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

Thank you, that is helpful.

Oh, another help: ICE! I take an ice cube and slowly move it over the itchy area until it is numb. This not only stops the itching but it keeps the histamines from collecting in the itchy area.

Hello Donna,
I've been waiting to see some results before I answered you. The third day I was off Tasigna I began to feel less itch. The next day I was supposed to go back on it. However, after continued research and agreement by my doctor's nurse that dosages were tested mostly on men, I began taking just half the dosage he had recommended. I''ve now been 7 days on the half dose. The itching is barely noticeable - at least I can stand it without scratching. My rash is slowly disappearing and I'm sleeping a little better. (going to begin taking melatonin per regular doctor's strong suggestion yesterday).
I relayed all this to the nurse and flat out told her to tell him I was not going back on full dosage of Tasigna. I haven't heard back from her so he must not going to try to persuade me any differently. I don't see him again until the 26th of this month - he might try then, or put me on a different med which I would dread. At least I know the demons I live with on this med!
Of course it will all depend on whether the half dose will continue the healing process of the CML.
How are you doing on your early doses of Sprycel? (wasn't that the one?) Tell me what's happening - or hopefully you are having no side effects!

Judy

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 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?

I will keep you posted Lori. Here is the only study I've found so far (this is just the part I could understand best!)
https://ascopubs.org/doi/10.1200/JCO.21.02377
Women have more adverse events (AEs) from chemotherapy than men, but few studies have investigated sex differences in immune or targeted therapies. We examined AEs by sex across different treatment domains.
METHODS

We analyzed treatment-related AEs by sex in SWOG phase II and III clinical trials conducted between 1980 and 2019, excluding sex-specific cancers. AE codes and grade were categorized using the Common Terminology Criteria for Adverse Events. Symptomatic AEs were defined as those aligned with the National Cancer Institute's Patient-Reported Outcome–Common Terminology Criteria for Adverse Events; laboratory-based or observable/measurable AEs were designated as objective (hematologic v nonhematologic). Multivariable logistic regression was used, adjusting for age, race, and disease prognosis. Thirteen symptomatic and 14 objective AE categories were examined.
RESULTS

In total, N = 23,296 patients (women, 8,838 [37.9%]; men, 14,458 [62.1%]) from 202 trials experiencing 274,688 AEs were analyzed; 17,417 received chemotherapy, 2,319 received immunotherapy, and 3,560 received targeted therapy. Overall, 64.6% (n = 15,051) experienced one or more severe (grade ≥ 3) AEs. 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, especially immunotherapy (OR = 1.66; 95% CI, 1.37 to 2.01; P < .001). Women receiving chemotherapy or immunotherapy experienced increased severe hematologic AE. No statistically significant sex differences in risk of nonhematologic AEs were found.

I cut my meds in half 9 days ago after Dr. said I could go off them for three days because of unbearable symptoms. My symptoms are almost completely gone. I feel better than before diagnosis 9 months ago. Has anyone else been able to have meds halved with good blood results?

Judy, I moved your recent question to this discussion where you've connected with other members about your medication side effects. Can I get some clarification? Your doctor suggested a brief pause for 3 days. Did you stop your meds for those 3 days? And since then you've restarted but are taking only half the dosage of Tasigna? Did I get that right?

Yes Colleen. My hematologist/oncologist, Dr. Monte Martin (associated with Norton Cancer Center,) told me to go off the meds for 3 days which I did. On the fourth day I was supposed to go back to the 600 mg twice a day. However, during those 3 days my unbearable itchy scalp and back and red blotches of different sizes and types all over my body were rapidly disappearing ( I had managed things for 2 1/2 months but everything kept getting worse even though I was trying Benadryl and other anti-itch things the nurse was recommending.) The day I was supposed to call his nurse back and report how things were going was on the Friday before Labor Day - they are closed on Fridays so I couldn't report until the day after Labor Day.
In the meantime I couldn't stand the thought of things getting worse again so for those 4 days when I couldn't report, I took just 1/2 the dose - one 150 mg capsule in the morning and one in the evening. I reported back on Tuesday after Labor Day. The nurse said she would tell the doctor and get back with me which she did 2 days later. She said she told him and only got raised eyebrows. I asked her to ask him to be more specific and that I was going to continue to take 1/2 the prescribed dose until he said yes or no. He said ok until he sees me at my regular office visit Sept 26.
During the past 18 days of 1/2 dose I'm able to manage the itching and my skin is still improving. I have more energy and feel better than I've felt since before the diagnosis. I know it will take several month of blood work to see if the 1/2 dose is working.
On the Facebook worldwide CML chat site I posed the question of how many had their dose cut in half by their doctor due to unbearable or dangerous side effects and how that was going. Within 4 hours I had received over 75 responses - all from women, all saying yes, all saying either the disease had gone into MMR within a year or their numbers were rapidly improving and they were feeling much better. The moderator stopped the comments that same day even though they were still coming in.
I have long believed doctors are overdosing women. A 200 lb man and a 125 lb, 81 year old lady (me) should not be taking the same dosages. That's just common sense thinking to me.
So there is my epistle and my thinking and my personal 9 month journey so far! Oh, the first part of my journey I was on Sprycel for 5 months - 100 mg once a day. After 3 rounds of pleural effusion he took me off Sprycel, gave me a month rest and I then began the Tasigna.
Sincerely, Judy

Hi Lori - Judy here keeping you posted.

Cutting my Tasigna from 600 mg to 300 mg daily has been the best thing ever. I've been on 300 for 8 weeks now and I feel wonderful. Very little itching, no brain fog, no depression, lots of energy and desire to be present again, to do things and to be with people. Had my first appointment Monday with my oncologist/hematologist since I had put myself (with his approval) on half dosage. He was pleased with my numbers. My first e1a2 numbers were 47.6969 (January 4, 2022), my second ones were 3.1753 (April 4, 2022) and my third ones were 0.3671 (September 19, 2022).

I'm praying the downward trend will continue on the half dose. I won't know for 3 months. In the meantime, I feel alive again with few side effects and no struggle.