Clear Cell Trial Update

Hi everyone, hope you’ve all had better start to the new year than me. In November I completed the first leg of a trial. Beginning of December I developed a blood clot in my heart. For this reason I wasn’t able to continue on the trial because it wasn’t clear if the trial drug caused the clot or the cancer. I was put on warfarin but unfortunately while on warfarin I developed a blood clot in my right leg. This severely limits my treatment options for the future.…my oncologist has given me time to sort out the clotting issue but I’m definitely off trial. Incidentally my last CT scan showed stable disease. I don’t know what the future holds for me but I’m keeping positive xx

[carrotmunch5]

Hi Cazzar. I am so sorry you weren't able to carry on the trial. I was in the similar situation in December. Thing was I didn't even get started... I developed blood clots in my right lung again which disqualified me from the trial I was going to go on. Now I am back on chemo, going well. Trial I was going on needed to have at least 3-6months clear from blood clots. By the time I am clear from blood clots, there might be another trial which suits me, that's what my oncologist thinks. So I am quite optimistic I am giving chemo chance ( I am on Gemcitabine and on it before with clinical trial drug and worked).

As for blood thinners they changed my meds again to injection again. That was due to I developed another clots in my left lung too. Boo!

Hope your clear cell remain stable. And your blood clots burst soon.

❤️🙏❤️🙏 Sending you healing light.

[Hidden in reply to carrotmunch5]

Hi Carrotmunch5,

thank you so much for your reply. I’m sorry to hear you didn’t get on the trial, it’s must be so disappointing for you, but I can feel you have a positive outlook which is brilliant and really good to hear.

Hope you don’t mind me asking but did you develop blood clots while you were already on anticoagulants? I’m also on injections to thin my blood. I’m certain my blood clots are dispersing, the pain in my leg has gone and I’m a breathing much better.

I will ask about gemcitabine at my next appointment. Right now I’m taking it easy, having the blood clots has taken its toll on me and I need time to recover.

Please keep in touch and let me know how you get on

Lots of love and positive thoughts to you, from me Carol xx

[carrotmunch5 in reply to Hidden]

Hi Carol 😊Yes, I developed blood clots whilst I was anti coagulant. Cancer thickens blood. So they changed not only once, twice now. I do feel breathing better, no pain in my chest anymore. Still, tired quickly and out of breath quickly but nothing like before when they appeared. Glad to hear you feel better too.

Yes, I was on Gemcitabine with clinical trial drug before. And it worked. But they don't know which worked to my tumours to disappear. So my oncologist wanted to give a shot to Gemcitabine see what happens. I am on steroids so not feeling side effects much which is great help. Function like a human being 😊

Yeah, take it easy and slow. Let your mind and body to heal from blood clots.

Thinking of you.

Norie xxx

[Doggies221]

so sorry to hear about the blood clots, Cazzar. I read that taking daily aspirin helps when one has clear cell. In addition, wouldn’t it be helpful to test your specific mutations through next generation sequencing test and do target therapy w drugs specific for the mutations than do chemo not knowing if it’ll work? What about targeted radiation like MRI- targeted radiation? These are the types of treatments I’ve read as effective for clear cell. There’s a trial that uses targeted drugs depending on the specific mutations:

clinicaltrials.gov/study/NC...

Hope this is helpful and wishing you the very best in managing as well as possible!🍀

[Hidden in reply to Doggies221]

Hi Doggies221,

Thank you for replying, I haven’t heard about aspirin and clear cell, I’ll have a look into that and the other information you’ve sent me.

As always the comments and support from everyone are always welcome and help to keep me positive

Love and best withes for the future, Carol x

[Bananasmoothie]

So sorry to hear about your clots & the impact re treatment and the trial. Really good to hear that you're starting to feel better & your CT's stable though. Long may that continue! Thank you for keeping us updated. I sometimes think the problem with a rarer type like clear cell is we get more of an idea what options are out there than our oncologists may be aware of! Sending hugs x

[Mariej2021]

Cazzar and Carrotmunch 5 you have both been through so much! I read somewhere that blood clots are associated with ovarian cancer and in particular with clear cell. Apparently can be how some people first present before they are even diagnosed. I hope the clots are now under control for you both and that the treatment plans stay on track xx

[carrotmunch5 in reply to Mariej2021]

Thank you Mariej2021That was how I was diagnosed back in 2019. I couldn't breathe, out of breath, fatigued, ended up in A&E... They gave me CT scan, found I had lots of blood clots in my both lungs. Ended up in the hospital, they gave me another CT scan, then found out I had OC CC... Now, I have clots again, but not as bad. So so I am taking it easy 😄 I am in good hands ❤️

Anyway, I didn't know some present clots first than diagnosis! 😊 Thank you for your comment 🙏🙏🙏 means a lot.