second sct

I had my first STC last October and was released to come back home where I regained my strength and slowly worked my way back into my life. However, 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. I feel great physically and have been involved in many home projects, working in my yard, riding my Harley, feeliong much as my " old self". I continue taking 60 mg of morphine daily 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. 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? Another question, are third STC's given or is there any use as the first two failed?Any input will be appreciated and thank all of you on this wonderful site.

Bill

Hello....

          Just a thought.....POSTITIVE THINKING will get you though all of this. LIVE LIFE.....enjoy today and don't worry to much about tomorrow.

                                Hugs Sheila

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

Bill - when comparing tandem transplant to having multiple transplants, it's not just about the number of transplants given, but the timing of the transplants, the chemo used, combinations of chemo/timing, maintenance chemo in support of the transplants ect.   There are many who have not followed a tandem transplant schedule who have had multiple transplants...thus the need for harvesting additional stem cells up front.  I harvested 28M...enough for four.

If your numbers are climbing, then something probably needs to change.  Whether that's via a transplant, other drug combinations, or natural, that's your call.  Lots of options out there as you know. 

I believe 79% reduction is considered a VG response and people do very well maintaining or improving on that result using the newer novel drugs for maintenance.  However, I'm no onco. 

I hope you and your medical team can find the combo that works best for you.

Best of luck and as Kevin said, keep enjoying life and stay loose!

Doug

 From Anna,

Hi Bill, Dad has 2 SCT's and the second one put him in remission for 5 years.  When they collected Dad's stem cells they got enough for 5 transplants.  So they decided to only give half back and if that didn't put him back in remission they would give him the other half back. So that's what they did.  And he was in remission for5 years.  It has probably been longer for others.  I don't know.  Everyone is different.

Your friend,

Anna

On 7/3/2009 harleynightrider wrote:

I had my first STC last October and was released to come back home where I regained my strength and slowly worked my way back into my life. However, 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. I feel great physically and have been involved in many home projects, working in my yard, riding my Harley, feeliong much as my " old self". I continue taking 60 mg of morphine daily 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. 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? Another question, are third STC's given or is there any use as the first two failed?Any input will be appreciated and thank all of you on this wonderful site.

Bill

On 7/3/2009 570sheila wrote:

Hello....

          Just a thought.....POSTITIVE THINKING will get you though all of this. LIVE LIFE.....enjoy today and don't worry to much about tomorrow.

                                Hugs Sheila

Thank you so much for your support.

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

 

The oncologist is not content with the 79% remission and wants to keep me on the revlimid and dex regement for at least another six weeks then make a decission as to if or not I will go for a second SCT. I will forward my numbers as soon as I can obtain and thank you so much for your advice and concern. God bless.

On 7/4/2009 UTboy wrote:

Bill - when comparing tandem transplant to having multiple transplants, it's not just about the number of transplants given, but the timing of the transplants, the chemo used, combinations of chemo/timing, maintenance chemo in support of the transplants ect.   There are many who have not followed a tandem transplant schedule who have had multiple transplants...thus the need for harvesting additional stem cells up front.  I harvested 28M...enough for four.

If your numbers are climbing, then something probably needs to change.  Whether that's via a transplant, other drug combinations, or natural, that's your call.  Lots of options out there as you know. 

I believe 79% reduction is considered a VG response and people do very well maintaining or improving on that result using the newer novel drugs for maintenance.  However, I'm no onco. 

I hope you and your medical team can find the combo that works best for you.

Best of luck and as Kevin said, keep enjoying life and stay loose!

Doug

 

I don't understand why the V.A. oncologist has waited this long to decide to consider a second sct as this October will be one year since my first. I have been feeling great then get grounded back in reality which triggers my going back in depression. It's hard staying positive with this hanging over ones head but, I'm going to try. Thank you Doug and all the other great people on this site for your help and support.

On 7/4/2009 Anna9563 wrote:

 From Anna,

Hi Bill, Dad has 2 SCT's and the second one put him in remission for 5 years.  When they collected Dad's stem cells they got enough for 5 transplants.  So they decided to only give half back and if that didn't put him back in remission they would give him the other half back. So that's what they did.  And he was in remission for5 years.  It has probably been longer for others.  I don't know.  Everyone is different.

Your friend,

Anna

On 7/3/2009 harleynightrider wrote:

I had my first STC last October and was released to come back home where I regained my strength and slowly worked my way back into my life. However, 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. I feel great physically and have been involved in many home projects, working in my yard, riding my Harley, feeliong much as my " old self". I continue taking 60 mg of morphine daily 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. 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? Another question, are third STC's given or is there any use as the first two failed?Any input will be appreciated and thank all of you on this wonderful site.

Bill

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.

 

Bill - I find myself waiting for the next shoe to drop at times as well.  Not sure why, but it is what it is.  Next time you see the onco, maybe ask him to write out his plan for you.  Ask him if he's considering other drug combinations before transplant.  Or, if he's consideering another transplant, what drugs will he use for induction and with maintenance.  We're talking all the time on this site about now being able to control the disease....don't lose sight of that.  It's not just about cure or complete remission these days.  Read this article, I think it'll help

 http://www.mayoclinicproceedings.com/content/83/10/1142.full

Best to you..........Like the fighter jocks say, "stay loose."

Doug