Tamoxifen and Severe Headaches

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I was diagnosed on Valentine's Day 2017 with IDC Stage 1C and had a lumpectomy to remove the tumor.  I then started TC chemo and had a severe allergic reaction to the Taxotere on the 3rd treatment after 9 days.  I thought I was having a Heart Attack in which turned out to be anaphylactic shock to my system.  It started with my head being covered in hives and only got worse from there.  After a trip to the ER via ambulance and 12 hours later, they released me with hives all over my arms or wherever was itching at the time, and told me that I probably was suffering from Acid Reflux.  I did not believe this due to the allergic reaction I was having, they put me on steroids and Benadryl and I was back in the ER 2 days later as my thighs were one big hive about the size of cantaloupes and as thick as a pancake.  They gave me more Benadryl and sent me home with a topical anti-itch gel for my thighs.  I went to my Oncologists office on Mon and they sent me to the Dermatologist, this is where I finally received some relief.  In fact he stated I was having a severe reaction to the Taxotere and that it could take weeks to get out of my system, in which it did.  I was on 2 x Zyrtec a day with Benadryl at night for about 4 weeks before I started to feel better.  From the allergic reaction I also suffered shortness of breath that was also diagnosed from the reaction.   The chemo put me in to pre-menopause and immediately I started with the hot flashes, lucky me!

I completed 38 radiation treatments and then was told to start the Tamoxifen within 2 weeks.   I also take Effexor 225mg for Fibromyalgia and a vitamin D because I live in Alaska.  After the 1st week on Tamoxifen I noticed a weird headache on the back right quadrant of my head.  This was there everyday and although it wasn't 24/7 in the beginning it was getting worse.  I took Tylenol, advil, Excedrin Migraine and even my Imitrex for relief and could not get rid of it.  I finally called about 4 weeks in and told my Dr about the headaches.  She suggested that I stop the Tamoxifen for a week and see if it goes away.  After getting rid of one of my worse migraines about 48 hours later I felt great and headache free finally.  I called the Dr after 4 days and said that it was gone and they suggested that I shouldn't take the Tamoxifen anymore.

I went to the Dr's to discuss the next step for my BC and she told me I could do nothing, take a suppressive shot monthly, or have my ovaries out.  I am not interested in the monthly shot, what if I have another allergic reaction and have to wait for it to get out of my system?  I don't want to do nothing, then this Estrogen can get to any cancer cells and spread, again, not an option.  

I have an appointment with the GYN in Nov but would like to know more about what I should do.  I don't think they have the best care here in Alaska, should I go somewhere else for a 2nd opinion that deals with this type of stuff.  For my allergic reaction to Taxotere, they said I was the worse case they had ever seen and I am not sure that it was even reported being the delayed reaction.  I am frustrated and feeling alone here in AK.  What should I do?



Comments

  • rljes
    rljes Member Posts: 547
    edited September 2017

    mcichoracki - oh my goodness.  I wish I could say something to help.  But your post about migraines is my worst nightmare.  I have yet to start chemo or anti estrogen treatment.  I too have Fibromyalgia and chronic migraines.  Imitrix works.  I'm afraid once I start treatment, the imitrix won't work.  I have a great Dermatologist and will remember to utilize him.  Thanks for your post - I hope you find relief.  

  • mcichoracki
    mcichoracki Member Posts: 19
    edited September 2017

    rljessu-thanks for your response.  If you have to do Chemo and they recommend TC, please be cautious of a reaction whether it is immediate or delayed.  I switched off of Lyrica for my Fibromyalgia because you can't take it with Tamoxifen.  Make sure there is a plan in place so that your meds are a match (might want to check now so that you can switch, if needed).  I feel that if it hasn't been 1 thing, it has been another.  I also forgot to mention that I had 2 surgeries because my margins were not clear on the 1st one.  Every step I take to rid this cancer seems to put me 2 steps back....ugh!

    Best of luck to you, looks like you recently had surgery and hope you are healing good.  I will update what I am going to do once a decision is made so check back

  • exercise_guru
    exercise_guru Member Posts: 716
    edited September 2017

    I would recomend that if you have your ovaries out you go to a good hospital where they can do it orthoscopically. I had it done open abdominal and would not recomend it if I could avoid it.

  • Djohn
    Djohn Member Posts: 14
    edited December 2017

    Sorry to hear about your experiences. I hope you were able to find a solution. I too have had reactions to various meds throughout all phases of treatment. I’m now on Lupron and Tamoxifen and am having constant tension headaches. Trying gabapentin now but so far not much relief, but hoping my body will adjust to the medsand symptoms will lessen in time.

  • mcichoracki
    mcichoracki Member Posts: 19
    edited January 2018

    Hello Djohn, 

    Sorry to hear you seem to be having the same reaction to the Tamoxifen as I had.  I just had my tubes & ovaries removed on 30 Nov and am feeling better.  I am taking a bunch of supplements to help with the instant menopausal symptoms and they seem to be working pretty good.  Not sure how long you have been on the Tamoxifen but you might want to stop for a few days and see if it goes away?  It will not hurt to try it and will not affect your treatment for a week off of it.  Please let me know, I am more than willing to speak with you about this if it continues.

  • NikJ
    NikJ Member Posts: 24
    edited January 2018

    mcichoracki can you share what supplements you are taking? I'm planning on the ovary removal soon and would like to be prepared for the instant menopause.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited January 2018

    Get a second opinion for sure. I had a nightmare headache on tamoxifen for the first week, and sporadically for the first month. My MO suggested I try to power through it if I can, and said that it often resolves in a month or two as your body adjusts to the medicine. I was SO annoyed and skeptical that I almost quit tamoxifen, but I did power through, and after about a month I had no more headaches. That's just what happened to me, but maybe it'll be that way for you too. I don't blame you for not wanting to take your chances with no hormone medicine - I wouldn't either.

    If you can, go to an NCI designated hospital for a second opinion. https://www.cancer.gov/research/nci-role/cancer-centers/find

    PS I also had a terrible reaction to Taxotere after my third treatment. That stuff was awful for me.


  • mcichoracki
    mcichoracki Member Posts: 19
    edited January 2018

    Hi NikJ, 

    Please make sure you discuss having your tubes removed also, there is more studies that show the cause of the cancer is actually the tubes so it is important to take both.  

    I am taking Hesperidin Methyl Chalcone - 500mg per day.  When I went to the Cancer Center their naturalist was able to give me the name of this and it really does help.  When I had the chemo induced menopause, I would start the fire from my feet and feel it moving straight up to my head.  Now I only get warm and is controllable.  

    Good luck with your surgery and your recovery.

    Regards, 

    Margaret

  • mcichoracki
    mcichoracki Member Posts: 19
    edited January 2018

    Hello buttonsmachine, 

    I did try to get over the headache by mine was pretty severe EVERY day for over a month.  I just had my tubes/ovaries out in Dec and am tolerating the Letrozole.  I also had a 2nd opinion at the Cancer Center.  I hope your body will continue to accept it.  

    Did I read your bio right that your IDC came back a 2nd time?  Please give me more info on this, feel free to PM me if you don't want to share.  I go today for my 1 year check up and am very anxious, now more than ever.

    Regards, 

    Margaret

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