Struggling through Chemo

Rona

Hi all,
My nurse has just introduced me to this group.
I’m hoping to connect and share my story and hopefully somehow feel better.
After being diagnosed and a short time later having a mastectomy and all lymph nodes removed, chemo started just before Christmas and I am struggling with it!
Ive got another 2 months of chemo before 5 weeks of Radiation…… would love to hear other stories.
I have a fantastic support group of family, friends and colleagues but they just can’t possibly understand what I’m going through.

Looking forward to connecting 😊

Katie46

Hello Rona, I've done 3 of 4 AC then on to 12 rounds of paclitaxel, then radiation. I'm lucky too to have a good support group around me, and my side effects have been relatively mild, but the fatigue floors me the first week after treatment. I flop about for about a week, before getting a 'good' week where I feel almost normal, catch up with a few people for hot chocolate (coffee now tastes musty) venture into the supermarket, just to get out of the house. Then into the next round. I'm hoping I might have a bit more energy with the paclitaxel, and maybe work from home a few days a week. Some days it feel like a very long road, but I keep telling myself it's for all for the greater good, and look forward to the beginning of June when the chemo side of things should be done. Katie 

Melchamb

Hi, 

First time replying or posting anything here! 

I feel like I could have written your post! I am however  behind you in timeline. Had a mastectomy, node clearance and recon on 14 December and started chemo last week (fortnightly AC x4, then weekly for 12 weeks). 

I just wanted to reach out and say hi and you are not alone.

I coped amazingly with surgery but fear chemo will be a bumpy ride (it already has been). I am also struggling emotionally as well. Before all this happened, I had a trip to Hawaii booked and would have been leaving Sunday. Wow how life has changed. 

I also get having a great support system that can't possibly understand how this all feels,. I can't imagine doing all this without them, but they get to have a break from my hell hole while I have to live with it everyday. I feel guilt that I make them worry too. 

Anyway, I know I have not helped, but what I take comfort from is that many sisters have been in our shoes before and have made it through. I refuse to let this be anything more than a chapter in my otherwise fantastic life book. 

GorgyS

Today is my fifth day of the first AC session of the total four. Not bad but feeling very tired. As you all, we just want to go through this journey with all ups and downs like all the amazing women in this network. I hope too that the paclitaxel will be easier on my body. What really helps me is the rest, eating small meals frequently and drinking water.  I also do not want my family to worry, so I am really trying to listen to my body and try to recover for the next chemo infusion. Just wondering if any of you are on Pegfilgrastim PEG) injection, and if so , did you have any side effects? I have not although I was told to expect chills and joint pain. 

Katie46

Hi Gorgys, yes I have the injection 24 hours after. No side effects for me so far and I've had 3. 

GorgyS

Thank you Katie46. Good to hear and know that you did not have any side effects. 

Rona

Ohhh, thank you for replying and reminding me I’m not alone.
Melchamb……. you have helped. I too feel the guilt of not being “mum” right now! 

It is a hell hole and yes, I’m sure my kids are happy to go to school/work to escape into some sort of normality!
GorgyS, I’ve had 4 Pegfilgrastim injections and apart from a few shooting pains in my back and sore heals (like I’m walking on nails) just for a few days (day 8), I have had none of the side effects that are talked about. Try not to worry about it, honestly I was scared too. 
I feel ok from Chemo till day 5…… then I have constant nausea, bad taste in my mouth and general feeling of not being well. 

I’m scared for the next drug Paclitaxel, my first infusion is next week, I’m scared about the tingling sensation it can cause. It’s a 4 hour infusion too….!
Hawaii will be waiting for you Melchamb….. very sad how we are affected.
My son turned 18 on Saturday, was too sick to even go out for dinner 😢. 

Believe it or not, I am a very positive person and I’m grateful for having a wonderful Oncology Team, it’s just not something that was on my Bucket List. 

I’m so happy my Nurse introduced me to the group.
You’ve all made me feel better already 😊

Mareealso

Hi Rona, Lining up for my 3rd round of chemo this week. Try to develop a routine which includes absolutely crashing for a few days (which could be within 48 hrs of chemo or a couple of days later) and then slowly try to do a little more. My care team have given me all sorts of medication and I have been told to take it to prevent side effects rather than try to treat them after they emerge so I have followed that advice which, I think has helped. I keep  a  diary for side effect symptoms and for medication I have taken which helps the team to pin point when and what type of medication I should be taking and that has fine tuned"  my treatment. Hopefully your team are just as supportive! Remember to speak up if you are suffering and request something to help....!

Katie46

My paperwork says 1.5 hours for paclitaxel, and the nurse did say it was quicker. Maybe 4 hours is with the premed anti nausea stuff as well. 

GorgyS

the same for me. 1.5 hrs for paclitaxel and the nurse said it will be quicker. My firsts AC sessions lasted 3.5 hrs for preparation, but infusion was only for one hour. As I will be taking medication for nausea at home before chemo, , I assume I will stay only 1 hour for second infusion. 

Rona

I’m having 4 cycles of Paclitaxel…..dose dense rather than 8 (not my choice). 

I have my Oncologist appointment on Thursday and am going to speak with her regarding having it weekly instead as I’m so afraid.

Katie46

Hi Rona, it will be good to chat with your oncologist. I'm sure they will monitor you closely, and can tweak as necessary. I think we all have the same fears, particularly as they can't really tell how each of us will react to the treatment, so there is always that unknown element. 

GorgyS

I have started searching  chemo side effects  on this network to find the previous responses. it makes easier as I can not always sit in front of computer and chat although I wish I could. Today, very tired, constipated, cold feet, palpitations. All is on the list to discuss with the oncologist tomorrow. Doing everything to keep it under control. 

jennyss

Dear @Rona and all replying,
From someone six years down the track

from jennyss in Western NSW

Rona

Hey GorgyS, my symptoms are very much the same.
Im actually “ok” for the first 3 days after chemo then I start feeling bad. 

I find day 5-10 the worst with the symptoms you describe along with headaches, bad taste, sore feet, peeling hands, cravings for food I wouldn’t usually eat and yes, those heart palpitations aren’t fun! 

Are you having fortnightly infusions?
I must say my second cycle hit me the worst, probably just trying to fight it! 

Definitely talk to the professionals about your symptoms and keep taking the meds and of course reach out on here.
 I’m day 8 of my 4 th cycle and I still feel like crap with a blinding headache to go with it but……. tomorrow will be one day closer to the end 😊

Rona

Oh, another side affect I “had” was severe heartburn. This also started about a week after my first infusion. I chomped my way through pkts of quickeze till I mentioned it to the Oncologist and she put me on Pantoprazole. I take one every day and it makes a huge difference! Only on the odd occasion do I still need a quickeze.