Update on LY2801653 clinical trial
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I am starting cycle 12. They have added some side effects to the list. Edema and fatigue are most common, along with something else which I can’t remember… And nausea, diarrhea, constipation are less common. No mention of the acne like skin or hair loss.
My nurse today was distracted by having to fill the pump. So distracted that I didn’t notice she forgot my labs!! lol
And I have the beginnings of a UTI so I’m on Cipro. So in 2 months my meds have doubled! We talked about the edema and the fact that I can’t seem to take a day off: the swelling comes right back, not that it goes away completely. But kidneys look good so I will keep taking it.
Scan yesterday shows nothing new. And stability. So I’m happy there. CA19-9 is up a bit to 39. Guess I gotta lay off the meat for a bit.
All in all, a good day!Carl, it was my pleasure to meet you and Lynn! And I took the subject off cc to make you two laugh and relieve some of the stress… I know how hard those long days can get. Even a brief hour of smiles and laughter removes us from the stress of thinking “chemo”, “cc”, etc… And laughter is the best medicine! If some of your days are Tuesdays they might coordinate. Otherwise, we might just have to have me crash the party again.
Kris, Carl and Lynn, it is so beautiful that you all got to meet. I think it is very exciting to meet another member of our family and just gives one the best feeling in the world.
Thanks Kris and Marion,
We are excited and hopeful about this trial.
It was such a pleasure meeting Kris in person yesterday. We talked about the trial. And we all agreed what a terrific oncologist we have in Dr. Denlinger.
We also had an enjoyable discussion regarding multiple non-ICC topics. We especially liked when Kris described how she got involved with karaoke and how she has gone from knowing one song to being a top entrant in karaoke competitions. Way to go Kris.
Thanks Kris for taking the time to stop by and meet with Lynn and I. We look forward to seeing you again very soon.
Carl
Kris….so glad that you were there in support of Lynn and Carl. Who better than you? I wish for Lynn to benefit from this trial as well as you have, dear Kris.
Hugs,
MarionWe have to add Lynn to the trial. Her husband, Carl, visits this board. She began the trial last week, I think. I visited them today. She is on Phase 2 which means she gets cisplatin also. Today was chemo day so I spent an hour or so with them and tried to keep her mind off the cisplatin! I was there at the beginning, tho, and after they administered the pre chemo meds, I knew she’d get tired. So I left her to sleep. What a nice couple of people. I’m glad I went!
I met with Dr. Denlinger yesterday. It’s so great to actually say I had a good visit with my onc! For those of you who remember, going to see Dr. Kemeny was like pulling teeth.
I’m having some minor ailments, mostly edema in my legs. The swelling is almost to the knee now, so we are trying Lasix. Not a fan of the side effects, but I hopefully won’t have to take this too long. We have put off giving me Lasix, but it’s at the point that it’s pretty necessary.
We also talked about genomic testing. She is going to check with pathology to see if there is enough sample left for the testing. Also, possibly try to get some of the original, pre treatment samples from Sloan Kettering from 3 years ago.
She is also going to see about setting up a support group. There are many cc patients at Fox Chase, many of whom she sees. I think she has about 20 patients. I told her I would deal with the counselor or whoever to try to coordinate a good time to gave these meetings.
As far as the testing goes, many hospitals charge $3-5000 for it. She sends her testing out to another company, which works with insurance and the patient to get the testing done at much less cost to the patient. So hopefully Medicare and my part B cover it. It will be nice to know the information, if only, for now, to help others determine what chemo will work better.
I’m hoping to hear soon! Here’s to the future of medicine!Oh, and my CA19-9 is 32!!!!!!!
Kris I am glad things are going so well for you and having few side effects on top of no new growth and no new mets. Awesome news. I admire your strength and inspiration. You are such a fighter! Hugs.
Porter
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