18 replies to this topic

[scuba]

I just received my six month PCR result since stopping Sprycel (20 mg.).

 

PCR < 0.05% (M.D. Anderson Scale ~ 0.02% I.S. scale).

 

So I had a slight increase from last month within the margin of error and below MMR. The recommendation is for me to continue as planned - no TKI for another month. If my level drops back down next month, I begin testing every two months and I will have crossed a hurdle.

 

As long as I am below 0.1% (I.S. scale) which is MMR, I get to stay off Sprycel.

 

And so it goes ... 

 

 

[DebDoodah22]

I am at less than 0.1% (.010 ) IS scale, At 80 mg of sprycel and sooooo wanting to reduce my dose but my onc says only after 2 more years of at least 80 mg. I can't tell you how envious I feel...praying you will cross that hurdle. So fabulous!

[scuba]

I just received an email from Dr. Cortes - confirmed - I go another month - no Sprycel. I have a low residual and as long as it stays that way I am good to continue. But monthly ... 

 

In your case Deb - imagine if you lower your dose from 80 to 40 and no change in your status ... your PCR stays the same or even drops. You won't know unless you try. But you can only try if you have the support of your doctor and your inner self.

 

For me - stopping therapy in February I took a  big chance. I'm glad I did. I just want month after month of no drug. And now I have another month.

 

The good news in my experiment is that I can see how my body is reacting. I knew CML is a "slow" disease when in chronic phase with little or no blasts (my case). And I now have my own data points to support my approach. As long as I am below MMR - I get to stay off this drug and live normally.

[IGotCML]

Scuba, thank you for sharing for cessation results with everyone. It is very interesting and informative.

[pammartin]

Love  reading these posts.  Keep on, keeping on. 

[Cathy]

VeryExciting ! Keep us up on your updates!

 

Congrads !

 

Cathy

[TeddyB]

Good news, keep it up

[Louise1403989338]

Scuba,

 

That is great news.  So glad to hear you are still doing so well.

 

[tiredblood]

When I learned I had CML I soon became overwhelmed with appreciation for those who had been clinical trial participants because this ultimately resulted in my having a drug that works to tame CML.  I just want you to know, Scuba, that I appreciate what you're doing.  You are indirectly helping a lot of people.

[scuba]

When I learned I had CML I soon became overwhelmed with appreciation for those who had been clinical trial participants because this ultimately resulted in my having a drug that works to tame CML.  I just want you to know, Scuba, that I appreciate what you're doing.  You are indirectly helping a lot of people.

 

Thank you - I am not a clinical trial participant . What I am doing, I am doing on my own. I do have the support of my Oncologist who feels I understand the science and the risk and he's a bit curious. He's supportive and provides the labs and testing so we collect data as we go. I don't fear CML. And that gives me a bit of latitude to try some things I have to find out for myself. I share on this forum so others can see what I learn about my own situation. It's not scientific, it's not a recommendation to try what I am doing, just additional information. Perhaps hope.

 

I was PCRU prior to stopping Sprycel, but only after I started to focus on my immune system and nutritional support. It was rough going until then.  I held PCRU for several months post cessation, but had a bump up and down these last two months - well within the margin of error. I am told "no change".  I am significantly below MMR so I get to continue off Sprycel. There is data to suggest that patients who maintain levels below MMR can live just fine without TKI's without disease progression. My oncologist gives me a 50-50 chance I can become long term TKI free and functionally cured (he refers to it as "burnout of the CML stem cell". I am testing that right now. 

 

What I believe is that I have a battle going on in my bone marrow between CML cells and my immune system (T-cells). So far - there is little change month over month. I will always have CML. But when it tries to expand (come out of quiescence), my immune system is able to reduce it back - much like the way our immune system kills virus' that come out of quiescence but doesn't eliminate them (shingles, cold sores, etc.). As long as my body is healthy (immune system), and I focus on immune system nutrition, I feel I can keep going this way. At some point there may be a true cure that eliminates the CML stem cell. 

[Terran]

Thanks for sharing Scuba. You are an inspiration to me.

[CallMeLucky]

Congratulations, here's to another month and so on.....

[Billie Murawski]

Congratulations, here's to another month and so on.....

  Hi Lucky, How ya doing? It sure is a long road isn't it? I think of you often hopefully we can bounce back soon. Feel free to pm me anytime.   Billie

[soundoff]

Keep it going Scuba!

[scuba]

Keep it going Scuba!

 

I have no delusions on this of course. Should my PCR rise above 0.1% (I.S. scale) then it's back on my 20 mg. Sprycel. 

But I feel good with my approach - no drug - one month at a time.

[tazdad08]

Thanks Scuba! Prayers for all of us on here. I was on a 20% dose for two years before I lost CCrY. It was worth it!! 

[Gail's]

Cheering you on Scuba!

[SUE]

Congratulations, Michael.  

[Kellyb333]

Yay!!! Congratulations