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Final results

together
Posts: 13
Joined: Apr 2003

Today we went to the Doctor to find out the results from the PET test and the CT scan, The doctor had bad news, He said that the test showed that the lungs lit up and they found a new tumor in his abdomen. My son was diagnosed on Feb. 2002, and after going through ABVD chemo for six months, and then a stem cell rescue on March 3,2003, and 25 times of radiation that ened inJune 20, 2003, they said there is no more they can do for him. They said that some times the radiation can produce the light effect in his lung, but in his case they don't think so, they think he has a very agressive hodgkins. It is so hard to believe it because other then a dry cough and being tired he looks great. I asked to get a second opinon and of couse they said that we should but they doubt that anyone would tell us anything different. I was wondering if anybody out there got bad news like this and then proved the Doctor wrong? He was stage 3 B,how could this be happening to him.

AlloMan
Posts: 47
Joined: Jul 2003

I was diagnosed with stage IVB HD in 12/00, have been treated twice and relapsed twice. My diagnosis and first relapse involved tumors in my lungs. My first treatment was Stanford V (which includes radiation), first relapse was treated with high dose chemo and an auto transplant. My second relapse (3 small tumors in my liver found 12/02) was treated with an experimental chemo combo for relapsed HD, gemcitabine/navelbine/doxil. It worked very well for me, got me back into remission and in May I had an allogeneic bone marrow transplant. If your son has already had an auto transplant, a next possible step would be an allogeneic transplant. But his best chances of that succeeding require him to get into remission and finding a matched donor. I would suggest you go to the nearest major cancer center and consult with a Hodgkin's specialist, or at least a lymphoma specialist. I consulted with Dr. Arnold Freedman at Dana Farber Cancer Inst. in Boston about the gencitabine combo. Another doctor I previously saw was Dr. Jonathan Friedberg who is now at the Univ. of Rochester Cancer Center. As far as PET scans are concerned, I've had a number of them and it's my understanding they're pretty accurate. I'm no shrink, but it sounds to me like you're in denial. Before I was first diagnosed, in between fevers, I felt fine. Regularly rode my bike, worked on my house, but after a while it caught up to me. How could this be happening to your son? That is a question as old as cancer itself. If I had the answer, I'd be able to sell enough books to make enough money to fund enough research to cure cancer. My advice is to see a specialist, educate yourself, make the best decisions you can and hope for the best. Good luck to you and your son.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

I am so sorry about your bad news. The tumor in the abdomen must mean that the hodgkins your son has is particularly stubborn. As far as the lungs lighting up...I had that for many months following my stem cell transplant. I had the dry cough too. They kept doing PFTs and PET and CT scans and eventually they just disappeared! It was very worrisome. My doctor said that she had seen that happen to other patients before and that there is no real good explanation for it. It could've been viral, mold, radiation damage, she just didn't know. I'll be thinking and praying for you and your son.

Susan1299
Posts: 1
Joined: Jul 2003

I agree with Allo Man...find a specialist. Not sure where you are, but Stanford Hospital in Palo Alto, California is leading hospital for the treatment of HD. I should know, I've spent the last 3 years of my life there. I wish you both the best!

donna40
Posts: 3
Joined: Aug 2003

not final results, please keep fighting and get other opions. i'll be prayer for him.

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