I hope you’re all as well as can be. I have been dipping in and out of this forum for 4 years. Sometimes I find it triggering so find myself purposely avoiding it, but if I can offer help or advise I will do.
I am after some opinions pls. I have listened to the doctor today but still not sure what the best thing is here.
A little background. My 60 year old mum, diagnosed stage 3A in Jan 2019. Recurred Feb 2022, treated with carbo and caelyx x 4 with an excellent response and a ca125 of 14. Started Niraparib but it didn’t work from the beginning. Recurred and started carbo/gem in Jan 2023. Scan after 3 cycles showed stable cancer and bloods of around 500.
Meeting with onc today after 4th cycle and because her platelets keep tanking really really low (15 this time) they want to stop treatment with ca125 around 500.
I have said about continuing with 2 more cycles of carbo but they have really pushed back on it.
They want to repeat bloods next week and gave my mum the option of having the 2 carbos if she wants but stressed that he wouldn’t recommended, but they sat on the fence and said to see what the platelets were next week before deciding.
So ladies, what would you do? Leave treatment at 4 cycles and ca125 at 500, or push for more carbo?
Thanks so much in advance!
Written by
N-A-58
To view profiles and participate in discussions please or .
I think I would go for a second opinion. I can see why you are keen for her to carry on but her blood levels are struggling.
Have you discussed lowering the dose or allowing a longer time for recovery between doses?
It may also be useful to think about the location of the remaining cancer rather than just the ca125. How quickly is she likely to become symptomatic again? I lived perfectly happily with a ca125 of 250 until one day I developed symptoms.
I think it’s my biggest fear now, not being well enough to have treatment. Hope you find a way forward xx
Hi, thanks for your reply! The dose has been lowered each time, and I am lead to believe it’s pretty low now. I think they were hoping this cycle wouldn’t have done as much damage but it did. My mum doesn’t feel too unwell but we don’t really know what to do for the best.
I think, see what her bloods do next week, and go from there. Thinking really that even if she did carbo for 2 more cycles, it probably wouldn’t bring her ca125 down much and could potentially make her feel unwell for 6/8 more weeks but not necessarily give much time to her overall survival?! The risk of an internal bleed is pretty high too, she is just out of hospital a month or so ago with a stomach bleed.
It’s a rock and hard place but the onc mentioned a few more treatments which is encouraging if and when needed!
thank you, the dose has been lowered each time so don’t think they could take it much lower. Each time her platelets have gone dangerously low, even with lower dose.
I was on this regime about 18 months ago. Carbo/gemI'd only had the 30 mins of gem and my platelets crashed to 5!
I had platelet infusion, it took a week before they came back to a normal range. I didn't have anymore Gem but just kept on with carbo. My oncologist told me before I stated that Gem us known to be tough on bloods.
Yes it worked..... My CA125 does not really rise or as my oncologist says "it tells us nothing". It was only 3.4 on recurrence, hence I have CT scans every three months as it's unreliable and not an indicator for me. Some one else suggested getting a second opinion I concur with that, I'm all for second opinions, different oncologists/surgeons have different opinions and skills. Wishing you all the best going forward 😘
It's worth asking about platelet transfusion, as that might be enough to bump her levels up enough. Also a second opinion from somewhere like the Royal Marsden, that has access to trials. But don't take unnecessary risks - if her medical team don't want her to continue chemo, then be aware that a major bleed could kill her faster than the cancer. I know it's an awful dilemma, but the ultimate decision needs to be made by your mum, not by you. Sending hugs!
thank you for your reply. My mum has had lots of blood transfusions this time round to help. A platelet tranfusion only last a day he said but a blood, even though not as instant, last 30/60 days.
Yes absolutely my mum will be making the decision. I’m trying to give her as much info as possible.
Thank you again for your advice! Really do appreciate you ladies.
I’m sorry to hear about yr mum. The decision ultimately is yr mums to make. I’d question the oncologist about the further treatments he alluded to. I know you want your mum to have the further 2 treatments but is that really in her best interest?
Hi. I agree with the others especially about a second opinion. I wouldn’t have the further chemo if the doctors are against it. I think they do most of their good in the first three treatments. I hope you find some new options.
thank you. That’s interesting to hear about the 3 treatment part. We are waiting on the blood results next week and then my mum will decide what she would like and then see what the oncologist says
It's hard because if platelets or neutrophils drop below the floor they believe chemo will make it worse. In some cases they can give you shots to boost white count a d iron or transfusion for red and platelets I take 2 pills a day of papaya green leaf extract and drink papaya leaf tea which keeps the count above 100.its a difficult dance we have to do. Good luck
Hi All, a little update. My mum platelets only rose to 38 so he said no to the carbo but my mum had decided no too. It’s a bit of a watch and wait now but she had a blood transfusion today which will hopefully boost her. Thanks for all your advice!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My recurrence, would welcome your experiences and suggestions.
Not the news I wanted or was expecting 
