12 replies to this topic

[Red Cross Kirk]

Hey all,

 

My PCR is trending up and my onc decided to switch me to S. (I may have dropped a few hints during the last year or so. )

 

I've got some 100mg G tablets left, so I'm thinking maybe I could supplement with those for a few months too, if I'm taking a low dose of S.  Are they different enough that it shouldn't cause me any problems?

 

If you were in my position, what dose of S would you advocate for?

 

Thanks,

RCK

[cmljax]

I certainly wouldn't take 2 different TKI's at once. Re: Sprycell dose, Scuba probably has best answer, but I think he might suggest 40 or 50 with an eye towards 20 if you trend back down to where you were.  Good luck

[hannibellemo]

I certainly wouldn't advocate taking them both at once!  I would advocate dropping to 50 mg. when you get back down to MMR, which shouldn't take long with Sprycel. About 1/3 of us on Sprycel will develop a pleural effusion at some point on 100 mg. I don't know if any testing as been done to see what 50 mg. does but in my case I've been fine for over 5 years.

 

Good luck, RCKirk!

[scuba]

I certainly wouldn't advocate taking them both at once!  I would advocate dropping to 50 mg. when you get back down to MMR, which shouldn't take long with Sprycel. About 1/3 of us on Sprycel will develop a pleural effusion at some point on 100 mg. I don't know if any testing as been done to see what 50 mg. does but in my case I've been fine for over 5 years.

 

Good luck, RCKirk!

 

Pat,

 

For your reference:

 

http://ascopubs.org/...15_suppl.e18551

 

https://www.scienced...152265016305687

[Red Cross Kirk]

I like this:  "Conclusions: Dasatinib 50mg daily is active and well-tolerated in newly diagnosed CML-CP. It should be further explored as a new potential dose-schedule standard-of-care in CML."

[scuba]

Dr. Cortes told me in person that 100 mg Sprycel is too much for many patients and not necessary.

He felt the drug trials were not complete leading to the "100 mg" starting dose.

 

Keep in mind, a phase 2 trial looking at dose involves at most 50-100 "subjects" (they're not called patients). A phase 3 trial includes only a few thousand subjects (typically 3,000). Once approved - the real world has tens of thousands of patients using the drug via prescription from doctors. This is where real world adverse event and efficacy data is collected (long after the trial for approval ends) and where adjustments need to be made more quickly. 

 

The papers I cited above reflect the new learning. 

 

In my view - new patients should never be prescribed 100 mg starting dose. They should be prescribed 50 mg and at most 70 mg to verify response. Only with poor response, but with low toxicity should a patient be moved up in dose. In case of Sprycel - MORE is NOT better. My starting dose under Dr. Cortes was 70 mg back in 2011 when no one was prescribing less than 100. And even then after myelosuppression, he dropped me to 20 mg straight away.

[hannibellemo]

Thanks, Scuba!

[thatguy]

How about going to regular 400mg?

[M.A.]

Great articles scuba... thank you!

Just fantastic that the authors are publishing updated results of the 50mg Sprycel studies every three months.

[Red Cross Kirk]

How about going to regular 400mg?

 

Yeah, I did that for the first 2½ years, didn't like the side effects of 400mg vitamin G, but it got me to a good place, response wise.

 

I actually increased back up to 400mg/day until I can get me some vitamin S.

[kat73]

Red Cross Kirk - Do not take both at once.  Some of their kinase targets do overlap. 

 

Given your history of numbers, I think you should start Sprycel at 70 mg or 50 mg.  There is no need for 100 mg; you will just get a pleural effusion!  (That was a bit of gallows humor; disregard).  But seriously, you don't need 100 mg and it is beginning to be seen as too high out there in real life clinical practice.

[thatguy]

Yeah, I did that for the first 2½ years, didn't like the side effects of 400mg vitamin G, but it got me to a good place, response wise.

I actually increased back up to 400mg/day until I can get me some vitamin S.

 

Yeah Kirk, I'm sorry for the side effects, but I'll say this (controversially) :

-taking vitamin D specifically, and/or multi vitamin exacerbated if not directly caused pounding headache and nausea with each tki I've taken.

-the common opinion/preaching on this board is hit mmr by month 6, cut dose nearly immediately, then go tfr the following month (exaggerated) . I think this may work long term for a few, but it's not necessarily wise to do in my opinion. Most doctors and early research directly oppose tfr, and reducing dosage. I think they have caved mostly due to the fact that they know a patient will ultimately do what they want anyway, so they might as well keep trust and observe long term. But I don't understand the research that was printed opposing these things. I recall a statement that patients failing to take their drugs at 90% of time, fail to hit mmr, so there has to be some threat of resistance I believe.

-the drugs can certainly make us feel bad, but cycling through drugs with the opinion that the compound failed when in fact it could've been dosage or diet or whatever, I think is far worse, because that wick won't burn forever.

[kat73]

Well put, thatguy. This is a great forum in that everybody's opinions and knowledge set are welcomed.  None of us knows everything.