Hi! Everyone,
My son has relapsed progressive HL. He was diagnosed in 2009. he has been continuing treatments of various chemotherapies, autologous stem cell transplant, radiation, more chemo, SGN -35. Predominantly it is remaining in his lungs and stomach areas. After SGN -35 he had a very bad lung infection very similar to pneumonia. Have any of you had a similar reaction to SGN - 35?
The doctors are now suggesting Bendamustine. What have you heard of that?
16 years ago I had a autologous stem cell transplant it was a tough road to take but as I look at now I would of missed out on alot. Before my stemcell transplant they gave me EChop just to keep me in remission until transplant. Back than you had to fight with ur ins co to cover the transplant took 6 months longer than they thought ins problems. There are others on this site also that have been in remission longer than me. Its a process.
Vin-
I'm sorry to read about your son. Looking at the data from some of the SGN-35 (brentuximab) trials, it appears as though one of the notable side effects was upper respiratory tract infection, so he's not alone.
Regarding bendamustine, it's been tested a lot lately against various NHLs and my understanding is that it's a good drug for patients whose disease is recurring or refractory, like your son, and for heavily pre-treated patients, like your son, because it has a low toxicity profile. I think generally though it's not been administered alone- as a single agent- rather, it's been found to work in combination with one or more drugs. But that may not be the case for HL, I don't know.
So he's already undergone an autologous transplant?
ross
Hi! Ross,
Yes, he did undergo autologous transplant last year, followed by radiation. Soon after recovery from radiation, HL had moved into the R. lung and stomach. Radiation is the only treatment that has worked for him so far. But the doctors are very cautious about radiation to his lungs yet.
Thanks for looking at some data on SGN - 35. I also came across online, a few others, who had similar reaction to SGN -35 It was very scary because he has HL in the right lung and this reaction complicated his breathing, and had to be on an oxygen mask. Having recovered from all that after a month, i am not sure if he is ready for more agressive treatment. (Well, he says, "he is", but I am not sure if mom is...)
Bendamustine, I also read was given in combination with one or more other drugs and mostly given for NHL patients. I am not too sure about the toxicity issue. I think it is comparable to a regular chemo with low platelets, nausea, loss of appetite, etc. I really would like to go with a drug with mild side effects for him as his body is already very toxic.
With all this i am so happy he is fighting on. And all your love and support has been incredible for me to gain strength and move forward.
Vin
I'm certainly not advocating Bendamustine whatsoever, but while it does carry with it the same types of toxic side effects, it's pretty well established that they are more mild than other equally familiar drugs. for this reason it's found a place in heavily pre-treated patients, as well as in elderly patients.
that said, to my knowledge, bendamustine has not found its way into standard treatment guidelines even as a second-line or salvage treatment option yet, meaning either the existing evidence is not convincing, or the existing evidence is lacking.