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last treatment for a while

snommintj's picture
Posts: 602
Joined: Mar 2009

I just got my pump off. I finished my 3rd treatment, everything seems fine. I have that metallic taste in my mouth, a slight sensitivity to cold. The cold sensitivity was really diminished this time by the calcium and magnesium. I have a PET/Ct next week to see where I stand. I think I have responded well. My CEA fell from 90 to 50 after only two treatments. I had originally planned to have surgery in 6 weeks from today. I am taking 4 weeks off and entering a clinical trial for fostamatinib. I will be monitored weekly to see if it's working. If it's not working then my surgery shouldn't be delayed more than a week or so. If it does work, then I will stay on it and perhaps not need surgery for some time. There are people that have been taking it for over a year with little to no side effects and it has stabilized or reversed their disease. I hope all of you out there are doing well and are looking forward to one day being rid of this disease.

lisa42's picture
Posts: 3661
Joined: Jul 2008

Hi John,

Can you tell us more about this trial drug? Is it new or just new to being tested for colorectal cancer? I always like to know options that are out there. I'm glad to hear you responded well to the other treatment you just had- let us know the outcome of your scan when you get it done.

Best wishes and take care,

Julie 44
Posts: 479
Joined: Oct 2008

Good luck on your scans and with the test trial..I agree with Lisa can you fill us in on this drug???Always need to be on top of things..Knowledge is power....................JULIE

Posts: 266
Joined: Jun 2009

Hi John,

Good luck with the scans and the trial. Let us know how you are doing.

All the best,

PhillieG's picture
Posts: 4912
Joined: May 2005

Good luck with it John.

Annabelle41415's picture
Posts: 6692
Joined: Feb 2009

Sounds like you are coming along really well. I am happy that you seem to be responding good. You have been through so much so maybe this new treatment is exactly what you needed. What are you on anyway? You said sensitive to cold and I only thought that was with the oxy, but I guess not. Let us know on the surgery.


Fight for my love
Posts: 1530
Joined: Jun 2009

Hi John,it is good to hear that you responsed well to the treatment.Best luck on your scan and let us know when the result comes out.

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

All to the best to you, John
I'll be curious as to how the trial works out for you.


eric38's picture
Posts: 588
Joined: May 2009

John - Thanks for all the good information you have given and continue to give us. You have been through the ringer so I am hoping and praying that you will be doing the naked happy dance soon.


betina61's picture
Posts: 644
Joined: Aug 2006

Praying for the best results for you, you deserve some goof news.

betina61's picture
Posts: 644
Joined: Aug 2006

I mean some GOOD NEWS.

tootsie1's picture
Posts: 5064
Joined: Feb 2008


That's FABULOUS! I hope this new trial will be just what you need. You deserve a break from this mess.


punch_vj's picture
Posts: 88
Joined: May 2009

You are so empowered and resourceful! you also you make the rest of us all feel it too. It is the strength and cornerstone of your healing. You are in my prayers for continued healing.


Posts: 146
Joined: May 2009

Good luck with the scans and trials. Hope things continue to improve...You are such a strong person full of conviction and courage....You are in my thoughts and prayers..

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Good luck John! Keep us posted on how you are doing. I haven't heard of this clinical trial but this entire thing is new to us. It is people like you that do these clinical trials that give so many of us hope.
I hope that there will be options down the road of my husband like this. Having been a part of clinical trials myself (not for cancer) they do treat you pretty good and monitor people very close.
I hope you will be one of the ones that reverse their disease.Paula G.

dixchi's picture
Posts: 438
Joined: Jun 2008

Hope the clinical trial is successful and am glad
you are doing ok so far. Appreciate your
willingness to try one of the trials; it helps
all the rest of us in our battles.


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