Scalp Pain is Caused by Ibrance or Letrozole or the Combination

This is a realization that came to me suddenly yesterday when I realized that my scalp no longer had intermittent painful areas – after I stopped both Ibrance and Letrozole. My painful scalp had become a constant companion for at least two years now – and I never connected it to the DRUGS until yesterday!

I had found ways to deal with the expected “hair thinning” from Ibrance – I found that there are DHT Removing shampoos available that reduce the hair loss because the estrogen blockers end up building up something called DHT on your scalp which contributes to the hair thinning.

In the beginning of my Ibrance/Letrozole regimen, I started noticing hair coming out in the shower or when I brushed my hair – like a LOT. I’m talking maybe 100 hairs would be on the shower floor. I was shedding like a dog even.

So after doing some research I found this article about DHT being the cause of “quality of life” issues with hair thinning for those on estrogen blocking drugs for cancer. And so I set out to find DHT removing shampoos and settled on this one which I still use today.

I don’t remember when the scalp pain started so that is why I did not connect it to the drugs. But I came up with a way to deal with it which seemed to work – I would apply 2 packets of LypoSpheric Vitamin C to my scalp after washing it and would leave it on for a minute or two after rubbing it gently into my scalp – focusing on the areas that were painful.

I got IMMEDIATE relief from the pain with these Vitamin C packets and the relief would last until the next shampoo – usually two days later. However, if I wore my hair up in a banana clip or pony tail, the pain would return sooner. It was as if any pulling of my hair would trigger the pain – but it never hurt while wearing my hair up but AFTER I took my hair out of the clip or pony tail.

I had mentioned this scalp pain to my oncologist – at least a few times – mostly to say that I had found a good solution with the Vitamin C packets. NEVER did she say – oh that’s a side effect from the Ibrance/Letrozole. Instead she implied these were breast cancer lesions on my scalp. In fact, I had a dermatologist take a biopsy of one of the bare patches that seemed to be part of the painful areas and she confirmed these were breast cancer lesions.

So I was going along thinking this scalp pain was my breast cancer which had spread to my scalp and that was what hurt. That served to keep me sufficiently worried to stay on the drugs all this time – that is for sure.

Imagine my surprise when I realized my scalp pain was gone after stopping these drugs! Until yesterday I had not thought to do an Internet search with the string “scalp pain” +Ibrance When I did – I found tons of people experiencing the same scalp pain in exactly the same way. I was shocked that this was news to me!

Now let me back up just a bit as to why I stopped taking Ibrance and Letrozole. I stopped the Ibrance on April 6th because my liver enzymes had started to become elevated. (AST around 113 and ALT around 105) I did some research on THAT and found this article that pointed to Ibrance causing a sort of “pseudo-cirrhosis” of the liver. So I stopped taking it right then and there to try to heal my liver.

I stopped the Letrozole on May 5th because I found there could still be some liver issues with Letrozole and I just wanted to give my body and my liver a break from the drugs.

So I don’t know if the scalp pain ended because I stopped the Letrozole or the Ibrance but one of those or both is the culprit for sure.

At the same time, I am trying out an alternative treatment called Ultraviolet Blood Irradiation at a local integrative health clinic. I have had two treatments so far. I will do a separate post on this – but the main reason I am trying this is because my red blood cells are low (2.2) and so is my hemoglobin (7.8). All during my taking of Ibrance we had to keep an eye on the Absolute Neutrophils or ANC and normal is 2 and above – mine was usually around 1 and sometimes dropped below 1. The lowest number I had seen was .5 and the doctor told me to be very careful about being in public as I was susceptible to picking up something.

Now – after stopping Ibrance, my ANC is around 4 which is amazing – but now I am dealing with the low red blood cells and hemoglobin. The UBI is useful for many conditions and diseases but one of the benefits is that it increases red blood cells and hemoglobin and generally oxygenates your blood. After just one treatment my hemoglobin was up slightly (7.9) and my red blood cells also were up slightly.

I think for anyone on this same journey or any healing journey it is important to document what drugs or supplements you start taking or stop taking so you can be more clear about how your body is responding to them. That is the lesson I take from this.

I may or may not start Ibrance again – I am not totally demonizing it – but now I will use it with caution and if I do start again, I will start with the lowest dose possible. How I feel and how my blood tests are will determine whether or not I start back on Ibrance or not. My hope is that I don’t have to….

Oh and if you want to monitor your own blood health you can get your own tests ordered at Walk In Lab – you order and pay for the tests you want (I get CBC and CMP) and then schedule an appointment at a local LabCorp or Quest Diagnostics to draw the blood. You present your “order” to the lab techs when you arrive and then you get the results back within a day or so via email and your Walk In Lab account. Very easy!