24 replies to this topic

[gerry]

Long-term follow-up confirmed the previously reported result that intermittent administration of imatinib is safe and effective in chronic myeloid leukemia (CML) patients. The INTERIM trial's 5-year follow-up results were reported in December at the American Society of Hematology (ASH) Annual Meeting in San Francisco.

 

http://www.cancernet...e=1&ts=21012015

[rcase13]

So is this basically saying stopping and starting treatment won't cause any issues in most people?

[Trey]

Once a patient has an excellent response, lowering the dosage in any form (half dosage, intermittent dosage, etc) is usually effective.

[gerry]

On the plus side it once again shows that if you stop and the CML comes back, you can restart your TKI and usually return to where you were. This monthly on, monthly off didn't work for everyone, but a number of them still seem to be staying at the same level.

 

I think I would perfer lower dosage if I was still on a TKI to doing this.

[Billie Murawski]

On the plus side it once again shows that if you stop and the CML comes back, you can restart your TKI and usually return to where you were. This monthly on, monthly off didn't work for everyone, but a number of them still seem to be staying at the same level.

 

I think I would perfer lower dosage if I was still on a TKI to doing this.

Hi gerry, I'm on 20mg Sprycel and I would rather stay at this dose than take any chances.

[gerry]

Hi Billie,

Understandable, if I was back on the Gleevec I'd be on the lowest dosage possbile as well.

[Billie Murawski]

gerry,

  I figure if it ain't broke don't fix it. I'm almost 4 years undetectable so I'll settle for that. The way our weather is right now the cold will get me before cml could,even my bone marrow is cold and achy.

[TeddyB]

Great article GerryL.

 

 

Once a patient has an excellent response, lowering the dosage in any form (half dosage, intermittent dosage, etc) is usually effective.

 

What would you say was an excellent response? Steady MMR over time?

 

 

MMR is used as a criteria for the Destiny trial going on in the .uk at the moment. (Dose reduction then stopping trial)

 

More info here if anyone is interested:

http://www.isrctn.com/ISRCTN74084226

[Dom]

I'm one year on Gleevec, and my PCR is excellent and I'm at CCyR.  I'd love to lower the dosage, just because of the cost, but my oncologist still says there is no data that supports this.  He is very knowledgeable.  I wish he knew of this study.

[Trey]

I don't like to define too narrowly what is barely understood in the first place.  For me, I did not lower my dosage until 2 years continuous PCRU.  If the side effects were bad, I would say earlier is possible.  Generally I would not suggest dosage lowering until MMR, but again, in some cases it makes sense when a person just cannot stay on standard dosage.  To me it comes down to taking the standard dosage as long as possible, but if frequent drug breaks are required due to side effects (very low blood counts, etc) I would rather see continuous lower dosage than sporadic standard dosage, even if MMR has not yet been achieved. 

[Frogiegirl]

I would love to eventually go off tasigna long enough to have my last little one. ......uhhhg. sounds selfish I know. .and maybe a little unreasonable? I'm just not ready to close that door yet. I wonder if 9 months is to long for a tki break?

[TeddyB]

I agree with the lower dose, rather than the on/off approach.

 

Ive been hovering around MR 4 for the last 2 years or so, but i still feel its too early to start even considering dosage reduction, and i wouldnt do it without my Onc`s approval.

 

Maybe in a few years, and if your predictions are right about me going PCRU soon Trey, then maybe

[TeddyB]

I would love to eventually go off tasigna long enough to have my last little one. ......uhhhg. sounds selfish I know. .and maybe a little unreasonable? I'm just not ready to close that door yet. I wonder if 9 months is to long for a tki break?

 

Not selfish, nor unreasonable at all

I hope you get there some day.

[Frogiegirl]

Thanks teddy. I was born to be a mom. It's the one job I know I'm good at. Just don't want to be the crazy person thinking there's still a reasonable chance. ....but it's all I have. So I'll hold onto hope:)

[gerry]

Teddy,

I started having a conversation with my doc about dosage reduction prior to even thinking I was close to being able to. I think it helped ease him into new ideas. When I initially started with him, he was a "gotta keep hitting it hard" doc.

I had one year PCRU before dropping to 300mg Gleevec, there was a big difference in how my muscles felt following the drop.

[Billie Murawski]

Thanks teddy. I was born to be a mom. It's the one job I know I'm good at. Just don't want to be the crazy person thinking there's still a reasonable chance. ....but it's all I have. So I'll hold onto hope:)

Froggie Girl, I think we had a member who went off their med to have a baby, and they did have a beautiful healthy baby. I can't remember girl or boy. I think other people are doing that to. Somebody else on the board will probably remember. Never give up hope.

                                                                                  Billie

[PhilB]

There have been plenty of cases of women successfully interrupting treatment to have a baby.  The original 'Poster Girl' for this was a woman called Erin Zammett, who wrote various articles about it that can be easily googled.  Google will also reveal lots of other cases and in some cases the paper written by their oncologist afterwards such as this one which is interesting in terms of the strategy employed to maximise the odds of a quick conception.  http://www.hindawi.c...em/2012/624590/.

The key thing seems to be to be at least in stable MMR to begin with and to monitor carefully all the way through.  

[Frogiegirl]

Phil B Thank you sooo much for that info! everytime I bring it up with my doc, he responds by saying just be content with what you have and work through the fact that its not an option  His "Fellow" told me they have one lady who is prego and on meds, I'm guessing because she is not in a good response and is on a TKI and the "fellow" is afraid the baby is going to have two heads.......yes this is what she told me  I am getting older....33 next month and would like to set my sights on one more pregnancy. I have been at this dx oct 28 2013. And from what I have been told I have responded good. I am hoping to be PCRU in mid march when we test again. from there I would like to start my countdown of 1 to 2 years and then try and get prego. Tricky little situation us child bearing gals are in when we are diagnosed with CML. I even thought about names like "Luke" or "Mia" lol to signifiy there existence while having "Luke E Mia"  Have to find Humor in this situation otherwise I would go crazy

[Gail's]

Love the name puns! I work with high risk pregnant moms. Recently had a patient with high white count assumed to have leukemia. While she was past the stage of pregnancy where critical development of the baby happens, she decided to wait to initiate treatment till after delivery. Also cared for a breast cancer patient in hospital for chemo. She had stopped treatment for the first trimester then resumed. Baby was apparently fine at birth AKA one-headed. I recommend that you consult with a perinatologist. They manage the care of high risk pregnancies, and have always been very good at researching the specifics of pregnancy related health issues.

[TeddyB]

Teddy,

I started having a conversation with my doc about dosage reduction prior to even thinking I was close to being able to. I think it helped ease him into new ideas. When I initially started with him, he was a "gotta keep hitting it hard" doc.

I had one year PCRU before dropping to 300mg Gleevec, there was a big difference in how my muscles felt following the drop.

 

Not a bad idea.

 

I want to try to get my pcr down a bit more before considering it though.

 

My results:

 

                         International Scale:

          BCR-ABL1/ABL1        BCR-ABL/GUS

04.11.12     76%                         21%

06.14.12     17%                         10%

07.26.12     3%                           3%

10.24.12     0.10%                      0.08%

01.15.13     0.02%                      0.01%

04.11.13     0.03%                      0.01%

07.16.13     0.04%                      0.03%

09.12.13     0.01%                      0,02%

12.04.13     0.01%                      0,01%

03.05.14     0.01%                      0.02%

06.11.14     0.03%                      0.02%

09.12.14     0.01%                      0.02%

12.11.14     X.XX%                      0.03%