I was diagnosed with Primary Peritoneal high grade serous cancer stage 3C in early 2021. I had 6 cycles of Carboplatin and Paclitaxel, radical surgery, two more chemo cycles then Niraparib for just over a year until it stopped working and my CA125 began to rise rapidly. Surgery was considered and dismissed following PET scan and I then had six cycles of Caelyx with Carboplatin. Unfortunately I developed a severe allergy to the Carbo in cycle 4 so despite all efforts to deal with this was able to take only the Caelyx for the last two. The CT scan shows significant disease progression and Lymphatic tumours and my CA has gone up to over 1000, having reduced initially from 6000 when I began this latest treatment last summer. I am now regarded as Platlnum resistant. They do not want to give me weekly Paclitaxel because I reacted badly to it before so I am running out of options and depressed by the stats for those unable to have Platinum treatment. I am now on a break for a month while they allow me recovery time but the recent discussion with my oncologist was unpromising. Have any of you Carbo resistant friends out there found anything which works please?
Carboplatin alternatives : I was diagnosed with... - My Ovacome
Carboplatin alternatives
Some use cisplatin instead of carbo.
Why can’t you have taxol? You said you reacted but were able to have the full 6 doses?
My mum couldn’t have carbo or taxol and so they offered oral chemo as the last option in her case.
I am allergic to and resistant to all Platinum options they say so cannot have Cisplatin. The Paclitaxel has left me with neuropathy and spinal damage which is why it has not been offered this time because the required weekly doses would for me be more of an issue. There has been mention of oral chemo but I don't know what that would be. I will ask again about taxol but last time was a very unpleasant experience for me.
I can’t comment but some women say they weekly taxol is ‘do able’. I say that very lightly because I have no idea but hopefully some will be along to advise.
Have you sort a second opinion? Or trial? My mum tried via the nhs in august to the royal marsden but was rejected because she was ‘out of area’. My advice would be to see if you can find the £450 for a private consultation with dr banajee (spelling?!). It was a 3 week wait when we looked in august.
Best of luck.
so sorry to hear that Alice. How about testing the tumor for mutations and exploring targeted therapy? I assume immunotherapy is not effective for high grade serous? Wishing you the very best!
Hello Alice77, I’m hoping you are going to get to the bottom of your most recent challenges.
I was wondering if you have had genetic and tumor testing yet?
Have you contacted ovacom to seek some guidance about the treatments you have had and ones being proposed as this is something that can be very particular to your case? Depending on what genetic and tumor testing shows up for your case, then available drugs are usually decided esp when you are now shown to be platin resistant.
Have you seen any of the videos by ovacom, for example one on HRD resistant? Does this apply to you? ovacome.org.uk/genetics-web...
ovacome.org.uk/treatments-f...
They have many other educational webinars as well- this is where we can more accurately understand what we are fighting, I think. Very useful tools. Maybe you have already seen and know this information.
I’ve also found very useful interviews with top gyn onco specialists being interviewed on a podcast run by the usa version of an OC nonprofit Ovarcome’s Connect Ovar Coffee: ovarcome.org/connect-ovar-c...
On this podcast you can listen or watch on youtube a host of interviewers discussing latest trends in OC care, treaments, clinical trials, the importance of genetic testing, understanding progression of OC and available treatments depending on your profile, new clinical trials, etc. Hope these provide some useful and reliable information for you. 🙏❤️🙏 Along with other helpful suggestions already made. Wishing you excellent care and support.🙏
As far as I know, HRD resistance is a factor to know about when treating with a PARP - Alice 77 has already had a PARP treatment for a year, so its somewhat irrelevant whether she has HRD deficiency or not. Once a PARP stops working, it is not given again.
Hi Alice, Read up about the Metabolic approach to cancer. Dr Thomas Seyfried or Dr Nasha Winter or the Care Oncology Clinic in Harley Street London. They try to use drugs to block the energy pathway of the cancer cell. Far fewer side effects and well worth a try with or without the other drugs you may be offered by conventional oncologists who work on the basis that cancer is a genetic illness. There is huge overlap between the two approaches and the doctors involved will never stop you still using conventional oncology drugs.
hi alice77 . Have a look at Petra trial on cancer research. I think this might be a trial for you . I would ask your oncologist for a referral . If it’s not right for you they may have something else in the near future .
I’m in a trial called atari but they are on hold for new people at the moment . My cancer spread to my peritoneal and now I have no visible disease. Good luck
Thank you for all the helpful suggestions and good wishes. I have had genetic and tumour testing and have already tried a PARP inhibitor so will not be funded for that again. I will certainly pursue the trial options and am looking at options for a second opinion. Best wishes
I live in the USA. I’ve been on treatments for my Ovarian Cancer for about 9 years, was predicted to not survive past 5 years but I’m still here. Been pretty much on constant treatments the past 5 years, including Keytruda, Avastin and various Chemo drugs to the point I have trouble remembering what all I’ve been given. I just finished a regimen of Pactlitaxol in December. Over the past month I have started a chemo pill called Cytoxin that is taken at home each morning and drinking lots of water all day with it. My CT to check if it’s working is in April. Until then they will check my blood work about once a month.
I'm in the states also I just started Keytruda maintenance it was included in my carbo/taxol for recurrence I'm getting infusions once every 6 weeks can I ask how long you were on it? Thank you
Around 8 months.
…actually it was more like 10 months.
Hi Musicmom I'm curious to know if you are a brca positive carrier? I've been fighting for 5 years thus far and have been on a few treatments too. Thank you
Not brca positive. .
This is for the ovacome teamCan you please advise where we are with Elahere trials in the U.K for platinum resistant patients. Is it still going g ahead or shelved?
It it very unlikely re costs that it'll ever get approved my NICE in the future re costs?
The U.S.A have had very good results with this for their patients, why in the U.K are we always seem to be lagging behind with these new treatments?
My mom is in similar situation. What finally seems to work for her is the combination of Avastin and Paclitexel followed Paclitexel alone. You can also think of doing Next Genetation Gene Sequencing which may predict which treatment can work. Ask your doc about Doxil which seems to stop the progression. Immunotherapy is another option. I heard Elahere is looking promising if one is positive for Folate Receptor. Hang in there and do not give up. Best of luck.
pls ask your docs about Avastin or immunotherapy of Opdiva and Yervoy.
Thank again for the additional advice. I did ask about Avastin and also whether Elahere might be on offer at some point but had to explain to the oncologist what Elahere is and was told I couldn't have Avastin without Paclitaxel. I have just finished six cycles of Caelyx which I think is the same as Doxil so clearly that isn't working.
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