kris00j
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Oh, Lainy,
Enough is enough! I hope the surgery goes well. Get that nasty thing outta you! Praying for some quick surgeries and easy healing.
Tell Teddy to watch over you. Have him put in a good word that you are still needed down here and healthy, for what would we do without your daily posts?? We miss you when you need to take time off.Stella,
I, too, am sorry to hear of the results, and your husbands ascities. I, too, suggest you discuss having some of the fluids drained, as it will ease his discomfort. I hope the docs can come up with a new treatment plan.
It’s so hard to be strong… I am glad to read that the two of you are there for each other, and you have him for guidance in this difficult time.Helen, great news!! I think I would opt for fighting for scans every 6 months. Talk to your GP… you may have to say you have stomached problems to get them through, but I would lie if necessary!
I’m so happy to hear you can loosen up and take a deep, easier breath after everything.Pat, I am sorry you had to join our family. Also, sorry to hear about Paul’s problems with Cisplatin. I hope the Folfox works well. It’s a tough road, not for the faint of heart. Faith is a wonderful thing to have. It’s kept many of us going when everything looked bleak.
I also tried Xanax, but decided it wasn’t for me. I might try it again, as this winter has been tough emotionally. Medical help has it’s good and bad points. But it did help me through some really tough patches.
Keep us informed on how the Folfox is tolerated. I hope you get some good news soon!Rose, I’m sorry you had to find this site, but you won’t find a more helpful, compassionate group of people!
I was on Xeloda, and do not recall the bad symptoms being symptoms of the drug. Tiredness, possible nausea, red and sore hands and feet, dizziness, and a few other side effects…..
I will say, however, that since having the pump and port placed in my body, I had 3 blood infections in the first 6 months or so. The symptoms were what you described. I was admitted to the hospital 2x with blood infections, and was given Levaquin. My fevers were between 101-104 and the chills were unbelievable!
I wonder if the metal is causing his body to have infections?
This is definitely a concern to bring to his onc’s attention. Maybe lowering the Xeloda will help… Possibly they are signs of another problem.
I hope you get good, clear answers on Monday. And that the medical team has a plan in place to combat these issues.Carl, your ears should have been ringing Tuesday, also! We talked about you and Lynn, and Dr. D was surprised that we have not met! We also discussed a support group, if you missed that in my previous post.
Patty is also hopeful that Lynn will qualify. She is the “coordinator”?? Short, bubbly, short hair. We discussed Lynn a little, without going into details. But I’m keeping my fingers crossed. When you come back down I am going to try to go down and meet you. It’s only 20 min.
Psssttt, don’t tell the staff, but next time have Lynn tell them her name is Annabel Mobely and her birthday is July 4. Or something similar. It keeps me laughing, anyway. They never know what I’m gonna say! lol
Yes, it’s silly, but laughter is the best medicine!Day 2 of Lasix… The swelling is already going down!! And the tightness/achiness is better. I can even rotate my ankles!! Yay!
Marion, I cross posted it. There are reports of edema with this drug, yes. And yes, I have my legs up a lot during the day.
As for the CA19-9… I wonder what it would be if I were a good little patient and watched my diet and never drank? I’m thinking… 25????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!!!!!!!
Caroline, the trial is now in phase 2. The candidate can only have had one line of treatment (possibly 2, if they are approved). I was talking to Dr. D yesterday about it, and I think Fox Chase’s cc arm will be filled with Lynn’s approval. There are possibly availabilities in U of Penn and Bethesda.
There are some other trials popping up. Hopefully your mom finds one that works!
And they say the happier you are the better you can fight illness. I am almost NEVER unhappy when I sing! I get choked up when I sing “Live Like You Were Dying” so I can’t say I’m always happy. If releases endorphins, which are great for fighting illnesses, depression, etc.
Lainy, you crack me up! The swelling isn’t TOO TOO painful. Uncomfortable… And scary… But they don’t have pianos at karaoke, and laptop computers are a bit too small for me to drape myself across! lolSorry your news isn’t better. But there are so many new options. With immunotherapy and inhibitor trials all over the country, I believe this will help so many of us. Prayers that you get the right options offered! Get the fight going your way this year.
