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2nd Relapse Hodgkins

ANGEL42's picture
ANGEL42
Posts: 3
Joined: Apr 2007

Hi Everybody! Been 10 years since I`ve been on the boards..Just found out that my Cancer is back after battling Stage 4 Hodgkins twice with last remission 10 years. I always got such awesome support and advice from people like ourselves that would only know whats its like to be a Cancer Warrior. I`m sad its back for a 3rd time but ready to battle the beast one more time. Petscan revealed a 4.5 cm mass in upper lft. lobe with nodular involvement on trachea and hillar nodes. Both lung Surgeon and Onc. believe its my Lymphoma back and go for a Needle Biopsy on mass in lung Aug. 15th...So much to share and hope I can support and inspire as well.

PBL
Posts: 182
Joined: Jul 2016

Hello Angel42,

Sorry you have to be back under these circumstances... I imagine that after ten years you did not expect your lymphoma to return.

I wonder - did you find out in the course of routine follow-up, or did you experience new symptoms lately?

PBL

ANGEL42's picture
ANGEL42
Posts: 3
Joined: Apr 2007

Hi PBL, 

I think as a cancer Survivor there is always a little part of you that fears it return and in a way prepares emotionally if it does. I found out through an incidential Cat scan for a Fractured rib which showed mass and enlarged nodes.In a way a blessing, because it looks like we caught it early.

Angel 

lindary's picture
lindary
Posts: 642
Joined: Mar 2015

Round 3! I was diagnosed Dec 2014 with follicular non-Hodgkins lymphoma. 6 cycles of R-Chop, 3 cycles of RICE. Prepped for Stem Cell but it was put on hold twice because of some issues. Eventually it was cancelled 8 months after the last chemo. Last year Nov I was told I was officially in remission. Still working and dealing with life.  I will be interested to hear of your experience with fighting cancer twice and now facing a third battle.

ANGEL42's picture
ANGEL42
Posts: 3
Joined: Apr 2007

Hi Lindary! God Bless you on your remission. I too was supposed to do a Stem cell transplant after 1st relapse but choose not to and move forward with another round of Chemo and adding 5 weeks of radition at Sloane ketting in NYC. That seemed to do the trick for the last ten years...As far as facing a third time battle, I find through Spiritual support and Positivity I WILL be a 3 time Cancer survivor. I do well with Chemo and excited that this time around we are going to add immunotherapy. Radiation, not so well but will do whatever needs to be done outside of a stem cell transplant to beat the beast.

Angel 

catwink22's picture
catwink22
Posts: 280
Joined: Sep 2009

Hi Angel, sorry you're back for a third run. They have come so far in treatments in the last 10 years, immunotherapy is indeed miraculous! I'm in the middle of a stem cell transplant and I'm curious as to why you are not considering it? No judgement here, strictly curiosity. Good luck with your treatment!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Angel,

You will need to meet Po... our resident relapse and SCT expert. He speaks around the country on occasion at T-Cell professional seminars.   Last count he has had 19 chemotherapy drugs employed and I forget how many relapses and SCTs, although his have all been extremely rare T-Cell forms of Non-Hodgkins.   I am intersted in which form or forms of HL you have had, since relapse with conventional HLs is relatively uncommon, but relatively COMMON with the form of HL I had -- NLPHL.

Wishing you a fast return to ten more years of N.E.D.,

max

po18guy
Posts: 993
Joined: Nov 2011

Here is an information sheet on relapsed Hodgkin's from the Lymphoma Research Foundation. There are many options, but identifying the enemy is primary. For better or for worse, it may be a de novo disease, such as Primary Mediastinal Large B-Cell Lymphoma, but in all likelihood, it is the Hodgkin's again. Since so much time has passed, many treatments exist that were not available when you went through this before. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3280
Joined: May 2012

Angel,

As Po noted, Hodgkin's usually returns as Hodgkin's, but the chemo agents can cause it to morph into aggressive NHL, or even leukemia.  If it changes to NHL, it is almost always aggressive Large-B, at least on first-relapse.

My strain (NLPHL, extremely indolent) is 15% likely to relapse (higher than most), usually as NLPHL again, but then usually as something else.  It is what took Senator Arlen Spector (Pennsylvania):  First NLPHL, then NLPHL again, then someting aggressive which was the end for him.

 

max

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PeprmntPat55's picture
PeprmntPat55
Posts: 56
Joined: Aug 2016

Hi Angel 42!  I was also diagnosed when I broke a rib last year and had a chest xray to rule out a ruptured spleen!  A tennis ball sized mediastinal mass was seen on that xray, then CT Scan, PET Scan plus lymph node biopsy confirmed NHFL, low grade but stage 3 symptomatic.  I really wish you the very best with treatment.  I am currently in remission, having had my last treatment on Jan 24th this year.  I am on the 2 year maintenance plan of Rituxan only. My regimine was Rituxan /Bendamustine.  I feel that I tolerated it well.  Best to you and look forward to reading your progress posts.  

PeprmntPat55

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