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Chemo journey - I want to hear about yours
ABBYB
24 Posts

Hi everyone, I was diagnosed with triple + breast cancer in July.

Yesterday I had my first round of chemo. Long day!! I slept for the last 3 hours. I am getting docetaxel/carboplatin/trastuzumab. I had a slight reaction to the docetaxal but benadryl helped and got thru that with no other issues.

I was really tired all evening, but still had an appetite. No nausea, no vomiting, everything else seems to be going smoothly. And today has been the same, slight headache. I know what to keep an eye out for…I would like to know about other things I should/could expect in the coming days. Or what to take notice of.

Also any tips for things like itchy/dry skin. Oral issues. Just anything. I am all ears right now.

I look at this as ROUND 1 down, 5 more to go!!! So Im trying to stay positive and my emotional state feels better today that it has in past 2 months. I can't explain it…. Thanks for any responses. Hope I made sense, i know we are all in different headspaces

14 Replies
JustJan
932 Posts

@ABBYB congratulations on completing your first round of chemo! I had carboplatin and paclitaxol for my chemo. Slightly different drugs but probably some of the same side effects. Here is my list:

  1. take all meds as prescribed
  2. drink LOTS of water the day of chemo and for the first couple of days after to flush your system
  3. stay ahead of constipation as this can make you feel really crummy
  4. I used biotene mouthwash twice a day to help prevent mouth sores. They also have a spray which is nice.
  5. I kept track of my side effects and what I did about them on a calendar. I took this with me to discuss with my care team so adjustments to my meds or chemo could be made.
  6. I found the first couple of days I did’t feel too badly but then various side effects kicked in. By the end of the 2nd week following chemo I was feeling more like myself. Week 3 I felt quite good and then I’d start all over.
  7. listen to your body and rest when you need it
  8. try to take a short walk every day even if just to the end of your driveway

I hope you continue to feel well. If you start to get some specific side effects, post again and I’m sure you will find someone that has experienced it.

Essjay
1569 Posts

@ABBYB congrats on making it through your first chemo session!

I had treatment for triple negative BC 2018-19, and had a slightly different regime to you (Doxyrubicin and cyclophosphamide for 4 cycles every 2 weeks, then Paclitaxel for 4 cycles every 2 weeks).

Big thing I found was the impact on my digestive system and my energy levels.

I had to manage constipation and diarrhea through treatment and beyond. It was a constant effort and I had many days when I didn’t feel able to leave the house (unless I took Imodium). I lost my taste for things - citrus tasted best. And I couldn’t cope with dairy much.
Lost my hair after my second cycle - everywhere. This is a bit of a shock - body hair, head hair, nose and ears, eyebrows and eyelashes…thank goodness it’s temporary.

Fatigue - I napped daily through chemo, but I also made an effort to get outside daily and I did some form of exercise daily. I found setting myself small goals helped keep me moving eg. Today I’m going to make banana bread, or I shall get the laundry done, or I’m going to the gym. Not too many things on my list.
I found I felt best the days before my next cycle. I booked time with friends these days - coffee, lunch, normal stuff and keeping in contact, although I found I had little to talk about other than treatment but I listened and enjoyed their company.

Hope this helps - and that the next few days go well for you.

#Breastcancer #chemotherapy

ABBYB
24 Posts

Thanks so much @JustJan I am going to look into the biotene. I am brushing and rinsing after meals. But just used baking soda. I also heard Chamomile tea is a good natural mouth rinse for oral issues. I will make a note of any symptoms as well. I am just tired so napping as needed. I am always a busy body so need to find other things to occupy my time except for Amazon Prime 🤣 Take care, I will post again if I am noticing other signs and symptoms.

Mee
52 Posts

Hi @ABBYB Welcome to the forum (a very supportive and helpful place).

I was diagnosed with IDC ER/PR-, HER2+, and had the identical chemo regimen to yours, finishing on July 23, 2021. The first chemo treatment was the roughest. I had dry heaves, sour stomach, and felt “unwell” for several days. On follow-up with my oncologist, he recommended trying Pantalok, a prescription drug to reduce acid/heartburn, and it seemed to do the trick regarding sour stomach. I didn't have any changes in smell or taste (thank goodness). One suggestion from the chemo dietician was to rinse my mouth with a mixture of ½ tsp each baking soda and salt mixed into 2 cups of water every time I went to the bathroom, plus after eating/drinking anything. This helped me to prevent mouth sores during the chemo. After the chemo finished, I stopped doing the mouth rinse, and several weeks post-chemo, I developed ulcers on the edges of my tongue (very painful), so I started the rinses again plus I used a prescription mouth rinse (mucositis - horrible name) which helped to heal the tongue ulcers. As others have mentioned, it is important to hydrate (drink LOTS) of water or whatever you can manage to drink (obviously NOT alcohol or caffeine). I found it helpful to listen to my body, so if I had low energy, I rested, and if I had more energy, I did a bit more. What I found was that after the 5th chemo treatment, I “hit a wall”, where I literally had NO energy and couldn't even climb a flight of stairs without resting multiple times (and by the time I reached the top, I felt like I'd run a marathon). I was resting and dozing/sleeping off and on for most of the day. The fatigue is a common side-effect, and it lasted a LONG time (still have the occasional day of low energy).

If you weren't given the option of ice mitts and booties during the Docetaxel, please request them - they will help prevent discolouration and lifting of your fingernails and toenails. Also, if you have a Benelyn drip before the Docetaxel, it helps, and you can request that they slow down the drip by 5 or 10 minutes so that the “jumpy legs” side effect is less pronounced. I found that having the Benelyn over 20 minutes (or sometimes even 25 minutes) helped a lot.

I'm not sure if you are given a Lapelga injection 24 hours after your chemo finishes, but if this is part of your protocol, it was suggested that I take Claritin for 5-7 days after the chemo (i.e. from the day of the shot for several days after) to help with the bone pain side-effect.

Best of luck with your chemo treatments (plus any other treatments that you are scheduled to undergo). With your positive outlook, you will be able to manage and get through the chemo really well!!!

Dakley
13 Posts

@ABBYB Congratulations on completing that first round! It is the hardest one, long and the lead up to it was something awful. It too was diagnosed triple + in June. I have completed 2 rounds of the exact protocol as you. Just as @JustJan mentioned all those tips are crucial to helping get through and/or avoiding those nasty side effects. I was anticipating that I would have every side effect the doctor told me about but what I did have was fatigue, a bit of nausea but thank goodness for all those anti-nausea meds they give you, it really wasn’t an issue. I did experience loss of appetite for a few days but it came back full force. The second round I found I was again more fatigued for the few days following chemo but that’s really been it this round. Good luck on your next rounds and may you experience little to no effects.

Mammabear
188 Posts

Different protocol than I was on back in 2015 with Cancer 1.0 (ACTT). Have since had recurrence so when you are done be diligent with follow up blood work and how you are feeling. HER2+ likes to come back but I heard the new protocols are working on that.

Cancer 2.0 protocol also different - weekly taxol with herceptin and pertuzumab every 3 weeks. Now herceptin and pertuzumab continue for life but easily tolerated.

Get used to being tired and rest. Fatigue is hard - even if you are tired be sure to walk. it will help and help with other side-effects as well. Even if it is only a few houses down the street and back and slow with stops. Do it. Fatigue will pass after treatment is done but it takes time. Prioritize activities that take energy.

Keep crossing those treatments off - you are almost half way ;)

Runner Girl
2044 Posts

Hello @ABBYB

I started out with the same chemo that you are having, then the side effects hit and things changed.

My first chemo was docetaxal, carboplatin and herceptin. Had ice on hands/feet for docetaxal and sipped cool water during entire infusion to avoid mouth sores. Infusion was Tuesday, last dexamethasone on Wednesday, full side effects Friday - worst throat and ear pain ever, lasted a couple of days. Reported to oncologist, he had never heard of this, my research said carboplatin is a platinum base drug and can cause ear damage. Second chemo the same but carboplatin reduced to 80%. No ear pain this time, but on Friday morning I had zero balance. I was falling over putting my mascara on to go to work. I let my boss know I wouldn't be in as I was not safe to be driving. It was like I was really drunk, had to hold on to the wall and railing to get down the stairs - this lasted 24 hours. I now have permanent ringing in my ears. Oncologist decided to change third chemo to docetaxal, cyclophosphamide and herceptin. 4 hours after infusion I felt like 2 bony hands were crushing my chest and my heart rate dropped to 50 bpm (by my fitbit). After this we dropped the “C” drugs and did the last 3 infusions with docetaxal and herceptin only. I had no further major issues. I had nose sores and used diaper rash cream to resolve them. My right eye twitched and watered the whole time and continued for a month after treatment finished. Of course I lost my hair 14 days after the first infusion, like ALL my hair. Losing the nose hair is the worst, always carry a kleenex with you because every time you dip your head your nose is going to run because there is nothing to stop it. I was able to run on my off chemo weeks and I continued to work full time, only missing work the one day that my balance was messed up. I wore colorful head covers and long dangly earrings, my wig gave me a rash on my head after 2 days so gave that up. I used the Biotene regularly but have recently learned that some of their products have parabens in them so be careful when buying and read the labels. Get some dark nail polish and paint your finger/toe nails. This is recommended for docetaxal chemo to help save your nails. Consider picking up eyebrow templates and an eyebrow pencil - unless you draw on eyebrows regularly the templates really help you not to look like an emoji. I couldn't get the two to be the same so using the template really helped and was alot quicker. Also, using an eyeliner pencil helps to camouflage the fact that you don't have eyelashes.

Like you I counted down the treatments, quite quickly I was at the half way point then suddenly I was having my last chemo. You're doing great with this. Record your side effects and report them all to the oncologist so they can tweak your treatment if necessary.

Runner Girl

ABBYB
24 Posts
Thanks Mee‍ I wondered about the jittery legs, I was so tired during the infusion but felt so agitated. I guess I need to be more vocal about those little things that seem unimportant. And I have been rinsing throughout the day. Its day 3 and I'm tired today and achy. I still have appetite but finding I am getting indigestion. So need to cut back on some things that wouldn't normally bother me. I so appreciate your comments. I need all the help & support, I am just embarking on this journey and still have a long road ahead. I want to be prepared. Take care beautiful strong warriors!!! I will keep you posted
Buddy65
86 Posts

I started chemo in Aug 20 and it lasted until February 2021. My oncologist wanted me to stop December 2020 after my scans came back showing tumours were gone but I insisted on one more cycle just to make sure.

I have stage 4 inflammatory breast cancer her2 positive E/P negative. I had weekly taxol and herceptin/perjata every 3 weeks. I never felt sick during my treatment. It was nothing like I thought it would be. I always brought food with me to nibble on and lots to drink. I lost all of my hair after the second cycle but slowly it is growing back. My arms were very itchy, I had acid reflux daily and found maximum strength pepcid AC tablets were life savers to me. My toenails came off but my fingernail are fine.

As of my latest scans a couple of weeks ago I am still cancer free so it is worth it. I would have put up with much more to get these results. Chemo works for many people. I hope you have the same results.

Max2014
5 Posts

Hi @ABBYB!

I was diagnosed with triple + stage 2a or 2b not sure as oncologist would not reconfirm staging of breast cancer in May 2021 with clear margins and clear lymph nodes. I am going through the same treatment docetaxel/carboplatin/trastuzumab. Tomorrow will be my 5th cycle of the 6 cycles I have.

The stories and suggestions of others here are so valuable in managing side effects of the treatment such as keeping a journal/logbook of how you feel, emotionally, your mental state, energy level, what you eat, your diet, your sleeping time/hours, time you take medications ( I had to log it to manage nausea & pain medication Tylenol). As the treatment goes on, there were times I had chemo fog brain, my brother best described it to being drunk cause I couldn't think straight enough to convey what I meant to say to my family, usually this was during the days after chemo.

A friend who is also battling cancer said our body is like a fine individual machine that needs a little tweaking every now & then from the side effects of the treatment. Every round/cycle side effects can be different.

I was advised for Dental hygiene NOT to brush my tongue or use those tongue scrapers to avoid getting canker sores or ulcers. I cut sterile gauze to wipe my tongue & gums after brushing my teeth after every meal ( rinsing the gauze with cool tap water to wipe tongue and gums and repeat again till it felt clean) and then rinse with the saline solution the BC Cancer suggested, so far I have been lucky.

I wonder though, are IVAD ports then normal for all chemo treatments? as I had one implanted. It had to be removed due to local infection & another one implanted on the opposite side of my chest.

I like to think every chemo round/cycle is battle time! As you said, 1 down 5 to go! You can do this! I wish you well & send good vibes!

Max2014





ABBYB
24 Posts
Thanks Max2014‍ I'm feeling better today. The past 2 days felt like I was run over by a train. But I'm hopeful today is different. Now that experienced the aching and headaches, what do you take to manage it? I was never one to take anything, I just suffer with a headache. But this is different, I guess I will have to ask my oncologist.
take care, I know we are all fighting our own battles right now. But we all have the same goals,🙌
JustJan
932 Posts

@ABBYB were you given a number to call to speak to a nurse if you were having issues? If so, they may be able to suggest something for your headache. I hope it subsides soon.

#Breastcancer #sideeffects

ABBYB
24 Posts

Thanks @JustJan it comes & goes. I have determined that my achiness is also due to the grastofil injections. 2 more days & I can see if it's the case. Yes I have a nurse I can call if need be. Hope we all have a nice weekend

Max2014
5 Posts

Its good to hear youre feeling better @ABBYB.

For me, The BC Cancer Centre provided documents of my treatment plan showing the meds, possible side effects & management, the BC Cancer Nurses can go over them with you even over the phone, they have been so patient to explain things to me.

Its best to ask your oncologist how to manage it but as I wait for an answer or a call back, I'll usually try the cancer nurses line cause they can guide you and redirect you in case.

Yes, I have leg pain for the first few days of taking gastrofil but was managed with Tylenol. Let your oncologist know about the side effects you have so they can look into making it work with your plan as we all respond differently.

Hydration, rest, sleep, nutrition & a calm balanced state of mind (easier said than done even for me) is important.

Sending good vibes!

Max2014

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