Tips for chemo

  • 7 replies
  • 11 subscribers
  • 954 views

Hi all I'm just about to start a mix of chemo and radiotherapy for vulva cancer. Chemo will be weekly. Radiotherapy daily for 5 weeks.

I'm feeling pretty scared so would be very grateful for any tips or advice to get through treatment.

Many thanks

Sue

  • Hello suze99

    I am sorry to see that you are starting treatment for vulva cancer and that you are feeling scared about this. It is natural to be worried in these circumstances and to want to know what will happen and to share experiences with others who have been through similar.

    I had chemotherapy and radiotherapy for womb cancer last year. If it would help I can tell you a bit about my chemo experience.

    My chemotherapy was carboplatin and paclitaxel. I had 4 cycles of 21 days. This meant on day 1 I was at the hospital, then I had the following 20 days at home and then the cycle started again. There are however different chemotherapy drugs and different cycles and it seems these depend on the types of cancer and other different factors. I did find the on hospital days when I spoke to other people there were lots of similar experiences. 

    The first thing that happened was a meeting with an oncologist who was a specialist in chemotherapy. I was very nervous before the appointment so took a friend with me. The oncologist had a nurse specialist with her who I had previously met. 

    The oncologist first checked my understanding of my cancer and talked about stages and grades and then went through the reasons for chemo and the side effects of each drug in detail. I was then examined quickly to check my wounds from surgery. It was explained that the chemo would start in 3 weeks time to make me 12 weeks post op.

    On the first chemo day I was taken to a day unit. It had chairs in bays. I was surprised how calm and bright it was. The nurses were friendly and caring. I was weighed and height taken as this is used to work out the doses. This happened each time. I had bloods taken by GP the week before and then on the am before chemo started.

    I used the cooling cap, successfully to help minimise hair loss. There was still shedding/thinning but I had no bald patches. I lost eyebrows and eyelashes and all the hair on my body.

    I was given a cup of tea and my obs were taken. Temp, blood pressure etc. The cooling cap was set up. I can tell you a bit about it if needed. Just ask.

    Once it was on I had to wait 30 mins for the temperature to cool. While this was happening I had a cannula put in the back of my hand. I was given oral tablets- I think anti nausea and possibly piriton?I then had a saline flush, followed by a steroid infusion. The first drug took around 3 hours to go through. The second one took around an hour. While it was going in I felt some discomfort along the vein in my arm but was given a heating pad. I also felt a little bit sick. I slept on and off during it all. I arrived at the hospital around 8 for the bloods and left around 530.

    I was given a book to write side effects in and details of the treatments and when to take the drugs I was sent home with. I was also given a sepsis alert card and a phone number for 24 hour contact with the hospital.

    Side effects for me were nausea, tiredness, aching, hair loss, sore mouth and some numbness and tingling in hands and feet. At each cycle I had a review with the oncologist who went through my side effects and offered medication and advice. 

    I found the first few days of each cycle the worst and then felt better towards the end. On thing to watch out for is a lower immunity and you can pick up things easily. I had one emergency admission due to the sepsis alert and was admitted and given an antibiotic infusion and full check up within an hour of calling the helpline. It might be helpful to buy an accurate thermometer to have at home as you can become quite poorly quite quickly. 

    With my chemo I found the effects accumulated with each cycle but not everyone is like this. I did find I had some problems with my blood and had to have magnesium supplements and a blood transfusion due to haemoglobin dropping too low but they do really monitor you. My oncologist adjusted my dose of one of the drugs due to side effects.

    On hospital days I wore comfy clothes, warm socks and took a blanket from home. I took magazines, snacks etc but in reality slept through a lot of it and couldn't really focus on a lot. During the day volunteers came round with cups of tea and sandwiches which were appreciated. If you need the loo during treatment you are able to get up a walk around as you have a drip stand. 

    I hope this helps a little. If there is anything else that would help you please do ask.

    Good luck with your treatment. The first session feels the worst but after that it is better as you know what is going to happen. 

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Jane

    Thank you so much for your reply. It really helps hearing from someone who has gone through it. Lots of information and advice. Makes it seem less daunting. 

    Best wishes

    Sue x

  • Thank you so much for this. My mum has just been diagnosed and while we thoight she wasn't going to get the chance, it now looks like she can have chemo. It is good to understand the process and what to expect as I'd like to go with her and take things which will be useful. Thank you for sharing so openly

  • I hope that mum's chemo goes well and if there is anything else you need please do ask

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Just read this after seeing the oncologist today and will start chemo in 3 weeks. Thanks for writing in such detail. It is helpful to know more or less  what to expect during this scary time. 3 weeks seems a long time and it  is hard not to think that I'll get worse as a result of that wait. 

    Thanks Jane 

  • Thank you. 

    Something I am wondering is if there's anyone I can speak to. I've realised I'm not coping with it all so well and have looked at counselling. 

  • Hi Rhiannon, 

    I am sorry that you are not coping so well- it is such a stressful thing to go through.

    I recommend that you give the Support Line a call (the number is below) and just have a chat- they are really lovely on there and will understand. They will also be able to tell you if there is any groups etc in your area that you can have support from. 

    There is also a forum on here that may help- it's specifically for friends and families. I will pop a link here for you in case you think it may help.

    (+) Family and friends forum - Macmillan Online Community

    but do please give the support line a call

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm