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Viewing 15 posts - 16 through 30 (of 101 total)
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  • in reply to: This chronic disease is reawakening #67792
    gostan
    Participant

    My medical team @ Dana Farber has advised me that my PD1 immunotherapy infusions are going in the wrong direction as my latest scan shows larger nodules. So, with poor results in the immunotherapy arena, I have opted to join an experimental Phase II clinical trial testing the effectiveness and side effects of Glembatumumab vedokin (CDX-011 or “Glemb”) in treating advanced stage melanoma. The previous Phase I trial combined breast cancer and melanoma patients.

    Glemb consists of an antibody attached to a cell-killing drug, MMAE, which attaches to a molecule called gpNMB that is located on the cancer cell and releases the MMAE inside the tumor cell, which in turn causes the cancer cell to die.

    There may be a greater chance of more side effects, but based on my history, a change in treatment direction, is necessary. Final screening is Friday and initial 90 minute infusion (& every three weeks thereafter) will take place this Wednesday.

    in reply to: This chronic disease is reawakening #67791
    gostan
    Participant

    JaWillett

    Thx for takimg the time to respond and for giving me some food for thought. i am just beginning to research my next alternatives, so all information & thoughts are really helpful and welcomed.

    Stan

    in reply to: This chronic disease is reawakening #67789
    gostan
    Participant

    I just returned from the most wonderful week of powder skiing in Utah. So glad that I had this opportunity. Before I left I received the results of my first Brain and Body Scans since beginning my PD1 infusions 15 weeks ago. Luckily, the Brain MRI showed no progression since my SRS treatments. However, my CT Scan showed a mixed bag of results. Some nodules in my abdomen and chest were smaller, but many were larger with a few disappearing and several new ones, indicating that the immunotherapy infusions were not likely working. Dr. Hodi already began discussing other alternatives with me, but agreed the we should go ahead with Infusion #5, which we did, and I am scheduled to undergo another CT Scan in early February to determine if the immunotherapy treatments have kicked in. If not, he is talking about switching me over to either a new clinical trial @ DF studying the use of Blembatumumab Vedotin in Patients with Advance Melanoma, which has apparently been used for stage 4 breast cancer patients, or to Interlukin II @ Beth Israel. I am just praying that the immunotherapy infusion(s) begin to work, because I am not really enamored with either of these choices. Meanwhile, I will be back skiing in Vermont this weekend. Have to get my ski runs in while I still can.

    in reply to: This chronic disease is reawakening #67787
    gostan
    Participant

    Four infusions so far withthe 5th on the horizon as well as updated CT Scans & Brain MRI in mid January. So far everything is good and I feel great. 10 ski days in VT so far with a trip to Utah planned for late January. My attitude is to take full advantage of being off Braf/Mek while I can. Because I do know that things can always change. Best wishes to all for a happy & healthy 2016.

    in reply to: This chronic disease is reawakening #67784
    gostan
    Participant

    Two infusions down and things are all right. Of course, I ended up having SRS on 3 small leisions on Wednesday. Other than weening off the Kepra, no complaints & other than these 3 leisions, no others were shown on my last MRI. 12 of us for Thangsgiving dinner. Just laying low this weekend after the radiation as there is no TtoB skiing yesterday in Vermont. Next weekend I plan to break out the skis. ⛷

    in reply to: This chronic disease is reawakening #67780
    gostan
    Participant

    Infusion #1 is done and nothing really to report as all is well, with Infusion #2 on November 17th. My one interesting observation about going off of Braf/Mek is that after about 15 months of treatment, I did not completely realize how the drugs had affected me. All of a sudden I am no longer tired, or dealing with eyesight/stain issues and my equilibrium & strength of body and mind are now greatly enhanced. Going up & down stairs like the old Stan. It is like a fog has been lifted and I feel like a different person.

    in reply to: This chronic disease is reawakening #67779
    gostan
    Participant

    MathewR wrote:

    Stan, I had moderate colitis after my third Ipi infusion. On Keytruda, I’ve had no GI issues beyond infusion-related loose bowels (after my first infusion). While it is possible to combine the drugs, I’ve not heard that this is a winning strategy (yet). Indeed, there is a case for getting off BRAF-MEK so that you might possibly return to it after a break if needed.

    MatthewR, your post gives me just a bit of confidence that I may be able to tolerate the Keytruda. My colitis on the Ipi was about as bad as it gets. But I am going to give this my greatest effort to get through side effects, if any crop up.

    Catherine, I will keep in touch.

    in reply to: This chronic disease is reawakening #67776
    gostan
    Participant

    Yesterday was CT scan day and today was results day. With the scans showing more progression in my abdomen and lung, along with the previous recent brain activity, it is obvious that the Braf/Mek is not working. So, I am stopping the Braf/Mek as of Friday and beginning Keytruda on Tuesday. just praying that there will be no colitis side effects.

    in reply to: BRAF/MEK, fevers, sore mouth et al #67741
    gostan
    Participant

    Lots of luck on the reduced dosage. I could not tolerate the higher 150 mg a day which was reduced to 100 mg a day which has been doing its job well for about a year with very reduced side effects.

    in reply to: BRAF/MEK duration #66742
    gostan
    Participant

    Matthew, Dr. Hodi is very conservative. The progression is minor in nature. He wants another set of scans that show more progression before switching me to PD-1. I was advised that they are having very good results with PD-1 on folks who have previously failed Ipi. But I had some of the worst colitis side effects that they saw on Ipi, so I am aboard with their conservative approach. if there is no further progression, I would choose to stay on Braf/Mek.

    in reply to: BRAF/MEK duration #66740
    gostan
    Participant

    I have been on Braf/Mek for 10 months with no progression, until my latest scans earlier this week which show some minor growth in two lung nodules. I will be rescanned in 7 weeks to determine if there is any further progression. My oncologist has told me that averag length of positive results is about 12 months with some patients shorter and with some patients longer and some going for years.

    in reply to: Happy Thanksgiving #65882
    gostan
    Participant

    Cheris

    I have been on the Brak/Mek pills targeted therapy for 7 + months. Once we got the doseage correct, it has been a very straight forward therapy. I still see Dr. Hodi every 30 days and he has continued my CT & Brain scans every 60 days. I understand that the scan schedule is pretty conservative but his bag of tricks has worked out well for me to date even though I still complain to him about still being on Levenox after 9 months.

    Catherine

    We are expecting 5-8 inches of snow here West of Boston. It should be over by the time our local guests, 18 in total, have to drive to our Thanksgiving celebration on Thursday.

    Enjoy being with your family & friends and thanks,

    in reply to: melanoma in the brain #65439
    gostan
    Participant

    Best of luck to your wife, you and your family as you go down this unknown path.

    For me, The daily trips into Boston for the WBT for two weeks were very draining. I can only imagine what it would be like to be undergoing both the radiation and Yervoy at the same time, but in my case my radiologist is sure that the combo (my treatments were not simultaneous) definitely did the trick and that the Ipi passed the blood brain barrier. Twelve months later my brain is clear of cancer and I am now on Braf/Mek to shrink the body leisions, with no progression right now. My wife’s family is from Lebanon so she and I wish yours’ success through these treatments.

    in reply to: melanoma in the brain #65437
    gostan
    Participant

    Best of luck with the additional SRS treatments. My brain leisons stopped me from an anti PD1 clinical trial and even from getting on Ipi in the summer of 2013. After 2 SRS treatments I had multiple (8 or 9 ) new elisions and my neurologist at BWH said WBR was the way to go. I was able to start Ipi a few weeks after completion of the WBR and the combo has left me Cancer free in the brain. No doubt that the combo worked miracles for me. for what it is worth, in my situation, the SRS was easily tolerated when compared to the WBR. Hopefully, the side effects from SRs will be minimal. Where is the treatment taking place?

    in reply to: Merck anti-PD1 approved by US FDA #65379
    gostan
    Participant

    Such good news to start our Fridays. Having been able to suffer thru only two IPI infusions and currently 3 months into Braf/Mek, I now know what treatment will be next in line. Thx, Merck.

Viewing 15 posts - 16 through 30 (of 101 total)