Following surgery 4 weeks ago, histology report has come back that the cancer didn’t reach the lymph nodes …however team have suggested carboplatin and paclitaxol chemotherapy. Has anyone got any tips of how to deal with the side effects please?
Hello again,
Am glad that the cancer didn't reach the lymph nodes. Chemo and/or radiotherapy is usually offered to anyone with a grade 3 cancer. Am not sure what your final stage/grade is but I remember you saying it was grade 3.
Grade 3 put simply means that the cancer cells look very different from normal cells and have the potential, in some people to spread more quickly. Although the cancer may have all been removed during the surgery, they sometimes suggest the follow up treatment in case any tiny cells, too small to be picked up on a scan, have escaped. It's a sort of mop up to do everything to prevent the cancer coming back.
The chemo being offered is to try to mop up any stray cells that may have escaped and gone some where else in the body. Sometimes radiotherapy is used to try to prevent a recurrence in the local area.
I had paclitaxel and carboplatin chemo last year. It was followed by radiotherapy.
My chemo was 4 cycles. Each cycle was 21 days. So day 1 I would be in hospital for the day. And then there would be 20 days to recover at home. Then it was back to day 1- hospital again.
I think with chemo it is best to try to keep an open mind. Everyone is different and can react differently. It was not easy at times but it was doable. Where there are side effects, they can usually offer you medication to help. You have plenty of blood tests and are monitored closely. There is usually a consultant review each cycle. I also had a 24 hour phone line to call with issues.
When you have your appointment to discuss the chemo they will talk you through the side effects but it is important to remember that they have to tell you every possible side effect to gain your consent, however it does not mean you will necessarily get them all.
I had a lot of fatigue- chemo is tiring. I had tummy effects that I had medication for. Picking up an infection can be serious so it is something to be aware of. I would buy an accurate thermometer to keep an eye on your temperature and if it goes up, then call your hospital.
I was worried about the hair loss, as many people are but was offered scalp cooling. It helped me keep most of my hair, although there was thinning all over. With carboplatin- there is thinning hair but with paclitaxel, most people will lose it all. I had my first shed from around 14 days after my first chemo. It was hard. You also are likely to lose body hair.
I think the best thing is to go with the flow and listen to what your body is telling you. I found the first few days of each cycle were the worst and then I did pick up after that. They give you a booklet that you write all your medication/symptoms in each day. I found it helpful at reviews- because it is easy to forget. I also found there was a general pattern that repeated each cycle. I found the effects- particularly fatigue accumulated with each cycle. However I did pick up an infection and had to go to hospital. I also became anaemic and needed a blood transfusion. I became neutropenic a couple of times (at risk from infection) so tended to avoid going out too much to anywhere too busy.
On the practical side, comfy clothes for lounging around. Eat little and often, drink plenty. You may find your taste buds alter. And if any worries or unusual symptoms- just call the helpline- you will speak to one of the CNS who will have heard it before and will be able to offer support and arrange medication if necessary.
If there is anything specific that worries you, please do ask. I was really scared before hand but my actual experience did not match my fears. I was well looked after and supported and I am sure you will be too.
Good Luck
Jane
They won't normally start chemo until 6 weeks post surgery and they will check your wounds and ask questions to make sure you are healed. They will also do bloods etc. With chemo- it normally needs to be given in a cycle and the body needs time to recover and build up strength.
I opted for the cooling cap and if your main worry is about your hair, then do ask about it. It is uncomfortable for about 20 minutes but you can take paracetamol. I kept most of my hair- it just thinned.
On Tuesday I would imagine it will be your chemo consents appointment. They will talk to you about how you are recovering. Talk about the chemo to make sure you understand why you need it and get your consent. They will talk you through the potential side effects and I came away with several sheets of paper and phone numbers etc. Most people seem to have 4 or 6 cycles of carboplatin/paclitaxel.
For me- I would arrive at the hospital around 8 am and have bloods taken. I would then wait a bit for the results and go to the chemo unit (it was sectioned into bays with recliner chairs). There they would put the cooling cap on and then run the premeds through. (steroid and anti histamine- to help prevent reactions) I opted for a canula in the back of my hand each time as preferred it all to be taken out before I went home. Some people have a port.
After saline was run through- it was the paclitaxel- that one is done over 3 hours. Then it was another saline flush. Then the carboplatin was done over 1 hour. By then it would be about 330 and the nurses would talk to me about meds, my booklet, side effects etc and generally had a chat about how things were going. The cap would be taken off about 5pm and then I was free to go. Volunteers bought cups of tea round throughout the day. And sandwiches and yoghurts etc at lunchtime. It was a calm and positive atmosphere nothing like I had feared.
I felt quite tired by the end of the day and glad to get home. I would then have a couple of quiet days at home, snoozing on and off, watching tv etc- just going with the flow. By the end of the first week I felt able to potter about at home. During the second week I could do more. The third week I felt more myself.
I wasn't allowed to work during chemo due to infection risk but to be honest wouldn't have felt well enough and its enough just to manage it.
All in all, it wasn't as bad as I thought it would be. They review the treatment each cycle and can adjust it if needed.
If there is anything you want to ask, please do so.
Jane
