- This topic is empty.
August 18, 2014 at 8:59 am #22138dhrahnParticipant
So confused!! Please bear with me while I get this out… My husband Dave hasn’t been doing well. Dx July 2012, Stage 4 melanoma – did zelboraf for 9 months shrunk everything and then quit working. Next failed ipi, next trial msb00450445 drug with sbrt and interluekin – failed with horrible side effects – trouble breathing, rigors, sweats, felt miserable, did PD1 eat two infusions and was hospitalized for kidneys starting to fail, severe pain, critically high potassium and rapid profession of tumors. He was taken off PD1 and immediately started back on zelboraf + mek. It has been 6 weeks since leaving the hospital… organ tumors seemed to have responded in first scan but sever progression to left lower leg bones, shoulder (causing fractures), unable to walk, weak. Overall he feels ok somedays but still very weak. Dr. Hamid doesn’t believe he was on pd1 long enough to know if it was or wasn’t working. They do want to try again when it comes out. He really wants Dave to do biochemo. We don’t have a good feeling about it. If Dave was stronger, stage 3 or hadn’t had the horrible side effects from the little amount of interluekin he already had maybe we would consider it but where does quality of life come in???? We are so confused. Our doctor here in San Diego doesn’t think it is a good idea either. This is the email we got from Dr. Hamid tonight :
“The BMS ex access is not an option since you have had the Merck drug.
Additionally the rate of disease progression when the combo fails will be only responsive to Biochemo. We have seen it work in this instance – with amazing results.
Need to be on top of this. Please.”
We have only heard him talk about 1 guy in somewhat similar situation. UGH!!!! Our concern is Dave is not healthy enough to handle it. Are we rejecting something that people have really had success on stage 4 with mets everywhere!?! We love Dr. Hamid but trying to decide if trusting our gut is the better option here?!?!
No judgement on your opinions we just want to hear what others think…. Thank you for reading and sharing your thoughts….August 18, 2014 at 11:42 am #65221Catherine PooleKeymaster
If your husband responded badly to IL2, then he would to biochemo with is a combination of IL2, interferon, and possibly a few other drugs added in. Here is an overview: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2365480/if is from 2008 and recommends against it.
Biochemo fell out of favor among most of the top cancer centers a while ago. It is ineffective and pretty toxic. Maybe you should get another opinion at UCLA? There is a lot of current research there as well and excellent doctors.
I can understand your frustration and most likely exhaustion from the therapies you have tried. I hope things get better for the two of you. Let us know how things are going and feel free to call the helpline. (866-463-6663)August 18, 2014 at 3:43 pm #65222lindamgParticipant
My husband has been on the Merck Anti-PD1 and managed to get his third infusion although they were worried about too much disease progression when I managed to get him to the clinic for his last (third) infusion. It sounds like your husband has a high tumor load, as does mine.
His blood work was way off, including high potassium as well. He also had low sodium and electrolyte imbalance. After coming home and dealing with this for a while he is finally in the hospital where he was diagnosed with Tumor Lysis Syndrome. The fact that you mentioned high potassium made me think that possibly your husband might have this issue? I have not heard of this before and have not seen it discussed anywhere with melanoma. When I’ve looked it up other cancers are referenced but not melanoma.
It basically is that dying cells are dumping their contents into the bloodstream and the patient’s body is not getting rid of it successfully. High potassium is one of the major concerns. Our doctor stressed that this can be due to regular body cells dying as they are impacted by high tumor load. It also can be dying tumor cells when there is a high tumor burden as well — of course we are hoping that is it, but don’t know. It has also made him very weak.
It was critical to get his blood work back in balance. We are not ready to throw in the towel, so that is what we are doing in hopes we can still get another treatment.
LindaAugust 18, 2014 at 5:01 pm #65223RJoeyBParticipant
Everything I’ve heard and read about biochemo is right in line with what Catherine wrote… it’s a combination of several difficult treatment regimens (interferon, IL-2, chemotherapy) that alone have low response rates and in combination aren’t much better. There are always going to be success stories, but it sounds like a rough road. (I’ve had IL-2 and TIL+IL-2, plus I’ve also done ipi, among other things).
A few things are puzzling. I’ve heard good things about Dr. Hamid and his is one of those names I see a lot of when I’m doing my own research, so it surprises me a bit that he’s recommending this course of action. In the email you quoted from him, he does mention “amazing results” with biochemo after having failed the BRAF/MEK combo — I’m not aware of any studies of this nature, but it would certainly be worth following up with him to understand that aspect. Perhaps he and others have observed some cumulative benefit when BRAF/MEK is followed with biochemo. The question then becomes if your husband is strong enough to withstand the full biochemo regimen to see some benefit. The one other possibility I wonder about is if he sees the biochemo as a “bridge” to when the Merck anti-PD-1 is approved in October? If no other options are being offered by anyone, then maybe he thinks a few months of biochemo would be more beneficial than just doing nothing for the next few months. Again, the question is the benefit vs. risk right now of undergoing biochemo for your husband.
Just some additional food for thought. Again, as Catherine said, I’m sure this is very frustrating. Certainly a second opinion is in order, as is another conversation with Dr. Hamid (a true sit down vs. emails) to maybe explore some of the things I was wondering about above.
Wishing you both strength and wisdom,
JoeAugust 18, 2014 at 5:42 pm #65224dhrahnParticipant
Thank you!!!! We appreciate your opinion, thoughts, recommendations. I agree that a 2nd opinion is in order re: biochemo. It is a rough road as all of you know. It sure does help knowing we are not alone though…
The cocktail is cisplatin, vinblastine, temozolomide, interleukin -2 and interferon – alpha 2B
- The forum ‘Melanoma Diagnosis: Stage IV’ is closed to new topics and replies.