I was diagnosed in January 20I8, had the debulking surgery that same month, refused adjuvant chemo. as I was Stage 4b and preferred quality over quantity of life. 2 years later in April 2020, I got ascites so agreed to have some carboplatin, followed up with niraparib, which although the niraparib worked well, sent my blood pressure and heart rate uncontrollably high, so I had to stop the niraparib by January 2021. By December '21 I was offered carboplatin and caelyx, but had a bad reaction to the Caelyx so I had just the carboplatin,, finishing end of March this year, to which I had a 'partial response'' which now classes me as platinum resistant.
Latest scan shows various lymph nodes increasing in size, with one new quite large one in my armpit, apparently - all my cancer seems restricted to lymph nodes, as it has been since my surgery nearly 5 years back. I saw the head Oncologist last week, and he wants me to go on this trial, think it's called Keynote-B96. It's for 2-4 years and involves weekly Taxol with Pembrolizumab, also known as Keytruda, or placebo, 6 weekly. My other option is weekly taxol and, if it works after 24 weeks, go on to Keytruda to see what happens. He said either course of treatment will not extend my life; the latter option seems slightly less horrific to me, not being a lover of any drug treatment at all, but the thing that strikes me as a bit nuts is this - when I asked later in our conversation for a rough estimate of how long I'd got without any further treatment, he said about a year. But he'd also said these treatments would not extend my life, which led me to ask the blindingly obvious question, why? Why would i have any of these treatments and feel ghastly while I'm having them if I'm not going to get more time? His answer was that I would 'feel better'; better than what, I wonder, cos I don't feel bad now, am not noticing any symptoms related with the cancer. I came home thinking that seems bonkers - is it me, am I missing something here, but I don't think I am with the available evidence. I have since spoken to him again and given I'm asymptomatic, he's agreed to delay and check in every 3 weeks to see if symptoms have arrived.
I know I will lose my hair, and what troubles me about that, although I know it sounds nuts, is that I'll be bald in my coffin, there won't be any time for it to grow back... I don't know why that matters to me, its crazy, but maybe I can get over that irrational response. Otherwise, I'm not sure I don't just want to refuse any treatment other than palliative/end of life care when I need it, but regardless, I just wanted to ask what it's like being on Taxol every week in terms of how bad I might feel, so any of you ladies who have had it, I'd love to hear your experiences, in particular the peripheral neuropathy taxol causes. Also if there's anyone who's been on Keytruda....
Miriam
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bamboo89
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Hi Miriam, That really does not make sense! Why would he put you on a trial which is 2-4 years if he thinks you only have a year? it could shrink them or keep you stable the whole time your on the trial? how does he know it wont extend life when its a new trial and they obviously wont have any results? Ive almost given up with doom and gloom Oncologists but who else can you ask!! Hope you get some clearer advice!? xx
Ha ha,, you sound as frustrated as me! But to be fair to the Oncologist, he did not say I only had a year off his own back - I asked him, and he gave that as a rough estimate. I'm surprised I've made it to almost 5 years, given how little treatment I've had. As for the 'it won't extend your life' part, that does seem a bit too definite, I agree, common sense and experience dictates that outcomes cannot always be predicted, but I think the trial,, although its 2-4 years to completion, in reality, most women probably won't take the drugs that long because of side effects or get stopped because the drugs aren't working... that's what usually happens. Whether I want to be part of it or not is another matter... I am not concerned about the length of time left to me, its the quality of it...
Hi, I am currently on weekly Taxol plus avastin , I have 3, then a week off. It is definitely doable. It does affect feet quite badly but I find walking helps. Also sore mouth and lips, plus hair loss. I feel rather weak and willing for a couple of days but there is no loss of appetite or nausea. Neither have I had problems with bloods. Occasionally they ask me me to give myself an injection to boost the white cells which I have a store of in my fridge.
Can I ask how long you're supposed to have your treatment for, is it a finite time period? Also what stage is your OC at? I really don't like the sound of sore mouth,mine's sore most of the time anyway....but the peripheral neuropathy is my number one concern...
I was diagnosed in 2015 stage 4 and the taxol is my 5th line of treatment. There were no obvious signs in my abdomen 4 months after 4th line nor any lymph nodes but there was a lesion on my liver (2.5cm) which decreased in size after 9 treatments of Taxol. The protocol is 18 treatments, I haven’t discussed what I’ll do after. I presume Avastin alone every 3 weeks which is a doddle. Here in Greece there are no trials ,so….
I control my sore mouth with a mouthwash of chamomile, salt and soda plus Daktorin gel . For the neuropathy I have just been prescribed Lyrica which is supposed to help. It appears to be doing so. I was reluctant to take it as there can be side effects which I haven’t had - yet!
Hi Miriam, Im on weekly taxol( and fortnightly Avastin) and have been since December - 80% because in the beginning I had neutropenia. I don't really have any side effects. I lost my hair twice during first line (taxol & Carboplatin) but have hung onto it since December. Not exactly thick and lustrous! I have symptoms - swollen lymph nodes and pleural effusions. I do feel tired but don't know if it's the drugs or the disease. Not sure I'd go on the drugs if I felt well. Good luck with your decision - I really hope you get some clarity. x
Thanks for your response. I have no doubt I will get symptoms sometime in the next weeks or months and that is when I may have the taxol, which I've managed to avoid up till now. I get the impression that weekly taxol is kind of a last resort when there's little else to try, so clearly I am at or approaching that stage. I'm sorry about the pleural effusions - do they still occur even on the drugs or has the treatment stopped those happening?
As for hair, well strangely, mine's been falling out for weeks and because its shoulder length, it gets everywhere, drives me mad, but there is lots of new growth coming through. No idea why its happened, its as if all the hair follicles decided to get rid of what was there and regrow post carboplatin, very strange. Your post has helped me be sure that I will not have the drugs while I am well - the big question for later is, will l have them when I don't feel well. Maybe I'll try and ask for the reduced dose you mention - I assume you mean reduced taxol and not avastin, or did you mean both?
Reduced taxol only. And pleural effusion not clearing up with avastin unfortunately. But we are all different - I think I’ve been unlucky with chemo sensitivity. I do quite a lot of supplements, eat well, acupuncture etc that have all really helped with side effects. You sound like my horses - shedding hair for your winter coat!! I was given weekly taxol as second line so I really hope it’s not the end of the road… I’ll head east if NHS can’t help and make an adventure of it.. but I’m mid 50’s with an 18 year old son … I need a few more years. X
You sure do at that age, mid fifties is far too young to be thinking the way I am. As for chemo sensitivity, its tiresome that my own instant reaction to literally one minute of Caelyx was so severe its not something I can ever have again - there aren't that many chemo drugs available, are there. Do horses shed hair when they're gonna grow a winter coat? I didn't know that, but yea, perhaps that's what I'm doing😄
I forgot to say, the reason they've given for weekly taxol is because I'm considered platinum resistant and can't have Caelyx or Gemcitibane,, so maybe it doesnt always mean its given as a last resort as such....
Hi Miriam, why not seek a second opinion? Ovacome Support Team maybe able to help support you through the thinking and process? Their freephone is 0800 008 7054
Hi Miriam it sounds like you've had some very conflicting infromation today. If l.was you ld get a second opinion yours sounds very negative. I got 1 to 3 yrs myself only because l was stupid enough to asked my lovely oncologist who was reluctant to say. And l really should have none better my husband was given 3 months to live 30 years ago with pancreatic cancer and hes still with me helping me to fight my battle 30 years later and l might add as fit as a fiddle. So no one can really say. And lm still around also at 5 years next month please get yourself a second opinion and get positive we all have our stories on here . I won't say its.easy because it isnt but it can be managed hopefully just get the right advice and help there can be light at the end of the tunnel honestly. I was truly devastated when l got told l thought why me ..l actually felt sorry for myself then l thought back to my husband and they were wrong they can't truly predict how long we have really were all different and all react differently to different treatments in different ways. I also have a brain tumour which is managed nicely thank goodness so lm complicated in.my health and thank god lm still here buying the frocks and booking the holidays l enjoy life and realise lm extremely lucky that so far lve got through everything. It's not easy lm not going to pretend its easy its not found the chemo hard but doable. I love life and can honestly say l research ask questions and make sure if l can l get the proper treatment. But if it were me l get a second opinion with someone who can give you hope and encouragement. Sending love positivey ,& big hugs its a brilliant site so many incredible man ,& woman fighting cancer together ❤ love SheilaFxxx
Thanks for your upbeat response; you are right they can't be certain about how long someone will live with cancer, but I feel I should just say I'm not that bothered about how much time I've got left, I'm far more concerned about the quality of it. Death is neither here nor there, truth be told,, not when you're old, we've all got to go sometime, but the manner of it, ah, that's the concern... I still need to find someone who's on Keytruda though, doesn't seem that will be easy, since the trial is to see if it works in ovarian cancer...
Have them a) confirm it’s OVARIAN and not Uterine in origin
Not that it matters much with stage 4b but knowledge is good
B) get your genetic test results and the results of your tumors . You need both
C) once you have both work with the doctor and on your own to find a trial tjat targets your mutation , preferably NOT a blind trial so you know you are getting the drug
D) once you get the drug whatever it is even if it doesn’t say so as a side effect if you are getting any”chemo” infusion ice both your hands and feet For a bit prior, during and a bit after the infusion . I do it every single time no neuropathy
E) if you want to try to keep your hair try the PAXMAN cap , I do it every single time been doing it for over two years
I’ve been on ENHERTU for 15 months no hair loss
Did carbo taxol the year prior had hair loss not total , but that was due to two reasons first the cap wasn’t fitting right the first two times second the treatment was 3.5 hours versus the 30 minutes drip on ENHERTU
I am in my fifties
Diagnosed June 2020
Stage 4b originally thought ovarian origin turns out uterine
No genetic predisposition, not over weight and exercises regular and had a great menopause
My tumors were HER2+
So far ENHERTU Contines to work I go wvery 3 weeks and I have worked full time the unit all and on my way to work now
Thanks for your response, very interesting, I've never heard of Enhertu, so I looked it up. In the UK, its undergoing 2nd stage trials for ovarian cancer, yes, but in low grade ovarian - mine is high grade epithelial serous as well as non small cell neuro-endocrine, which was also found in the ovaries and a lymph node. I have had genetic testing just after surgery, I'm not BRACA positive, but unfortunately, the tumours themselves were never tested, though it was established my cancer is not hormone driven. Whether its HER2 positive is not something that's been mentioned and I doubt its been tested for that either since they didn't even check if the tumours themselves were BRACA positive. Likely this drug would not be an option for me currently because I'm not low grade OC, but I will write to the Oncologist to inquire, though whether they could get a sample of some sort from a cancerous lymph node for testing now I don't know. It's fair to say that the UK survival rate for OC is one of the poorest in the world, certainly poorer than that in mainland Europe.
As for a second opinion, I had that right at the start, five years back - my biopsy results were so unusual, what with the non small cell neuro-endocrine mutation, they were sent through by my hospital to Dr. Bannerjee at the Marsden for a second opinion, who confirmed the test results were accurate, and that the treatment proposed by my own cancer unit was exactly what they would have given. I sought a further second opinion from the Marsden direct 6 months later, but their opinion and recommended treatment still concurred with my own treating cancer unit.
I am curious as to how you managed to keep your feet and hands iced during your infusion, did the treating hospital organise that? I think the Paxman cap might be what we call the cold cap, and that's been suggested as an option - its apparently more effective with the shorter infusion time for weekly taxol. I shall make more inquires and do a bit more research, thanks for taking the trouble to write...
The chemo center gives me ice in baggies and I slip
My feet into them 20 minutes before chemo starts and leave in 20 minutes after
I also got two old knit gloves and cut off the fingertips and do the same thing
Think of it like a cold cap for your hands and feet
They also sell ice gloves etc but since mine were free easy To make washable and the center gives me the ice baggies I’ve opted to go that way and so far so good been doing it for two years no neropathy thank god
Thanks - you're in the States I think... here, the chances of the NHS providing bags of ice on the chemo ward are likely next to zero, but I will ask about it when the time comes.
ok this is alternative but i'm taking dog dewormer, which i should have as part of the joe tippens protocol that includes cbd oil, zeolite, bicarb, turmeric. very rarely remember or have the will to take it all. spoke to onc & she essentially said that the dewormer could not harm me. it is being trialled for OC at stanford but no proven results but the guy who started it had small-cell cancer. it's reasonably easy to take. in fact it is licensed for human use but not for cancer.
then can only say what others have said - if the treatment cannot prolong life ... you're so pragmatic and i applaud that. love cag xx
I did the Joe Tippens protocol for a while 2 years back...the problem was trying to get hold of the proper strength CBD oil here in the UK, I found that impossible, as well as me having an unpleasant reaction to the amount of turmeric which I had to stop, but the protocol I tried did not include zeolite nor bicarb, it was high dose vitamin E, high dose turmeric, CBD and dewormer daily. I stopped it when I went on carboplatin the first time- when I took the wormer the day after chemo, I threw up, put me right off - I'd not had a problem with it for the 4 months before that. Interesting, what your oncologist said - I never told mine I was taking anything at the time. maybe I should start the dewormer again though.... what CBD oil are you using?
Thank you very much for sharing your experiences on this post.
As always, we would advise people to speak with their clinical teams before starting any treatment protocols or supplements to ensure that they are safe and appropriate for your own individual circumstances. It is also important that your clinical team are aware so that they can ensure that there is no potential for drug interactions. For example, turmeric can interact with certain chemotherapy drugs. Turmeric is can also interfere with blood thinners.
We also encourage anyone interested in purchasing supplements or herbal products to ensure that they buy from a reputable supplier. The British Dietetic Association have some information about this here: bda.uk.com/resource/supplem...
The Memorial Sloan Kettering Cancer Centre have a database that provides information about different herbs in relation to cancer and cancer treatment. If you are interested in knowing more about this, please see the link here: mskcc.org/cancer-care/diagn...
Please know that we are here to support you and would be very happy to look into any information that would be helpful for you. You can contact us by calling 0800 008 7054 or by emailing support@ovacome.org.uk. All of our support services are available Monday – Friday 10am - 5pm.
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