kris00j
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Welcome Kerry and Don, to our little family. I’m sorry you both had to find us, but so happy you have, as the support you will find here is amazing.
I think it’s wonderful that family members are both posting to here.
Don, keep up your positive attitude. And please use this site for information and support. And remember to post all of your good news in our good news section.Yah Helen! I’m glad you came out of the shadows to give us this wonderful news!! I think you should start measuring by seasons!
I forgot. My surgeon is Dr. Yuman Fong. I LOVE LOVE LOVE him!! He is the main reason I stayed at Sloan Kettering so long.
His recommendation? To do what we are doing. He didn’t even want to talk about radiation. So kinda a waste of my time!
Peg,
Neuropathy is more constant, at least in my case. I did have spiky pains, but the tingling and numbness was already present before the sharp pains started, if I remember right. And usually I had pain while walking or dancing. But night time was tough, because the tingling/numbness never stops.
Do you know what his potassium levels are? I get severe pains and cramps when mine is low, so I eat a banana almost every day, plus an additional potassium pill a few times a week.
I would call the oncs office tomorrow to ask about their thoughts.Hi, everyone. Thanks for the encouragement. He is a oncology radiologist, I think. He’s the one who told me Dr. Denlinger wanted to meet me for the trial. I’m sure he has discussed my case with her, and they know what it will do re the trial.
I also am pretty sure he will have a suggestion. But I’m not sure what that will be? I know he wanted to wait before zapping me again. Has it been long enough that he will put that option on the table? I don’t know. And if he does, do I take it or do I wait and see how the trial progresses? That’s my dilemma (even before given it)… I’ve done so much waiting that I hate doing more of it, but I’m not having any health issues so why rock the boat…
I’m trying not to think about it, but I keep revisiting it. Do I or don’t I?? I guess that’s a decision to be made on tomorrow’s appt. Not that I won’t think it to death before that!Lainy,
Good luck with everything, including your date! You are adorable… I bet he falls for you on the spot!Lainy,
Good luck with everything, including your date! You are adorable… I bet he falls for you on the spot!I’m with KrisV and Lainy! I hate even the smell of coffee… so I couldn’t even think if drinking it much less a coffee enema! DISGUSTING!
And since the surgery, the smell is even more disgusting.Many centers are now installing power ports. If it is an option, ask for one. It helps with everything, as it is accessed for blood draws, ct scans, etc. it definitely helps the veins in the arms!
Good luck,Porter,
I think they changed your mind, but just let me chime in about CTCA. I know AETNA does not recognize them. So if you did decide to consult with them, please make sure your insurance covers them. This goes for wherever you go.
Personally, I am glad it sounds like you are going elsewhere, as I have heard very little good about CTCA.
Good luck with getting your consult in Dec.!Judy, Dr. K sees more than 50 patients a day. On average, I saw the team (who are great) and they asked all the pertinent questions… How are you feeling?, bathroom issues?, dizzy?, nausea?, etc… Then they went over it with Dr. K. She then would come in and either say “everything looks good. We will continue.” Then exit. Or “there’s a problem.” It everything was good, she was an 8 second onc. If there was a problem, she might be a 10 min. onc.
I always attributed her lack of compassion to the fact that she pretty much deals with patients with a poor prognosis. Many of her patients are sick. I figured she didn’t want to get to know anyone when many of her patients don’t last a year or more….
I started to feel that she lost interest in me after the pump proved too hard on my body. So I eventually changed to another facility where I love my onc! It is so refreshing!
Good luck with your decision. I am not trying to sway you one way or another, but be prepared for Dr. choi’s description to be politically correct.
Take Care,Hi, yep I have the pump but I no longer use it nor do I have Dr. Kemeny anymore. I am so glad to read of good results! And you must be enjoying being away from those ND winters!!
If you check my name you can find a topic about the hepatic liver infusion pump. You can also call and ask me anything you want to know about it. And I will tell you this… I LOVE LOVE LOVE Dr. Fong (my surgeon), but don’t miss Dr. Kemeny at all. She is brilliant but unfeeling.
Briefly… It is a pretty major surgery, with restrictions for the rest of my life. No baths, jacuzzis (anything to raise body temp), running, scuba diving, etc…
The treatment is easy. 5-15 min. to empty and replace fluids in the pump. Maintenance is every 8 weeks. While getting chemo, it is every 2 weeks. If you can get the pump working, the chemo used is really really strong, so it kicks butt! Unfortunately for me, it proved too toxic for my body. There are others that could handle it, though, and got wonderful results.
Call or email me and I can give you more info. Entail is kris00j@gmail.com and phone # is 267-625-9873.
I hope this helped a little.Oh, my, what a story! We forgive you for not posting!
I’m glad things seem to be getting under control… I know, it changes day to day. I hope the chemo works wonderfully and you can get surgery.
