Home Forums Melanoma Diagnosis: Stage IV need advice on zelboraf

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  • #20534
    Cecelia
    Participant

    My partner Margaret has just come off her reinduction of ipi, and has had good results even though the side effects were tough this time. right now, we are waiting for a repeat mri to see whether she needs to have radiation for a brain met, or whether ipi will take care of it. We are optimistic because of her severe reaction–more reaction, more results. However, the cancer centre just told us that if we want to do zelboraf at all, we need to do it now or else the drug company won’t provide it. I don’t know what to do. It seems wrong to move Margaret from the good place she is in right now to dealing with the side effects of zelboraf. I also wonder if it is important to wait until ipi wears off before we start zelboraf. Our ultimate goal is to buy enough to time to wait until anti PD1 is available in Canada, so were hoping that by doing one after the other we could gain time. Any advice would be hugely helpful–I don’t know what to do!

    #55799
    dallyup4
    Participant

    That’s a tuff one, I am no expert on Ipi as I have not had the pleasure of having to use it yet. I have been on Zelboraf for about 14 mos. and it is still working well for me although the side effects, for me, have been hard to deal with but what’s the alternative? I just had a scare a couple of wks ago when I went in for my 3 mo scans and they found a brain met that had been previously treated with gamma knife, had started to grow, so I had brain surgery for the second time in a yr and they got it all out, but at the same time I found a lump in my breast and my Dr. was worried it was a new Melanoma. He said if it was I could not continue on the Zelboraf, it couldn’t be justified. Now if I had just had the brain met and no new lesions anywhere else, I would be allowed to continue! Wierd, anyway, mammo, ultrasound, and it was definetly not cancerous. Yea for me. So, I am able to continue on the Zelboraf until it stops working. By the way, I did biochemo, w/IL2 in the beginning and had a bad almost fatal reaction to it, then went to just chemo for 6 mos and then Zel, all my lesions are gone or inactive. So, don’t know what did it but I’m still here. Don’t give up hope, attitude is everything.

    One thing I am curious about is, people keep talking about re-induction to Ipi. Does that mean it stops working and you get to try it again? What reaction did she have from it? I like you am planning on sticking around until they come up with a cure! Hopefully soon and maybe it will be PD-1. Good luck and let me know what happens. You are in my prayers.

    #55800
    Catherine Poole
    Keymaster

    Cecilia,

    I am thinking you need to first take care of the brain met before going on to another therapy. Reinduction, means she responded the first time to Yervoy but not totally, or recurred. I’m not sure the Yervoy will take care of the brain met and I believe the gamma knife is the best treatment modality for that. The Zelboraf may give her further tumor reduction though but you are right to think about side effects. I would engage your doctor in a thorough discussion of the pros and cons and discuss with your partner as well as to what she wants. Keep in touch.

    #55801
    Cecelia
    Participant

    Dallyup, Margaret did both courses of ipi with little problem, but after the last infusion of the second round she got a fever. Sounds innocent, but she stayed at 105/106 for over a week and that brought on a series of seizures from the brain met. Three weeks in hospital because of all kinds of other complications.

    Catherine, we have seen the radiologist, and he is waiting until the end of this month to see if two rounds of ipi will shrink the brain mets. He thinks that one is responding significantly enough to not require radiation, which could put us back in the range of STR.

    We did talk to the doctor again about zelboraf. She is most worried about the irregular heart rates that occur; I am most worried about the fevers and seizures listed in the possibility column. I’m hoping the sun effect will be less severe since we are in Canada. I honestly think we could wait awhile before doing this because Margaret is now feeling very well again and ipi is still working, but she has enough tumours to make it clear we will need this at some point and if we don’t do it today-literally-we will have to pay. $10,000 a month. I’m not sure if that is true in the States.

    #55802
    Catherine Poole
    Keymaster

    I would also keep an eye out for the anti PD1 trials which seem to be opening in other countries as well as the U.S. nice option to get after IPI. IPI is very expensive, but covered by U.S. insurance or the program by BMS. Zelboraf also is covered by U.S. insurance.

    #55803
    Cecelia
    Participant

    I looked at the antiPD-1 trial that Candi posted, and it excluded anyone who had had a gi tract obstruction. Margaret had a large tumour removed that had completely obstructed the bowel. Is this exclusion standard for anti-PD1? What is the reasoning? M. did two full rounds of IPI after her surgery with no impact on the bowel.

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