Chemo anxiety

I don't know anything about Chemo but I've read your history and it makes me feel so sad for you. You've been through so much, sending hugs really - and good wishes to stay strong!

Hi Lee

U had carboplatin and paclitaxel chemotherapy in 2022. I can understand that you are feeling anxious and it is very natural. 

I think the thing is that although they tell you all the possible side effects, you are unlikely to experience them all. If you do get side effects then I found that they could mainly be controlled with medication. 

Is there anything in particular that is worrying you?

 Mine was on a 3 week cycle and I had one day in hospital and then the next 20 at home. The first few days I did feel rough and it was a case of resting and going with the flow but by the 2nd week I did start to feel a bit better. By the third week I was out and about more. It wasn't easy at times but it was doable with support from family and friends. 

I sort of understand what your CNS has said and I felt quite well after my surgery and it was the treatment that made me feel unwell. But it was still manageable. 

My main effects were fatigue, some hair loss, tummy effects and some pain in my back. I was given a 24 hour number for the hospital and they were really helpful if I called for support. You will have bloods taken regularly and also a consultant appointment with each cycle. Mine were telephone appointments. 

One thing to be aware of is the risk of infection so I would suggest getting an accurate thermometer and get to know your normal temperature. Any changes up or down or if you feel unwell, give the hospital a call. If you do pick up an infection (I did) then they will want you to go in for antibiotics and to be checked. 

Jane

Hi Lee75.

I started Paclitaxel/Carboplatin last week, and had concerns about side effects before starting. I had Cisplatin with 25 lots of radio, from end of Jan to beginning of March.

My limited experience to date:

I had a reaction to the Paclitaxel as soon as it was administered, but nurses got further drugs into me immediately, and it resolved immediately, and then restarted me an hour later on much slower infusion and gradually built it up to the normal rate. The nurses were prepared for this, as I now know it is fairly common even with pre meds, to happen at first time. 

I was concerned about painful joints/muscles over the weekend, as heard that can happen around days 3/4, and also pins and needles, but so far so good.  I have felt very jaded over the weekend, and yucky even with meds but not feeling so yucky today. I’m not the best at sleeping and the steroids don’t help me there. I stopped them Saturday lunchtime, and had a good nights sleep last night. If I’m honest I think I didn’t sleep that well Friday night as I was expecting painful joints, and if I got a twinge I was thinking “is this the start of it”.  

So far my experience has been better than I thought it would be, and what I was thinking this time last week.

Good luck for the 10th x

Hi Lee75

I've had 4 of 6 carboplatin/paclitaxel so far. My side effects so far have been hair loss, some diarrhoea (although I was still having issues from radiotherapy) and some nausea & indigestion (medication helps with this). 2 days after my first treatment I had some knee/leg pain but I found that simply moving about helped with this.  I've had times of just feeling grotty, lasting from 5 minutes to maybe an hour or so. 

I've avoided my 1 & 3 year old grandchildren when they've been snotty to minimise possible infection and been careful about what I eat (I was given a list of foods to avoid at my first pre-chemo assessment, I assume you will get this list too).

At my first treatment I reacted to the antihistamine so since then this has been administered slowly via a drip since and has helped.

Best of luck with your treatment.

H 

Thanks LolaBear it feels like a long slog tbh. 

Thanks jane2511 ,

Just reading what you've captured has reminded me that I've done this before, and I can do it again. The pain in the bones and having a reaction are the symptoms I'm most concerned about. The hair loss doesn't bother me. Throughout my cisplatin treatment last year, my team were proactive with anti-emetics and steroids. 

I'm type 1 diabetic, so my sugars will be out of control if I have to take steroids though. 

Selfishly, I'm 50 on May day bank holiday. I'm planning to sit in my beach hut with friends and family. But that will be day 5 so am hoping I will be well enough as I've cancelled lots of plans. 

Thanks for the reassurance ️

Thank you so much Waidh  for sharing your experience. Just like you, I can't sleep very well when I take steroids. But knowing that your team was well versed and prepared with your reaction, gives me hope that mine will be too. I remember when I had cisplatin that I didn't get a lot of symptoms, and definitely faired better than some others who were being treated at the same time as me. X

Thanks Sbird ,

I'm so glad that you're finding the treatment manageable. It has really helped to hear about your experience, it makes it feel so much less daunting. I think that my complicated and prolonged recovery from my surgery earlier last month hasn't helped my confidence. 

I wish you all the best for the rest of your treatment and recovery ️

You’re not selfish, it’s my 60th on 12th May, and that will be 5 days after my 3rd lot. Cancelling the plans has been one of the hardest things. So I’ve decided I’m going to be 59 again this year. Do hope you can get to your beach hut x

I had my 60th on 22nd March.  I was able to have afternoon tea at home with the family as I was good and no-one else was ill! 

H