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primary mediastinal b cell lymphoma (trials)

gaz82
Posts: 3
Joined: Jan 2015

Hi Everyone 

I post this on behalf of my wife who is currently fighting this horrible disease. We feel as if we are running out of options. MY wife is 34 years of age and has had numerous lines of treatments. fIrst she had R-chop x 6 and radiation and got a complete response and was in remission for 9 months until she relapsed in the origanal site in chest .Our consultant then started r eshap for 2 cyles had pet showed response and was to have 2 more cycles then allo.week before allo was to happen started to have a wheezy cough which the following week showed in pet scan that the disease had progressed with kidney involvement.our next step was r epoch for 2 cycles which showed response then she had 2 more cycles and another pet last week which showed the disease has progressed again like the r eshap.we are distraught.Our onc says she is chemoresistant but has started r-gifox to try and stabalize things.He is keen on car t cell treatment but as we are not american citizens we can not avail of it there and the closest starting trial in europe is may which is to far away. please any advice would be greatly appreciated.

 

illead's picture
illead
Posts: 875
Joined: Aug 2012

I am so sorry, it is obvious this is very overwhelming for you.  My husband is the one with Lymphoma so I can understand how you must be feeling.  Thankfully he is in remission now, but he has relapsed once, so I know how scary that is.  I have a suggestion but it is only that.  Have you or can you contact any German doctors?  They are very lymphoma savvy and have been responsible for introducing some successful drugs to the US.  Do some homework online.  Two names offhand that I know of are Dr. Christian Geisler and Dr. Mathias Rummel.  I am sure you will find much more information in your search.  I hope this is a help to you and a little glimmer of hope. I certainly hope the very best for your wife, and thank you for being her loving caregiver.  I know help is out there, my prayer is that you can find it.

Becky

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Welcome gaz82.  I'm so sorry you are having to experience this.  I hope you find the help you need.

I found this but it may not be helpful:

 

I am not a US citizen. What can I do to get treatment in the US?
The availability of financial support for non US residents is extremely limited. Most non-resident patients arrive with funding from their families, their own savings, or sponsorship from a philanthropic organization. Some patients do find the care they need through clinical trials. The patient, the family or the physician can inquire about currently recruiting trials and their locations. Try the following web sites: www.nih.gov (National Institutes of Health - highly rated care), www.nci.nih.gov (National Cancer Institute - also high rated), www.clinicaltrials.gov (Additional information to make an informed decision).

 

 

gaz82
Posts: 3
Joined: Jan 2015

Thanks Becky and JW for replying to my post and for your advice.  As things stand my wife is due to get 4 rounds of R-GIFOX  . We  pray we can get to an allo transplant from this or else trials will be our last resort as our oncologist said he will not be prescribing another type of chemo if this isnt successful.  My wife has been very sick from 1st cycle of this more than any other chemo. Anybody have this particular chemo ?

Max Former Hodg...
Posts: 3699
Joined: May 2012

gaz82,

I'm terribly sorry you and your wife are in this battle for survival.

R-GIFOX is apparantly a combination of existing drugs put together in recent studies to fight advanced, aggressive, relapsed NHL. I had not heard of it before now.  This is a common practice in oncology research: Often new therapies are not brand new drugs, but a handful of established drugs put in new combinations against a specific, usually rare, form of disease.

This article linked concludes from a relatively small study that it is effective in at least getting patients to the point that they are transplantation-capable. Short-term survival rates are above 50%.

Since he is using this drug on your wife, your oncologist is likely aware of the information in this report, but since it has a lot of links on the subject, I would print it and give it to him anyway.

http://www.ncbi.nlm.nih.gov/pubmed/16702180

This site has articles on each of the individual drugs in R-GIFOX:

http://chemocare.com/chemotherapy/drug-info/default.aspx

Many, many writers here have come back from double-relapse to live healthy lives.

 

max

goodgoing
Posts: 4
Joined: Jan 2015

I am so sorry and I pray with you. My Husband starts on treatments soon his is CLL and in late stages. I do know how you feel.I wish I had advice,but all I have is to pray the Dr.  and Medical team lets God lead them. God bless you and your young wife.

gaz82
Posts: 3
Joined: Jan 2015

It is with great sadness I post this. It does not feel real. Last month I lost my beautiful wife to this cruel disease. She had battled it for so long. I am so proud of her for the courage and strenght she showed throughout. LIfe seems so pointless now she has gone yet it is her love of life that she fought so hard for that keeps me going. She helps me every day. I know she is watching over me.

illead's picture
illead
Posts: 875
Joined: Aug 2012

We are so very sorry, we know this is so difficult for you.  Your world has fallen apart, I haven't gone through what are going through now, but when Bill nearly died, I felt like crawling in a hole and never coming out.  I cannot imagine how I could feel worse but I know that you do.  I hope time will help take the rawness of your loss away but I know that right now you are suffering.  Please take comfort in knowing that we care and we know your family and friends are there for you, lean on them.

Thinking of you and keeping you in our prayers,

Bill & Becky

Max Former Hodg...
Posts: 3699
Joined: May 2012

Gaz,

I'm terribly sorry that things ended up with your wife's passing. She was only 34 ? I know that makes it much worse.

It is not frequent that we learn of someone on the Board dying, but of course it does happen, and it is always a quiet time, a time to meditate on the bigger issues in life and death.  I thank you for the update, despite the sadness. 

max

The "fall season" of her life came too soon (see video)

https://www.youtube.com/watch?v=S9nSgMwtkK0

.

OO7's picture
OO7
Posts: 282
Joined: Sep 2014

Please accept my deepest condolences.  This is devestating news and my heart breaks for you.  

I am a patient and know little of what your going through but hope and pray your beautiful Angle will live in on in your heart and shines brightly through you.  May you always feel her love.

I'm so sorry for you loss.

 

 

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