Is this it?: I saw my oncologist today, and as I... - My Ovacome

My Ovacome

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Is this it?

27-359 profile image

I saw my oncologist today, and as I thought the Anastrazole isn't working. Having already had Carbo/Taxol, Avastin and Carbo/Caelyx all he has left in his arsenal is weekly Taxol. Can you please tell me how you managed with this, and whether it was worthwhile.

He said that I probably only have about a year ahead of me, and that I might prefere to just stop all treatment and enjoy the time I have left. I have decided to try the chemo, with the option of coming off it if I feel too ill.

Obviously I feel devastated. I am sitting at home now and can finally see the advantage of a husband to give me a cuddle!

Jenny

55 Replies

Hi Jenny Your post has just popped up and I can’t comment on weekly taxol but I just wanted to send you a virtual hug and lots of love. This is such a horrible disease. Are there any trials you could take part in other than weekly Taxol? I hope you stay well for as long as possible and other options become available.

Gillian

Thank you. I would have to travel to take part in trials and unless it was a stage 3 or 4 trial, I'm not sure it would be worth it.

Jenny

Karan69 profile image
Karan69 in reply to 27-359

I had to travel for 2 hours to get to my trial and it was a phase 1 but has given me 4 extra years treatment free please don't give up. Bid hugs.

Can you get a second opinion? There are many more chemo drugs that weren't mentioned. I don't know what your response is---but please don't give up.

27-359 profile image
27-359 in reply to darksky23

What chemo drugs? I am pretty up to date with what's available and don't think there's anything lurking under the radar. The only other drug I can think of is Gemzar and my oncologist is not in favour of using it.

Jenny

darksky23 profile image
darksky23 in reply to 27-359

There are some others....don't know if you were recommended for them. Doxil--Carboplatin. I know lynparza (olaparib) was supposed to be a drug if you were at a place to keep everything in check. I think it is over rated and you have to be careful because it doesn't do all it is supposed to do. The blood tests---say one thing but the scans show another. So then the doctor takes you off lynparza and you start chemo again.

Jenny, I haven't had weekly taxol but it may we'll be my next option ,like you I would give it a try , you never know with this disease , I really hope you do ok on it . Sending love and strength .Cheryl xx

27-359 profile image
27-359 in reply to fendweller

Thank you.

I have not had any treatment since January and have low activity in several lymph nodes. I have had carbo and taxol, rubraca that did nothing then 6 carbo only which I had partial response to. I asked what next after scan to be done in August then see onc in Sept and she said weekly taxol will be next. Does weekly taxol mean that's it, I feel well and am active, walk, garden etc rarely sit down much during day but after seeing post think is this the end of the line for any more treatment.

Ask about caelyx and Carboplatin , I've only ever had a partial response since 2nd line ,but the chemo had reduced it each time and kept it stable for a while .Cheryl xx

ThanksFendweller last treatment was carbo. Will ask when I have next appointment

Good luck.xx

Hi,

That's rubbish news Jenny. I am sorry.

I went onto weekly Taxol in December when my bowel blocked. I was lucky in that it unblocked my bowel.

It obviously required a minimum of a visit a week to hospital or two if you have bloods done separately. It only takes an hour or so though for infusion as it's reduced dose.

I found the regime ok, but got worn down by spending so much time at hospital. Although it was also winter and dark at the time which didn't help.

I lost my hair and obviously was fatigued at times. My bloods never dropped to a level I couldn't access treatment. My ca125 did start to rise toward the end but we finished it anyway.

I pretty much had a mental health breakdown about when I was released from hospital after my bowel blocked, I think the trauma of the situations and spending so much time alone ( single room, 1 hour visit a day because of Omicron variety) but I was supported and have had some lovely weeks since especially since I finished Taxol ,for which I am very grateful. I have done some big things- a wonderful party and some holidays and some little but lovely, time with family and friends. Without Taxol I would not have had these.

However I am now just back from scans and MRI because bowels feel a bit dodgy.

Like you my options are running down.

My oncologist said that she may be able to give me carbo and gemzar, depending on where cancer is. There is also the Rotterdam regime, my oncologist doesn't do this. I think because the side effects are not worth the benefits in her professional opinion. Finally there might be research trials. So perhaps you could ask your oncologist about these other options after Taxol.

I knew that if Taxol didn't work I would most probably die within weeks. I knew the efficacy of Taxol, which I'm not going to post in case anyone doesn't want to know. I am quite young, 55 at time of starting Taxol and 56 now, without other complications and I am very glad I took it. Like you say you can choose to stop. For me the benefits far outweighed the side effects.

Obviously your situation is different, I guess you will find out when you start but let's hope it has good outcomes with minimal side effects.

Sending a virtual hug in lieu of hubby.

All the best

Sara xxx

27-359 profile image
27-359 in reply to SASSY196

Thank you for the positive reply. I will do my best to prove my oncologist wrong!

Jenny

Sending you a cyberhug. What a cruel thing this is, however, a new trial may become available, let’s hope so. Just concentrate on the hour/day/week ahead and fill it full of as many nurturing kind people and experiences that you can. Seek out some experts (Maggie Centre/MacMillan/local support groups….I don’t know where you are….) so they can help you make sense if this thing. Love Wendy xx

27-359 profile image
27-359 in reply to wendydee

I have contact with my local hospice, and they are amazing. So kind and knowledgeable. They have organised my pain relief and are always available at the end of the phone.

Jenny

wendydee profile image
wendydee in reply to 27-359

I hope they can help you to find ways of getting the best out of your next stage. 💜

Jenny I've realized I didn't mention that my oncologist said my next option would be taxol or caelyx on its own , I plumped for caeleyx when my watch and wait is over , I don't know how you did on caelyx ,could it be an option .Cheryl xx

27-359 profile image
27-359 in reply to fendweller

I think the issue is that Caelyx is my most recent chemo whereas Taxol I last had in 2017. Carbo/Caelyx only have me about a year NED.

Jenny

fendweller profile image
fendweller in reply to 27-359

I see ,my last caelyx was March this year ,I've been on watch and wait, saw oncologist Tuesday and there was no change , so watch and wait again till September , we disgused it previously and he thought caelyx would be best ,but not sure if he would have changed his mind if the scan had shown progression and I'd needed chemo straight away ,all very stressful and confusing isn't it , what works for one doesn't for another ,always wait and see.Wishing you all the best with your decision .

Cheryl xx

Is there a possibility that they doctors give you a parp inhibitor? Cor my third regime i al on Carbo and caelyx but when i finish in oktober i immediately start Itj olaparib. I am brca 1

27-359 profile image
27-359 in reply to Decatlinda

I had a parp, Rucaparib, it only gave me a few months before we saw cancer spread.I

Jenny

My mum is currently on weekly taxol and CA125 has dropped significantly, which has always been some kind of indication of what is happening for her.

I have seen posts in other groups of women who have done well on weekly taxol. So it clearly does work for some. My mum's oncologist seemed to think there were still some further options after this. I hope that gives you some hope.

That is positive news! I have to be hopeful, but the oncologist said that there was only about 30% chance of it working.

Jenny

Thanks for this, to read in the post weekly taxol may be last option has sent me into a panic .. I feel well an d have low activity in lymph nodes CA125 is 10 to read there could be further options is a bit of a relief

You are always entitled to a second opinion on the NHS from a major cancer centre (e.g. the Royal Marsden in London, QE in Birmingham, Christie in Manchester). This is your right and you needn't feel shy about asking. Different oncologists have different approaches and you might find someone more sympathetic to you. Your oncologist may be right that you only have a year left, but he's more likely to be wrong - every patient is an individual, we all react differently to the various treatment options and frankly the only accurate predictions of length of survival are the ones measured in hours or a few days. There are trials in progress as well and early phase can be very helpfui, even if only because you get extra support and attention around a trial. Sending hugs!

Hi, I am only supporting my mum on her journey so cannot comment on treatment, but I can send massive hugs. Good luck with whatever you choose, remember it's your life.xx

Yes I have thought about a second opinion, but I know that I have worked my way through the available drugs and don't think the main cancer centres have anything new and amazing that I don't know about.Immunotherapy is definitely the way forward, but I don't think it will be available in time for me!

Jenny

Hi Jenny, I had weekly taxol before I started the prompt clinical trial and it did work. I have only been on the prompt trial since the end of March but my first scan showed a slight decrease in the tumour and everything else was stable. I wish you all the best Sue xx

Thanks Sue. I will have a look at the Prompt trial, though don't think I have the energy to travel backwards and forwards to London.I hope it works for you, it's looking good so far.

Jenny

Hi Jenny, That must have been such a shock to you to receive that sort of news. I am in 3rd line chemo, carbo/caelyx,just had 4th session. My Oncologist said I could possibly have letrozole, but that has changed as I am oestrogen positive,so will not work. It looks as though I could have Avastin,but will have to pay privately,so I am still looking into this. Like you I will be on watch and wait,as there do not appear to be any trials that are suitable at present. There seem to be people that have had success with taxol, so maybe that is the way to go. As you said you could get a second opinion, but when you have had the various regimes of drugs it is difficult.

Let us know what you decide. In the meantime I am sending you good wishes and virtual hugs.x

27-359 profile image
27-359 in reply to Caleda4

Thank you. Yes, the whole cancer thing is rubbish, but there's no way of dodging it. I'm hoping calm acceptance will settle upon me one day soon, but I have my doubts!

Hi Jenny my heart is breaking for you receiving this devastating news. I know someday I will face the same news but I try to say positive and put it out of my mind as much as I can. I have been on carbo/taxol/Avastin but recurred while still on Avastin. I was on Carbo /Gemcitabine last year & currently on Gemcitabine only. Nodes shrunk on this combo & presently waiting on Ct scan. I am just wondering would Gemcitabine be available to you to try.? You are right to try the taxol & see how you get on & you never know you might prove your oncologist wrong & be around for a lot longer. Sending you lots of Hugs & all the strength you need to continue on your fight with this horrible disease. I will be thinking about you Xx💞

Thank you for your kind words.

Jennny

Hi Jenny. I’m so sorry you are dealing with all this right now. It stinks! Like others I think you should get another opinion at a major cancer center. Obviously it’s up to you whether to accept your oncologist’s approach or try for a trial. I have seen a number of women on here do well with weekly taxol and I hope you will too. Sending virtual hugs. Xx

Thank you.

Hi Jenny what horrid time your having, but personally if it was me ld had the chemo no one can actually say how long we have l got told 1 to 3 years and was devastated but lm still here 5 years on and still fighting the battle. My husband got 3 months with pancreatic cancer 30 years ago and he's still my darling boy and hes helping me in my battle. I won't tell you its been easy because at times it hasn't , but l love life and wont give up if l possibly can. But l have a good quality of life thank goodness lm not in any discomfort so lm lucky really . Im sending you all my ❤ love SheilaFxxx

27-359 profile image
27-359 in reply to Realistic

So happy to hear that, and long may it continue.

Jenny

Hi Jenny. As someone else here said, we will possibly (not definitely) all have to deal with this one day.One of my mottos is "yes, I'm going to die BUT NOT TODAY". Try everything you can and in the meantime, live the best life you can.

I'm a great believer in alternate/natural therapies but have opted for conventional medicines & treatments for my husband & family as they have no confidence in anything else. I decided though, that if I'm ever told that there's nothing more to be done, I will go completely alternative. I'm already vegetarian and do yoga & meditation most days but I would become more devoted to it.

I'm not telling you to do this but it is another option & options always give us hope.

Huge hugs & love to you.

Irene xxxxxx

Yes, I also dabble in alternative "stuff" but I am at the stage where I don't feel hungry and can no longer do Pilates and all that research stuff is just all too much effort. I sleep several hours a day with no effort!!All this has happened in the last three months. I no longer recognise myself!

Jenny

I hope you find the courage to see this journey through but if you're ready to end the journey, then I hope you find the courage for that too. It takes great strength not weakness to know when you're ready to hang up your fighting gloves.Love & light xxxxxx

Hello Jenny , I hope you are feeling more positive though you are having a very tough time . Taxol is one I can recommend as I had it 3 years ago ; yes side effects not fabulous but continued for months until last two doses were not tolerated .Thinking of you and wishing you strength, and love . Go girl!! X

Hugs from Los Angeles, California 🥲

Is Avastin a possibility? I am so sorry and will pray for you. ❤️

27-359 profile image
27-359 in reply to Leniko

I have already had Avastin!

I would look for a trial!

I think I will try the Taxol while I look at available trials

Newbie_2020 profile image
Newbie_2020 in reply to 27-359

There seem to be a DICE trial that has an arm that combines Taxol and the trial drug TAK 228. You'll be randomised to either Taxol alone or Taxol + Tak228. Even if you were selected to be on Taxol alone, you'll get a closer monitoring, as part of being on the trial.

The details, to include the locations/hospital taking part, can be found via targetovariancancer.org.uk/....

Please check with your oncologist if you are eligible and hopefully your local hospital is participating.

I hope you'll have a very good response with the next treatment of your choice.

27-359 profile image
27-359 in reply to Newbie_2020

Thank you for that information. I will look into it.

27-359 profile image
27-359 in reply to Newbie_2020

I have looked at the DICE trial and it seems to be closed now.

Newbie_2020 profile image
Newbie_2020 in reply to 27-359

Sorry!

The oncologists are usually up to date with what’s available. I hope something suitable is still going on and will be offered to you.

Take care

I’m having weekly paclitaxel at the moment. It’s been pretty successful. I was sceptical to start with but where there’s life…My tumours are currently stable. I am managing with anti-sickness. The weariness , as expected, is worse for a couple of days following the treatment but I can make the most of the other days. I have 3 weeks on, one week off, which is a bonus. The consultant is keeping a close eye on my results ( my CA125 went down from over 4000and levelled out at around 590 and has since gone up to 1000 and down again) . There is a stubborn tumour growing but it only small at the mo(3.7cm) CT scans are being used to monitor any changes.

Keeeep cuddling! My husband and I are separated. He couldn’t cope!🤦🏼

Sorry to hear your husband was found wanting! I wish you all the best with the Taxel and am reassured to hear that you are coping with the regime.

Jenny

Yes take the weekly taxol. I have grade 3c and taxol my last chance had it for a year last year and no problem every week and no side effects except hair loss which I am used to after 8 years of treatment. I’ve had 7 good months without treatment and ready to start again. If you have no quality of life on it, then stop, but I would try first, good luck

Thank you so much for such a positive post. I have woken this morning ready for another weary day filled with worry and paracetamol, and feel a wave of hope. I heard yesterday that I start the Taxel regime the week after next, so onward and upward!

Jenny

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