› Forums › Cutaneous Melanoma Community › Question for those receiving Keytruda
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topcat2017.
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- February 28, 2017 at 3:52 pm
Hi everyone! I haven't been around this forum much the last few months, but things are going well for me at the moment and I'm generally feeling good. I've been getting Keytruda since a year ago last July and infusion number 27 (I think) is this Friday. It's working slowly for me, but it's working. Spots on my skin and in my lung have either been stable or shrinking for months….actually we saw changes for the better in the spots on my skin after the very first infusion.
Which is why I decided to drop by with this question for others receiving Keytruda. How long have you been on it? How many infusions have you had?
I've just been curious about other responders and the length of time they have had to stay on Keytruda. At the cancer center where I'm being treated I was one of the first to start getting it, so the nurses there tell me I've been on it longer than anybody else they've seen.
-Bill
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- February 28, 2017 at 8:21 pm
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- February 28, 2017 at 8:39 pm
I had my first dose of it on the 21st of February. I have had no side effects as of yet and have no idea if it is working or not. I wish I had more useful information to share. I pray for a response like yours. I started this because I was forced to stop the IPI/NIVO combo after 1 dose. The side effects got me on that one.
Brad
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- February 28, 2017 at 9:24 pm
Hi, I have received 13 since last June and will get my 14th on March 7 along with the qtrly PET scan. One tumor on sternum has been very stubborn but a two week blast of radiation and the 13 doses have shrunk it by 75%. each scan I get qtrly has shown a decrees by about half of the previous scan. Only issue i've had is some fatigue. Drs. at Mayo have talked about stopping treatment when tumor is gone and I get my next 3 mo. scan after. Not sure if thats still the plan but hope to kill it all first and foremost. Nice to hear from you and hope you do well. Beans
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- March 1, 2017 at 2:23 am
i was on Keytruda for one year. I've been off treatment since June of 2015 and so far I've had no reucrrence. Will have next set of scans soon.
-Terrie
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- March 1, 2017 at 3:19 am
Hi Bill, 27 infusions is amazing. How long did it take to get used to the side effects, and feeling sick in perpetuity?
I had my 2nd Keytruda infusion last Friday and as a very active, athletic, FT working and traveling cross country every other week, mother of twin 8th graders….I've been pretty depressed about the side effects I've had. I'm relatively exhausted (60% strength), weaker, have a constant headache and cough, am very hoarse and shortness of breath. I plan to stop feeling sorry for myself and accept that it could be a lot worse…..
I'm trying to get my head around the fact, that if Keytruda works, I will be sickly the rest of my life, but I will be alive to see my kids get to college- which is my goal.
Did you experience these side effects? Did they dissipate? I had fevers from 102-4.
Thanks- Andrea- stage 4 (4 mets in right leg &1 in right foot, and 1 active lymph node on each left and right hip- no brain, chest, abdomen, pelvis activity)
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- March 2, 2017 at 2:33 am
I'm sorry the side effects have hit you so badly. When I started on Keytruda I got a mild itchy rash, nothing nearly as bad as when I was getting ipi. I have gotten used to the itching and the rash has almost completely disappeared. As for the fatigue, it really hasn't been that bad in my case. I'm a retired teacher. I work from home now, which is great because I can stop what I'm doing and lie down for a while if and when I need to. But most days I don't need to. I do coach middle school soccer and our girls season just started today. I'm noticing tonight that I am more tired than usual and will likely go to bed a bit early. But in general I honestly can't tell whether most of how I feel is caused by the Keytruda or by being 58 years old.
Yes, I understand what you're saying about your children. I was originally diagnosed when my daughter was 3 months pregnant with my first grandchild. My mother died when my daughter was just shy of 5 and she barely remembers her grandmother. My goal all along has been to make sure I live long enough that my grandchildren will remember me (and now I have a 5 month old grandson as well as my granddaughter, who is 3 1/2). After Yervoy only produced a partial response and the growth resumed a few months after the treatments were over, I wasn't sure if I would reach my goal. But thanks to Keytruda it looks like I might even get to see them graduate from high school.
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- March 1, 2017 at 3:45 am
I did not take Keyruda (though there are many on this board who have taken it for years)…rather, I took Nivo (Opdivo)…however side effects and response rates are pretty much the same. Given that, I thought perhaps I might be able to offer you some hope. I took nivo for 2 1/2 years from Dec 2010 to June of 2013. After brain and lung mets (treated with SRS and surgery respectively…and the nivo!!) I remain NED with no treatment since my last dose. I have 19 surgical scars as well as vitiligo. Occasionally, I still have rashes and oral lesions…none as bad as when on meds….but I still work, run, hike, play and do all the other things I've always done. If I can do it…you can too!! celeste
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- March 2, 2017 at 2:43 am
Thanks for sharing, Celeste. I'm glad things continue to go well for you. As for me, I'm doing great. I told one of the nurses at the cancer center last month that most of the time I don't even feel like I'm sick. My oncologist said that for some patients Keytruda was a miracle drug. I think she may be right!
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- March 1, 2017 at 12:29 pm
Hi there. My husband has been getting keytruda or mk-3475 as we knew it before it was approved for 4 years now, every 3 weeks as of february 1st 2017. Not sure how many injections, but you could do the math if you want. After about 3 1/2 years a couple new tumors popped up and he entered a new clinical trial combining keytruda with sd-101 injected into a single tumor and has acheived stable disease since. Best wishes.
Amanda. -
- March 3, 2017 at 6:41 pm
Glad to hear it's working for you! I started Keytruda right after FDA approval. Diagnosed stage IV in April 2013 with brain mets, lung mets, and "suspicious areas on liver". I had too many uncontrolled brain mets to get into the Keytruda or Nivo trials, so I went through 4 rounds of Ipi first… a few surgeries… loads of gamma brain radiation… some MEK research…… ANYWAY… my first Keytruda infusion was the first week of Nov 2014. Like you, I was the first patient at my center (Norris at USC) to receive it there. Sooo… like you… I was the doc's frontrunner on "When do we stop if there are no IRAE's?". I felt perfectly fine on it through about 27 rounds, when my routine CT showed some mildly developing pancreatitis. I wasn't feeling any symptoms, so we continued to round 28… which is when I began having some joint aches… but only on my right side (neck, shoulder, elbow and knee). The drug was doing such a fabulous job, and with no solid evidence/opinions on when we might consider stopping, we were shooting for 2 year mark… I rolled through 20 months… infusion #29. That was when the pancreatic symptoms became evident, and my right knee ballooned. Blood labs showed inflammatory arthritis and a big increase in pancreatic enzymes. We decided to "take a break" from the Keytruda, since my body had been NED for 18 months, and my brain for at least 5 months (only one wee little lesion cropped up between Dec 2014 and Feb 2016). Sooooo… July 5, 2016 was my final Keytruda infusion. Body is still clear (as of last month) and brain only has tid bits of dead tissue (as of yesterday). 8 months post stoppage, and Keytruda has taught my little immune soldiers how to hold their turf! Like you, it seems to have been quite a miracle drug for me. Minimal side effects…. well.. until around 20 month mark. : ) Buuuuuut, I have complete disease control! I'm on thyroid meds once per day, anti-seizure drugs (lots of gamma radiation) and some arthritis meds (hopefully temporary), but I'm feeling like a completely normal person. : )
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- March 5, 2017 at 4:42 pm
They keep telling me that side effects can build up, but so far in my case I haven't really noticed it yet. In fact, the mild rash I was getting after the first few infusions is pretty much non-existent now. At the current time I feel more tired and achy for a couple of days after an infusion, with a noticeable itch. Then it's just some mild to moderate fatigue that comes and goes without warning.
My last scan, in late December, showed a continuation of what the previous ones had shown. Visible spots on my skin were stable, small spots in one lung were slowly shrinking. But the radiologist also noted an area on the hilum of one lung that had been stable and now has increased in size. My oncologist doesn't think its more cancer, as the area had been visible for some time and has only mildly increased in size over the past two years. But she decided to take the radiologist's recommendation and ordered a PET rather than a CT for my next scan. I was hoping she would do that, as not only will it confirm whether the new area is cancer, but it will also reveal whether there is still activity in the other areas, or whether they are now just collections of dead tissue that my body hasn't washed away.
I'm so happy you remain NED! Here's hoping that continues for you well into the future!
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- March 26, 2017 at 8:49 pm
I have Desmoplastic Neurotropic Melanoma that has metastasized into the Alveolar nerve in my jaw. I was on Keytruda for a year and quit because of the side effects. Nearly all of my endocrine system has failed and I experience chronic fatigue daily. I assume that most of it is adrenal related since it got a lot better after starting on Cortisone about 6 months ago. The fatigue has now returned but without a lot of the fever/chills/sweats that I was having before I started on the Cortisone when I tested for NO Cortisol in my system, along with NO testosterone, or Thyroid hormones. It's amazing that I was alive I think. I am now beginning the search for a really good endocrinologist who can figure out why I feel so bad. It can't be that complicated when there are so many clues and missing compounds. Stress and anxiety are by far the strongest triggers for my symptoms, which would point to Adrenal issues still. If anyone knows a great Endo in the Bay Area, I'm all ears. Thanks in advance and God bless you all.
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- March 26, 2017 at 8:49 pm
I have Desmoplastic Neurotropic Melanoma that has metastasized into the Alveolar nerve in my jaw. I was on Keytruda for a year and quit because of the side effects. Nearly all of my endocrine system has failed and I experience chronic fatigue daily. I assume that most of it is adrenal related since it got a lot better after starting on Cortisone about 6 months ago. The fatigue has now returned but without a lot of the fever/chills/sweats that I was having before I started on the Cortisone when I tested for NO Cortisol in my system, along with NO testosterone, or Thyroid hormones. It's amazing that I was alive I think. I am now beginning the search for a really good endocrinologist who can figure out why I feel so bad. It can't be that complicated when there are so many clues and missing compounds. Stress and anxiety are by far the strongest triggers for my symptoms, which would point to Adrenal issues still. If anyone knows a great Endo in the Bay Area, I'm all ears. Thanks in advance and God bless you all.
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Tagged: cutaneous melanoma
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