Just an update. Full hysterectomy in August, thought they had got it all but since found new growth in groin and lung nodules. I had very rare tumour type so having treatment at a Regional Cancer Centre in Leeds. Was going to have a 5 day treatment plan with Cisplatin etc but it was found I had a few small cysts on my kidneys, nothing to do with cancer, probably life long so it was decided to put me on Carboplatin as it is kinder to the kidneys. Also on Etoposide and Bleomycin. This is a 3 day plan with a further shot of Bleomycin on the 7th and 14th day then 7 days later back on the 3 days. 4 rounds in all. The Consultant Oncologist I saw said this treatment works well with my type of cancer but he is worried about the fact I am nearly 68 and how well I will tolerate the Chemo. In my favour is that I have kept myself fit and well. He says he will get me to remission but doesn't know how long that will last and I may need further treatment. One step at a time I suppose. I'm on day 4 and feeling like I just want to fall asleep all the time, will this be how I will feel pretty much all the way through? Advised to take anti sickness tablets and not wait until I feel sick which makes sense. From what I'm told my hair will start to fall out next cycle and I have some caps and a wig lined up. Seen quite a few people now wearing masks again so wondering if I go out if I should do the same. My daughter has two young children and is not wanting them to be around me when they have the various coughs and colds kids get. She is very protective of me. Husband being amazing as we live hour and half from Cancer Centre we spent 3 nights in the hospital hotel, just a twin room with bathroom, kettle and mini fridge. Given vouchers to use in the hospital restaurant breakfast and lunch. Once chemo is finished for the day we can go out of the hospital or a meal if we want to. Very well organised. Consultant a bit confused as to what exactly is going on with me as he thinks it my be the initial cancer in my womb was the rare one but the other stuff is something different. See him again on Wednesday when I have bloods taken then the other shot of Bleomycin. Pain is lessening already. So far so good.
Hello Jkg
Am glad that your chemo is started and it is going so far so good. I had chemo last year and had carboplatin but I had paclitaxel as my other drug so didn't have the other two you are having on your regime. It is good that your consultant said that the treatment usually works well and should get you into remission, and also that you have kept yourself fit and well.
I would agree with the advice about taking the sickness medication regularly and not to wait until the nausea takes a hold. I found it worked best for me, especially in the first part of my chemo cycle. It was far better to prevent the nausea than deal with it once it has set in. I was given 2 different ones- ondansetron and domperidone. The domperidone worked well as long as I took the ondansetron as directed am and pm. If at any point they do not work as well as needed then do speak to your team as there are other meds they can give you.
I started to shed hair about 14 days after my first cycle of chemo. A few days before my scalp felt uncomfortable/itchy and then the shed would happen a couple of days later. I did use the cooling cap- but still had hair loss. Body hair went between the first and second cycles. It is good to have a cap and wig lined up. I also had some pretty scarves on standby- although in the end did not use them a lot.
I think wearing a mask is a good idea. Your immunity will be lower whilst having treatment so to me it was sensible to try to avoid unnecessary risks. I tended to avoid bigger groups of people and if I met up with friends and family I tried to do it in the open air. I still did manage to pick up an infection but the important thing is to contact your hospital asap if you do have any signs of infection, even if you are not sure, as they will get you in quickly for anti biotics. This happened once during my treatment and I phoned the helpline and was admitted directly to a ward and given full tests and treatment. I can understand your daughters worries about the young children but perhaps there may be an opportunity to meet outside/at the park on a day when you are feeling well. Perhaps speak with your CNS.
Your husband sounds like he is being a great support and the hospital hotel sounds like it is helping and being able to leave the hospital for a meal/change of scene must help.
You say you are on day4 and feel like sleeping a lot. That is how I felt for around the first week on each cycle. I think the best thing is to listen to your body and if it is telling you to rest then do that. I am not sure what regime of steroids that you are on but they can also be adjusted if needed. I was put on a tapering dose from my second cycle and I didn't feel as tired. One other thing I found was it was useful to fill in the book they give you, with how you are feeling each day as I found that the following cycles tended to follow the same pattern as my first cycle. It is also helpful when they do your review. I did find with my chemo that it did build up from cycle to cycle but the main effect was the tiredness and I had more of that on the last couple of cycles to the first ones.
I wish you well with the rest of your treatment and if there is anything you need please do ask.
Jane
