Hot head: I am on ibrance and letrozole... - SHARE Metastatic ...

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Hot head

Jackdennis5 profile image
9 Replies

I am on ibrance and letrozole and the only problem I have had is that on the ninth day I get extreme heat on my scalp and the top of my head throbs the only relief I get is to wash it in cold water this lasts for about 5days but according to my oncologist she has never heard of it . Has anyone else had this problem.

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Jackdennis5
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9 Replies
Timtam56 profile image
Timtam56

Hmmmmm. I have hot flushes, and I get a really sore skull/scalp. But I wouldn’t explain it as hot.

Livinthedream profile image
Livinthedream

Never heard of that and never had that.

LisaT23 profile image
LisaT23

Hi,

I had a right mastectomy and radiation to my right breast in 2003, my chest and right under arm do not sweat. Arimidex (like letrozole) and now Faslodex would give me hot flashes That would make my head really feel hot and my hair would get soaked. It was like I only sweat on my head. Picture standing in the summer sun.

Could it be hot flashes?

Lisa

JoyBe profile image
JoyBe

This is a long reply:

From my experience, I would say it's the Letozole inactive pharmaceutical ingredients in your specific "brand". There are 29 "brands" that I know of for Letrozole.

I honestly feel the pharmacist and ONC should inform the MBC patient about the possible side effects from the inactive ingredients before considering changing medication or brushing the side effect off as part of the Ibrance Letrozole side effects.

I say this based on facts.

I have been on 3 different Letrozole "brands".

The first change was after 6 months April 2018-Sept. 2019 on Breckenridge Pharm. Due to the cost becoming too high for my pharmacist. I had no side effects from that "brand".

The second "brand" was TEVA, I was on this for the next 6 months Oct.2018 - March 2019 until a new pharmacist ran out of their supply of TEVA.

My side effects from the TEVA were bloody sinus discharge and gradual severe pain and stiffness in my finger joints. I was getting ready to stop taking Letrozole when I noticed the pharmacist switched to a NEW "brand" by Accord Healthcare Pharm, without telling me. I caught the change by accident.

NOTE: I requested that the pharmacist never send me the TEVA "brand" and they did not have a problem with my request.

The first side effects from the TEVA that almost immediately disappeared was the bloody sinus discharge. I was shocked my sinus discharge was clear.

Then I noticed a gradual change in the pain and stiffness in my hands leaving. By the 5th week on the Accord Healthcare "brand" you talk about soaking wet head and red face when outside for no more then 5 mins. in the yard, OMG! my hair, face and neck are dripping and my face is beat red!

I never ever had this side effect when I went thru Menopause.

My BP was 121/75 a week ago and is always at a remarkable healthy level.

With all that said, check your Letrozole "brand" and if you want, request a different "brand" and see if it stops your head from heating up, be prepared that you may have a new side effect from the new "brand".

I have been looking up some of the inactive ingredients and it blows my mind how the Pharm. companies are getting away with using some of these inactive ingredients.

Also, the fact that there are 29 different Letrozole "brands", well that speaks volumes to me how MBC has become a victim to Pharmaceutical Companies level of GREED.

Lastly, most MBC patients are to overwhelmed by their diagnosis, most have been taking medications for some time for BC 1,2 and 3 and very few have started taking medication for the very first time in their life like I have.

So detecting and differentiating medication side effects from Pharmaceutical "inactive filler ingredients" falls right thru the cracks and is sweep off as part of the general side effects of MBC survival when perhaps that is not the case.

For me, This dripping wet side effect that keeps me soaked when in the yard with sweat dripping into my eyes and all over my glasses as if a faucet was turned on, well it's a novelty LOL that I'm wondering perhaps this is a sign that this "brand" is REALLY stopping the estrogen to a dead halt and that may cause some further positive results in my next scans in July/August.

I'm willing to tolerate this side effect since the pain in my hands now is occasional from over use.

By the way, it can be night or day and when I'm doing any movement outside I'm drenched. If I tie a scarf around my neck it helps to keep only my nest from dripping. AND this is the only time I am drenched. In the house, I'm dry.

It's a lot to share put I hope not helps.

Jackdennis5 profile image
Jackdennis5 in reply toJoyBe

Thank you so much for the information it makes a lot of sense I will look into it. I am 69 and I went through the menopause in my early 30s so I don't believe its hot flushes. When my head is hot the top of my scalp pulsates and is very uncomfortable and sore. All my life I have never had a good tolerance to conventional medicines and for 30years have used homeopathy but I can't use it now so I half expected problems when I went on the medication but I have never experienced anything like this. Thanks again for the information.

Jackdennis5 profile image
Jackdennis5 in reply toJoyBe

I have just checked my letrozole and it's accord so it looks like your right I will speak to the onc about it.

JoyBe profile image
JoyBe in reply toJackdennis5

It does look like we have a similar lack of pharmaceutical use history.

I do know a bit about homeopathy since I raised my Autism Spectrum daughter using homeopathy thru 2 medical doctors and I was a part of a study group so I could learn more.

With that said, I am certain your having a side effect of one of the inactive ingredients. It's such BS to refer to a filler as an inactive ingredient.

Here are the inactive ingredients for Accord Healthcare:

silicon dioxide/hypromellose 2910(6mpa.s)/ferric oxide yellow/lactose monohydrate/magnesium stearate/starch,corn/cellulose, microcrystalline/polyethylene glycol 400/sodium starch glycolate type a potato/talc/titanium dioxide.

Here are a few I looked up: “Silicone Dioxide is a proven carcinogen. ... Silicon dioxide is found in higher amounts in plant-based foods, nuts and some fruits.

In the pharmaceutical industry, silicon dioxide (also known as colloidal silicon dioxide) has many uses in tablet-making, including as an anti-caking agent, adsorbent, disintegrant, or glidant to allow powder to flow freely when tablets are processed. These compounds appear to be biologically inert. Silicon dioxide is generally recognized as safe by the FDA.

(generally recognized as safe) that's concerning.

Microcrystalline cellulose is a commonly used excipient in the pharmaceutical industry. It has excellent compressibility properties and is used in solid dose forms, such as tablets. Tablets can be formed that are hard, but dissolve quickly. Microcrystalline cellulose is the same as cellulose, except that it meets USP standards.

Our cells cannot stop the micro-nano particles from entering them, and once there, these particles, especially from cellulose from wood, which is what Microcrystalline Cellulose comes from, are not able to be absorbed, but float in and out of the cell membranes, and basically clog up tiny places in our bodies, bio-accumulating as we ingest more, and cause background inflammation to rise. Beware of ‘Cellulose’ as a filler in food products. If it comes from “A Vegetable Source” that is OK, if it does not specify, it means it came from, “Wood Pulp” Steer clear of any and all products that use Microcrystalline Cellulose whose source is not indicated.

In the pharmaceutical industry, polyethylene glycols are commonly utilized as solvents, plasticizers, ointments, surfactants, and suppository bases. Polyethylene glycols are used in numerous personal care products as well, particularly in toothpastes, mouthwashes, and breath fresheners.

Polyethylene glycols in general have been found to have an assortment of negative health effects.

For one, polyethylene glycols have the potential to be contaminated with ethylene oxide and 1,4-dioxane, with the former being a known carcinogen and the latter being a possible human carcinogen.

Damaged skin can be harmed by products containing polyethylene glycols. Individuals with broken skin or eczema are at risk of experiencing skin irritation or sensitization. Moreover, the presence of other skin substances and/or medications can enhance the irritating and sensitizing effects of polyethylene glycols.

In addition, polyethylene glycols can cause further harm on the skin by stripping it of its natural moisture. This makes the skin more vulnerable to any toxic ingredients that could be present in other skin care products.

Magnesium stearate is an additive that’s primarily used in medication capsules. It’s considered a “flow agent.” It prevents the individual ingredients in a capsule from sticking to each other and the machine that creates the capsules.

Hypromellose, also commonly known as hydroxypropyl methycellulose (HPMC) is a coating agent and film-former used as an inactive ingredient in the pharmaceutical industry.[1] It has also been used as a rate-controlling polymer for sustained-release dose forms.

That's all I have so far, if that's not overwhelming enough. I plan on sharing this information with my ONC as well during my next appt. on June 28th.

You'll find this information helpful as well:

integrativeholistichealth.o...

Merma profile image
Merma

Thank you for posting this. I was getting a sore scalp. It felt like my hair folicles were burning. My onc hadn't heard of it either. The neuralogist said that this was neurapathy. I have been taking L-Glutamine and Acetyl L-Carnitine and that really helped.

Jackdennis5 profile image
Jackdennis5

Thank you I will look into that .

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