Platinum resistance - please advise

[Lou53]

Please some one reply to my post about platinum resistance. I am beginning to panic about why no one is responding.

Thanks,

Louise

[Yoshbosh]

You have to give us a chance, Louise! Not everyone is on line at the same time - replies can take a little while sometimes. Don’t panic ❤️

What would you like to know? I’m technically platinum resistant, and am on a clinical trial at the moment. I was also offered weekly taxol. There are still options.

Vicki x

[Lou53 in reply to Yoshbosh]

Thanks for replying Vicki, I don't know what l want to know in any detail. To be honest I'm just scared that things seemed to be going so well and then I get recurrence after just 3 months so I'm still adjusting to that. I'm trying to stay positive but it's a struggle. I'm thinking now that there will be a very short time after any treatments until the next recurrence, so no time to recover really.

I'm nervous of the Taxol as I still have neuropathy in my feet and my legs were really affected by Taxol in the first treatment- pains in my legs and couldn't walk for a few days after each treatment.

On the one hand I am so grateful to be offered treatment and on the other I am dreading it. Walking is a big thing for me- every holiday and weekend used to be spent hillwalking with my partner. It's a big adjustment and a big loss.

Sorry if this all sounds a bit self absorbed.

What has your experience been with recurrence?

[Yoshbosh in reply to Lou53]

Hi Lou,

I understand your worries about taxol. I had an anaphylactic reaction to it in my second session of first line treatment. However, I’ve been reassured that the weekly dose is less harsh than the big dose given three-weekly.

As for me, I’m on my third line treatment now. I had carbo/docetaxel first time, recurred about 10months later and had carbo/gemcitabine, then recurred about 5 months later (hence platinum resistant). I’m now on the ONX 0801 trial at the Royal Marsden, but it’s too soon to say if the drug is working because it’s only been one ‘cycle’ so far. I’ve signed consent forms for 2 more pre-trial assessments of other new drugs for platinum resistant cancers - so you see, there are other choices!

Which hospital are you at? Is it worth asking for a second opinion from somewhere like the Christie in Manchester, or the Marsden in London, or one of the other big cancer centres/research hospitals? Your local oncologist won’t be offended by you asking, and you may learn something useful from the appointment. I guess it depends how urgently they feel you need to start treatment again - if they (and you) are OK with a delay of a couple of weeks, then you have nothing to loose.

Vicki x

[Lou53 in reply to Yoshbosh]

Hi Vicki,

I am very lucky that my local hospital is the Christie and I feel confident in their advice to me. They have said there are no trials for me at the moment after taking me off the immunotherapy trial. I'd be interested to hear about the other trials you are doing pre assessments for.

I see them on Wednesday and hope to get a few more answers then.

Good luck with your trial. I hope you get a positive response from it.

Take care,

Lou x

[Yoshbosh in reply to Lou53]

You are in good hands already - so that’s good! Have you looked at the Cancer Research UK search facility for clinical trials - it will give you an idea of other trials on the go at the moment.

As I said, I’m in ONX 0801 at the moment, which requires patients to have the ‘alpha folate receptor’ present in their blood, and needed additional testing for. The other trial I have signed up for pre-screening is another alpha folate one, but with a different mechanism, and one looking at a drug called SRA737 which is a Chk1 inhibitor (whatever that means!).

Vicki x

[Lou53 in reply to Yoshbosh]

Thanks Vicki I'll look into those and ask my oncologist about them on Wednesday.

Lou x

[coksd in reply to Lou53]

I understand your concerns about weekly taxol too I know its less harsh but still I would avoid it too if there was another option , what about immunotherapy prembrolizumab would this be an option you could discuss with your team,

[Lou53 in reply to coksd]

Thanks I'll have a look at that immunotherapy drug. I hadn't heard of it.

Lou x

[coksd in reply to Lou53]

I was told here in Ireland 2 weeks ago by a registrar its expensive so you have to have exhausted other options and they need a good case to get it,

[Lou53 in reply to coksd]

Okay, maybe some thing for the future then. Thanks. X

[Kryssy]

Hi Louise

It is obvious that you are in a panic but as Vicki says, we are not logged on here all the time. We have to get on with living with cancer - emphasis on the living. There is a wealth of information here on the forum and if you make use of the "search my Ovacome" box - top right - you will have all your questions answered. Some of the information goes back years but it is still relevant today. Often, new girls come along and ask the same questions that have been answered just a few days before - I've done it myself at the beginning. It is not that no-one wants to reply to you but using the search can help you so much.

To ease your neuropathy try Alpha Lipoic Acid and/or L-Glutamine. Lots of information here. I've used it myself and it's my saviour.

Try not to panic. Easy for me to say I know but what will be will be and no amount of panicking is going to change that. Good luck. xx

[tara108]

Hi Louise. I totally understand your panic when we need answers and support. It's so hard especially when we get unexpected and bad news or we are going ok and then it suddenly all falls to pieces! We can feel alone and unsupported even when another part of us knows we are not. We are all here for you and each other. I sometimes forget I am on a completely different time zone to most of you!

I do type in a topic on the search bar at the top right hand side and there are often answers there or ask my oncologist who often isn't available!

The Ovacombe nurse there is fantastic to ring. I have called her twice from Australia as she is so fantastic! I think her name is Anna? but I have chemo brain. LOL

But I think the hardest part is the not knowing and uncertainty that goes along with this disease. It is incredibly difficult when we hope so much for a remission and to stay chemo sensitive etc. after going through so much. It's not fair and it's tough but here we all are supporting each other. So thinking of you and hope you find your next step soon. Sending big hugs from Oz.

[Lou53 in reply to tara108]

Thanks Tara. As you say the uncertainty is hard. Having recurrence so quickly after first line treatment has floored me. I was doing quite well with positive thinking before that. I knew a cure was unlikely but hoped for longer than 3 months remission after my NED- not even enough time to get over the side effects. Ascites is very debilitating and I know that has really affected me as well.

Thanks for your support and tip about the Ovacome nurse. Wishing you all the best. X

[harpist_UK]

Hi Louise - I am platinum resistant and have been treated with the alternative platinum drug, cisplatin as part of the Rotterdam regime, which they do at the Christie. It is a tough regime but seems to have reduced my CA125 significantly - just awaiting scan results. There is a trial called the Forward1 trial especially for platinum resistant ladies - I tried to get on it at Preston earlier this year but failed on one issue (there were quite a few hoops to jump through to get on it). If you are going to the Christie they will have options for you, so trust the team! Wishing you all the best. x

[Lou53 in reply to harpist_UK]

Thanks harpist. I know I am very fortunate to have the Christie as my local hospital and I do trust them. I have seen your post previously about Rotterdam regime - so pleased for you that it is bringing down your CA125. I see from your profile that you walk the Cumbrian fells- me too when the ascites and neuropathy allows! Good luck with the Rotterdam. X

[harpist_UK in reply to Lou53]

Your fitness will stand you in good stead! I can't imagine climbing a hill at the moment as it has taken a bit longer than I expected to get over the Rotterdam, but hopefully in due course I will get there. x

[Cropcrop]

Don’t panic lovely, you only gave us an hour between your posts, when you’ve been with us a little while longer you’ll realise that you will always get an answer once somebody who has relevant experience has read your post. The wealth of knowledge here is superb.

You’re being cared for at possibly one of the finest cancer centres there is and they will come up with a plan for you going forward.

Write down all your questions, fears and symptoms before you go back to clinic, in my experience they always ask if you have any questions or need anything explaining further so they’re always happy to interact with us and take on board our thoughts and wishes.

I hope you are now feeling a little less anxious and are able to go back with a positive mindset.

Let us know how you get on ❤️Xx Jane

[Lou53 in reply to Cropcrop]

Thanks Jane. I know I'll feel better after my clinic appointment this week. X

[Lily-Anne]

When I first recurred I was desperately looking for someone to say oh that’s fine you might have it back but it’s going to go away never to return again. I know now that not only can nobody give me that reassurance, medical professionals included, but there is no pattern with OC we all have a different journey. There’s no crystal Ball 🔮 I seriously wish there were

I had six sessions of carboplatin last year. I’m now considered platinum resistant. Although I wouldn’t have chemo again anyway. The general rule according to my oncologist is if you recur in less than six months then you are resistant to platinum. He said common recurrence is 18/24 months and my second recurrence did fall in that time frame.

There are so many new trial drugs available if you are eligible it’s worth pursuing

Which cell type do you have?

LA

[Lou53 in reply to Lily-Anne]

Hi Lily Anne and thanks for replying when there's so much going on for you. I have high grade serous of fallopian tube origin. The thing that has upset me is that I had NED at end of surgery and chemo and was really hoping for a couple of years before recurrence but only got to 3 months. My tendency to ascites and the neuropathy is debilitating and makes it difficult to do the things I want. I take your point about 🔮 not knowing my future! I am trying to convince myself that recurrence so soon is not really bad news.

Anyway, I will adapt.

I hope you are getting more support with pain management and breathing.

Louise x

[Lily-Anne in reply to Lou53]

Recurrence doesn’t have to be bad news. I had 3 years Clear then 2 years. I recurred in May 2017 had chemo but it’s now Aug 2018 and despite all the crazy ups and downs and infections etc it just goes to show that you can tick along. Look at Kathy her 3rd recurrence was years ago. On CSN site there’s a lady who recurred twice after 3 months and is now 3 years along after treatment without any new problems.

Try not to worry

Xx

[Lou53 in reply to Lily-Anne]

Thanks Lily-Anne, these give me hope and that's basically great help right now.

X

[Jessica-DianeB in reply to Lou53]

I have had the same journey. I recurred 3 months after 3rd line. So was plat resistant. Then added to that found out I was BRCA negative. I am heading for 3rd line treatment and have still here 2 years on.

I grieved for a long time over the 2/5 year prognosis as I had so many plans for the future. You find as you go along while still heart breaking that your not going to be that ‘miracle’ you thought when diagnosed. But you WILL find miracles in getting through just with setting and achieving smaller goals.

Keep an eye on your mindfulness, the NOW. In a way thank goodness we any predict the future but we humans are always able to make up tragic scenarios with our minds!! I do it still. But mostly an claw it back xx

[dryden1 in reply to Jessica-DianeB]

Jessica, I have just read your profound insightful perspective . in THE PAST I Was told by a student of mine that I inspired her and that meant so much to me at the time and I have to say I find you an inspiration.i AM WISHING FOR A MIRACLE FOR YOU . Love Chris

[Jessica-DianeB in reply to dryden1]

Ah thank you Chris. Glad you could read through my silly predictive text!! Xxx

[Neona]

Hi Louise, have only just seen your post. I recurred during frontline chemo and was offered a phase 2 trial or caelyx. I went for a second opinion and am now on a phase one trial at the UCLH Research Facility. They start new trials all the time so I think you should keep asking, do your own research- look up clinical trials on google, ask why you don't qualify. Weekly taxyl works for many- I wasn't offered it as it did nothing for me on frontline treatment. There are new targeted treatments - various kinds of inhibitors- mine is an ATR inhibitor- which work on the cancer cells without affecting normal cells.

[Lou53]

Thanks Neona, starting to wonder if mine was recurrence or remaining undetectable disease. Good to know about your treatment and I will keep looking for trials.

Take care,

Louise x

[kat98116]

Hi Lou. I can definitely relate to what you are going through. I recurred after just 4 months after front line. I, too have Fallopian tube. I was in near complete remission (some minor caking that my onc thought was scar tissue) with normal CA125 after 10 rounds of carbo/taxol and debulking surgery. To put it mildly, my "early" recurrence threw me for a loop and sent me to a dark and confusing place. After ruling out a trial (insurance issues) I have started on Doxil (Caylex) plus Avastin, which is supposed to help a lot with the ascites. I won't know if it's working just yet, but I do feel better symptom-wise. I agree with you about it possibly being undetectable disease that wasn't yet visible on a scan. My gyn/onc was very upbeat saying there are many things we can try. I personally think that carbo/taxol kicked it to the curb, but not quite far enough. Let us know what you decide, and also know you are not alone.

Hugs from Kathy in Seattle

[Lou53]

Thanks Kathy, you're experience with recurrence after first line treatment seems similar. As I am an NHS patient the choices will be limited (don't think avastin is funded for my situation) but I am still asking questions about the recommended treatment of weekly Taxol and they know I am keen to hear about any trials. Interested to hear about your treatment and I hope the early signs with symptoms is accompanied by a strong effect on the cancer.

Take care,

Lou x

[January-2016-UK]

Hello Louise, in October 2016, I recurred after three months having been NED and since then I've been on a Phase 3 trial (Javelin 200 - immunotherapy). I was on that trial successfully for six months before new growth meant I had to leave the trial and then had six months with very slow growth before starting weekly taxol last October. I finished that in March this year and again have had about six months with slow growth. I am about to start a new trial.

I too suffered from peripheral neuropathy and had a 20% dose reduction of Taxol for the last two treatments. Slowly but surely things eased somewhat although it never entirely went away. For weekly taxol we were watching it closely, as will the Christie for you if that's the option you chose, and although I did have some increase in symptoms nothing at all like those I suffered during first line. It may be that the weekly lower dose is easier for some to cope with. I am now back to about where I was when I first started weekly.

You are under the care of a great hospital and there will be many options for treatment and / or for trials.

All the best! Helen

[Lou53]

Thanks Helen. Interestingly I was also on a trial for Avelumab. Such a shame it didn't work for either of us. But yours and other replies have helped reassure me so I'm prepared for the next stage of the journey.

Love the picture of your hive and wildflowers. Bet the honey🍯 is lovely!

Lou x