Starting chemo - TCarboH

Everyone reacts differently so it is a difficult question to answer.   My advice would be to take any preventative medication your oncologist prescribes to you whether you think you need it or not.  If you have any unpleasant side effects raise them with your oncologist and they will give you something to help reduce or manage them..

Be aware of the side effects you might get but remember that you won't get all of them and strangely sometimes you may only get it for an hour or two and then it either goes away or your body adjusts...weird!

If you are feeling tired try and take a gentle walk, listen to your body and look after yourself. 

The fear of chemotherapy for me has been worse than the reality,  yes it builds up and I have slowed down but I am 6 cycles in and still going out and meeting friends. 

Good luck x

Thank you so much for your message, I really appreciate it. 

The fear is absolutely a big issue. 

Also lack of support from work is adding to my anxiety  - I've never known such a heartless organisation! I'm having to work as much as possible during treatment. 

I hope your journey is going well and there is light in sight for you xx

You will probably feel better after your first cycle as you will then have a better understanding of the reality.   

There are likely to be some bumps in the road but we cope.  As for work discuss this with your oncologist,  I am sure they will sign you off sick if necessary.

In some ways I was lucky in that I took redundancy 2 months before finding my lump so I haven't had to go through that juggling act.

It is easier to manage the treatment I find in sections and I try not to worry about the whole thing.  So surgery was the first step, chemo,  radiotherapy and then hormone treatment. 

Step 1 done, step 2 1 more to go, starting to think about radiotherapy as hopefully it will start next month.  Sooner it starts the sooner it's finished!

All the best x

Are the side effects the same each time? Do you feel the same each time?

My oncologist wants me off, but I'm hoping that by taking 2wks instead of 3 that my work will pay me as normal. I'm on a fixed term contract and if they could get rid of me, they would!

Can't afford to be on SSP. Escaped a controlling relationship last Oct and having to move again as landlord selling. 

Did you experience hair loss? I'm going to try the cold cap. 

Sorry for all the questions and I really appreciate your responses!

Sending healing hugs x

OMG you poor thing, that's a lot to be facing all at once,  you are amazing!

I can only speak about my own experiences.  I had 4 cycles of EC first and the side effects were pretty consistent.   The first night after the treatment was the worst,  nausea,  hot sweats, indigestion and insomnia.  For the second cycle I was prescribed Lorazepam to get me through that.  I was also given omeprazole for the heartburn to take as needed.  About 3 days after treatment things settled down and became more manageable.   After the second cycle I developed chemo brain,  couldn't think straight,  remember things and lost some coordination.   Made a right mess putting jam and cream on a scone one day.  Appetite and taste went but I knew I needed to eat to keep my energy up, never knew what I wanted as most things taste wrong but it would improve towards the end of the cycle. 

I have just had my 3rd cycle of Paclitaxel,  side effects not nearly as bad.  Much clearer headed, so haven't been saying quite as much rubbish.  Worst thing was an allergic reaction to the chemo as soon as it hit my system meaning it had to be stopped for half an hour and then restarted slowly,  made the treatment day over 8 hours,  when this happened for the third time the treatment was stopped and I was changed to Nab-pacitaxel, which I had yesterday.   Had some diarrhoea with the Paclitaxel normally in the first 24 hours after treatment and definitely slowing down. Slept a lot after treatment but that was due to all the antihistamine for the allergy

Keeping a diary of how you feel can help you manage the side effects and plan your days.  Also useful to discuss with your oncologist for preventative medication. . 

It hasn't been pdleasant but it also hasn't been as bad as I feared.  I have gone out most days and had a walk, sometimes I have needed to make sure that I have stayed close to public transport so that I can hop on a bus when necessary,  or with plenty of seats, toilets etc.

I used the cold cap initially,  was a useful distraction during the EC when I got waves of sensations during the infusion (nausea, sneezing,  taste, flushes and other weirdness) Was advised to give it up after the allergy as 8+ hours is challenging and I had already lost 50% of my hair.  It is currently failing out and growing at the same time.  Eyebrows and eyelashes have started to go now too.

1 more chemo and then 15 radio to go!!

Sorry for the long reply,  I hope it helps,  be selfish,  put your health first and try not to worry about things you can't change as it is a waste of energy and only makes you suffer.

You've got this x

Hi LisaM68,

You poor thing sounds like you have a lot on your plate and now this! I was on exactly the same treatment and finished chemo in December. I didn't work through chemo and for me that was the right choice as i have 3 children and wanted the time i felt good to put my energy into them, saying that I only felt really bad on days 3-6 and then progressively felt better. I could have worked most rounds mid way through week 2 and week 3 (not in an office everyday) with a few exceptions!! Most rounds I had similar side effects being nausea, tiredness, aching joints, occasional diarrhea and i also felt quite low in myself but like Harvestmoon said take preventative medication don't wait to feel sick before taking the meds.

I did also cold cap and kept most of my hair - it thinned and it did seem like a lot kept falling out but it wasn't noticeable. I only washed it once a week and kept it in a plait to minimise brushing etc....

Let me know if you have any more questions. Once you get started it's not nearly as bad as the waiting....

Big hugs. X

Thank you so much, this really helps!

What a journey you're having and you sound so upbeat - I love it! Go you!

Im less worried about the hair loss now, I've had it cut shorter ready. It's the other side effects that worry me, but will just have to deal with it and my team are incredibly supportive and will take your advice re preventative meds.

Hope you put the jam and cream on in the right order!! And have had more since then.

Chemo brain on top of menopause brain is going to be fun!!

Xx

Hi! Thank you so much for messaging.

Wow, 3 children to care for while going through all this! That must have been really hard. I hope they're doing OK, it's a scary time. Mine are 25 and 23 and its hard enough for them! My daughter, 23, and her boyfriend live with me and she's with me every step of the way. My son lives a long way away, but is there for me too as much as possible. 

Your advice and story really helps, thank you.

Big hugs xx

Hi Lisa. I started my first taxol and carboplatin on Monday. I was very nervous and you might see a post on here from me the day before I was due to go. 
I am used the cold cap, was horrendous at first I wondered whether to throw the towel in but it did get better. I had taxol go on first for an hour then they give you a saline (I think) flush then put the carboplatin in for half an hour. I had cold cap for half an hour before and then stayed on the cold cap 90 minutes after. I went to the toilet twice and it had to be unplugged so I panicked it would have a bad effect on my hair but apparently it’s ok to be off for 8 minutes. 
When the chemo first went in I felt dizzy but after that I was fine and was chatting to two other people on the ward which was nice. I was offered hot drinks and at lunchtime sandwiches came round. 
I felt fine after, went home had tea, didn’t eat all of it but did my usual chores around the house and went to bed same time. On Tuesday I had a little lie in then did some work from home and I went to my reformer Pilates class as normal. Went to bed at normal time and felt ok. What I did experience on Tuesday was constipation which wasn’t pleasant but I have this morning taken lactulose and it sorted me out straightaway so I feel much better. 
I was given nausea tablets to take for 2 days and tablets for stomach acid or something to take for 2 days also. Today being the last day to take those. I have also been given injections to take for 3 days to boost white blood cells. They also gave me some mouth wash in case I get a sore mouth but I am taking this is a preventative before I get it as that’s what one of the patients recommended. 
Obviously I’m only 2 days after first session and it could get worse but wanted to put you a little at ease as I felt exactly the same as you on Sunday and it’s so horrible going into the unknown. 

Hi, thank you so much for sharing your experience so far - it really gives me hope!

It seems best to take all the preventative meds and not wait for symptoms, so that's really helpful to know. 

Bit worried about the upset tum as have diverticulitis disease anyway, but oncologist knows and hopefully we can control this - but I'm used to going lots and may even go the other way!

I just want the first one over (now confirmed as 14/5 so I can get house move out the way!).

I hope you remain as well as you are. You're doing amazingly well! Xx