Chemo side effects

lovemoon

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!

Beaglemum

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

lovemoon

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

Keeping_positive1

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

noosa_blue150

https://www.eviq.org.au/medical-oncology/breast/adjuvant/24-breast-adjuvant-tc-docetaxel-and-cyclophospham

My oncologist always prints out the relevant pages from EVIQ site for me for my chemo/immunotherapy regime as it lists info such as side effects , and other useful,info . I think this is yours relevant sheet for the TC . I haven’t had that particular regime but sounds like other posters here have given you some good info 

lovemoon

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!!   

Abbydog

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.

GenK

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 🌺

lovemoon

Thank you @Abbydog for sharing your experience. I had my first treatment session 2 weeks ago. Interestingly, the cold cap worked well. They gave me 2 panadols before putting the cap on, then, an ativan to help with the anxiety, followed by a warm blanket. So, I have to say, I'm well protected from the cold. Given it's only my first treatment, I have yet to have any hair loss. So, hope that the cold cap can protect me from hair loss.
I also have dexamethasone for 3 days (two before the day of chemo, two on the day and another two on the day after). I believe they help too. Not much nausea from my first treatment and no loss of appetite. Main side effects so far are fatigue, dry mouth, sore throat (which is not Covid-related) and the latest one is flushing cheeks and I have to turn off the heater even this is winter! I also had ativan to help with the anxiety and sleep for about 3 days after the chemo. I haven't been sleeping well since then and the oncologist suggested that I can take ativan, say once a week (should be safe to prevention addiction). Have been drinking more than 2 litres of fluids every day to keep hydrated. Guess I'm ready for the 2nd treatment next week. Thanks again for your kindness.

lovemoon

Thank you @GenK for your message and your well wishes. i have to admit, I do hesitate to go into forums because you keep hearing horrid stories! It is important to know that everyone's experience will be different. I have put some of my experience for the 1st cycle in my last post. I'll be more than happy to share my experience with the remaining 3 cycles here, just to document what could happen. Apart from drinking 2 litres of water or fluid, I have also used a nail hardener for my nails as some people have problems with their nails. Not sure if it helps, but guess it doesn't hurt to give yourself some extra protection. In fact, I'm drinking up to 3 litres of water these days to help with the dry mouth and sore throat. I have also rinse my mouth with salt water and Oral 7 mouth wash to help with the dry mouth. So far, these are all working well. Just need to figure how to deal with my flushing cheeks so that i can turn the heater back on, otherwise, husband and dog have to freeze with me 

Blossom1961

My cheeks burned from the cortisone so I had to choose between the nausea or the burning cheeks

lovemoon

@Blossom1961 Let's hope that we don't have to choose. I find drinking a lot of fluid helps with the nausea but doesn't work for burning cheeks. I put some ice on my cheeks and it helps to cool my cheeks down after about an hour. I bought a humidifier yesterday, not sure if it helps yet.

Blossom1961

@lovemoon I dropped the cortisone altogether as the burning cheeks made life a misery. I ended up taking maxolon for the nausea as the alternative to the cortisone.

lovemoon

@Blossom1961 Glad that you found an alternative. I'm not taking any medication, so, no idea why. Nevertheless, the humidifier works well last night. You take care 

Blossom1961

@lovemoon, the dexamethasone is a cortisone and they put it in with the chemo as well as offer it to you for after. This is what I stopped taking and they agreed to stop putting it in with the chemo. I was desperate.

lovemoon

@Blossom1961 Thanks for letting me know. I haven't made the connection cos I had the dexamethsone almost 3 weeks ago in my first cycle. I need to take it again starting today because my second cycle is up tomorrow. I will speak to my oncologist when I see her tomorrow morning. Thank you so much for bringing it up!