Carboplatin/Gemcitabine

[Mumsie13]

Hi lovely ladies. I have not left a post regarding myself for some time but I have just a simple question really. A bit of pre-amble: Last week I started day one of carbo/gem for (I hesitate to to say 2nd recurrence as 1st recurrence was stable with CA125 going down to 45 for about eight months but not gone) now unstable metastatic OC is back again. I was surprised that chemo brain kicked in on day two, quite early. I have all the usual things, have been disoriented and lethargic and unable to focus on tasks very well - walking about in a brain fog which I'm sure a lot of you ladies will recognise. My husband said I had also started speaking very slowly, for me😆, which has never happened before or has not been that noticeable. He said it sounds as though I am in a trance most of the time. Physically I'm ok but get tired very quickly and then find it difficult to sleep at night. I also got a touch of what felt like sciatica the evening of day one - no idea how that came about but it seems to be clearing now - may be something and nothing. Previously I did not start feeling like this until around day four and it would typically only last around three or fours days max. I start gemcitabine on its own (day eight) tomorrow, Tuesday, and symptoms do seem to be abating somewhat but I am wondering if I am going to have another five or six days of chemo brain etc or weather any ladies found the gemcitabine by itself better to tolerate. What did you ladies who have had or are on gemcitabine experience regarding symptoms? I have only had carbo/taxol and carbo/caelyx before so am a little at sea with this. Any comments or experiences will be appreciated. I know we are all different but at least I'll know I'm not alone in this. NB It did occur to me that as this is third time of taking carboplatin I might be getting a mild/weird reaction, which I understand can happen. I have to say that the fact that I can concentrate on writing this post at all shows I am probably coming out of it - let's hope so, I hate feeling so useless and lazy. Love and hugs to all. x Jackie.

[Tesla_7US]

Chemo brain is real. It's killing billions of our brain cells. I'm on my 4th line of chemo in 6 years. Each time side effects appear more quickly and get more intense with each infusion. Chemo shortens our telomeres and ages us prematurely. I've had some of the side effects you've described. You should definitely tell your doctor. You never know if or when these symptoms are more serious than you realize. Get your symptoms/side effects documented and into your medical record. A gentle hug to you. 💗💗💗💗💗💗💗💗💗💗💗💗💗💗💗

[Mumsie13 in reply to Tesla_7US]

Thanks for your reply and greetings from the UK. I am, indeed, aware of the gravity of the side effects of chemotherapy and am happy to assure you that I and my darling of a consultant oncologist are well on top of reporting and treating new and continuing issues with any of the drugs I am using but thank you so much for your concern. I am feeling so much better this morning after single dose of Gemzar than I did last Wednesday after combined dose, so it looks like Carboplating is the main culprit and any issues will be addressed with my Oncologist next Monday. This really is a very good site which I have been on for some 18 months now and I am so happy when people respond and to know that other people who are in the same boat as me understand exactly what I am going through and are so compassionate and helpful. Lots of gentle🤗🤗🤗🤗 and 😘😘😘 back to you. Take care. Jackie

[Numi]

Hi, I'm a week ahead of you on the same treatment, (started on 17th August) so I've got my first 'week off' today. I've found concentration a bit more difficult than usual, but not too bad. Have found it difficult to get going with things. What I have noticed is fatigue - I fall asleep after lunch most days. I'm not going to worry about it - if I need sleep, I'll sleep. I'm hoping that my body will adjust with the next cycle - that's what happened when I was on chemo the first and second time around. I'm just thankful the side effects aren't more severe. Best of luck with your treatment. x

[Mumsie13 in reply to Numi]

Thanks for your reply. We should compare notes😊. Each time it seems to be a little different but I did notice I was much more tired this time having to rest after completing tasks. I know what you mean about getting going it takes me ages to focus myself I get up potter around after breakfast then feel so brain fogged and lethargic I just want to sit down. Like you I shall listen to my body and rest when I need to but I have to be careful of sleeping during day because I don't always sleep well at night and I keep getting these really weird dreams. I am feeling much better today but I'm having my single treatment of gem this pm and hoping, without the carbo, it won't all kick in again. The carbo is responsible for depleting my magnesium which can make me tired anyway if it gets very low - don't worry it's being monitored and it's being treated. Hope, as you say your body adjusts as treatments go on and things get more tolerable. I shall be thinking of you when I have treatment. Jackie.

[AlaNtO]

Hi sorry to hear of your plight. None of us react exactly the same way to the chemo drugs used. You definitely have to talk to your Oncologist about your feelings and what you think is happening to you. I went onto Cisplatin for a while and found it very good for producing nausea. It is the same drug the famous USA Cyclist Lance Armstrong took for his cancer and felt the same way. Its a long battle with the cells just reproducing and we have to get it under control. the same technology used for Covid vaccines is being looked at for Cancer - mRNA. So lets hope it does not take too long. We feel for you and ask that you never ever give up. The other ladies here have given great advice.

[Mumsie13]

Thank you for your reply and greetings from the UK. Indeed, I do realise the gravity of "chemo brain" and am not taking anything for granted but, really, thank you for your concern, I am on top of it and so is my consultant oncologist, she is a real darling and her manner and patience with patients (sorry about alliteration) is very soothing yet informative. I am feeling so much better today after the single treatment of Gemzar compared with last Wednesday's combined drugs and am hoping to have enough presence of mind😜 to attend my Parish Council meeting tomorrow, I feel reasonably confident. It would appear that the Carboplatin may be the main culprit.

I don't envy you being on Cisplatin, evil drug (sister drug to Carboplatin(?) which ironically is considered to be much more gentle) and I hope your side effects are not too horrendous, I don't actually know what Lance Armstrong said but I gather that it was far from good regarding side effects. I don't envy anyone going through this journey but I am not ready to chuck the towel in yet, I have too much to do, people to see, places to go, wait to lose

🤣. Take care and I wish you lots of success stabilising your cancer. Hugs. Jackie

[greeneverything]

I have just started this as well, day eight tomorrow and another dose of just the gemcitabine but don't feel very well. I'm not sure if my poor body will be able to take it.

[Mumsie13]

Hi. Thanks for your reply. So sorry you're feeling unwell with your treatment. It can certainly play havoc with our bodies. I know it can be so hard but try to stick with it if you can. Personally I found the gemcitabine by itself more tolerable but we are all different. I found second and third line treatments more difficult but I managed to finish second line and it worked for quite a while. I do understand what you mean though, wondering if your body will cope. I tried to stick with carbo/gem as long as I could but I became platinumn resistant and underderlying complications from the cancer and the chemo itself were making me so ill. From October to the New Year I spent more time in hospital than I did at home. Six months down the line I am off all treatment as I felt quality of life was more important. The complications seem to have stabilised Technically I am on palliative care but I do feel fairly well at the moment although chronically tired. I felt that was the right decision for me but as I said we are all different and on different stages of our journeys. I am hoping for you that your body will adjust to the new combination. If you are still feeling unwell tomorrow perhaps discuss your symptoms with your nurse. I don't know what your symptoms are but they may be able to get you some help. Sending lots if gentle hugs. Jackie