Even though I’ve been off Keytruda for six months, its effects continue to rear their ugly, ugly heads.
You may have noticed I haven’t been posting with the same wanton abandon as usual these past few days. It’s because I have been consumed 24/7 with the itching and the recent, sudden breakout of blisters from the Bullous pemphigoid, the Keytruda-induced rash that has every inch of my body from shoulders to knees now looking like a pepperoini pizza.
I’ve been camped out in front of the television rotting my brain with Youtube videos during waking hours and not really in much of a mood to post anything.
(Not my photo, but a very accurate portrayal of your host from shoulders to knees.)
The rash is forming because the protein strings that normally form to bind the epidermis to the dermis are being attached by my own immune system, thanks to Keytruda. I suppose this shows it’s doing its job against any errant cancer cells, but c’mon guys…these are your own cells you’re attacking.
Again my thoughts return to last October: “A skin rash is the most common side effect of Keytruda therapy. Skin rash? How bad can it be?”
It’s been six weeks since my dermatologist put me on the biweekly injections of Duplixent for the rash and I can’t say there’s been any improvement whatsoever. If anything, it’s gotten worse because the signature blisters that had been conspicuously absent up to that point were now appearing with alarming regularity. And the itching! OMG. My palms itch. The space between my fingers itch. Every damn blister and bit of rash itches. By Thursday it had gotten so bad (and the usual home remedies, hydrocortisone cream, etc. were completely ineffective) I tried to get in to see my dermatologist. It normally wouldn’t have been a problem, but she was out of the office all week. I’m seeing her Tuesday.
Today it’s so bad I’m almost watching the blisters—blisters that rupture incredibly easily after having been strangely quiescent for a few days now—appear almost in real time. And the intense itching they bring combined with their easily friable nature do not good bedfellows make! If you pop the blisters (which is apparently okay to do) the itching stops, but then you have the usual pain of a popped blister to deal with. And the same reason these damn blisters appear in the first place is also the reason it takes them weeks and weeks to heal. Damned if you do, damned if you don’t. And right now I’m feeling very, very damned.
I’m at the point tonight where I just want to sit and cry.
18 comments
I learned about goldenseal and its powerful ability to purify the blood 50 years ago from a professor. It can clean up the blood so well and quickly that it can help pass a drug test. It stops allergic reactions by removing histamines from the blood, and after 15 minutes of swallowing a capsule, allergies abate. I have seen it cure the flu in minutes. I would be taking it if I developed the symptoms you have. It can upset the stomach, so use it sparingly. When it starts to purify, the body will seem to warm up.
Your situation is terrible. I’m sorry and hope you find some relief.
I love your blog.
Hi! I’m hearing your problems, and I’m sadden by them.
I think that you have many faithful foreign readers, that rarely write comments.
Crying in the middle of the night, it reminds me of my former wounds at the joints.
During the day, the body produces some natural pain-killers. Then at nigh, the body stops producing and pumping those natural pain-killers for a couple of hours. There is always a moment in the night when the suffering is “raw” (so to speak) and pulsating. And a few times, as a grown-up, I have been crying like an helpless baby, and it wasn’t much of a relief.
Also, when the healing is very slow, on the scale of weeks, the progresses become psychologically undetected. Loosing hope some nights, it is almost a regular part of the path. Then one day, the tearing on one’s ligaments and muscles is gone, GONE.
But I never had such a cancer treatment.
My mother had cancer, we’re talking a lot about it. As a rule of thumb, cancer treatments can be rough, but they must remain tolerable. Treatments should be adapted to what you can bear, when possible.
Doctors do mistakes, sometimes.
Maybe your dose of pembrolizumab (Keytruda) can be lowered, and the dose could still remain in the range of an effective dose?
Speaking of it, you have lost a lot weight.
And maybe the dose is measured as a proportion of your total weight. You don’t weight the same, compared to the beginning, when you got the surgery on your tongue. It would be good to ask, if the doctor are using the good body weight in their calculation for the dose.
If you have some patience left, I have pieces of advice against the itching, that you can try.
If no soothing has happened after 10 minutes, you can give up a try.
(I have an allergy to the enzymes of dish washing products. When the tiny dyshidrosis blisters pop, the itching get worse, and lasts days. I also have eczema, and an allergy to the leftovers of laundry enzymes. I have an auto-immune disease related to mast cells, that makes me constantly tired. So I’ve tried a lot of things).
1 – Lip balm.
Some expensive lip balms stifle the itches, but also the cuts and the rashes.
This lip balm is my “one size fits all” solution for my lips, for any blister on my hands, and the rest of my skin if get cut. I almost forgot that I’ve had an itch (or a cut) and that I’ve put cream afterwards.
It’s Bariederm cica lips. A body cream exists to, but I haven’t tried it. Paradoxically, this balm works because its synthetic and covering, greasy but not sticky, and stay in place. Maybe your US physician can find a similar one, by seeing the ingredients.
Canada has this brand. It’s costly, like 7$ for a tiny tube. I could as well ship you 2 tubes for free from France. Because I use the lip balm on clean wounds, I try to keep my tube clean. I clean my hands, and apply some of the product on the back of one’s hand, that I transfer then on the blister or the cut.
https://uriage.ca/products/bariederm-cica-lips?variant=31450475692104
For troubles with the anal sphincter, out and inside, Cicafalte+ is usually the good pick.
https://www.aveneusa.com/cicalfateplus-restorative-protective-cream-40ml
2 – Pure shea butter.
Pure shea butter could be a good option to try, to apply once or twice per week on all the body.
Pure shea butter, pre-washed by water steam, has no odor at all. Even organic, a pot of 150ml should cost you only around 15$ and last a long time.
Grab some of it through a papier tissue and clean hand, so that the rest of the pot remain clean longer. A nugget smaller than an half inch is the good size, to melt in your palm by rubbing them, then applying.
It’s another one size fits all, for face, places with hairs, feet, but also one’s crotch. You can remove the excess with (paper) tissue.
(Except for the lip balm, I hate most of the special creams. I feel that my skin macerate in it, for no good results. Maybe they are relying too heavily on dirt cheap by-products of petroleum oil, like paraffin, despite their price tag).
3 – Overapplying cortisone cream on hands.
During crisis, for the cortisone cream on the hand, you can apply just a bit too much of if, and let it dry a few minutes by doing nothing.
After 2 minutes, you just have to buffer the excess on your palms with one-use (paper) tissues, by pressing your hand palms together, and resume your day.
(You can spare your computer keyboard from the grease, by buying a cheap USB keyboard, and putting the USB keyboard inside any thin plastic husk (no risk of overheating for a USB keyboard), the kind of bag to put food in the fridge, sold 2$ for 10).
4 – Gloves for the night. Polyurethane, clean, no powder.
If your hands are very damaged and itchy, you can sleep with your cream, and wearing polyurethane transparent gloves.
(Polyurethane gloves WITHOUT talk or any other powder. Ask your physician or pharmacy before). (NO latex gloves, latex is very prone to create allergies). (Throw away your pair of polyurethane gloves after 2 day, or soap and dry them very carefully. Any bacteria or fungi is dangerous with damaged skin under gloves).
In the moment of crisis, I feel like the itching is triggered by the oxygen, and because my skin cannot recreate its imperviousness where the blisters have popped.
Maybe the stupid tip for loosing weight on the belly and the torso could help against your itches in the back : I mean using some transparent plastic film for food (like the film for sandwiches).
Having a huge layer of plastic film on your back, after applying your cream, would calm the itching a bit. It’s worth trying 10 minutes, it’s very cheap and rather safe. Usually the “for food” quality for plastic is not that far from the “pharmaceutical” quality. Just don’t catch your head or your pet head with the film, because of the death by suffocation, if the film move while sleeping with the film (maybe put some shirt over it).
5 – Extra rinse cycle on bath towels.
After a shower or a bath, two minutes after drying yourself with a towel, if you feel a feeling of warmth like a very slight burn (usually in the lower of the back and the kidneys), maybe you are sensitive to the leftover of enzymes on your towels.
If so, it’s better to program 3 extra soak and rinse cycles after your regular program, on your washing machine. Cotton towel needs a fast speed of rinsing, for most of the detergent to go away. Cotton acts like a sponge, and people usually use too much laundry soap. The same may apply to your other pieces of clothing, that are touching your skin.
6 – Superfatted soaps.
If you have to wash your hand -and body- more often, gel soap is not optimal -except as a shampoo-, because almost all of them have sodium laureth sulfate. It takes more effort to rinse, and usually let the skin more dry.
Hard bar soap, the “superfatted” one, are better. Traditional Alep soap is very good.
The real Alep soaps have only 4 ingredients listed : olive oil (sodium olivate), from 5 to 40% of oil of laurel bay (sodium laurus nobilate) (25% is my favorite, no need to pay a lot for 40%, the 25% smells already very good, a bit like laurel leaves), water (aqua), and soda (sodium hydroxide) (the longer the soap has been “cooked” the less soda is left in the result), and sometime the glycerin of the olive and laurel bay oil is listed too.
Buying the nearest bar of Alep soap is usually a rip-off, because one pays it 10 to 15$ for a bar of 200 grams, instead of roughly 4$ in the best shops. It’s still worth paying 15$ for trying. Also, the soap is very dry and tiny when you buy it, then it almost doubles its size when you begin to use it with water.
7 – Beware of the sulfites.
My spot-on foods. Usually, sulfites give me big swelling spots on my face, usually triggered by direct sunlight.
Sulfites is a preservatives in food : mostly in dried meat like dried ham and slices of dried sausages (I’m vegetarian) (You have a special diet), beers, and some sauces like normal mustards. Beers and other alcohols are the worst, because some alcohol producers have a heavy hand on sulfites, it’s the lottery. Avoid these foods make a huge difference for me.
I think you are right that my cancer posts are bringing readers out of the woodwork. It wasn’t my intention but it’s nice to know so many people have my back. (And realize I’m a real person, not some crazed porn regurgitator!)
Thank you for all the suggestions! I’m on day two of the new regimen, and while I was still up twice last night, it’s only because I woke up realizing I was scratching so badly that it felt wet where I scratched. Not knowing if it was blood or just the clear fluid from some large bllisters, I dragged myself out of the bed and into the bathroom to investiate. It was just fluid, but what I noticed from the night before was how many fewer blisters there actually were. Even one dose of the prednisone was making a difference! I’m feeling much more hopeful than I have in over a week.
(BTW, they pulled me off Keytruda back in March after getting a clean PET scan, coupled with the fact my oncologist was concerned it was attributing to my numerous bouts of pneumonia. I had a very minor bit of rash at that time; all this has happened over the past couple monthsm most horrifically over the past few weeks. Keytruda can linger in your system and continue working for months—if not years 🙄—after discontinuing. This is obviously bad news for the side-effects, but good news is that my immune system is still actively seeking out and destroying any errant cancer cells.)
I’m so sorry you’re having to deal with this! Fuck Cancer! Keep fighting!
There’s the Old Testament story about this guy, Job, being covered from the soles of his feet to his head with painful boils. In that legend, the boils were blamed on (of course) the devil. In modern times, we might instead assign big pharma to that role, their treatments may be worse than the malady.
Doctors are compelled to experiment with the available treatments, worried about what happens if they do nothing, fettered by what the insurance company will pay for and the limits of what big pharma has created in the lab. How to make that stay within “above all, do no harm?” And there you are, a patient relying on , in a direct line for this conundrum.
A friend (with his case of CLL leukemia, under treatment with newer therapy) recently landed in the hospital in critical condition, to the point where he was trying to wrap up his affairs. We were really pleased to see him come out of that, upright and taking in nutrition. His explanation of the situation, when he came back to the outside world, was that his particular treatments had been over-dosed. Everyone’s system is different, and the level needed may change as body mass changes or there is an accumulation of the chemicals in the blood.
I hope the medical folks can find something better, less poisonous, really fast and more importantly, that they can provide a way to clean up and stabilize your immune system. We’re pulling for you, in whatever way we can at this distance.
My heart goes out to you.
I know how I am when I can’t do my activities of daily living (ADLs). I’m a bitch.
The itching would drive me insane. I have a pretty high pain tolerance, but the itching. With no rhyme or reason. And no relief.
I am surprised that your dermatologist did not have someone fill in for her for emergencies. My ass would be in urgent care. Just give me something for the itch. Granted, what real emergencies does a dermatologist have? It’s not like ophthalmology. Not to hate on our skin folks, but emergencies for severe skin reactions and the like can go directly to the emergency room or urgent care for an evaluation and maybe a follow-up to derm.
Here’s to relief.
Thanks, Victor.
I first called Thursday last week. They said they would monitor cancellations of other doctors in the practice, to see if they could get me in more quickly than this week, but she’d been handling this from the beginning and has been fantastic. As unpleasant as it has been, I knew I could survive another five days.
If it helps, even for only a little bit, go ahead and sit and cry. I wish this wasn’t happening to you.
I have never been a crier, so wanting to cry and actually crying is a huge divide for me. The only time I remember crying uncontrollably as an adult was a couple days after the fire and we’d finally settled into the hotel and the adrenaline had worn off.
I feel for you. Wish I could wrap my arms around you and give you a warm hug to take the itching away.
And, yes, fuck cancer.
Thanks Len.
Here’s hoping she can give you something to knock that shit off quick. Fuck cancer indeed.
You and me both, Moose!
That’s awful.
I have lost several people close to me to cancer so I am a big Fuck Cancer fan!
Thanks Bob. I’m convinced it’s not the cancer that kills people; it’s the treatment.
That’s horrible. And so is having to wait to see your Dr. I hope there is improvement soon. Fuck cancer
Thanks Scott!