11 replies to this topic

[Cathy]

Hi So I had to stop my Sprycel 70 mg after 7 years due to PE first time and allot of fluid on both lungs. Got one lung drained said couldn't do other one. So I've been off Sprycel now for 4 months and I have lower numbers then ever! Last two were .0686 and this one is .0181 I couldn't even get to MMR until June 2017 my numbers have always jumped around. Last Xray showed I still have a small amount of fluid on one lung.

 

For someone who never could reach MMR till recently now off drug and have had lower number then I ever have. Dr can't explain it just reminds me this is probably temporary I get PCR monthly. I have never felt this good since DX. I feel like myself again. I didn't realize how crappy I felt till this break! It's been a great break.

 

Has anyone else who had trouble getting and holding MMR ever been off the drug 4 months or longer with numbers staying lower then ever? If so how long did the vacation last?

 

Mystery but I'll take it ! I feel like myself after 7 years of crap.

 

The surprising thing for me is my numbers have never stabilized, always jumped around, sometimes jumped  up even on pills. I never missed pills either. took me 7 years to get to MMR. I was just bearly MMR and only for 2 months before going off. Couldn't get to MMR. weird! But I'll take it!

 

Have a good day everyone!

[Jan0080]

Cathy, Congratulations!  This just shows how little we know.  Stay well!

[Trey]

...never could reach MMR till recently now off drug and have lower [PCR] number than I ever have. Dr can't explain it ...

 

Not sure it will persist, but if it does explain this to your doctor:

The explanation is probably that TKI drugs and especially Sprycel decrease the numbers of Natural Killer (NK) cells in the patient, and these are the cells thought to be capable of providing cessation success in some people.  After stopping the TKI the NK levels return to normal.  If the NK cells recognize the leukemic cells as foreign, they can attack them.  This may be a learned issue for NK cells, but unclear.  NK cells are innate immunity and not acquired (acquired immunity is from a vaccine or having had a certain disease and then have immunity -- those are T-cells). 

[tiredblood]

I'm so happy you feel like yourself again. When the hem/onc asks me how I feel I always answer, I don't know. I don't know how I'm supposed to feel, but I bet I'm supposed to feel way better than I do.

I pray you will maintain and even improve on this great response.

[Cathy]

Thanks for the replies, I just wanted to put this out here to see if anyone else has experienced something like this. It's pretty amazing to me and I think to my onc. I don't think I realized how bad I felt till I've had this nice break.. Its a extreme difference for me! Very thankful for this break!!!

 

My sister keeps telling I act like my self again like before cancer! LOL I'm happier I know that! Can do allot more things energy wise.

 

Wishing all good health ! and better days!

[scuba]

Not sure it will persist, but if it does explain this to your doctor:

The explanation is probably that TKI drugs and especially Sprycel decrease the numbers of Natural Killer (NK) cells in the patient, and these are the cells thought to be capable of providing cessation success in some people.  After stopping the TKI the NK levels return to normal.  If the NK cells recognize the leukemic cells as foreign, they can attack them.  This may be a learned issue for NK cells, but unclear.  NK cells are innate immunity and not acquired (acquired immunity is from a vaccine or having had a certain disease and then have immunity -- those are T-cells). 

 

 Below are references that document Dasatnib "increases" NK-cells, but decreases NK cell reactivity.

 

https://www.ncbi.nlm...pubmed/20143399

 

https://www.ncbi.nlm...pubmed/23108877

 

Also - NK cells are a type of T-cell. (https://en.wikipedia.org/wiki/T_cell)

[Trey]

 Below are references that document Dasatnib "increases" NK-cells, but decreases NK cell reactivity.

Also - NK cells are a type of T-cell. (https://en.wikipedia.org/wiki/T_cell)

 

The wiki reference you included says NK cells are NOT T-cells:

"T cells can be distinguished from other lymphocytes, such as B cells and natural killer cells, by the presence of a T-cell receptor on the cell surface."

 

On the NK numbers, the way you said it is more accurate, namely the NK function is decreased, not the numbers, so a good input.  But the result is the same, namely downregulated NK cells could negatively affect PCR numbers in some people.  And after Sprycel cessation the functionality will return to normal, and could affect PCR numbers positively.

[kat73]

Shouldn't we all be tested for NK cell activity, for the data?  And, what is going on with the person with long-standing PCRU (say, 10 years) and cessation is unsuccessful?  What is going on with the NK cells?  Can there be booster shots given?

[Cathy]

HI so just an update. It's been a full 4 months off Sprycel now and last set of numbers jumped up from .0181 to .0383. My WBC was up to 14.45 that is way higher for me then ever Usually I'm around 5 something. I'm still in MMR so not concerned. It just been interesting how my body is keeping my numbers down and I never even have had a deep remission I'm always just over the line a little this year.  And still detected I have never been undetected in 7 years! geez

 

My Dr is retesting my CBC again and wants to look at a blood smear just to see what is going on. I'm not concerned and just reporting in for those who are following this journey. I've been so thankful for this big break in pills. It's so great to feel so normal this long!

 

Hope everyone is doing well.

 

Cathy

[kat73]

So happy for you!  Thanks for keeping us posted, as your findings are so interesting.  I was off Sprycel for two months for a pleural effusion and felt absolutely fabulous.  It was night and day and almost as sudden (at about two weeks off).  Like you, I had forgotten how it felt before CML.  Back to "normal" now felt like physical euphoria - tons of energy, light and quick legs, sunny outlook - plus I felt like I had all the air in the world.  Hadn't even really noticed when that had changed.  Wow.  Unfortunately, I had to go back.  I call it the Flowers for Algernon Syndrome.  I'm pretty sure I have another pleural effusion - can't take time to check right now as I have to go clean up my place that Irma hit badly - but when I get the PE confirmed I'll get another break from Sprycel.  Ridiculous, but I'm really looking forward to it!  You'll understand.

[Buzzm1]

Cathy, thank you for continuing to keep us apprised of your highly unusual response after being off Sprycel for five months.  Hopefully your case will receive attention by the CML medical community for anything that might be gained; it's at least something unheard of among those of us on this discussion forum.  When will you test again?

[Cathy]

I know its all so weird but I'll take the break. I have to still have another xray  sometime my fluid was still present a month ago. I image I'll test again in 4 weeks. My onc won't go more then that right now.

 

My WBC being 14.5 is unusual for me so he had me do another CBC yesterday and wanted to look at blood smear under microscope just to check on what cells are there. He is just very cautious and I'm okay with that. 

 

So I'm image another month to feeling normal and great. I'm sure I'll have to go back on pills at some point just enjoying this while I can. It's such a blessing to feel like yourself. Major difference for me!

 

Take care all