Tasigna side effect? How do I stop an itchy scalp and rash?

Hi Judy! Your research touched on a topic that bothered me from the get-go with some of the dosages of meds I was on and their side effects. I had serious questions as to how, when I was weighing in a 103 pounds, 5’2” (65 year old female at the time) was on the same dosages of this serious drug as a 25 year old, 6’3” male weighing 300 pounds?! Happened to be talking with him in a waiting room during our similar treatment plan. I had horrible side effects and begged to have the dosage reduced. I was told it was all processed the same in our bodies no matter the weight and that’s the recommended dosage. Huh, really? Most meds are calibrated to height and weight…
Fortunately, my doctors at Mayo did not share the opinion of my local clinic and my dosage was abruptly lowered with very positive results and no side effects.

I don’t have any actual statistics on the particular leukemic tests you mentioned but it is a fact that women and older adults can process some of these drugs differently, or slower, keeping them in our systems longer which can create the negative side effects or toxicity.
I watched this happen in a nursing home with my mom a number of years ago. No one listened until I made a big stink about my mom’s reactions and felt she was overdosed. Finally her blood was tested for the medication and she was several times over the limit in value. At her age of 88, with already severe kidney disease, the meds were not clearing through the kidney or liver properly. Dropping her dosage was a real eye opener to the nurses as mom continued to flourish instead of rapidly declining. So we do continually have to be our own advocates.

I’m happy you’re having some relief from the relentless itching and finally getting some sleep! I really hope you’re able to maintain that half dosage of your medication and don’t have to switch! Certainly feels like a strong correlation between your symptoms reversing with the drop in your dosage. Keep me posted, ok?

Hi Lori,
I've been doing some research and have read in several places that these targeted therapy drugs for leukemia were mostly tested on men at first. Can you shed any light on that? Also, I saw one scientific study where " Women had a 34% increased risk of severe AEs compared with men (odds ratio [OR] = 1.34; 95% CI, 1.27 to 1.42; P < .001), including a 49% increased risk among those receiving immunotherapy (OR = 1.49; 95% CI, 1.24 to 1.78; P < .001). Women experienced an increased risk of severe symptomatic AEs among all treatments."
This makes me wonder if women would do better with fewer side effects if dosages for women were lowered, or if they would take sex and weight and age into consideration? We know that women's bodies react differently to almost everything.
Personally, I was taken off the Tasigna for 3 days per doctor's orders then was supposed to go back on full strength. However I went back on a half dose. My itch is now barely noticeable, I'm sleeping more than 2 hours a night, my skin is slowly clearing up and I'm not stressed. I called and reported all to my hematologist/oncologist doctor's nurse. He was non-comital at this time. I'll learn more when I see him Sept 26.
Of course I know everything depends on how well any dosage of any medication is helping my CML and if he keeps me on the half dose it will take some time to know that. I hope it does and that he doesn't switch meds again. I know the demons I'm living with now!

Judy

Hi @talmadge81 This itchy scalp and rash must really be all encompassing, especially since you glossed over the part about being newly diagnosed with CML. (Chronic Myelogenous Leukemia). Usually that’s the topic that sparks the discussion.

Tasigna is a specific medication used to treat CML. I’ve read the Tasigna information and the possibility of a rash is one of the more common side effects. It mentions the potential for hair loss but not an itchy scalp. Have you mentioned this to your oncologist?
One product I’ve heard of that provides relief from itchy scalp is,
Scalpicin Extra Strength. Have you tried taking Benadryl, Claritin (not Claritin D), Zyrtec, or Allegra antihistamine?

You mentioned you’ve recently been diagnosed with Chronic Myelogenous Leukemia. I’m providing a link to the Mayo Clinic website for CML with a little more information for you.
https://www.mayoclinic.org/diseases-conditions/chronic-myelogenous-leukemia/symptoms-causes/syc-20352417
There are also several discussions in the forum with other members who have CML. This one in particular was launched by @suzie71. She’s a really positive roll model for anyone with CML.

I've had CML for 20 years and want to encourage others: https://connect.mayoclinic.org/discussion/chronic-myelogenous-leukemia-cml/

I hope we find some other answers for you regarding your rash and scalp itch. Do you have any specific questions about your CML?

Thank you, Judy! Having an idea of what symptoms to look for is actually comforting. I have a better idea of what to watch for and hopefully catch it right away if it happens to me.

I guess it doesn’t surprise me that these drugs aren’t tested or not tested enough on how they effect men and women different. All medications effective us differently. When I was on Bosutinib I went from 400 mg to 200 then 100. The effect on my liver just kept getting worse. I’m on 100 mg of Dosutinib. I’m waiting for the blood results to see if it’s having an impact on my liver.

Now that you have been off the Tasigna has the scalp itch and rash gotten better? I hope so. Being able to get a goodnight sleep is so important.

Wish you all the best. Keep in touch.

Donna

Good morning all.....to anyone having a rash and scalp itchiness I have Essential Thrombocytosis which causes the extreme itching. Mostly my scalp but periodically body and legs. I don't take a medication for it but I use a lotion called Taro-monetasone. It helps to tone down the itchiness. Hope this helps someone out there. I notice the itchiness mostly at night but this lotion has helped.

I have polycythemia and that causes itching. And I do mean ITCHING. Prior to starting treatment, I absolutely mauled my ankles to death. Anyhow, I tried antihistamines, calamine lotion, you name it. Nothing worked. What works for me:
1. Cool showers and baths. Specifically, I lather up and only turn the water on long enough to rinse off.
2. Aveeno Skin Relief Body Wash. It is formulated for dry itchy skin. My skin isn't dry, but this stuff really helped.
3. I massage Aveeno lotion or cream into the itchy areas after every shower or when I itch.
4. And I DO NOT SCRATCH.

Don't scratch, ever. Scratching causes a histamine reaction and that makes the itching much much worse.

Hi Donna. It's nice to put a name with @careydm!

I was on Dasatinib off and on for 4 1/2 months. Probably only 3 months total because every time I got PE he took me off it for a week or two. I don't remember how long I was on it until my first bout with PE - maybe a month. I had never heard of or been warned about PE so I didn't take the symptoms seriously at first (I now read every word of the fine print instructions!). My first symptom was a little cough and I just thought I was getting a cold. The cough and runny nose got worse and then I began to notice a little shortness of breath but still didn't think much of it. Then I developed a low grade fever that quickly developed along with more difficulty breathing. That's when I called my oncologist/hematologist. He immediately took me off the Dasatinib and put me on a high-powered antibiotic for 10 days. I reported the next two times more quickly!

I'd say don't ignore a persistant cough or shortness of breath, especially since you only have part of your right lung. Are you having side effects of any kind right now?

I've been researching clinical trials on the differences between men and women of adverse effects of cancer drugs. They report that women are 34% more likely to have adverse effects than men on all types of cancers. These same reports express surprise that there have been very few trials on the differences between men and women of the targeted therapy drugs.

I'm going to present these findings to my doctor and insist he lower my dosage. I've been reading reports from women who have done better on lower dosages - both their symptoms and lower numbers have been better.

Judy

Good morning talmadge81! Thank you for sharing your journey. I’m so sorry you had to go through getting pleural effusion 3 times. Can I ask how long you were on Dasatinib when it first happened? I was really praying I could stay on Bosutinib because I didn’t have any major side effects that I felt, but it was affecting my liver. Besides the rash and headaches I’m getting with Dasatinib I’m worried about getting the fluid around my lungs. How did you know when it happened to you? Did you have trouble breathing. I had part of my right lung removed in 11/2018 from a rare form of non- Hodgkins Lymphoma. So I’m worried about pleural effusion. I didn’t find out about the CML until last October. I’ve only been on Dasatinib for two weeks. Do you think the body will adjust over time and the rash and itch will go away?

I hope being off Tasigna for a few days will give you some relief. These drugs really do affect everyone differently.

Keep in touch!
Donna