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Immunotherapy Side Effects

derMaus's picture
derMaus
Posts: 535
Joined: Nov 2016

I don't know how many of us are on immunotherapy now that Lou Ann is gone, so I thought I'd post an update on my side effects in case anyone finds it useful. Reactions to immunotherapy are unpredictable; the FDA just approved it for us last year, so there's not much to compare it with whereas the [regrettable] effects of chemo are pretty well known. I've completed six rounds and the side effects have been mercifully mild, but they're definitely there.  First was the weakness. I was having radiation during the first 3 rounds and was on massive pain meds to boot, and the combination resulted in extreme exhaustion, e.g. changing the sheets felt like an insurmountable task and I was worn out for the rest of the day. I also had chronic nausea with no appetite whatsoever and lost 15 pounds. I can't say it was all caused by the immunotherapy, but I sure don't think it helped. Fortunately I rebounded and have had something resembling my new-normal energy level the last few weeks.

My ramped up immune system also over reacts to allergens. I'm always a little sniffly and my usual allergy meds don't do much. And mosquitoes seem to *love* me. I'm covered with bites unless I hose myself down with Cutter twice a day, and I still get bitten a lot. The bites swell up to double their normal size and itch horribly.

My hair and nails are affected as well. I've always had crappy nails but now they're longer and stronger. That's nice. The hair is another story: about a month ago it started falling out at an alarming rate, especially along the hairline. It had come back well after chemo with a lot of [surprisingly nice] gray in it. Now, it's a hell of a lot thinner and - get this - my pretty silver is turning an ashy, dusty brownish color. I think it's ugly. I marinate my scalp in 5% minoxidal twice a day and am getting some peach fuzz back in the thin spots, but overall I have about 2/3 as much hair as I started out with. My eyelashes thinned out, too, but regrettably the facial hair won't take a hint and is going strong. 

I'm truly grateful that I had the option of Keytruda and that it's worked for me thus far. The side effects I've described are nothing compared to what others here have suffered with various treatments, but since there's so little information out there I though I'd share my experiences thus far. I'll keep you posted as I go along.

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2522
Joined: Mar 2013

B, thank you for sharing the side effects with us.  Since this is a new drug in the mix, not a lot of women have commented on this and I think this is very important to hear.  I know I looked at the drug, just to learn more, and was surprised to see the laundry list which can be very frightening.  Hearing from someone using the drug is very helpful.

MAbound
Posts: 794
Joined: Jun 2016

I was just told by my new gyn-oncologist that I'd be eligible for Keytruda should i have a recurrence, so what you are sharing is of great interest to me.

I'm being taken off of Megace because the risks vs. benefits are now considered too high for long term treatment with it when I haven't had a recurrence. My new gyn-oncolgist said using it to prevent recurrence post-treatment at my stage is really an old school practice (my former gyn-oncologist is 69).  I'm really not too crazy about finding out if it's been the Megace that's been keeping me NED or if the surgery, chemo, and radiation I had was enough. I like being NED (Understatement!); but even my old gyn-oncologist and I had discussed reducing the dose or discontinuing it at my last follow-up with him, so I guess I'm ok with losing my security blanket. I am quite anxious about it, expecially since he's also discontinuing the testing (CT or Chest xray, CA125, pap smear) I always had for my 3 month check ups. I'm looking at it as making progress on this journey, but feel like a fledgling being pushed out of the nest. 

Sorry about going off on a tangent. This post had me go looking for other side effects of Keytruda and I found this:

https://www.rxlist.com/keytruda-side-effects-drug-center.htm#overview

Sure enough it had the exhaustion, loss of appetite, and alopecia decribed and other things that sound kind of scary. It's an option, but is it really easier than more chemo for recurrence? I sure hope I don't have to find out down the road. How long does it need to be taken?

Thanks, Pat

SF73
Posts: 251
Joined: Oct 2017

MAbound, I had also been on Megace and Metformin since the diagnosis (for a little less than a year) but that recently changed. My former gync oncologist who operated on me twice is a very talented surgeon but is a bit behind when it comes to following the newest developments in targeted treatments. He didn't see any value of getting the genomic profiling of my tumor for instance. I got it done despite his discouragement. He was also a bit of a negative nancy. I never felt good leaving his office. I switched to UCSF, to a medical oncologist whose most recent publications are about the POLE mutation. That is the mutation I happen to have. My first appointment was one and a half month ago. I was the last patient of the day and they apparently had some emergencies earlier in the day which made her late to my appointment for 2 hours. I felt a bit rushed. But still felt good leaving her office. She did not think that Megace was helping much because of my tumor profile. I don't know if she knew my tumor was barely ER/PR positive and whether that played a role in her recommendation. For Metformin she didn't have a strong opinion. Since it is a safe drug she did not object me taking them. I continue taking them for another two weeks because it WAS very hard to let go of that "security blanket" but then eventually I discontinued them both. I thought that Megace was holding me back from losing weight. But despite trying hard I have not lost any weight since. What are your experiences like after discontinuing Megace, MABound? Have you noticed any change in your appetite? 

By the way, UCSF has an interesting surveillance protocol. They have a bunch of gyn oncologists who are seeing both patients in treatment and remission. They have one NP that is assigned to only patients in remission. Your assigned oncologist sees you for one visit and the NP sees you the next time. That means NP sees all gynecological cancer patients that are in remission which probably allows a unique perspective. Do you guys know of any other cancer center with the same protocol? I thought it was an interesting way for them to make their oncologists more available to patients who are in active treatment while meeting the needs of the patients in remission. I have yet to meet the NP. Will let you know how that goes.

MAbound
Posts: 794
Joined: Jun 2016

I've been tapering off of Megace and just took my last reduced dose yesterday so I don't have much to offer regarding weight loss. I don't notice the "what else can I eat" urge after a meal anymore, though. 

This may sound odd, but has anybody else on or formerly on Megace noticed drooling at night as a problem? I had attributed it to sleeping really soundly and didn't connect the two until now. It has magically stopped since I've been weaning off of the Megace.

My ER/PR receptors tested as 90% active so I was a good candidate for Megace therapy. I suppose if I have a recurrence that will remain a treatment option for me, but I will be really upset if it turns out that it was working for me before any recurrence.

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

I really wish my doc had put me on megace from the beginning because I believe I never would have reoccurred and because my reoccurence is in the peritoneal area it has really complicated this kidney stent thing. I gained about 15 pounds and my doc said that’s about where most people level off and I’ve found that to be the case. My philosophy is between fat and dead I’ll take fat. Plus I’m on Eliquis so I’m hoping that gives me extra protection from clots. No drooling for me but I wear a dental appliance for sleep apnea plus the meds I take for bladder pain with the stent really dry me out. 

SF73
Posts: 251
Joined: Oct 2017

In your case taking Megace is a no-brainer. It has been shown to be effective. So there is no trade off to consider. But in my case my oncologist was telling me that my tumor profile did not match the ones that would benefit from Megace and my tumor was barely (25/50) ER/PR positive. So the only reason I was taking was because it made me feel better like I was actively fighting with the return of cancer. I still would like to keep it in my arsenal in case cancer comes back but I thought I will at least take a little break. 

MABound, YES! I did have drooling when I was taking Megace. How funny that I did not make the connection. 

CheeseQueen57's picture
CheeseQueen57
Posts: 770
Joined: Feb 2016

My doc was not optimistic that the Megace would work for me. In fact, she was pushing chemo because she said although my tumor was hormone sensitive my grade was high and because of my age. When she said the chemo had a 20% rate of success I just laughed.

EZLiving66's picture
EZLiving66
Posts: 1304
Joined: Oct 2015

I never saw my oncologist/gynecologist at all after my surgery except when he removed my infected port.  I saw one of his two NP. Then after two years, he sent a letter telling me his NP would no longer see me and I should just have my GP check me every six months unless I had a problem. My GP said he must feel like you are truly in remission. 

Love,

Eldri

derMaus's picture
derMaus
Posts: 535
Joined: Nov 2016

Is immuno better than the other options? Yes, absolutely. It's also very strong medicine so side effects are not unexpected, but mine have been very manageable. As to how long I'll be on it: the doctor basically said the rest of my life, but that may have been an incomplete answer. From reading other cases it seems they discontinue after 2-3 years, so I'm guessing a couple of years, or the end of my life, whichever comes first. Hopefully the former rather than the later!

MAbound
Posts: 794
Joined: Jun 2016

Your sharing your first hand experience is so helpful given how new this is for treating our cancer. The other fear I have may be the costs when our insurance will only cover 80% after the deductible is met. I've heard that it's about $100,000 per year without insurance, so that's still a lot of money. Is that about right or way off base?

EZLiving66's picture
EZLiving66
Posts: 1304
Joined: Oct 2015

Thanks for the info, Bobbi! I'm always interested in new treatments. I am so glad this has worked so well for you with minimal side effects. Hopefully, you will enjoy many many more years of good health ahead of you!! (((Bobbi)))

Love,

Eldri

Armywife's picture
Armywife
Posts: 240
Joined: Feb 2018

You're amazing.  

Soup52's picture
Soup52
Posts: 888
Joined: Jan 2016

Thanks for sharing your experience with immunotherapy. It really great to hear first hand about any sideeffects. In response to what SF asked, my original gynechological oncologist just left. That leaves my mid size city with only one:( I was fortunate that I was able to be put on her list and have an appointment with thePA. I believe I will mainlybe seeing thePA which is fine with me. I know her as she was with my former oncologist before he moved from that facility. I feel confident that if I have any problems I will then see the Dr. I know this oncologist will be totally overloaded. My cancer center has been really working to get more oncolofists to come here. 

SF73
Posts: 251
Joined: Oct 2017

I always had allergies. More severe when I was younger. Some disappeared with puberty. After my pregnancy some of my seasonal allergies also went away (still very allergic to cats, dogs, horses, dust etc.)  I always thought of my immune system as this bored army of a third world country that attacks anything that it gets in contact with. Making a big deal of an innocent pollen that comes into the body as opposed to waiting for something real a virus/bacteria to fight with. My daughter really wants to have a dog and she was hoping that chemotherapy would "cure" my allergies. It did not happen. derMaus, it seems your "trained" immune system is still making a big deal of allergens. I was hoping that it would make it focus more on things that matter. I am curious to find out throughout your treatments (chemo, radiation etc.) did anyone experience any change in their allergies? 

oldbeauty
Posts: 180
Joined: May 2012

Thanks for sharing this info with us and letting us have a great first-hand report from a contributor here who is a wise and resilient warrior!.  Best wishes, Oldbeauty

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