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Clinical trial with AVG

duttdip
Posts: 2
Joined: Jul 2005

I ahve stage IIA Hodgkin's. My doctor at UCSF gave me options to choose between a)standard ABVD treatment with radiation therapy and b) an AVG regimen which is under Phase II clinical trial.
He claims the Gemcitabine (The G in AVG) that replaces Bleomycine and Dacarbazine has less lung-toxicity and less side effects.

I am in a dilemma . What do I do..Though I have confidence in my doctor only 98 people have undergone this. Is it worth the risk? Please note that Gemcitabine has nbeen there as a standalone drug for Hodgkin's for years... Also in the AVG regimen there is no radiation therapy.

allidee's picture
allidee
Posts: 10
Joined: Apr 2005

Hmm...you are in a hard position. First of all, I send my best to you right now. I imagine you are newly diagnosed, and the last thing you want to be responsible for is choosing your treatment. When I found out I had Hodgkin's IIB I wanted my doctor to tell me what to do -- not ask me! But I can tell you my experience.

My doctor recommended ABVD for 6 months, but I did not tolerate the Bleomycin well at all. In fact I had to stop taking it just about halfway through and continue the regimen without it. I've been finished with chemo since March 10, 2005, and I still have problems with my lungs. I'm 28 and was in great shape before all of this. Now I have trouble going up and down the three flights of stairs to my apartment. The lung toxicity that is caused by Bleo is a serious side effect for lots of people. I had to take steroids for over a month because I had such a hard time breathing. Just getting up and walking across the room was difficult.

Now, I don't want to scare you, because this certainly doesn't happen to everyone, and ABVD is a successful treatment option for many many people. (On a side note, I also had 13 rads, and have been in remission ever since.)

It is my understanding that for a treatment to enter into clinical trials it has to be shown to be at least as successful as the standard treatment option, in this case ABVD. Maybe it is even better than ABVD and that's why it is being tested.

If you trust your doctor, talk to him or her. And if necessary, get a second opinion. Your doctor will not be offended, and it's worth the extra week or two of time to give you peace of mind that the treatment you are choosing will cure you. That is the goal with Hodgkin's -- to cure you. (Isn't that awesome!!!!)

I wish you the best of luck, and peace of mind. You can email me off the board if you want to chat more.

Best,
Alli

positive
Posts: 75
Joined: Dec 2003

Hi there, my dad had gone through 4 cycles of ABVD and 1/2 way through he had the Bleomycin removed due to mild lung toxicity. My dad finished out his treatment without the Bleomycin. My dads lungs have recovered 100%. The oncologist said out of the ABVD the bleomycin being deleted will not compromise his cure. I would go with the AVG for your stage. Just look into the Gemcitabine for its side effects. The doctor may say it less toxic to the lunggs. But it could be harmful in another way. Try to weight out the good from the bad. Are you considered early stage, my dad was IIA also, nodular sclerosis, non-bulky. If you have non-bulky tumors, that is a good thing. If you have bulky tumors I would go with the ABVD and just have the doctor monitor your lungs. I'm pretty confident about what I say. I have learned alot about Hodgkins. Ask your doctor if you are considered early stage. Be realistic about the side effects, there will be some and you will tolerate it. My dad went thought chemo at 71 years old. He is in remission for over a year now and is doing well. Make sure your doctor is a lymphoma specialist and call Sloan-Kettering they are one of the leading hospitals for curing Lymphoma. Get some advice from them. You can't go wrong. Either way your gonna have to have the chemo there's know getting out of it. Like I said the chemo is not the easiest, but you can get through it. Just educate yourself about the side effects and try to take one day at a time and communicate alot with loved ones.
I hope everything will be smooth sailing and I hope you can come to a decision soon.
You can email if youd like. God Bless and lots of hugs and support.
jcm1101@aol.com

kiren
Posts: 40
Joined: Jul 2004

I am 7yrs Hodgkins survivor, stage 2B. I was treated with ABVD. So far the only problem I experience is that I find difficulty breathing if I use household cleaning products specially ones with strong fumes. So I just try to use alternatives. As far as I know ABVD has been quite succesfull in treatment and attaining a high cure rate. If I were in your position I would also ask my doc about long term side effects of the new drug regime. While in clinical trials would they know about the long term effects and all? Just make sure you know all the possibilities with the trial drugs. Good luck

lhodnet
Posts: 62
Joined: May 2004

I am not sure what I would do, but my doctor presented me with the Stanford V treatment - I did a ton of research on this, the bleo and vincristine were far less doses than if I were to go through ABVD, plus this treatment was 12 straight weeks rather than 6 mos, every two weeks.

I chose to do this treatment - it is out of clinical trials, but is still not 100% approved. In fact, there were conflicting reports.

I am happy to say that this worked for me. I was stage IIBX, and that fits the Stanford V profile to the T. I believe that Stanford V is a good option for stage I & II.

Maybe that is also something else to look into?

I am sorry I can't help you with your decision. The Stanford treatment was out of the phases of clinical trials, which is why we decided to follow through with that treatment.

Regards,
Lisa

tsivels
Posts: 18
Joined: Jan 2004

I think you should give AVG a shot. I was diagnosed two years ago with IIB Nod. Sclerosis and had 12 treatments of ABVD and about 30 treatments of radiation. The radiation caused radiation pneumonitis, a rare condition as a result of radiation to the chest area. To make a long story short I developed a cough from this condition, which hid the fact that my Hodgkin's was coming back. I am not sure what I will be taking this time, but it will not be ABVD. It might not be such a bad thing to go without radiation, if it's proven to work-even if it's only be used in 98 cases.

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