second sct

 From Anna,

Hi Bill, Dad is 66.  He is no longer in remission.  Been out of it for almost 6 years now.  He had been on and off chemo the last almost 6 years.  His Protien count recently went back up to 1 which they don't want.  We thought they were going to put him back on chemo but so far they've not.  He goes back I think in a month to the Dr.  He's protein count held at about .8 for a while so they didn't do chemo.  Actually a while back he had to have part of his jaw bone and all his left lower teeth removed due to Dead Jaw from the bone strengtheners his been on over the years.  Then a couple of months ago he got real sick.  We didn't think he was going to make it.  He had Colitis.  He is now dealing with Crohn's Diesase.  So after his mouth surgery with his count holding at .8 the Dr. gave him a break from chemo.

Your friend,

Ana

Thank you Anna. How old is your dad and is he still in remission? As I
remember i gave enough stem cells for only two transplants so I have
only enough for one more. I hope your dad is still with us and doing
well. Again thank you so much for your input and may God bless.

On 7/4/2009 K. C. wrote:

Good Morning Harley;

I have  been told by the V.A. Oncologist that I achieved only 79% remission and have been taking Revlimed and Dex to improve my remission status.and most probably will be sent to take a second STC this fall.

In my opinion, what you are presently on is referred to as 'maintenance therapy'. Don't let them paint you into a corner as to when they want to administer another SCT. Stay on the meds and let them perform their "magic".  You may not need another SCT for years. The only  timeline you want to keep ahead of is the age of 65. They don't like giving a SCT after that.

Why have they mentioned another SCT for the fall? Are your numbers starting to rise? If so, would you mind sharing. It appears to me that you are living the good life you fought to attain. Again, don't let them force you into something that isn't necessary at this time.

I feel great physically...feeling much as my "old self"... so I have no pain. I guess I'm looking for someone to tell me that everything will be ok although I know better but am a little confused as how can I feel so good physically and still not be in total remission.

A SCT does not guarantee total remission. As Doug would tell you: "You took the big stick and womped on this beast but good." Now sit back and enjoy life. Again, don't let the docs force you into a premature SCT.

Also, does anyone have any input into the success rate of second STC's and, generally aren't they given back to back as opposed to waiting almost a year for the second one?

You can research the success rates, but after only 1 year yours' would be about the same. Back to back SCT's are called Tandem SCT.  

Are third STC's given?

My opinion is that they probably weren't given back then as the normal harvest only called for 2 future tranplants. We weren't expected to be around that long!

Or is there any use as the first two failed?

Bill, I'd get that way of thinking out of my head real quick. 79% isn't failure. And now you're forecasting your next one as a failure also. If you really feel that strongly about throwing in the towel, how about I swing by and you sign over that Harley to me?

You stay on the meds, keep exercising, ride that Harley to relieve some stress and watch your diet. And don't let them talk you into another SCT until your spike or Ig's start to rise where it affects your daily living.

Enjoy the Fourth and take care;

Kevin

 

Kevin, will you please disclose the "numbers" I should ask the oncologist to give me? The V.A. is my health provider and sometimes getting information is difficult.

Thank You

Good Morning Harley;

Will you please disclose the "numbers" I should ask the oncologist to give me?

Your complete blood counts (CBC's); Sodium, Potassium and Glucose; Creatinine; Albumin; Alpha-2; Beta-2; M-spike (spep); Ig's. 

The V.A. is my health provider and sometimes getting information is difficult.

You're entitled to copies of all your numbers and tests. They have to provide them to you! Keep a binder of them.

Good to read you recent comments about fighting this. Though I am a bit disappointed about missing out on that "hawg".

Take care;

Kevin

On 7/7/2009 K. C. wrote:

Good Morning Harley;

Will you please disclose the "numbers" I should ask the oncologist to give me?

Your complete blood counts (CBC's); Sodium, Potassium and Glucose; Creatinine; Albumin; Alpha-2; Beta-2; M-spike (spep); Ig's. 

The V.A. is my health provider and sometimes getting information is difficult.

You're entitled to copies of all your numbers and tests. They have to provide them to you! Keep a binder of them.

Good to read you recent comments about fighting this. Though I am a bit disappointed about missing out on that "hawg".

Take care;

Kevin

Thanks for your help with providing me with the information. I will be going to the V.A. hospital this week and will have copies made. You know, my harley is one of my last passions. It feels so free when riding. I've been having bone not really pain but I can feel it because of the 60mg of morphine I take daily keeps the pain at bay. Might have to have the dosage raised. If I haden't allready willed my bike to my son (who rides a honda) I might consider you. Mostly I stay at home most of the time and take care of my home so riding my harley is a relief to me. Again thanks Kevin for everything and may God bless you.

Your Friend

Harley

Good Morning Harley;

Thanks for your help with providing me with the information.

You are quite welcome. 

You know, my harley is one of my last passions. If I hadn't allready willed my bike I might consider you.  

I flattered! But my comment was more directed at firing you up to change your mindset to start back on the road to fighting this beast. Besides, then I'd have to get a tattoo?

My son (who rides a Honda)

Now that must hurt more than the bone pain!

May God bless you.

I'll take as much of that that I can get!

Take care;

Kevin