› Forums › General Melanoma Community › Starting Keytruda next week, any insights?
- This topic has 19 replies, 10 voices, and was last updated 7 years, 1 month ago by
Patches1.
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- October 3, 2017 at 2:18 am
Hey Warriors,
I was approved for the PV-10/Keytruda combo trial and I will start treatment next week. Any of you who have been on Keytruda that can offer any insights I would appreciate it (i.e., what you experienced, how was the treatment, etc.) I know everyone is different, I am just curious about what to expect — even after reading all of the possibel side effects i have read that a rash is somewhat common, but I read that people go right back to work pretty often with no horrible SEs.
Thanks!!
Tex
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- October 3, 2017 at 2:42 am
Hey Tex,
I have been on Keytruda since the first of the year. I too was worried about the side effects…actually altered my work schedule in anticipation of them. Happy to report none have materialized. Have treatments on Friday mornings…(make sure you eat something before you go) take it easy for the rest of the day and back to work on Saturday.
Hope the same for you.
Nick
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- October 3, 2017 at 3:14 am
Thanks Nick! How is it working for you so far?
I'm not worried about the PV-10 intralesion injections since the research shows very few, if any, side effects from it. I do read a lot of stories about arthritis like joint pain and rashes from the Keytruda, which I will gladly take over this garbage! Anyway, I just finishing doing the same thing you did and altered my work schedule in anticipation of getting the beat down from it…hoping it doesnt impact me either! Thanks for posting.
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- October 5, 2017 at 12:26 am
He Tex…
So far all my original lesions have disappeared or are "resolved". I have a new one interally that has grown slightly. Onc is concerned that there is new progression, but cannot rule out psuedoprogression at this time. I will continue my treatments as planned until my next scan (Mid-November). If it is determined that is progression, we will look at clinical trial options. If there are no trials available, we will consider ipilimumab.
If it wasn't for going for treatments, I wouldn't even know I have a problem. That's how well I feel.
Hope all goes well for you.
Nick
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- October 3, 2017 at 5:04 am
Dear Tex,
my father has been on keytruda since Jan 2016, he hasn't had any bad side effects, just some vitiligo on his face… maybe some fatigue on the day of the treatment, but i think that is more due to the fact that he is stressed out on that day…
Just recently his THS levels have gone up, but they are not treating it just yet…
For him, it has been a miracle drug ( stage IV), hope it's the same for you…
Take care,
Patrisa
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- October 4, 2017 at 4:49 am
Glad your Father is doing well on it and thank you for the well wishes, its greatly appreciated. I hope that it gets him (and all of us on it) to NED!! Thanks for posting!
Tex
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- October 3, 2017 at 1:18 pm
As you mentioned, it is different person to person. I was on it from Nov 2014 to July 2016. It took out my thyroid and made me a wee bit tired starting about 2 days post infusion. Nothing I couldn't go to work through, though I suppose that really depends what your job entails. Never did get the rash people have trouble with, but did develop a little vitiligo on my hands and arms…. really tough to see when one is already a nice shade of "frozen turkey white". The inflammatory arthritis and mild pancreatitis didin't kick in until May 2016, which was roughly 25 infusions into treatment. I pushed through 4 more infusions, and then we took a "break" that has since become permanent, due to clear scan after clear scan. : ) Here's to hoping you cruise through and have shockingly fabulous results!
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- October 4, 2017 at 4:46 am
Niki,
Awesome news about the clear scans!! I pray that those clear scans will always be the case for you!
Too funny about the "frozen turkey white"…I guess I'm only slightly darker…perhaps thawed turkey white? My Irish genes keep me white or pink year around and since sun is no longer an options I guess white it is. I'll take the vitiligo if it happens, gladly, in return for getting this bastard of a disease under control and hopefully eliminated. Thanks for letting me know about your experience.
Tex
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- October 3, 2017 at 9:52 pm
Tex,
I had my 10th infusion last Tuesday. While on it, I am a little tired for a couple of days after and have mild joint stiffness. I typically have treatment on Tuesday and am back to work Wednesday. No issues at all with my work schedule. The best part is it zapped all of my lung mets and a couple of other mets. I had a tumor on my spine that it couldn't overcome. When I had surgery in July to remove it, the surgeon said the tumor was like snot. That tells me the Keytruda was attacking it but the tumor had super powers and was growing despite being attacked. I have my first post op scans on Oct 17th. Dare I say there is a chance the outcome could be NED. In my opinion, Keytruda rocks.
Saying a prayer that it works for you.
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- October 4, 2017 at 4:42 am
Love what I'm hearing! I will be doing my infusions and injections on Tuesdays also. D minus 6…really looking forward to get started. I'm not sure what the PV-10 will add to the total picture but I've read some really promising results. Thanks for letting me know and I, in turn, will say a prayer that it keeps on working for you and you soon reach that coveted NED status! Interestingly, Brad is actually my name also.
Brad aka "Tex"
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- October 4, 2017 at 12:26 pm
Hi Tex
Good luck with the treatment, hope all goes well.
I am on the trial mentioned below and had my 17th infusion yesterday.
(A Phase 3 Randomized, double blind, Placebo-Controlled study of Pembrolizumab (MK-3475) in combination with Epacadostat or Placebo in subjects with Unresectable or Metastatic Melanoma.)
I was diagnosed with Stage IV mets in the lung with no known primary. The scan yesterday showed that all small tumors had disappeared and the large one has reduced from 45 mm to 10 mm.
Side effects are all similar to those mentioned above. Fatigue for a few days after infusion, minor rash, not too bad, but sometimes feels like i have walked through spider webs, aching lower back , hips, legs and knees. All of this is by no means debilitating, I work long and full days.
I have found that I cannot do my normal exersise regime, which some may have said was quite extreme, but hey, I'll take my results anyday over the other option. I truly cannot believe how lucky I am to be on this trial..
Take care, keep positive and dont dwell too much on the minor side effects.
Wishing you all the best….. Stu
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- October 4, 2017 at 7:08 pm
Good Day, Tex!
I started Keytruda infusions in early March of this year; believe I just completed #9 or 10 yesterday. Had a PET, (2) CTs & MR after about 5 infusions. Tests indicated that Keytruda was working with good results: lymph nodes shrunk back to normal size.
I have plenty of side effects that make life a bit more difficult, but are manageable so far. In order:
Dry Mouth / No Appetite / Weight Loss: Started out slowly in about month 2 and has gotten worse: I've lost 20 lbs in 2 months as a result. Totally dry mouth has caused some choking; I always have water at the ready now, and most foods taste like a pillar of pure salt. Salads are good – with protein. If it manifests itself, carry water with you at ALL times, stay hydrated & have Biotene mouthwash with you, in your bag, in the car, etc. always. Maintain oral hygene as saliva waorks against cavities – brush 3x daily, etc.
Elevated Blood Sugar: Started month 7 – Onco has referred me to Internist to get this down.
Nocturnal Urination: Started approx month 7 – 4-5X/night. See Blood Sugar above.
Fatigue: 1st symptom; started almost immediately. Not a big issue; Starbucks Grande mid-PM helps; a one-hour nap gets me back up & running.
Nausea: Started in month 7. Rarely results in vomiting; just uncomfortable. Referred to Internist
Insomnia: Usually tired when I go to bed, but difficuly getting to sleep & staying asleep.
Rashes: Started about Month 3 – forearms & legs for me. Not a huge issue.
None of these issues are severe, although the eating/weight loss is getting close and I spoke to a Registered Dietitian for assistance today. You just keep on the lookout and deal with side effects as best you can.
For me so far, Keytruda appears to be working and the side-effects are just things to manage.
God Bless. Give it Hell, Tex.
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- October 5, 2017 at 1:52 am
Thank you all for telling my about your experiences! I am back down at MDA tonight for all the pre trial labs tomorrow morning. At this point I am more excited than anxious. 5 more days. For the past three weeks I’ve felt like I’ve been doing nothing to wage war but have made a profound change in my diet and although I miss my pizza and burgers I feel much healthier. Anyway….ready to go to battle! Thanks again for all of your posts.
Tex
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- December 21, 2017 at 6:45 am
Noteworthy Update to side-effects post of 10/4:No Appetite / Weight Loss: 20 lb weight loss in 2 months continued to 40 lb loss in about 3+ months before stabilizing. Arm and thigh muscles essentially disappeared.
Elevated Blood Sugar: Metformin has helped. As Blood Sugar decreases, the nocturia gets less severe.
Fatigue: This worsened significantly for about a month. Totally out of gas after work & on weekends before it improved.
Nausea: Worsened to include vomiting & very fast bad reactions to most food. Easily fixed with prescription & eventually went away after 1-2 months.
Rashes: Terrible. Massive coverage head to toe, except for face. Biopsied & diagnosed as Lichen Planus. Medications ineffective so far. This is bad.
You deal with side-effects as best you can, but for me, the Lichen Planus/ rash symptoms, extremely fast weight loss & ankle/leg swelling have been a real trial.
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- October 7, 2017 at 1:03 pm
Hi Tex, my husband was on keytruda for 5 months last year. Side effects were rash on arms, legs & torso, vitiligo, and a bout of mild colitis stopped his treatment. The tumor we were after did disappear 🙂
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- October 8, 2017 at 1:41 am
Excellent! Thats impressive with only 5 months of treatment too! I'm happy for him and you!
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- March 27, 2018 at 2:45 am
I am happy to read that so many of you have had few side effects. That is great. Unfortunately that is not the case with my husband. He has melanoma stage 3c in the lymph glands under his left arm and one in his clavical. There was never a primary site. It just appeared. He was thouroughly checked by a good dermatologist. Extreme fatigue, pain and swelling of the joints, nausea, dizziness, short of breath. weakness, swelling of his left arm and face, eyes and nose tearing and running constantly, flu like sysmptons, rashes and now the final straw his eyes. Things disappearing as he is looking at them, cones of bright colors, light flashing and on iit goes. They stopped the keytruda and have ordered an MRI and Cat scan. Don't know where we go from here.
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