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June 30, 2014 at 12:46 am #22069
Hi, im from spain and first so sorry because my english is no so good.
Im stage iv melanoma since feb 2014, im right now taking trametinib and dabrafenib, and after few months disease is under control, but i have a question.
Is someone taking these drugs intermittenly to avoid or at least delay the resistance.?
I have read that it could be usefull and also i read a post in other place someone who was taking a drug holiday 1 out 4 weeks.
Thanks so much and lets go to fu…. the melanomaJune 30, 2014 at 4:11 pm #64835
I’m also on the combo (since August 2013). Several months ago, my oncologist (a melanoma specialist) raised intermittent dosing as a possibility down the road. I asked about it at my most recent appointment earlier this month. Based on discussions she had with colleagues at ASCO, she said folks generally weren’t doing it (so, therefore, I’m not doing it).June 30, 2014 at 4:45 pm #64836Catherine PooleKeymaster I think it is fine to lessen side effects, but I agree, probably should be kept up unless you have a recurrence. Plan B. is always useful in that instance.June 30, 2014 at 7:24 pm #64837 Thanks to all of you for your reply.
Did you hear about someone who stop voluntary the combo to go into inmumotherapy and after fail on it came back to combo with succes?
Im thinking to do that, because im afraid that after fail inhibitors inmunotheraphy could be less efective.
I read a lot about that and is very scary. …June 30, 2014 at 9:29 pm #64838
Yes, I did a form of what you describe–I worked in ipi earlier this year (stopped after 3 infusions due to moderate, but persistent colitis).June 30, 2014 at 9:58 pm #64839 Hi MathewR
Did you stop because an advice of your doc?
And what was the reason? How was your evolution whit tumors during the period of ipi?
And now when you returned, is working again the combo?
im very sorry for all these questions but you are very close to my position
I have tumors in lung and axile
In the case i stop i would go directly to pembro
Thanks a lot for your answersJune 30, 2014 at 10:37 pm #64840
Jualonso, I’ll email you offline, but the long and the short of it is that I raised the issue with my doctor and I am uncertain as to whether I am an ipi responder. From your prior post, it appears that you’d prefer to move from the combo to Merck’s PD-1. From what I’ve read, you’re required to have failed ipi as a condition to eligibility for Merck’s EAP.July 1, 2014 at 8:19 pm #64841GillyParticipant Jualonso – we are in France – officially you need to fail Ipi to get the Merck anti pD1 – the EMA will be deciding at the end of the year on whether it can be a treatment line – my husband is just failing zelboraf/Vem and we were hoping to avoid Ipi and go straight onto the anti Pd1 – but it looks unlikely – my husband was stage 3c in the axilla too – and now has chest mets and new in transit sub cutaneous mets – where are you treated ?July 1, 2014 at 11:34 pm #64842 Hi Gilly,
In Spain is now in compassionate use and in second line, after ipi OR after braf inh. But honestly i dont know situation in France. Here your husband could go directly to pd1.
Im now whith a normal oncologist in Elche(Alicante) but thinking on the next future going to hospital universitario de valencia where there is an especialist doc Berrocal i heard is very good.
Keep going strongJuly 2, 2014 at 9:11 am #64843GillyParticipant
that is interesting, Jualonso, because – in France with the expanded access the failure of a Braf is not necessary (if you have the Braf mutation) but Ipi is still first line – I might push the specialist a bit – I think it is always best to be at a specialist centre for Melanoma especially if you have one fairly close.
All the bestJuly 3, 2014 at 6:46 am #64844rick1981Participant
My wife has been diagnosed with melanoma in January and was operated on. Proclaimed ‘clean’. But in June, two days after she gave birth to our first child (girl named Mila), she was diagnosed with metastasis/Stage IV (mostly liver, but also lungs, bones).
She has been on dabrafenib and tetrametinib for 2.5 weeks now and we see that the smaller nodes under her skin (size of a raindrop) have disappeared and bigger under her armpits have become smaller. Liver is still damaged but that was expected. But blood values are improving with LDH down from 2100 (?!) to 450 now.
Side effects are managable: fever every now and then, rashes after the tiniest bit of sun, and since a couple of days pains in legs and buttocks.
I have a couple of questions I hope you can help with:
– Dr. Sznol at Yale recommended to
switch to PD1 (Merck) or ipi/nivo combi (MBS) after 6-8 weeks of BRAF inhibitors, is there anything available in EUROPE already?
– Have any of you had the
muscle/inflamation issues due to the dabrafenib and tetrametinib combo? We read some of this on a Dutch webpage and hope it’s that and not new tumors that cause the issue. Our oncologist wasn’t very interested in exploring this further.
– Have you had
brain MRIs done? Our oncologist says it will not change the diagnosis or treatment, but in the US apparently they conduct stereotactic radiation/gamma knife radiation theraphy in addition to the BRAF inhibitors in case the melanoma has spread to the brain.
Gilly, are you saying that in France PD1 or nivo is available as first line treatment?
Thanks all for your help and will keep you informed on our story as well…
RickJuly 3, 2014 at 10:12 am #64845
Rick, yes the combo can cause joint and muscle pain–sometimes it comes and goes; other times it is more persistent. Yes, I still get brain MRIs since brain tumors would be treated with SRS.July 3, 2014 at 2:57 pm #64846rick1981Participant Thanks Matt! And the muscle pains, did you also have lumps? My wife has lumps which feel warm and are very sensitive to touch. On a Dutch melanoma forum I read it could be inflamation of the fatty layer under the skin, is this something you have heard before? Good luck with your treatment!July 3, 2014 at 4:14 pm #64847 Rick, I don’t have a lot of experience with subcutaneous tumors. I had 2 at the time of starting the combo and both were relatively small. One (the smaller of the 2) resolved within days of starting. The second (which was ~2-3 cm) resolved over time. In the case of the second one, I did notice changes within a week or two of starting the combo–it seemed to lose some of its mass, became less solid, etc.July 3, 2014 at 11:10 pm #64848LesliParticipant Hi Rick,
I just responded to your private email, but want to add that I have had brain MRI’s all along since my diagnosis in September 2013. At first diagnosis I had a 13mm brain tumor which was treated with gamma knife and is now completely resolved. Gamma Knife is an outpatient procedure and I was eating lunch with friends by noon. Since that time I have had 11 additional very small brain lesions, treated in two additional gamma knife procedures. Last month, I had a craniotomy to remove one of the lesions that did not respond to gamma knife. The craniotomy was not nearly as bad as it sounds, and I was back at work full-time within a week. I remain on Braf inhibitors and am on month 9. There is lots of debate about which order to try drugs and for how long and my understanding is that each patient really is an individual with a variety of disease load. In my case, I had liver, bone and brain lesions and surgery was not recommended. When the professionals are trying to prioritize and strategize, at this time it is still an imperfect science with multiple right answers in terms of order. I had heard that Sloan Kettering has a 3-4 month limit on how long they will leave patients on the inhibitors. I have had an excellent response (systemically body wise) with the inhibitors and my doctor’s strategy is to ride the wave as long as they are working and I am responding. Others believe in getting the good out of the inhibitors and then jumping to immune-therapy as soon as possible.
I am interested to learn more from all of you given all this news about PD1 limitations upon approval, etc.
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