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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.
Thank you for your update and I’m praying that the Merck anti-PD1 is the drug that works for you/
Update: After one infusion with pembrolizumab the side effects for my husband have been significant fatigue and very sore muscles.
We were told the immune reaction for the previously treated brain mets (cyberknife) about three weeks ago would also cause fatigue for a while beginning one week post treatment.
Steve has a tumor in his T9 vertebrae which has been causing a lot of pain, so he is getting localized radiation for that — probably also causing more fatigue. With all this, it’s difficult to know how much of his fatigue is from pembro vs the other treatments.
In this expanded access program Steve is allowed to receive the radiation to the tumor in his back but it has to be completed before the next infusion. That will delay infusion #2 from next Thursday to the following Monday. Too bad for the delay but at least the radiation treatment was approved by the drug company.
That is interesting to hear, and I had been wondering about that. It seems it would be good in a combination trial to provide tumor shrinkage with something like anti-PD-1.
I thought I’d add a bit to this chain as my husband Steve has been on this trial (ADC) at Sarah Cannon since January, and it looks as if we will be moving on to another drug as well.
His scan 6 weeks ago was characterized as “90% good”, with some shrinkage and some new growth in others. We waited to see if perhaps this would stabilize, but the scan this week showed more growth in some, new tumors on his spleen, although some reduction in one or two other locations. Overall there was more growth than shrinkage.
Over the course of being on the trial Steve had several small mets shrink and disappear, the mets in his lungs improved, and he no longer has any subcutaneous mets. He is still in better shape with his tumor burden than in January. He moved into this trial after progressing on ipi. The ipi did appear to kick in late and there’s no way of knowing how much of the change is attributed to each.
Overall, this trial did what we expected. It helped, it was never expected to eradicate the cancer and it bought time to wait on other treatment. With prior ipi use and being BRAF negative this was the best option at the time. I’m very glad this trial was available.
The worst side effect for Steve has been the progression of peripheral neuropathy in his hands and feet. His last infusion on Thursday was at a lower dose, and the neuropathy still progressed. The partial numbness has extended past his fingers and is now in his hands. It’s all still tolerable but with the latest scans it seems a good time to move on.
The ADC drug and the associated clinical trial is described earlier in this thread, plus Jonathan has posted a lot of helpful information about it along with his own experiences. Try searching here for ADC.
This Antibody Drug Conjugate (there are others – one has been approved a certain type of breast cancer) is a targeted chemo drug in that it contains a few molecules of a very potent chemo attached to other drug molecules that seek out receptors that are often over-expressed on melanoma tumor cells (not always, I believe) and then delivers the very effective chemo inside these cells. There is still some leakage to the rest of the body however and thus the side effects which have been described.
I would say that the reason that anyone would have to wait for Yervoy (ipilimumab) and/or BRAF drugs to fail to get the expanded access anti-PD-1 drug, still only available thought a clinical trial protocol, is that approved melanoma treatments have to be tried first before this unapproved drug could be tried.
My husband Steve doesn’t have to wait for anything else to fail (he already had ipi a few months ago) to ask for access to this anti-PD-1, but we choose not to do that yet. It doesn’t make sense to leave a drug (the ADC) that is working for one that may not work, even the anti-PD-1. And, once leaving the ADC clinical trial to try another drug, he would not be able to reenter it.
My suggestion regarding your question on your husband’s tumors on his face and treatment would be to start a new threat with that topic where I think you would be more likely to get some answers. I have no experience with that – I hope you can find someone who has on this board.
Yes, we’ve thought about this and it is certainly good news that this anti-PD-1 drug is available.
However, since the ADC drug is working for Steve, we will stay with that. It would be a difficult decision to leave a drug that is working even for an anti-PD1 drug which may or may not work. Of course part of the difficulty is that the Merck drug offers a possibility of a more complete response which the ADC drug probably cannot provide. Eventually we will have to consider what to do, but hope for now to continue to see his tumors shrink with the ADC trial at Sarah Cannon.
I hope you are able to find the best choice for your husband – hopefully the Merck anti-PD1 can be successful for you. A great potential combination for the future (in addition to some of the other combos being tested) would be an ADC drug plus anti-PD-1.
Is your next infusion on March 25? Steve’s is that day and I’ll be there for that one as well. Lyrica sounds like a treatment to avoid! I hope your neuropathy can improve. Steve’s is only in his hands, none in his feet so far. He was told in his last visit that there would be some ADC results presented in May, but I don’t know where.
An update on the ADC side effects: Steve had his second infusion last Tuesday Feb. 4. His WBC count had risen enough to be over the required limit. Of course it is starting at a much lower point than prior to his last (first) infusion so it will have to be watched this cycle. Some mild flu-like side effects began on Thursday, plus some nausea and GI issues and fatigue. Those lasted from Thursday through Sunday. These were similar to the side effects from the first infusion, but probably a little more pronounced. He also on Sunday began noticing some tingling and slight numbness in his fingertips. Hair loss continues, and is mostly gone by now – time for a buzz cut. The next scan is next week, and of course we are hopeful we will see continued tumor reduction.
Side effect update for ADC trial: This week Steve’s blood work showed continued decrease in white cell counts, low enough that he was given a prescription for antibiotics. He is also experiencing significant hair loss. He also feels achy with a cold, which I hope is a separate thing and not related to treatment.
The next infusion is Tuesday so we will how the low (really low) white cell count is treated.
He has continued to see (feel) decreases in subcutaneous nodules, and no new ones. Prior to treatment there were new ones almost every day. Again, some of it may be the prior ipi delayed effect, but still so glad and thankful to see some significant response from this treatment.
I found some info on pazopanib and paclitaxel (chemo) here:
which had a small number of subjects, with all patients treatment naive and with involvement from UC Irvine.
NCT01107665 for clinical trial perhaps? Not sure if that is the correct one, or if it is the one described to you.
These are such difficult decisions – hang in there.
Yesterday Steve had his first scan 9 days after the first ADC infusion. It’s done this soon just because of the trial data requirements. We were surprised to find out that there was notable decrease in the tumor sizes, or stability in all of them. We also think that the ipi taken earlier may be kicking in for some impact, but overall this is great. It’s the first positive news since he went to Stage IIIC about 7 months ago. We are still planning the next step in case we need it, but now hoping this works for a while.
Symptoms after the first infusion were mostly mild. After the second day he had some mild flu symptoms for a couple of days, then he felt fine. A few hours after the infusion (this seems like a strange symptom) he had intermittent hiccups for about 24 hours. We were told it’s possible this could be from the steroids taken with the infusion. Will have to see if that repeats.
Thank you for your response. Your posts about your experience were very helpful to us in knowing this trial is at Nashville and what to expect. Steve is starting on a 2.4mg/kg dose as that is the expanded phase 1 dose. As you know it will be weekly visits for quite a while, but it seems he will be on the same three week infusion schedule as you. I realize he was fortunate to get in and am also surprised that it is almost closed.
Steve got his first infusion of the ADC drug at Sarah Cannon yesterday. This is the expanded phase 1 this trial.
We were able to see Dr. Infante before Christmas, but found there were no openings in the trial at that time, but he thought one would open up soon which it did. Tumors have grown larger in his lungs and other locations in the last few weeks so hopefully this will do something positive for him. We also think some of the sub-surface nodules have shrunk some, so are hoping that perhaps a delayed ipi response might be having some effect.
I found that trial is not recruiting anymore at the University of Chicago. I don’t know about the other places. I asked the contact at the University of Chicago about another trial: Anti-LAG with Nivolumab (Nivolumab given in 2 of 3 arms) NCT01968109, and he said that trial will begin recruiting in mid-February. Interestingly (and frustratingly) prior ipi is an exclusion even though it is not used in the trial. There is an exclusion reference to “Any prior exposure to immune cell modulating antibody regimens except as described…” which I guess covers ipi; however, prior anti-PD-1 and anti-PDL are allowed in two of the parts of the trial if the patient was unresponsive and progressed on those treatments. Interpretation is difficult but probably some response followed by progression would not be allowed.