Summary and ResearchEdit
A Study of LY2801653 in Advanced Cancer
Details regarding the trial available here.
Research on LY2801653:
Participant Experiences and SuggestionsEdit
Member Kris00j from CCF Forums:
- I met with my new onc today. You like those words, Lainy, Marion, Pam???
- Her suggestion: a phase 1 clinical trial using no chemo. This drug, as I understand it, is to work with the body to keep the disease stable. I can handle that, as I am not "sick" and was not looking forward to chemo. If we can keep it stable for four months or so, I can revisit radiation!!
- I am so excited, but need to read all 27 or so pages.
- It looks like there are side effects, but not as bad as chemo. And they will need to do an endoscopic biopsy thru my stomach wall to get to the new node to have a biopsy done. They are also using genetic testing to see how "we" handle the drug...
- And if it doesn't work, the new node is not in that dangerous an area where we need to worry immediately. If it doesn't work, we go to the evil that we know: chemo. More on the trial as I learn more.
- April 2013
- I have been approved for the clinical trial! Biopsy is scheduled for next week and I start the trial the following Monday, the 22nd. I can't wait to see how well this new drug works!
- April 2013
- I started the trial today. It was a long (can you say long?) day! 8 hours of not much... Blood work, wait..... Meet with onc.... Wait..... EKG and first day of pills..... Wait 4 hours UGH! And I forgot my chargers so my iPad died and my phone was about to!! Then another EKG and I was FINALLY free to go! Back tomorrow for 1-2 hours.
I will definitely keep everyone in the loop about this as I'm very hopeful we will ALL benefit from the results!! Just me first! -- I like to be first!!
I'm hoping for little to no side effects.....
- April 2013
- 6 days in and no side effects at all!! Yippee! Scan is set for mid June so won't know much until then.
- May 2013
- Hi everyone.
4 weeks in and my numbers are good. CA19-9 is down to 39.3!!!!! Normal is 0-37 here. Last month it was 48.8, so I'm hopeful!! Biggest side effect? I've gained 10 lbs. and have dry skin patches and patches of breakouts on my face, hairline and scalp. And my hands are bloated a little. Usually goes down during the day, but a pain for wearing rings! Lol
I'm hopeful this is working. Can't wait for 4 weeks to see what the results are on the ct scan.
- May 2013
- Haha! I'm not uncomfortable, except when I try to wear any of my new clothes from the past few months! Ugh!! The scalp is itchy and annoying but nothing compared to SIDE EFFECTS!! I'll take it any day! As for bloating in hands... I've switched my rings down a finger! Haha
- May 31 2013
- New side effect: my feet are HUGE by the end of the day! And BUZZY!! And the eruptions on my face and scalp are worse and itch like crazy! Still not bad enough for me to quit, and hopefully not enough to have them stop it. I find out Monday. Maybe they can lessen the dosage....
- July 2013
- End of cycle 3 and results are in... CA19-9 is NORMAL!! 35.7!! Weight is still climbing. Doc is happy! So am I! My new clothes are upset, but that's life.
No ct this round so have to wait another 4 weeks to find out, but everything points to stability and inactivity.
Onc gave me a prescription for my face and its better. I've been washing my hair with Selsun Blue and the scalp is better, too. Still have some pimply itchy things, but nothing like it was. I also went back to washing my hair almost every night. I have been trying to do every other day for the past 5 years, but I guess my new skin type says "CLEAN"!! So I will!
The swelling is better, too. Still swollen in morning... Enough to change the fingers of my rings, but after a couple of hours, they are back to normal.
I will take these minor discomforts any day!
- October 2013
- An update on the trial: I am 6 cycles in. A cycle is 28 days. I just had another CT Scan and there is shrinkage! It is 4mm smaller. That's great news since the drug is built to stabilize the cells! And the CA19-9 is lower again! I'm in the "normal" range! Yeah!
The side effects are... I've begun losing my hair, but I still have tons left. I was worrying about going bald, but have decided to stop worrying. And my left ankle area is swollen and does not go back down. That's it. I'm extremely happy with this trial!!
- October 2013
- I actually don't know about cc patients, but I have met with a couple of the colon(?) cancer patients, and except for dehydration because she won't drink enough, we all seem to be doing well.
I have met cc patients, but their numbers weren't good enough for the trial. I don't understand that. If someone is sickly but wants to attempt the trial anyway (due to lack of options) I think they should be allowed to be a guinea pig to see if it would reverse the progression in severe cases. But the drug companies call the shots.
- December 2013
- Hmmm. I haven't had toxicity problems, as far as I know. So that's good! And I just started cycle 10. I'm perfectly happy with it so far.
I thank you for the further info which I was unaware of. I'm hoping some members may be able to benefit from this trial, too.
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