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

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?

I’m so glad you posted. I also have CML and I can sympathize with what you’re going through. I was on Bosutinib but it was to hard on my liver. I started Dasatinib just two weeks ago. After the first week I got the rash and itchy scalp. It is driving me nuts. Some parts of the rash has little blisters on it. My face looks so bad I don’t want to leave the house. It’s one of the first times I was thankful for wearing a mask. I’m am 60 years old. I mentioned it to my oncologist last week. He asked me to continue on the drug until I have blood test results. I’m going today for the blood test. I will let you know how it goes for me and what is recommended for the rash. Do you have headaches on that medicine? The headaches I get on Dasatinib are debilitating.

Thank you Lori for your helpful information. I've done a lot of research and reading about CML since I was diagnosed via a normal regular CBC and I understand CML. It's the lab test results I have a hard time reading! But my oncologist helps me with those and when I get a new one I compare it with the previous.
I was diagnosed January of 22 and begin dasatinib February 1st. Had to change to nilotinib June 26th because I had pleural effusion 3 times on dasatinib. The fluid around my lungs has finally cleared completely for which I'm very thankful!

I'm really hoping I can find something that will make this itching tolerable because it's the only side effect I'm having right now. It consumes a lot of thought and energy to not scratch even though I finally found a product that helps for a few hours at a time. It's an itch-calming organic-based serum called Canviiy. I've tried all the antihistamines. Benadryl seems to help the most. I'm also not getting enough sleep because the itching keeps me awake. That's my biggest concern.

I just talked to the doctor's office again. He wants me to hold the Tasigna (I'm taking two 150 mg twice a day) for 3 days then call back to see if that helped. The only other thing will be to reduce the dosage - which he nor I want to do!

Hi @careydm! These TKI's sure work differently for different people. I started out on Dasatinib and the only side effect I had was the dangerous Pleural Effusion. After having it 3 times my oncologist changed my med to Tasigna. The only side effect I have from it is the itchy scalp, back, and rash (some of my rash itches and other's don't.) I know what you mean by different looking rashes. I have red ones that are raised, red ones that are flat, red ones with little white things in the middle - and all of them are different sizes and not all of them itch!

Has your doctor suggested antihistamines? I've tried all of them and don't see that they help. I am taking Claritin (just the antihistamine - not the one with D) for my regular seasonal allergies, but am going to switch back to Certizine. I'm also taking Benadryl - one three times a day. I believe it's helping a little. Fortunately it doesn't make me sleepy. The thing I'm most worried about is not getting enough sleep because the itching keeps me awake.

The only thing I've found that gives me some temporary relief is a lotion called ScalpBliss made by Canviiy.com. It's an organic based serum you rub into your scalp as often as you wish. It's not greasy and no odor. I think CVS drug stores are carrying it now. I order it on-line because I don't have a CVS in my town. It's not cheap, but one bottle lasts me for several months even though I use it often and liberally! It's $20 a container but worth it to me.

I just talked again about the itchy rash to my oncologist's nurse who again asked the doctor. He wants me to go off the Tasigna for 3 days and see if it goes away. He might have to lower the dosage which neither he nor I want! So I'll keep trying various shampoos, conditioners, and serums!

Keep in touch. Let me know the results of your blood test. My next gene blood test is September 19 and Dr. appointment is September 26. We will make it through all of this and live for many more years!

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

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

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.

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.

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

Thank you for the suggestions!