I was diagnosed with stage 4b ovarian cancer in 2020. I underwent surgery had chemo paclitaxel and carboplatin. I commenced on olaparib for two years and my cancer had spread . I then underwent another six cycles of chemo carboplatin and calyx with a partial response. I haven’t been on any treatment since march and I’m feeling great . my scan has now showed significant spread and they have offered me paclitaxel and bevacizumah (avastin). this will be my last treatment. they have said I will be on it until it stops working or until I can’t tolerate it . im wondering is it worth putting myself through all this again . the loss of my hair is really hard to go through a second time . has anyone tried these drugs and how effective were they. I was told the paclitaxel won’t benefit me much however not sure how effective the two together are . i feel now quality over quantity. Very confused as what to do for the best . can anyone share their experience. im new at this posting . thank you . Xx
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Kieran2018
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After being deemed platinum resistant. I had weekly taxol earlier this year, with self-funded avastin [don't qualify for it on the NHS]. I got a "good partial response". So am continuing with the avastin for the time being. I was told, btw, that there are still treatments to try after this one stops working. Namely, the modified Rotterdam regime (cisplatin + etoposide), cyclophosphamide, and hormone treatments, as well as phase 1 clinical trials if available. There is also the possibility of reintroducing carboplatin after a break. Hope this information helps.
I only stopped because I completed the course of 18 weekly treatments. As its given at a lower dose, I kept my hair for about 10 weeks, it started thinning first then fell out. I have heard that the cold cap works well with weekly taxol, i just couldn't face the discomfort. I would also recommend a port as it really cuts down the treatment time.
Thank you so much . I asked about the cap and they said they don’t have the capacity to provide it . I’m living in Northern Ireland. Maybe it’s funding behind the fact they are telling me this will be my last treatment. I really appreciate your reply. I think I will try and talk with them again. So difficult to get talking to them . Maybe I will keep going with the treatment. Thank you so much for your reply. X
That’s shocking you don’t get offered the cold cap, it absolutely worked for me and many others I know, you just have to persevere with it. I really hope you get some more positive answers. Sending hugs x
I would talk to them again. Take someone with you for moral support. Ask about what other treatments are available for disease control. You have the list from me as a starting point. Taxol/avastin is arguably the best option, though none of us know in advance how we will respond to any given treatment. I didn't know that the cold cap is not available on the NHS in Northern Ireland. Shocking.
I will do if I get an appointment. It’s very different here . It’s difficult to get information from them if you don’t know the right questions to ask . Did you find the taxol less severe getting it weekly? I have got more information from you today than I have got from my last appointment. Thank you . When I asked how long I would be on it for she just said I would be on this until it stopped working or until I couldn’t tolerate it any longer . She didn’t mention 18 weeks for the taxol . I came away thinking it was the end .
I found weekly taxol quite tolerable, though it did accumulate as the weeks went by. At times, I struggled to walk any distance due to the neuropathy in the soles of my feet but that eased when the taxol stopped. The fatigue was pretty intense by the end but, three months on, I'm feeling quite well. Still on the avastin and not experiencing much in the way of obvious side effects.
Ok. I'm no expert. Also diagnosed 2020 (in my 50s) and on 2nd recurrence now. I was 2b but clear cell and endometrioid, very likely to recur. I don't think your team has been that helpful, offering you something that might not work but will make you feel worse until you feel too bad to carry on. A friend of mine (she had pancreatic cancer) was told they had no treatment for her so she begged them and they said they could give her chemo till she could no longer tolerate it. Every single time she was blue lit to A&E, getting worse, getting weaker. I feel I have to tell you that even though it's discouraging. I don't want anyone else to go through that. Of course pancreatic cancer is a different beast.
As suggested, take someone with you. They can play the idiot if you know what I mean, eg 'I'm not being funny but if it's not going to work, why do you think she should have it?', etc. Ask about trials, immunotherapy, other drugs. Don't have the paclitaxel if it'll cause hair loss and have no significant effect on the cancer. And get a second opinion. You're entitled to one and you can even ask for a certain hospital/doctor I believe. While you're feeling ok, you can can make enquiries.
I have tried the cold cap. It didn't work. [edited by moderator].
Also perhaps call Macmillan or the Ovacome team as they are so knowledgeable and will know which hospitals have specialists.
I was offered another surgery and more chemo and refused. Meanwhile I am taking alternatives and can DM you them (check with your team beforehand) I took these regularly after first recurrence (which happened within 4 months) but gradually scaled them down as 3 years went past, only to have cancer recur soon after. Maybe they had nothing to do with this delay in recurrence but I can't help but wonder. I asked oncologist this time around what my original prognosis was and she said (though they never told me this) that they thought I would be dead by now. I had no idea and if I had, I would have been more proactive in my research.
Anyway, I know you're at a low ebb - anyone would be, given that news. I will pray for you too.
All my good wishes and a virtual hug.
xx
One more thing. You can ask why you've not been offered something. This is one good thing I learnt from Macmillan. I asked about Avastin and was told 'Money'.
Hello Kieran2018, Don’t give up stay strong and positive. Long story short. I am a cancer survivor 5 different times, breast, ovarian, spread to liver, then spleen, and last was bladder. Years apart each time and with 6 months of chemo each time, except for the bladder cancer. I’ve also had several surgeries during these episodes to remove cancer. This all started when I was in my late 30’s and I am now 71 years young. God still has you here for a reason, stay strong and positive!!!!! God Bless.
Hi Kieran2018. Listen to Tabor above. Don't give up looking for answers. Don't assume the people you've spoken to are correct. You just haven't spoken to enough or the right people yet. I'm now 72 and have had 3 recurrences after stage 4 diagnosis in 2015. I've lost my hair 3 times and really don't see the problem with that. It grows back, your life doesn't. I start radiation treatment next week, first time after 2 operations and a LOT of chemo. So many people I know have chronic illnesses that there is no treatment for and are in constant pain or discomfort, so I consider myself very lucky.
I hope you find your answers and your strength to keep fighting.
hi definitely take this treatment I am on it for my 3rd reoccurrence and so far it’s doing wonders my ca 125 has come down from over 2050 to 436 I’m just on cycle 6 I get nausea and tiredness and just feel better then weekly treatment again. Also my latest scan showed it’s not grown any more and no new signs of anything else. My hair is coming out a lot but not as quickly as first time it’s thinning a lot and hide it under a cap. Good luck with whatever you decide xx
You are entitled to a second opinion on the NHS. Are you able to travel? If so, the Royal Marsden in London leads the world in cancer treatment and would have information about further treatments and potential clinical trials that might be suitable for you. If surgery is an option, the amazing Prof Christina Fotopoulou at the Hammersmith Queen Charlotte hospital in London is known for operating on patients that other surgeons have deemed inoperable. There are also excellent cancer centres in Manchester (Prof Jayson) and Liverpool. I do know that Northern Ireland lags behind the rest of the UK in cancer treatment and if you do have the resources to travel for further treatment, it might help you.
Your oncologist can refer you (if they refuse, that's a massive red flag!) or your GP. You can email many consultants directly and I know Prof Fotopoulou is responsive to patient emails but it's best to go via your consultant.
The paclitaxel is rough, and if they don’t think it will help much, I wouldn’t find it worth it. I was on Avastin and niraparib for over a year. The niraparib made me feel awful and I don’t think I would take it again, but Avastin alone was more manageable. If you haven’t tried it, you may want to see how it affects how you feel and if it is effective. It was effective for me, and I have been off of it for a year and a half now. I was diagnosed IIIC in 2020 and had a recurrence 5months after completing first round of carbo/paclitaxel and surgery. It’s a hard decision, but I agree about quality over quantity. If I had it to do over again I don’t think I would’ve stayed on the niraparib for so long.
I concur with the others who encouraged getting a second opinion and pressing for more options. Everyone is different, and different doctors have different perspectives. Wishing you peace and strength while dealing with this difficult decision 💜
Hello I’m in the states 2nd recurrence am platinum resistant am on Avastin/Doxil I believe it’s called something else in the UK. It’s been tolerable for me no hair loss CA125 is stable. Sorry to hear the cooling cap isn’t available I’ve used it 2 times with Carbo/taxol I know everyone has a different experience only lost 20% it’s a commitment but it was important to me.
A second opinion from an oncologist with a good reputation is a must for you. Can anyone on this site recommend a good onc. in Northern Ireland???? It is your RIGHT under the NHS to have a second opinion. Christina Fotopoulou at the Marsden and Prof Grayson in the NOrth of UK have fantastic reputations, as mentioned in one of the replies above. As for hair loss, I have lost it twice with different cancers. Think Joan Collins and Dolly Parton and have some fun with wigs. Simply Wigs and Valentine are good sites. Always make sure you are able to return them and don't be put off if the first few are not right. I have never had so many compliments from strangers on my "hair".
Hi , only two oncologists in Northern Ireland for oc and they work together. Different in England easier to get a second opinion . I found the hair loss tough the first time . It helps knowing I’m not along going through this again . Thank you all xx
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Stage 3c Ovarian Cancer initial chemo didn’t work
Weekly Taxol
New here. Treatment ideas? Endometrioid Ova
1st round chemo went so bad
CA-125 Test Results
