So after a wonderful 2 months off chemo during which I holidayed and partied to my heart's content it's back to chemo.
This is my fourth line chemo since Sep 2019 - , and potentially last - carboplatin and gemcitabine. My oncologist is incredible ( research lead at Royal Marsden) and we had a long talk about quality of life. I trust her implicitly.
As I understood it, she explained that the regime for carbo/ gem is day 1 both chemos, day 8 just gemzar, week off then start again. She explained that data outcomes had showed no significant difference if day 8 gem was dropped, the difference it makes is marginal and in her professional view ( which as I say I completely trust) would not change outcomes for me in terms of qol or prognosis. I am going to ask the CSN to go back through the research as I don't understand why day 8 is on the protocol if it doesn't make significant difference.
This regime will not extend my life but hopefully control symptoms and so it's very much about quality of life. She described this as a tough regime in terms of fatigue side effects. We discussed also the impact of going to hospital 4 x in a fortnight with only a week ( bloods and chemo ) off which I found hard during previous chemos- the sense that you never get away.
We talked about the benefits/ disadvantages of having day 8 gem and I am undecided on it. She explained that often the bloods are often so bad it can lead to delays in the double dose and that is more important. I had poor bloods on caelyx but was fine on weekly Taxol.
I don't need to make a decision about having the additional dose yet so we have booked it in with a view to me cancelling if I don't want it. I could of course try it and stop it if it's too much or my blood results might make the decision for me anyway.
I am thinking it could be like this :
A) I have just week 1 week chemo, every 3 weeks. I feel rubbish 1 week, ISH a second and ok a third.and able to enjoy more of life.
But will always think what if?
B) I have 2 weeks chemo, feel rubbish 2 weeks and ISH for one. But know I did it all but don't enjoy much as feel blrurgh a lot
Having written it down I think I know what I should do, I should refuse the second dose and focus on qol but it takes so.much courage to turn treatment down.
I guess what I would like to know from anyone who has had this regime is your experience in terms of the regime, especially the second dose. How tired you were? Was your quality of life reduced so much that it wasn't worth putting yourself through the second dose? Did you sail through it?
Thank you
Sara
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SASSY196
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Good luck. I'm very lucky with my oncologist, she doesn't mess around. She pulled my scan forward when I reported symptoms and I am already booked in for chemo.
Hi Sara , I haven’t had this combination… It seems your onc is saying just have the carbo… but is giving you the choice.
As you say, why is gem on the protocol if it doesn’t do anything? Be interesting to hear what your CNS says (as you plan to)
I completely get the - well if I don’t have gem - Will I wonder if I should of…. Why not have the one gem and see how it is? Wot it does to Ca125 and symptoms- also wot side effects and bloods? If onc says regular drugs are more important than both as she doesn’t want delays due to bloods- then the decision is kinda made after that first dose ? So re evaluate after first three week cycle?
Sorry maybe I didn't explain properly. She is saying have the double dose - carbo and gem and maybe skip the single gem dose. I think she was saying if it works then having double dose might for eg reduce tumour by 22percent and additional dose of gem would only add 3 percent taking tumour reduction to 25 percent, so potentially big side effect and loss of a week of being able to do stuff wouldn't really change my outcome.
Hi SaraSorry for not reading properly.. the extra stats kinda make strength to the miss the day 8 dose- as it doesn’t add much but takes away 2 weeks of feeling good and enjoying being out and about ..
I haven't experienced the treatment regime you are being offered, but wanted to say that I think both you and your lovely oncologist are having the same thoughts about your QoL. Which is to say that I think she is giving you an 'out' by mentioning that the bloods could be too poor after wk1 to have the day 8 Gem - so you have a legitimate reason to say No, without feeling like you've given up, because you haven't. You're making a conscious choice to make the most of your life in the time you have - and perhaps you won't be able to do that quite so well if you're feeling bleurgh?
I get it - turning down treatment is hard. But the way you describe it is that the bulk of the symptoms (say 75%?) could be controlled by having the bulk of the treatment (ie you have chemo wk 1 but ditch Day 8Gem) - with relatively little extra benefit if you do take Day8, and that it perhaps may even make you feel worse. (I hope that makes sense - I've rewritten it about 4 times!). If I've understood and interpreted that correctly, then I know what I would do.
Whatever you decide, I'm wishing you well and sending you love
Yes that's exactly it. I think as I wrote it down I kind of saw what I need to do, which is just have the courage to not take dose 2. Even having it once will loose me time and in theory my statistical prognosis is four - five months ( hoping for more) , so a week is a long time. It would be time at home rather than hospital ( because even the most efficient of bloods/ chemos looses a morning) . Thank you
'...even the most efficient of bloods/ chemos loses a morning'. Yes. This.
I have no compunction now about telling people/clinicians/receptionists (in fact, anyone who can't stick to an agreed time for anything without a valid reason) that I've got limited time here, and do not intend to waste it in waiting. Before my diagnosis, I would always try and make people feel comfortable in their tardiness - 'Oh, it's okay/I don't mind/Please don't worry' kind of thing. Now, it's rather liberating to not have to, and sh*t gets done quicker.
Grab hold of your fate; grab hold of your family and friends, grab the wk1 (give Gem the finger) and party and love and celebrate this time you have. You may have more, you may have less - but it will have been emphatically your time, not lost to grey waiting rooms.
I'm okay, thank you for asking. I broke both my arms a couple of months ago but they're healing pretty well, and it's just about getting the range of motion back on the LHS - the shoulder was in so many pieces, eek! Hoping to sign up for college in September, to study art and design. Is scary, thinking about further education at 50 - fingers crossed I get some funding for it.
Oddly enough, I've just posted up about a call from my surgery's pharmacist who has really upset me. She turned what could have been a mutually considerate and pragmatic conversation into a direct and degrading attack on my dignity. I'm still shaking - going to write a complaint when I've calmed down.
Have been thinking about your post and your choice a lot. I know this is something I am going to face at some point too. Have you been able to discuss it with your hubby and family? Have they voiced their feelings about it? I hope you are surrounded by love and support and understanding. xx
I am surrounded by a huge amount of love and support. I'm very lucky in that sense. My husband is a complete and utter star. I'm not going to have the second dose, it's decided.I am so sorry about your arms, what a nightmare. I'm glad they are healing.
Brilliant you are going to do art and design
I think if things were different I might do gardening. I retrained at 44 years from teacher to social worker and am so glad I got 8-10 years in a profession I loved passionately.
I'm also sorry about the pharmacist, it sucks that she behaved this way. Hoping you are feeling bit better now.
I had this regime which started in 2020 for first recurrence,and actually I found it ok. I felt tired days 4 and 5 but otherwise ok. This was followed by the parp Rubraca, 2nd recurrence March this year.Your Oncologist is on the ball, so i hope things go well for you. Thinking of you.x
Hi Sara, have you considered a clinical trial, I’m in a similar situation to you, finished weekly taxol in March and Amon the prompt trial. Worth asking your onc.. All the best and regarding the chemo situation we all get different side effects so it might be worth trying both chemos and dropping one if your unwell. All the very best Sue 😘
Thank you. My oncologist is the research lead at Royal Marsden so she's very knowledgeable about all current trials. We discussed trials and they are not off the table for the future if I am well enough. She considered that the chemo she is offering has proven efficacy and less side effects than the trials I would qualify for.
Hoping you are doing ok and able get on with your life as fully as possible.
No it isn’t and this doesn’t sound good but I’m in Hospital with raised liver function due to the drug Keytruda but it’s come down pretty quickly so all well so far. Good luck Sue xx
My dear Sara,Why don't you give it a go and see how you feel, you won't know till you go through it will you.
Thats my opinion but lm willing to try anything l do agree with quality of life but it might just work . Have you tried immunotherapy not sure if it works for our ovarian cancer but worth asking. I send my love ,& hugs & prayers hoping you make the right choice. SheilaFxxx
Hi Sassy, I recurred in Dec 2020 & needed more surgery. I started chemo again exactly 2 yrs after front line chemo. First time I was on carbo/taxol & this time I started Carbo/Gemcitabine on week 1 & 2 weeks later Gemcitabine. I ended up on Carbo/Gem only, every 3 weeks because my white cells were really low & I ended up going in for my chemo & then not been able to have it so I would go home upset. My oncologist decided to give me the carbo/Gem only & have Neulasta injections after it. This worked & I continued to get through the 6 cycles & since then I have been on Gem on its own. He is using it as a maintenance & so far the remaining nodes after the last op have shrunk so it has been working. I have just had a long awaited Ct scan today, which was due in May so hopefully I will have the results in 2 weeks so 🤞. The only symptoms I find after the Gem are very bad reflux & indigestion for about 2 days but otherwise I have found it very tolerable & I just get on with life. My newly grown hair thinned out alot but it didn't go completely. I hope this has helped you in some way to come to a decision but remember we all deal with treatments differently & you might have no problem with low white cells & sail through it. Good luck with it & let me know how you get on Xx Mag
That's really helpful..I am starting from probably a much weaker place, although you had had surgeryI only finished my third line chemo 8-9 weeks ago, I still have some of the side effects - brittle nails, no hair . What you describe is exactly what the Dr described to me, a high chance of white blood cells being knocked for six and risk of not getting the next ( full) chemo combined with the single dose not having much of a difference.
I think I've made my mind up just to go with the single dose and not put myself through the stress etc that goes with the second dose.
I so hope your scan results are positive and thank you for your reply,
It sounds like any time you might gain would be spent in treatment and recovering from treatment. I know it's not that simple really, but thinking of it that way might help any "what if" thoughts if they did plague you. These quality of life vs possibility of more time questions are brutal. It does seems to me that trying the 8th gemzar to see how it works might just prolong the decision and make you spend even more time thinking/worrying about it. I hope you are able to come to a decision that gives you peace of mind!
Sara I am on cisplatin and Gemzar. The cisplatin just made me nauseous and the Gemzar dropped my neutrophils and platelets. But they give me a shot of neulasta which brings it all up and the platelets recovered thank goodness for my second session. Gemzar alone was easy for me as no nausea. I am on the 21 day schedule as well. week 1 both chemo, week 2 Gemzar, week 3 nothing then start all over again. Hope this helps send me any questions you have! Only you know what your body can handle and it sounds as you have a great team as well.
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