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Porter,
I also had the cold sensitivity and neuropathy on my second treatment, if I remember correctly. Plus I battled nausea 6 hours after infusion.
I received treatment during the summer but still wore gloves and heavy socks.
The cold sensitivity was first noticed the day after my 2nd treatment, but I didn’t go to the fridge the first day, and since it was July it wasn’t cold out at all. But boy did I think my hands were being burned! I learned to drink room temp everything! It usually went away after a few days.
The neuropathy built up with each treatment. It disappeared after a few days the first time, then a week, until after 6 rounds I still had it. The gem/Ox was then discontinued for fear of making it permanent.
Remember to keep gloves and warm socks nearby. A light jacket and even a scarf might come in handy. Walking through the refrigerated section of the grocery is tough! I had to wear gloves there in July-Sept. But it beat dropping cold food.
As far as how long it lasts…. The “bad” neuropathy probably disappeared within 6 months. But from the balls of my feet to my toes still buzzed constantly for almost 2 years. I still don’t have complete feeling in my toes, and my fingers go numb and white when cold, but everything considered, it isn’t too bad. I was able to wear sandals last summer, although I called flip flops “flip drags” because my left foot didn’t feel enough to “grip” the sandals.
Matt, I’m sorry Lisa still has it, and badly. In retrospect, I am not sure what I would have done. If I had had ONE more infusion, I MIGHT have gotten my resection, but the neuropathy would have been worse. So I often wish I had lied and gotten one more treatment. Then I might have had surgery. I know, “should woulda coulda!”

Ugh! That is just rude! It may be that there were extenuating circumstances, but it would have been nice to receive a call. Myself… I would make noise. Call tomorrow and see what happened. If there is still no visit tomorrow, ask if they can recommend an onc that cares about his patients.
I started to get very abrupt with Dr. K when I had had enough. I told her I wanted answers. I was no longer waiting for her to decide to tell me! Then I fired her to her face after I met Dr. Denlinger. Told her she needs to pay more attention to some of her patients.
I hope your dad is feeling better. There are other options out there. Hopefully one works better.

Percy, you have helped so many of us through this horrible journey we all share. I for one can’t believe all the knowledge you have shared to so many of us. This board has benefitted from all the help you have given to so many.
I don’t know if that is what you meant about “purpose in life” but I hope you know how all of your wisdom has helped us. Your unwavering determination to help yourself, and us, through this journey has been invaluable.
I just wanted to let you know how I feel. Although I can’t begin to understand your feelings at present, I just wanted you to know you are loved and admired.
I pray you get some relief. I wish for there to be something soon to help. I’ve heard of the new CD45 trial but don’t know how close it is to beginning. Perhaps it is starting soon. It sounds unbelievably promising.

Mom3, I am sorry you had to come here. It’s a tough thing to deal with, no matter what the circumstances, but with small kids it’s even harder.
My suggestion is to try talking with an advocate at the insurance company. I had one that fought for me when I had AETNA. You might be able to get to MDA that way. Or see if Dr. Javle is willing to consult with a team you CAN go to.
Hopefully something works and you get some help!

IWANNAGOIWANNAGOIWANNAGO!! They can use me as a subject!!

Holly, I wish I had an answer for you as to what is the RIGHT choice. I know, it’s hard. Yes, the trial I am on is going well. I do not know if phase 2 is still open.
There are some trials out there. There is also SBRT radiation. I don’t remember your specifics, but it worked to quiet the tumors for 8 or 9 months for me.
There is also a new trial about to begin pertaining to the CD45 protein that coats cells. I don’t know a lot about it, but maybe your onc does?
I hope you get a good, sound plan in place. One that is right for you.

Andrea, you might try getting in touch with one of the leading cc oncs in the U.S. if you think you want another opinion about it. I’ve never connected with Dr. Javle from MD Anderson, but I understand he is extremely approachable. Perhaps he can confer with your dads onc if you have concerns.
Good luck to your dad with the new chemo regiment.