Immunotherapy trial question

[Calluv]

I’ve been tested for acceptance into an immunotherapy trail but as of now I don’t have enough measurable disease, go figure. Please forc thy at but frustrated as my scan did show evidence of disease. I’m feeling ok but I do get tired and I’m very aware of my tummy and every little tweak. Not sure if it’s in my head or not. I have been told that as long as I feel good just wait for any treatment and just enjoy myself. A bit like telling the condemned man to enjoy dinner, lol. I do have a good outlook and I’m not a drama queen but after dealing with this stuff since September 16 and the after effects of two lines of chemo, even though the last one didn’t work and I became platinum resistant.

I go back in 6 weeks to be retested, I’m as healthy as a first except for cancer, go figure.

I hope I’m no worse obviously but I know in the future it’s inevitable and I abhor the thought of more chemo. Hi he trial doc says he hat the immunotherapy can have all sorts of side effects and sounds almost as scary.

It’s two drugs, one intravenous every three weeks and a tablet every day. Has anyone had immunotherapy and what has been your effects. I’d appreciate some feedback, as I’m feeling like a guinea pig right now and they are just waiting for me to get sicker. They also want me to stop all my natural therapies which I think have kept my body and immune system as healthy as it is despite all the poisoning I hat it has has had. My oncologist was not against me taking supplements or my other therapies as he could just laugh and say if it made me happy, all good. Although he couldn’t argue with the fact that my bloods were always normal and apart from the fatigue I had no mouth ulcers, bad skin or other things and always looked really healthy through treatment.

Wow, I’ve gone on a bit. Thanks for bearing with me

Cheers

Ps I’m not BRCA anything and this is to see if these drugs work for ovarian as well as they have for other types

[Calluv]

I’ve just read my posts and there are quite a few typos. Auto fill can be a pain,lol. I hope you can figure out what m trying to say as I don’t know how to go back and correct my post

[Katmal-UK in reply to Calluv]

If you click on the 'more' tab at the bottom of you post you will be given the option to edit x

[Calluv in reply to Katmal-UK]

Thanks for that. Sometimes I’m all thumbs on my phone

[Katmal-UK]

Hi, I think taking part on a trial is apersonal decision . Ive been on three, mainly because Im a 'I'll try anything' person in the hope it might work for me and then others. I hope you make the decision thats right for you. Bear inmind even if you decide to take part you can stop at any time xx Kathy xx

[thomas62]

Hi Calluv,

You look brilliant - as does your partner. Keep it up. Can I ask which immunotherapy trial is this and where are hopefully going to have it? Thanks. Gwen Xx

[Calluv in reply to thomas62]

I’m not sure of the name. I’m in Brisbane and it’s through icon at the mater

[thomas62 in reply to Calluv]

Thanks for your reply. Gwen x

[Hidden]

Has your Oncologist advised you of what are your options if you don't go on a trial? I was on watch and wait for 8 months, and it is very hard, after my 1st recurrence I was offered a trial but didn't qualify in the end. I am now on a Parp inhibitor. Good Luck x

[Calluv in reply to Hidden]

My last ca 125 was 88, he says that I should forget about that and go on how I feel, if I feel good just wait as opposed to any treatment like chemo which as we know makes you feel like dodo

[Lindaura]

Dear Call,

I can definitely sympathise. It’s more than just a drag to have to wait for “symptoms “ while we suspect our cancer is spreading. And we don’t want this cunning disease sneaking into our lymph system or cramping our bowels.

Nevertheless, you have to wait that bitter 6 weeks for your next scan.

What is your CA-125 market doing in the meantime?

Also, do you have a name for this trial?

I am in the DICE trial, but after 5 months and a promising start, I am progressing, ever so slightly, but enough to know the treatment is not stopping the cancer, although it has slowed it down.

Let us know the name of your trial or any other info and meanwhile, be patient, because there isn’t much you can do at this point, except wait for that scan.

Best wishes,

Laura

[Calluv in reply to Lindaura]

Icon in Brisbane but it’s all over Australia apparently

I’m sorry I’m new to all this and I don’t have all the info

[Maxjor]

Hello Calluv--beautiful picture of you--and hubby. I have been on two immunotherapy trials and neither worked, although I do know they work for some. Do you know what Phase the trial is? Phase I, they do not have any idea how it will work for you--Phase I's are for figuring out dosage for humans. But with one phase I and one later phase, the common thread for me was fatigue. I do not get fatigue with chemo--go figure--but with immunotherapy, it was quite prevalent. I think due to the fact that all our cancers, although OC, are different and therefore, different treatments work for some and not for others. Sorry I could not be more help but I did want to wish you luck and hope if and when you need treatment, this one is easy on you! And does the trick! oxoxox Judy

[Calluv in reply to Maxjor]

Thanks so much

[mizpurple]

I just spent two years on immunotherapy (Keytruda) which was apparently successful in knocking down two small metastatic tumors near my colon. My original dx was mucinous ovarian. The downside was that I experienced two of the more rare side effects - first, it mistakenly targeted my thyroid, but second and worse, it attacked the beta cells in my pancreas and triggered type 1 diabetes. I don't say that to discourage you or anyone from trying immunotherapy if you otherwise are out of options and have active disease, as I did. Other specific drugs may not have those risks. Just be aware of any possible downside and make sure you feel the risk is worth the potential reward. Best wishes! Deb in Colorado

[Calluv]

Thanks for your reply Deb

[Grace123]

Hi I just wanted to say that I was in a similar position to you. I was diagnosed with a recurrence in Sept 2019, and was told that having a clear cell recurrence my best bet was a Phase 2 immunotherapy trial using Pembrolizumab (Keytruda), as my type of cancer tends to be chemo resistant. I had 2 inconclusive biopsies last year, as the growth, spread and position of tumours made it difficult to get adequate core tumour samples. I had a waiting game, waiting for the tumours to grow sufficiently to get a definitive biopsy, which I finally got in mid-January 2020. I was also told that that the spread and growth was much slower than expected for clear cell and I was feeling very healthy, despite the metastases. I put it down to Chinese herbal medicine which I was having, but had to stop before starting immunotherapy (due to potential drug interactions & skewing trial data). I started immunotherapy in late Jan and have had 2 infusions so far, 3 weeks apart. I have been unfortunate in having side effects from the start like fatigue, generally feeling unwell, nausea (controlled by medication), not enjoying eating and drinking much, loss of appetite - so no dangerous side effects, but a notable reduction in quality of life for the first 10 days or so after treatment. I shall have another scan and biopsy in 2 weeks time - so will get a preliminary sense of how it's going so far. After coming to terms with the distress of having to postpone treatment, I felt grateful for a longer period of time of good health without side effects. I'm sharing my experience, but we are all individual and respond differently to different drugs. I wonder if you need more specific information from your oncologist to help you understand why he's recommending you waiting until you have symptoms to start treatment, which always feels so counter-intuitive to us. Maybe you could ask him or her to go through in more detail the risks and benefits of waiting or starting treatment to enable you to understand the situation better.

Wishing you the best of luck with everything x

[Calluv in reply to Grace123]

Thanks so much for your reply

I’m actually glad to not be rushed into treatment as it makes you feel so sick and it’s nice to feel reasonably good even though the stress is a killer

I too think I’m doing well because of alternative medicine and it really annoys me the medical doctors being so dismissive of it

I don’t look forward to the trial making me feel sick again I think I would rather just wait and enjoy being good for as long as I can

I read so many awful stories on here that really scare me about treatment and there side affects. The 18 initial weeks of treatment were awful and then again the next 4 though thank god they were 3 weeks apart, were bad enough. I’m probably in denial and don’t want to face the fact of what this disease does to you

I just want to be normal again and enjoy it

[Grace123 in reply to Calluv]

I'm glad you found my response helpful - & I completely understand the feeling of just wanting to be normal again and enjoy it. I was wondering if you're getting any psychological support - I've been having therapy for a few months and find that extremely helpful in being able to express all that's going on for me with support to come to terms with it all - & let's face it - what we're going through is huge - the psychological aspects of cancer are rarely supported, yet the whole experience is traumatic.

Also to mention that it seems I've been quite unlucky with the side effects - most people on the same drug as me are not experiencing as many so soon.

Wishing you all the very very best with your journey - may your alternative medicine keep you healthy for a really long time! As a matter of interest what alternative medicine and supplements are you having? xx

[Calluv in reply to Grace123]

Hi grace

As it turns out I received a call from the trial doctor yesterday and I’m not eligible as it turns out I’m platinum refractory not resistant. One would think they would have worked that out at the beginning??????

Anyway, I’m now glad I didn’t stop taking my supplements as it turns out. They had wanted me to because of the trial but I thought that as I wasn’t in as yet I wasn’t going to stop till I was.

I receive bio resonance treatments weekly and take various Chinese herbal supplements, they are from the Panaxea range and vary from time to time, Chem 1, Inversion, cell protect are some of the names. Tanshins is the latest one, also B12 and magnesium. I’ve also started CBD oil. When I went through my original treatment I looked really well and my bloods were very strong and in the normal range also my immune system was very strong and has been all along.

I’m to go back to my original oncologist next Tuesday the trial doctor said so we’ll see what happens then. Trial doctor had said that as long as I feel good I should wait and not do any treatment, let’s see what my regular oncologist says, should be interesting .

No, no counselling but I’ve started yoga and I enjoy that and the spirituality of it. I may look into some counseling as soon time goes on I think it would b good for me

Wishing you love and peace and the best health possible on my this dreadful journey of ours❤️

[Grace123 in reply to Calluv]

What a pain that they didn't clarify eligibility right at the start - those kind of things do my head in! But great you've continued on your supplements and alternative therapies which are obviously helping you a lot. Thanks for letting me know what you're taking and doing - I'll definitely look into them. Wishing you the very best with your oncologist appointment next Tues, and as you go forward with all this - may you maintain your good health despite the cancer! xx