Stopping clinical trial

[NWgirl]

I decided to stop my participation in the clinical trial. The side effects were just too much. Worse than any chemo I've ever done and I've done most of them. It's been three weeks since my last infusion and I'm still incredibly weak, still lack appetite and I'm still dealing with back pain. I've lost a little over 10 lbs in the two months I was on the trial. The thoracentesis drained a liter of fluid from my chest cavity and from the way I feel I suspect I need to have it done again. I'm scheduled for an echocardiogram next week to see if there is fluid build up on my heart. The fluid was tested and there's no cancer in it so it's just a side effect of the drug.

The thoracentesis is no walk in the park. It was extremely painful and caused chest pains for almost a week. And as I said, I suspect it needs to be done again.

I told my oncologist I want to stop all treatment but he said I need to get through the holidays and recover from what I've been through before I make any decisions. He agreed that the side effects were far to extreme to continue with the trial drug.

This drug may hold great promise, but in its current form it is intolerable.

[KWT]

I'm sorry you've found yourself in this position. A lot of payout with no payback sucks. I hope you feel better and have a good Christmas with the family

[bitchslapped]

You did the best you could Belle & I would have been scared from Day One. Just wish they would have lowered the dose tailoring it for your body, but apparently this is not an option. Read something the other day that reporting adverse results on a lot of clinical trials is hit & miss. Govt trying to get better handle in this area, but difficult as there are so many out there. So I guess all I'm saying is I hope they (Providence) has good tracking/reporting practices.

Best Wishes, Merry Christmas
Bitchslapped

[lhawk0730]

Belle, thank you so very much for braving what you did. You helped pave the way to a cure. This treatment may not be the answer, but a HUGE thanks to YOU for establishing this isn't it. Those answers are equally important. I want to humbly thank you for your courage and contribution. I hope you have a very Merry Christmas and that you start 2015 with strength, appetite and surrounded by peace and love.

[CRguy]

Sorry it kicked your butt Belle, BUTT you need to do what YOU need to .... for YOU right now.
Reload my friend and yes, recover from the side effects.

Christmas is the season of miracles ... so hoping there is one in your stocking this year.

Love, Peace, Harmony
I-Fives on the Journey
CR

[DK37]

Belle, thank you so very much for braving what you did. You helped pave the way to a cure. This treatment may not be the answer, but a HUGE thanks to YOU for establishing this isn't it. Those answers are equally important. I want to humbly thank you for your courage and contribution. I hope you have a very Merry Christmas and that you start 2015 with strength, appetite and surrounded by peace and love.

I'm so sorry to hear that the side effects were too bad for this drug Belle... Scientificaly I think it holds promise but that is a moot point if it is completely intollerable for patients to take. Thank you yet again for paving the way for the rest of us to figure out & make our own treatment decisions. I think that lhawek0730 expressed exactly what I wanted to express perfectly, so I just quoted her eloquent comment above. Do you happen to know if the other trial participants had just as bad experience with the drug?

I hope you find a new treatment option in 2015 which is much easier on your body. I know of a trial down here in San Diego & Stanford ("RRx-001") which had very few side effects in its Phase 1 trial and it has stabilized a number of CRC patients after chemo failure - PM me if you want the details. As a Phase 2 trial, there are a few less safety question marks than on a Phase 1 trial. It is on my own planning short-list. https://www.clinicaltrials.gov/ct2/show ... 001&rank=2

-Take care, DK

[NWgirl]

I only knew of one other person taking the drug and her reactions were the same as mine. But I didn't get updates on her after round #2 (I did 4 rounds) so I don't know if she continued to decline as I did.

I was at the point where I could barely get out of bed. It was just a matter of time - if I hadn't stopped on my own - they would have had to remove me from the trial anyway.

[kirac]

I also wanted to thank you for braving that treatment for others and yourself. I hope that you start to feel better during the holidays.

[singingholly]

I'm so sorry it's too hard to bear... I think I would have made the same decision, you've been very strong, Belle.
A hug
Olivia

[Regan]

No words to say how I feel about you Belle....and what you have done.
I wish you strength for season an beyond.

[BrownBagger]

I agree with your onc, Belle. Take the time to get better and then make your decisions.

Who knows, the two rounds you had may help keep your disease under control while you heal.

Something to hope for in this season of miracles, as CRG put it so well.

All my best wishes.

[lauragb]

Belle, I hope you start feeling better soon and then you can see what's what. Maybe you're heading into a nice break with no growth. That's what I'm thinking, hoping for you.

Take care and heal.

[Ajane]

Belle, I'm sorry to hear this. I don't know what else to say except that I hope after you regroup they find you got some benefit from the trial. Thank you for all you've done. I pray you recover quickly and are able to enjoy Christmas. Jane

[lpas]

Belle,

I'm really glad you checked in. Was just thinking about you the other day and wondering how things were going. I'm still very new to this and may not know much but, for what it's worth, I think you made the right decision about the trial. It's not like the side effects you've described are just tough to endure--they're actually life threatening. You've hung in there longer than 99% of people would have under the same circumstances. Give your body a chance to rest and recover. I don't know about you, but I get really down when I'm not feeling well. There are other, easier trials out there and easier doesn't necessarily mean less effective. I really like DK's suggestion. And please do something nice for yourself over the holidays. You deserve it.

Take care and I hope you'll keep us posted.

[skypup]

Belle, thank you for trying. Clinical trials are such a long shot for us, the patients, but are the only way forward in the overall effort. Take care of yourself and I hope you are feeling a lot better for the New Year.