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lovemoon's avatar
lovemoon
Member
3 years ago

Chemo side effects

Hi, l have been recommended to have 4 cycles of chemotherapy following the pathology results of my double mastectomy. I wonder if there’s anyone who has been through a similar type of treatment. The drugs used will be docetaxel and cyclophosphamide. What are the main side effects based on your own experience? Also, about the use of cool cap, how cold is it? Would appreciate if anyone to have the same type of treatment to share your personal experience. Thanks!
  • Thank you so much for asking this and for the replies so far. Mum doesn’t trust forums and has been recommended the TC protocol so I was actually going to ask about it myself on her behalf. Following and hopefully things go smoothly for everyone on this journey 🌺
  • I would recommend the Cold Cap.
    I had  4 fortnightly Chemos of Epirubicin and Cyclophosphamide, and then 12 weekly Paclitaxol.
    I used the Cold cap throughout. I did not lose my hair. It did thin a little on top, where I believe the cap did not always fit as well as it could have. The fit is very important. It does add extra time at Chemo. 1/2 hr prior and 1 hr after.
    It is very cold. I think it went down to 4 degrees, The temp goes down in approx 5 degree increments.
    It was a little like when you jump in the pool. It is cold and you soon get used to it.
    I had no nausea, with any of my Chemo.
    I had Dexamethasone with each Chemo and some other drug which I believe was to help with nausea.
    Just looked it up Netupitant 300mg/Paolostron 500mcg oral.
    I did have side effects, but all were manageable. 
    Reflux, changes to finger nails. change of taste, occ tiredness, dry hair, constipation ( only immediately after the EC), dry eyes, loss of body hair eyebrows and later eyelashes. I do have a little peripheral neuropathy of the feet. It is minimal.
    After each Chemo with Dexamethasone I did not sleep well for 2-3 nights and had increased appetite. Most people experience some of this.
    If you want more info re cold cap, and photos, you can message me.
    All the best.

  • Hi @noosa_blue150 Thanks for the link, my oncologist did give me the side effects information from the EVIQ site. I'm trying to see if anyone has similar treatments who can share their experiences. And yes, I've getting some very good information. Thanks for your support!!   
  • The website that Oncologists use to provide information and print outs for patients is EVIQ.  The link is below for you.  You can type in the search bar the name of the drug you want information on.  Hope this helps. :)

    ......."Welcome to eviQ

    A free resource of evidence-based, consensus driven cancer treatment protocols and information for use at the point of care. eviQ is developed for the Australian context and supports health professionals in the delivery of cancer treatments."........... 

    (It is a NSW Government website.

    Cancer Treatments Online | eviQ


  • Hi @Beaglemum Thank you so much for sharing your experience with me. I do understand that everyone will react differently but hearing your story makes me feel so much better. I'm totally petrified with all these side effects that I read from the information my oncologist gave me, even though she did say that some of them were not common. 
    I'll look up TC (have no idea that's what this is called, I did some search using the full names of the drugs and didn't find anything). 
    Thank you so much for your kindness and well wishes!! xxx
  • Hi @lovemoon
    I had the chemo you are going to receive TC, 4 rounds and used the cool cap.

    Would definitely recommend cool cap if you can use it, yes it is cold at the start I was expecting a brain freeze for the whole time but it soon started to feel ok.  I had a warm blanket wrapped round me for the duration of my treatment.   Just make sure the nurse putting your cap on makes it secure, I had a lovely nurse do mine each time and she was really good.   Also have something to wear on your head to go home as it will be wet, they apply conditioner before starting the cool cap.   Initially I lost some hair, about 2 weeks in after 1st round, it went thin and patchy on the sides but overall it saved the majority of my hair, it was short anyway and the regrowth was pretty quick.

    I was petrified I would have all the side effects but I managed to get through it with minimal effects and I continued to work through treatment.  I  was given meds for nausea but didn't need them.   For each round I was on steroids for 3 days and given a neulasta injection to take home and administer.   Had pains in my back after the first round, which I spoke to nurse  about and was down to the neulasta injection - a common side effect.
    I did find I got more tired with each round and by the end I had really bad canklles, couldn't wear my nice shoes for a while.
    Nails did suffer a bit (again common side effect) went a bit discoloured and were soft.  I also got that horrible taste in my mouth around round 3.  That may sound like a lot of things but overall it was a much easier ride than I expected, i know everyone reacts differently so you may have different side effects.

    There is some information/experiences  from others on this site regarding their experiences, just put in a search for TC and you should find info there.

    Good luck for your treatment, you can do it x