kris00j
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Gee this looks kinda familiar, with the exception of dexamethasone. Wonder why my Sloan Kettering onc didn’t tell me about this?? It’s her pump, after all! (Can you hear the dripping sarcasm? I’m so glad she isn’t my onc anymore…) I BEGGED her to discuss trials!
Oh, don’t worry. I’m reporting everything!! Some of them MIGHT be side effects! The skin problems (which are minor compared to the alternative) are probably side effects.
The weight gain, coupled with the lower CA 19-9 numbers, is hopeful, according to my onc. This hopefully means the cancer is very inactive!!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
Lisa, I’ll swing by and pick you up!Cathy,
When I was on Gem, I also experienced fever. The rash, I can’t help with. I also wonder if its from radiation or steroids?
I had radiation in July 2012, and recently started a new treatment. Almost immediately I started getting dry skin patches. I now have “eruptions” and little hives in my scalp and along my hairline. Doc said it might be from new drug… Being a trial, there isn’t a lot of info on this drug yet.For the first two years of my fight, everything needed to be decided ASAP! A couple of months ago, the cancer spread to a new node, but the onc didn’t feel it was “life threatening”. So I decided to do the trial. Being otherwise healthy, I am a good candidate because I don’t NEED immediate response this time. I WANT immediate response, and sure hope this new drug works.
I have an urge to help people, especially since the diagnosis, and this is the best way I know to do it.
The biggest problem I encountered was with insurance, which is a major hurdle for most patients. I think more of us would contemplate trials if insurance companies would be cooperative.Hi all.
I updated in the clinical trials section, but just wanted to say that 4 weeks in and my biggest complaints are weight gain, bloated hands and skin rashes/dryness. Not bad. And the numbers for my CA 19-9 are lower! 0-37 is normal. Mine is now 39.3. This is the lowest it’s been! And the rest of my bloodwork is pretty good. Yay! In 4 weeks I find out how well everything is going… Ct scan set for June 14 and results on June 17.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.I’ve been praying hard for Lauren to get thru this. I posted on her fb page that last night as I prayed, I pictured Lauren while I prayed for her and a white glow surrounded her. I believe that God told me she will be okay. She has been put in his white light!!
Mary, keep fighting! Don’t listen to them! Remember, they told me last April to put my affairs in order and I’m still here.
I’m praying you get some good news: you deserve a break.
If you pray, read this. I was told to quit asking. I was told to thank God that something will go well. So when I pray I say “God, thank you for giving the doctors the knowledge and skill to get the drains or stents successfully placed so Mary gets some relief and thank you for allowing her to get the chemo to save her life!”Marion: I am in Phase Ib of the trial. Fifty or so people have taken the drug. Toxicity levels were pretty much established. Side effects have been noted. Of course, that’s a small population. But the tingling is better since I limited my liquid intake. Still more swollen in am, but at least they aren’t talking to me at night.
Great news! I’m following on Facebook!! How are things today? I hope you post something tonight because we are ALL waiting to hear!!
Thank God for his blessings!!Praying and thanking God for the successful surgery!! I have everything crossed for extra backup! I am so excited for Lauren! I wish I could be there with you.
Love, prayers and hugs!!Thank you. I hope you are happy with your decision. Sloan does have many well known cc oncs. But I will repeat my concerns for Dr. Kemeny. She is not warm, nor will she spend time with you. She is brilliant, but I needed to feel my onc was on my side, and I did not get that. I will recommend Dr. Fong if you need a surgeon. After the cancer shrinks and dies from treatment, that is. Keep positive: it is important!
