› Forums › General Melanoma Community › Moving fast now
- This topic has 18 replies, 5 voices, and was last updated 9 years, 6 months ago by
Bubbles.
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- June 22, 2016 at 12:18 pm
Having been removed from the clinical trial Frday afternoon and sent home with discs and reports, I took both to my local oncologist's office first thing Monday morning. On my way out I stopped by the Radiation oncologist's office to let them know what was happening and that images/reports would be uploaded into the system for viewing soon. They happened to have had a no show, so the put me in for a quick appointmet, went and got the discs to view at least quickly, then after the appointment took them back to be scanned.
I expressed my desire to get an appointment ASAP for Gamma Knife, but also my understanding that this might not be possible for a week or so given scheduling. They said they would get in touch with the facility and see what they could do.
Yesterday around noon I had the follow up with my local medical oncologist that had been scheduled before my trip to Boston. We discussed when to get started on the back-up plan (Ipi + one of the PD-1's in combo), tossed around ideas of waiting until after the brain mets were treated vs possibly starting before. Steroids were a factor in the conversation related to whether we would wean off first or go ahead and start since I didn't yet have an appointment for Gamma Knife. No real decision was made, but the general thought was that it would be ok to start on the higher doses with the steroids, then as I am weaned off steroids, perhaps reduce the dosages of the drugs (especially Ipi) to help reduce possible side effects.
After that appointment, I got the call from the Gamma Knife facility- they made an extra appointment on a day (tomorrow) that they don't usually do treatments to get me in. I was not expecting that at all. Called my medical oncologist to let him know, and got a quick answer that we would start infusions on Monday. Waiting on a follow up call from him today with a few more details, but in general pretty happy about how quickly things have moved along. In the process of shuffling things at work (meetings, etc) to make sure things get covered appropriately for when I need to be out for things, and hoping I get some success from these drugs that I've already failed without a lot of side effects. Have to try.
-Eva
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- June 22, 2016 at 6:33 pm
Hi Eva,
Great news in that your doctors and facilities are so accommodating. I don't think the ipi/nivo combo is something that can be altered dose-wise and as we commented on earlier, the combo of simultaneous radiation and immunotherapy are likely to boost effectiveness of overall treatment. Good plan! On a final note, although my specialist does not like using steroids while on immunotherapy, apparently (Celeste & Ed chime in here) most doctors say there are no negatives, and being on the steroids would also lessen any side-effects, caused by treatment.
Gary
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- June 22, 2016 at 6:33 pm
Hi Eva,
Great news in that your doctors and facilities are so accommodating. I don't think the ipi/nivo combo is something that can be altered dose-wise and as we commented on earlier, the combo of simultaneous radiation and immunotherapy are likely to boost effectiveness of overall treatment. Good plan! On a final note, although my specialist does not like using steroids while on immunotherapy, apparently (Celeste & Ed chime in here) most doctors say there are no negatives, and being on the steroids would also lessen any side-effects, caused by treatment.
Gary
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- June 22, 2016 at 6:33 pm
Hi Eva,
Great news in that your doctors and facilities are so accommodating. I don't think the ipi/nivo combo is something that can be altered dose-wise and as we commented on earlier, the combo of simultaneous radiation and immunotherapy are likely to boost effectiveness of overall treatment. Good plan! On a final note, although my specialist does not like using steroids while on immunotherapy, apparently (Celeste & Ed chime in here) most doctors say there are no negatives, and being on the steroids would also lessen any side-effects, caused by treatment.
Gary
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- June 22, 2016 at 9:29 pm
Eva, great news. On the steroids point, I think the rule of thumb is that they hold infusions until you are at or under 10mg (prednisone)/day–assuming that the steroids are being used to treat an active side effect. Hard to tell from your post. (I have not heard of folks taking preventative/anticipatory steroids.)
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- June 22, 2016 at 11:12 pm
Hi Mat,
Actually my regular oncologist (because of my geographic isolation I see both a specialist and regular oncologist) had used 10mg Prednisone as a preventative measure as I began Yervoy. I had almost no side-effects from the ipi, although I also did not have any measurable response either. So I guess its been known to happen.
Gary
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- June 23, 2016 at 2:11 am
I also have an ever increasing team of local oncologists and specialists in various places (Boston, MA Buffalo, NY, Ithaca NY) some of which I've been workiing with for quite a long time now. I do feel fortunate that they know me well and will really work hard to get me what I need or ask for. I really do appreciate how hard they work for me.
As for the steroids, I'm only on 2mg Dexamethasone twice daily, which I just learned today will start to be decreased on Saturday, so not sure that will be any real concern. First infusion of something (not sure of dose or exact combo other than it will inolve Ipi and one of the PD-1's) is Monday morning. Still waiting for details on that.
Sitting in our hotel room in Buffalo in preparation for Gamma knive tomorrow morning. This will be my 5th (or 6th?) go-round with this treatment, but so far each one has done the trick (at least for a while).
-Eva
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- June 23, 2016 at 2:11 am
I also have an ever increasing team of local oncologists and specialists in various places (Boston, MA Buffalo, NY, Ithaca NY) some of which I've been workiing with for quite a long time now. I do feel fortunate that they know me well and will really work hard to get me what I need or ask for. I really do appreciate how hard they work for me.
As for the steroids, I'm only on 2mg Dexamethasone twice daily, which I just learned today will start to be decreased on Saturday, so not sure that will be any real concern. First infusion of something (not sure of dose or exact combo other than it will inolve Ipi and one of the PD-1's) is Monday morning. Still waiting for details on that.
Sitting in our hotel room in Buffalo in preparation for Gamma knive tomorrow morning. This will be my 5th (or 6th?) go-round with this treatment, but so far each one has done the trick (at least for a while).
-Eva
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- June 23, 2016 at 2:11 am
I also have an ever increasing team of local oncologists and specialists in various places (Boston, MA Buffalo, NY, Ithaca NY) some of which I've been workiing with for quite a long time now. I do feel fortunate that they know me well and will really work hard to get me what I need or ask for. I really do appreciate how hard they work for me.
As for the steroids, I'm only on 2mg Dexamethasone twice daily, which I just learned today will start to be decreased on Saturday, so not sure that will be any real concern. First infusion of something (not sure of dose or exact combo other than it will inolve Ipi and one of the PD-1's) is Monday morning. Still waiting for details on that.
Sitting in our hotel room in Buffalo in preparation for Gamma knive tomorrow morning. This will be my 5th (or 6th?) go-round with this treatment, but so far each one has done the trick (at least for a while).
-Eva
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- June 22, 2016 at 11:12 pm
Hi Mat,
Actually my regular oncologist (because of my geographic isolation I see both a specialist and regular oncologist) had used 10mg Prednisone as a preventative measure as I began Yervoy. I had almost no side-effects from the ipi, although I also did not have any measurable response either. So I guess its been known to happen.
Gary
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- June 22, 2016 at 11:12 pm
Hi Mat,
Actually my regular oncologist (because of my geographic isolation I see both a specialist and regular oncologist) had used 10mg Prednisone as a preventative measure as I began Yervoy. I had almost no side-effects from the ipi, although I also did not have any measurable response either. So I guess its been known to happen.
Gary
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- June 22, 2016 at 9:29 pm
Eva, great news. On the steroids point, I think the rule of thumb is that they hold infusions until you are at or under 10mg (prednisone)/day–assuming that the steroids are being used to treat an active side effect. Hard to tell from your post. (I have not heard of folks taking preventative/anticipatory steroids.)
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- June 22, 2016 at 9:29 pm
Eva, great news. On the steroids point, I think the rule of thumb is that they hold infusions until you are at or under 10mg (prednisone)/day–assuming that the steroids are being used to treat an active side effect. Hard to tell from your post. (I have not heard of folks taking preventative/anticipatory steroids.)
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- June 23, 2016 at 1:04 pm
Go Eva go!!! You are one tough cookie! So very glad things are getting a move on – both with the gamma knife and the combo! As the post I linked to your previous thread noted….folks do better the sooner they are treated with the radiation given as simultaneously as possible to the immunotherapy!
Here is just one of many articles I've posted where researchers recommend treatment of side effects with steroids when needed with no decrease in expected response to the melanoma therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hang in there. Fingers and toes crossed for you today!!! love, c
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- June 23, 2016 at 1:04 pm
Go Eva go!!! You are one tough cookie! So very glad things are getting a move on – both with the gamma knife and the combo! As the post I linked to your previous thread noted….folks do better the sooner they are treated with the radiation given as simultaneously as possible to the immunotherapy!
Here is just one of many articles I've posted where researchers recommend treatment of side effects with steroids when needed with no decrease in expected response to the melanoma therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hang in there. Fingers and toes crossed for you today!!! love, c
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- June 23, 2016 at 1:04 pm
Go Eva go!!! You are one tough cookie! So very glad things are getting a move on – both with the gamma knife and the combo! As the post I linked to your previous thread noted….folks do better the sooner they are treated with the radiation given as simultaneously as possible to the immunotherapy!
Here is just one of many articles I've posted where researchers recommend treatment of side effects with steroids when needed with no decrease in expected response to the melanoma therapy: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/side-effects-and-how-to-manage-them-in.html
Hang in there. Fingers and toes crossed for you today!!! love, c
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