost count .... Ill update all soon

Susy28
Posts: 18
Joined: Mar 2010

I'm praying for you my friend. Don't lose the faith and please keep us updated.

Susy

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Its back . But turns on this is the 2nd relapse not third. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Its back . But turns on this is the 2nd relapse not 3rd. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Its back . But turns on this is the 2nd relapse not 3rd. Makes it easier to handle for some reason . Got approved on Clinical Stufy and will be starting soon at City Of Hope

allmost60's picture
allmost60
Posts: 3154
Joined: Jul 2010

Hi diazr1,
I'm so sorry it has come back, but very happy to hear you are approved for the clinical study/trial! I am reading good things about clinical trials , so stay hopeful and keep positive thoughts...(as best as possible). I like the name of your hospital/clinic.."City of Hope"...sounds good to me! Best wishes and thank you for getting back to us...be sure to let us know how things go for you. Sue (FNHL-2-3A-6/10)

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Cotinue to have the postive thoughts and I was more prepared to get the news I was treating it like it was back since the "suspicious" call. Anyone interested it will be SGN35 that I will be given

diazr1's picture
diazr1
Posts: 101
Joined: Mar 2012

Just updating everyone

vinny59's picture
vinny59
Posts: 1030
Joined: Nov 2006

thanks for the update, I wish you well, keep fighting... Vinny

anliperez915's picture
anliperez915
Posts: 742
Joined: Sep 2011

Hi Diaz1,
That's great, hope you do well on the trial! Will be keeping you in my prayers.

Sincerely,
Liz

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

I've heard such promising results with SGN35. Best wishes to you.
Cathy

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