Lab results

Hi Looby

soory to hear about your diagnosis, I was stage 3A, grade 2, and did 25 radio with two lots of Cisplatin, followed by 4 lots of Paclitaxel/carboplatin.

Re peripheral neuropathy, I didn’t use anything/gloves, but when I started to experience numbness in tips of fingers and thumbs, they reduced my Paclitaxel to 80% for last two lots. Re the cannulas, for two of my sessions they put the cannula in my arm rather than back of hand, so maybe worth asking about this? I’m 3 months post end of treatment and the neuropathy is getting slowly better.

I had very few side effects from the Cisplatin which was a low dose. I did get some ringing in ears, and also had this with the Carboplatin but this for me tended to resolve before next infusion.

Re the radiotherapy have they given you any advice re diet during this? Effectively I ended up eating very little fibre, whilst undergoing this, but you also need to keep calorie intake up, so had plenty of cakes, biscuits, ice-cream in house. And was then told to eat more cake.

re the Paclitaxel/carboplatin, I found lemon sweets really useful for getting rid of yucky taste in month ( thanks Jane for this advice), and was always good when I realised I hadn’t eaten any on a particular day, which was around day 10 post infusion. Also, I was using the anti sickness tablets longer than the first few days during first cycle, and after speaking to hospital realised these could have been giving me stomach issues. So rounds 2-4 I only used them first 3 days and felt a lot better.  I don’t sleep well at the best of times, so I also got prescribed sleeping tablets to take for first few nights, to try to combat the steroids they give you.

Finally, it can all feel so overwhelming, so try to break things down, and just focus on what needs to be done now. I didn’t want to talk about the Paclitaxel/carboplatin until I had got the radio out of the way.

wishing you all the best, and remember we are here.

Hi Looby

I won't have radiotherapy until I've finished chemotherapy, paclitaxel and carbonation. I was/am particularly worried about peripheral neuropathy. Unfortunately my oncologist confirmed there is no prevention for it. She said once you noticed any numbness you need to mention to nurses/doctors. It's nearly the end of my first chemo as for peripheral neuropathy concern I had leg throbbing and discomfort on legs come and go.

During the treatment I drank a lot of water, went to the toilet few times, moved my toes from time to time. When I am at home I drink plenty of liquid, do stretching exercise and go walking. 

I hope this helps.

Hi Looby

I am sorry to hear that your post op results were not as expected. 

I had chemotherapy and external beam radiotherapy in 2022.

My consultant said that unfortunately neuropathy can happen with chemo and that there is not much that you can do to prevent it. It is a know side effect from the treatment However I heard of people (mainly in the USA) using ice gloves and socks to help. I do not know whether this works as I have no experience of it. I did however do scalp cooling and the idea of that is to try to prevent the chemo drugs reaching the hair follicles. So it would be worth asking about. 

My neuropathy started from the first chemo as a sort of numbness and tingling. I had pain at times -a sort of crampy feeling. It started in fingers and toes. It is important to tell your oncologist at the first sign of any symptoms as they may want to reduce the dosage to try to prevent any further damage. My paclitaxel was reduced to 80% after the first chemo and for the final one it was reduced to 50%. I was naturally concerned that this would reduce how effective it would be however I was told that for carboplatin and paclitaxel - the carboplatin does the hard work and the paclitaxel was like the icing on the cake. 

For some people the neuropathy can settle after chemo and then go away. 

With other side effects I would advise wait and see how the chemo effects you and keep a note in your book that they give you. I found the side effects followed a similar pattern with each cycle.

For nausea I found it better to take the anti sickness medication 30 minutes before meals and regularly- so that the nausea did not build up. My CNS said it is better to do this than wait for the sickness to kick in and then it can take longer to get under control. Ginger biscuits helped, also small meals. I also ate my bigger meal earlier in the day. 

Most side effects can be managed and when you get any do give your cancer helpline a call- the 24 hour number should be on your sepsis alert card. 

I had pain in my lower back and around my hips and I was given naproxen. 

I had sore dry eyes and was given eye drops that helped. The soreness started around a day before my eye lashes went. It was sort of a dry itchy sensation like with hayfever. 

I did have a sore mouth and was given mouth wash. My taste changed and I found flat lemonade palatable and any lemon flavour refreshing. I sucked lemon sweets and also barley sugars. 

I had a fair amount of fatigue and found it important to rest, particularly in the first week. I always tried to get up and shower and put comfy clothes on and go down stairs, even if it was to lie on the sofa. By the second week the worst would be over. By the third week I felt able to get out and about and see friends etc. 

With the radiotherapy- most of my side effects were tummy related and I had to watch what I ate. I was given medication from pretty much the start to help get the diarrhoea under control. I did not have the cisplatin.

I wish you well with your treatment. It can feel overwhelming when it is all ahead of you and I remember thinking I would never get to the end but once the first few were done it did go better than I thought it would. 

If there is anything you need, please do ask.

Jane

Dear Waidh,

Thank you so much for taking the time to give such a helpful and detailed reply, I’m so grateful. Interesting about the cannula placement, I will definitely ask them and I’m also taking in frozen water bottles to try. I can run my hands and feet over them if necessary. Worth a shot

No, I’ve been given little advice about diet during Radiotherapy but hopefully I’ll find out more today as it’s my first session but I’ve noted your advice. I’m a healthy eater so this may be tricky but we shall see. 

Noted advice re the anti sickness tablets, thank you and I’m pleased this resolved for you. 

Yes, incredibly overwhelming isn’t it, so one day at a time seems a reasonable mantra. 

Thank you again for your advice and support.

Dear Jane, thank you so much for your reply, I do appreciate all the information and advice you have shared and has been noted. 

I have the gloves and socks gel pads and I’ve frozen bottles of water, so we shall see if it helps with peripheral neuropathy. 

I’m hoping the sickness and diarrhoea can be controlled with the meds but my other concern is the effect of radiation on my bladder. I already suffer a bit in that area so will mention it to them when I start treatment today. 

Thank you again for your support

Dear Puffin, 

Thank you so much for your reply. Yes it really does seem a tricky side effect to prevent happening. I’ll take in the cold therapy stuff I have and give it a go and report any side effects immediately. 

I’m a very active person so numb feet are a concern but we shall see how it all pans out. I will keep my fluid intake up. 

Thank you so much for your support

That's the best plan- mention it to the radiotherapists. I did have some bladder irritation- a bit like if you are going to get a UTI- it helped to drink lots. I still have a bit of irritation occasionally post treatment and go a bit more often than I used to. 

Thanks Jane, I did mention it to them and they said to report any side effects so I’ll see how it goes. Yes I am expecting some irritation just hope it’s not too bad. 
Will definitely up my fluid intake and monitor any discomfort different to usual. 
Thanks again.

I  also avoided drinks with caffeine in during treatment on advice of radiotherapy staff

Oh gosh Jane, not sure I can forego my morning coffee - do you think avoiding caffeine helped?

It is good advice and makes sense as caffeine can irritate the bladder. Ho hum. 

Thank you