kris00j
Forum Replies Created
-
Posts
-
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!!Congratulations on the wonderful news!! Shrinkage!! Love that word. And I am so happy your bloodwork is good! I think today was a great day for you!
Mary, I am on the trial until it stops working, if ever. Or until I decide to try something else.
Lainy, I have to visit mom & dad first! But maybe Feb or Mar??So I discussed this with my onc today and, while she is hopeful, she is also a little leery the commercials are misleading. I said even if its just for consults, imagine all of us in this area having access to the MD Anderson specialists, too! And the MD Anderson research and trials?? I told her I’m happy at Fox Chase, but it’s nice to know there’s a possible alternative.
Happy, happy birthday!! Congrats on being able to kiss your hubby and little princess! I wish you many more birthdays! Just wait until the “OMG! 40!!” And the “what happened? I’m 50!” Years! Lol
Mark,
Welcome to our little family. Although none of us wants to belong, it is a great source of information and support.
In answer to your question, gem/cis does seem to be the first choice for many oncs. My original onc chose gem/Ox and the tumor responded extremely well, but my body could not tolerate it for long. Some people can, though.
I was originally diagnosed in March 2011 and was never able to have a resection. After 31 months, I can tell you this… I still have no symptoms. I am in a phase 1 trial, and it seems to be holding the cancer cells at bay. I am not in remission; I am stable. I have come to appreciate that word, as I will never be operable according to the current medical community. But who knows? I’m planning on sticking around until they find a cure!
This journey has in no way been easy, but it CAN be long!Sending prayers and thanks for Toms successful surgery tomorrow!! May his surgeon have steady hands.
Patty, maybe you should talk to your onc about some of the “new” drugs. If you are otherwise healthy and acceptable treatments are not working, you might be a candidate for one of the trials of either immunotherapy or inhibitor drugs. The side effects are usually minimal, especially compared to chemo.
It might be worth looking into.
Hopefully the new chemo shrank the tumor, but with the side effects already in evidence, I’m not sure how many treatments you could get.
Let us know what the MRI results show!Amazing news!! I don’t think I could WALK a 5K race!! And after a resection?? Unbelievable! Tell her she is my hero!
Lainy knows all the tricks! Sorry you had to join our little family, but you will find tons of support and answers from so many of us.
Good luck with your PET scan and meeting with Dr. Kozloff.Elsy,
I had a fundraiser in a local restaurant that had meeting rooms. Perhaps you can find one of these, or even ask a bingo hall if you could use theirs. Then it would be much bigger if some of their regulars heard about it.
I went to locally owned bars and restaurants to get door prizes. The chains are harder to get. They have more rules.
If the weather is good, I hope I can make it up there. It depends on the time, etc. because its almost 2 hours away.I’ve met Marion, too, so I can’t do a description, either. I WILL tell you that she is short….er than me!! But then I’m 6’1″!
I wish I could remember how I got my avatar to post, as I wouldn’t mind changing mine, either.Danna,
I, too, was so busy trying to sort everything out, run to treatments, call insurance, friends, etc. that I really never had time to think beyond “what’s next?” for some time. I had my bad days, but it wasn’t until the period I call “my waiting period”, where I was waiting to do something, anything… that I found myself depressed most of the time. I did take Xanax for a while but after some time I took myself off it. I still struggle to do anything during the day… I run out to poker and karaoke most nights. So I guess I am still clinically depressed, but I’m trying to take care of it myself. I figure I have enough drugs coursing thru my system!
I think it’s natural. Unfortunately. I think if I hadn’t lost my job I would be better. So I occasionally look for part time work, but haven’t found anything yet. Hopefully soon!
I hope you can get yourself out of it and back to yourself soon.
!! We need more of it!!