So I’m halfway through gem/carbo for third line. Onc is happy with the way my CA125 is coming down but this regime I am finding hard. If you’ve read previous posts you’ll know I am almost permanently nauseous and vomiting despite having all the big guns anti sickness but mainly my blood counts are so low each time. Discovered yesterday that everything is too low / platelets, neutrophils and iron is so low that if it drops any more I’ll have to go in for a transfusion. Because of this onc has cancelled my day 8 top ups of gem only. Whilst part of me is happy that I’ll have a reprieve every couple of weeks now I’m also a little worried that I’m not zapping things with the maximum that I could be. Hoping things continue to go in the right direction despite not having such a big dose now.
Becky x
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Beckyjh
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I know you have already been through a lot and have far more experience than most of us, but here are my thoughts.
I hated the big guns for nausea, and was saved by simple Cyclazine, which you can take as and when ( I took 30 minutes before attempting to eat anything, along with Omeprozole) and if I was still iffy after eating, popped an Ondansitron).
I took the Cyclazine and Omeprozole before bedtime also.
Like many, my blood levels took a dive after the first two weeks,
The doctors thought nothing about giving me blood transfusions and I had two transfusions during my Chemo, one after the first three weeks and one after the debulking operation.
Bloods stayed low, but within the safe limits until treatment ended. Now, a month later, they are back up into normal range again.
Dear Becky, I am so,so orryyou are going through such a miserable time. Someone recently posted about a new drug called EMEND for nausea and vomiting sorry don,t know very much about iit. Hope your bloods recover soon, theCA125 keeps going down and you go into remission again. Love Chris
Hi Becky, just sending my best wishes. Sorry these drugs are battering you so much. They are powerful....but that power needs to go to the cells we DON’T want! Whatever you can eat & drink, make it count in terms of boosting the iron etc. Maybe a transfusion would benefit you, as Lindaura says happened for her. Just hoping you improve very very soon 🌸🌺🌷☀️
I had two blood transfusions while on this combo and felt like a new woman afterwards. Have you not been given G-CSF injections to support the neuts? They really do help. I always have a problem with them but they enabled to me have the day 8s as well.
Are you doing anything to support your iron? Diet/supplements etc. If not, I've got a long list of things I use to boost it. Good luckx
The Gem impact is so severe on neuts, I'm not sure anything other than G-CSF would do the trick. I had a couple of days of it twice in the carbogem cycle. And those short boosts didn't produce the nasty side effects you get with it over 7-10 days, in my experience.
As Niraparib can be hard on all the counts, I've made a bit of a project of this.
Platelets: there's been quite a discussion on here about Papaya and/or papaya leaf tea. There does seem an evidence base for it supporting bodies. All I can say is I've been taking the tea ( two bags a day) and my platelets, after initially tanking, have stayed stable and indeed are continuing to increase by a point or two each time. I get mine mail order from Buddha teas. They're pricey but if you can find someone to share it gets cheaper if you buy more boxes. These are allegedly also beneficial for neuts. Mine are dropping but perhaps not as severely as without it.
Iron - I did a really thorough search, after 3 units of blood just before xmas, and found a couple of helpful sites. My Haemoglobin was 64. it's steadily increased and is currently at 113 which it hasn't been since January 2017, so something is working. You do need to be prepared to eat odd meals. I now have cod roe paste (or Marmite) on toast for breakfast followed by some dried fruit and nuts with yoghurt!
The following are my top tips but do check the contents for the % of the ingredient you want before buying. Some blood puddings have more cereal than anything else.
Spatone with orange juice on an empty stomach. I get it in bulk from Dolphin fitness online which is far far cheaper than the high street. This alone won't do it. I've been taking this for about 18 months now and it didn't prevent the drop.
Blackstrap molasses, and/or Panda Liquorice bars
Fish roe, including that Scandinavian cod roe paste: Kalles kaviar creamed smoked fish roe paste
Black pudding
Offal: liver
Sea food: oysters, mussels, clams
Dried fruits
Nuts and seeds
These are all higher rated than the usual red meat and green leafy veg, though they're not to be sniffed at either.
I hope this is helpful, Julie. Happy to sharing my being a bit of a nerd!
Becky I’m on Cisplatin and Gem. I have a syringe driver with Levo for sickness and using ondanstron injections for breakthrough.
I was really reluctant to get referral to palliative care for the syringe driver as I was associating it with “the end” but they were so supportive. It’s really helping and so pleased I did it. It can stay in for as long as you need. Probably a week after chemo should do it xo
I am so sorry to hear you are going through a horrid time, I was private medical insurance when I was first diagnosed, and was given Emend, 1 capsule morning of chemo and then one every morning for three days, I had no nausea or sickness right through treatment. I am not sure if this is given on nhs, I am praying it is as I am starting back on treatment for reoccurrence.
Ask the info for gcsf injections, they are so stingy with it, I don't understand why. I felt I was nagging the nurses and doctors when my mum was in the same position but you got to do it to keep your neutrophils up. Sending a hug, stay strong
Dear Beckyjh, I went through 6 years of chemo, and I can relate to your increased nausea! Emend really helped me, combined with Ondansetron and Marinol. My husband made chicken soup using organic chickens and vegetables, which he pureed. Also, every so often I would get infused nutrition at the chemo center. My neutrophils we're helped out with G-shots; first at the chemo center, later I injected it myself as instructed by my oncologist. This way I was able to control my cancer by chemo, until I miraculously was put on an Olaparib trial which saved me to this day since 5 years ago! I'm now 10&1/2 years since my Stage 3-C diagnosis, in remission on Olaparib.
May God bless you on your tough journey! Please keep us posted!
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