Jump to content


Photo

Is there any data on this...


  • Please log in to reply
43 replies to this topic

#1 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 10 January 2012 - 04:59 PM

Can switching to Tasigna alter body chemistry so that a future switch back to Gleevec would render Gleevec less effective in the patient than it originally was?  i.e Gleevec wouldn't work as well anymore because Tasigna monkey-wrenched around with the genes.

I know that kind of data probably doesn't exist, but maybe someone has other insight into the question?

I ask because I am considering every angle (even worst case scenarios) before I commit to switching to Tasigna for side-effect reasons. 

Thanks



#2 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 10 January 2012 - 05:32 PM

When I discussed with my doctor, who in a round about way was talking me out of switching, she said that she couldn't see any reason why I couldn't switch back to Gleevec if I had more trouble with Tasigna, although it is not something that is typically done.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#3 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 10 January 2012 - 07:19 PM

Why did your doc talk you out of switching?  What reasons?  My own doc has been suggesting it for a year in a very nonchalant way, like it's the easiest decision in the world, which it clearly isn't if your own life depends on it.



#4 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 10 January 2012 - 07:57 PM

Tasigna does not impact future Gleevec use.  It does not have monkey wrenches or any other gene altering tools. 



#5 WoofWoof

WoofWoof

    New Member

  • Members
  • Pip
  • 1 posts

Posted 10 January 2012 - 07:58 PM

When I switched from G to T my Onc. said that if needed, I could always go back to Gleevec. I think that it would be difficult to find any hard data studies for this since they are both relatively new.


I have cancer but it doesn't have me


#6 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 10 January 2012 - 08:19 PM

Trey - NOT TRUE: Tasigna absolutely has monkey wrenches. See Tasigna molecule below it's right there, part of the four methyl group:

4-methyl-N-[3-(4-methyl-1-H-imidazol-1-yl-monkey)- 5-(trifluoromethyl)phenyl]-3- [(4-pyridin-3-ylpyrimidin-2-yl) amino]benzamide:

It's plain as day. Anyone can see that. The chemical formula even has "monkey" in the name!

Tasigna_monkey.jpg


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#7 pamsouth

pamsouth

    Member

  • Members
  • PipPip
  • 10 posts

Posted 10 January 2012 - 08:33 PM

Yea I hear you all loud and clear.  Previous Onc been bugging me about a year changing from Gleevec to Tasigna.  PCR were good up until about last Oct but called Lab, my pcr labs are  sent from Indiana to New Jersey and they had switched to IS scale.  Also had another lab 1 week after the bad report and they were soooooooo much better, so I am sure there were two issue, one the change in the way the caluclates and 2. there is much room for error in these PCR especially when being shipped out of state.

Seem like a lot of oncologist giving the big push to the newer drugs, could part of that be that Gleevec will become a generic  in 2015?  Just saying??

Anyhow my previous oncologist drove me crazy about the new drugs.  Anyhow I am not foolish enough not to do my own homework?  She is only a stand alone doctor I don't know how she can keep up with the patients she has, I would dare say I am probably one of the few CML if any patients that she has?  Not all oncologist are leukemia specialist, she just happen to be 4 miles from my house, and I was happy to stay with her as long as she didn't throw any monkey ranches at me! Well she did, but that OK, I am all the better doing my homework.

Actually it worked out for the best because my new oncologist which is only 15 miles away and the #1 leading cancer center of Indiana does there own in house labs!  Got my insurance and billing squared away on the phone, but waiting for the actually paper work, want to see it in writing that insurance is going to pay for new doctor and labs.  I don't need stuck with a ton of bills if I don't have to.

I read one post some time ago, where someone switched to Tasigna, to many side effects and then switched back to Gleevec with new side effects and problems.  Sorry can't remember whose post and don't have the time to look it up.  But If I don't need to switch I don't care if is the newest craze drug on the block not switching unless good reason.  Everyone is different can't fit everyone into a single guideline.

New Oncologist CML Expert Group at In Univ said he doesn't believe in trying to fit everyone in international guidelines.  Everybody individual, a lot to consider.

PamSouth


PamSouth


#8 pamsouth

pamsouth

    Member

  • Members
  • PipPip
  • 10 posts

Posted 10 January 2012 - 08:40 PM

OK everybody what is that monkey ranch, what does it mean in layman terms, help me out here?

PamSouth


PamSouth


#9 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 10 January 2012 - 08:56 PM

All kidding around aside, I am curious about the data behind the statement "Tasigna does not impact future Gleevec use."

Thanks.



#10 hannibellemo

hannibellemo

    Advanced Member

  • Members
  • PipPipPip
  • 728 posts
  • LocationNorth Central Iowa

Posted 10 January 2012 - 09:59 PM

That was a great one, Michael! There have been far to few monkey shines on this site lately. Not to mention monkey butts and buffalo! Keep it going...

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#11 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 11 January 2012 - 10:01 AM

Oops, should have replied here to Trey:

"...I am curious about the data behind the statement "Tasigna does not impact future Gleevec use." ?

This is important to me as I try to decide on switching.

    



#12 Trey

Trey

    Advanced Member

  • PS Beta Group
  • PipPipPip
  • 1,705 posts
  • LocationSan Antonio, Texas

Posted 11 January 2012 - 10:17 AM

There is no data to show that Tasigna has any impact.  There is no way to "show" no data.  In reality, very, very few have gone back to using Gleevec after taking a second generation TKI because most find the other drugs work better, but some have returned to Gleevec due to side effects of the others.  In the future, after Gleevec patent expires, I would expect many more to return to Gleevec. 



#13 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 11 January 2012 - 10:22 AM

Got it.  Thanks.



#14 tiouki

tiouki

    New Member

  • Members
  • Pip
  • 0 posts

Posted 11 January 2012 - 10:27 AM

Hello BPilgrim!

To my knowledge there is no data showing any evidence of a negative impact of Tasigna on an eventual return to gleevec.

And my personnal opinion here is : there is really no biological reason for Tasigna to limit gleevec's effeciency. Such effect has not been demonstrated and will not ever be as there is no reason for it. You spoke about genes but ITKs don't directly affect genes they only limit BCR-ABL protein function. I would also add that it's a good idea to try to switch to Tasigna : it leads to much deeper responses and thus increases the control of the disease. You should give it a try If you get tough side effects you can get back to gleevec it will work no problem

Good luck!

Pierre



#15 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 11 January 2012 - 10:47 AM

My doctor appears to be very conservative, she is a CML expert, but she also specializes in other Leukemia's.  She has been working with it for over 30 years and I think her opinions are shaped by her experiences, which has been seeing a lot of people die over the years.  So it seems her opinion is that if you have something that is working you should stick with it.  Of course she is not the one experiencing the side effects so she has a different perspective.  As I explained to her in our last meeting the two of us are in this together like bacon and eggs.  The chicken is participates, but the pig is fully committed. (In case there is any confusion, I'm the pig!).

She didn't outright talk me out of it, in fact she was very direct in saying that if I wanted to switch she would call in the prescription that day.  She then went on to tell me about potential side effects and how the change would work as far as scheduling appointments etc as any good doctor would do.  But this is where I started to feel like she was talking me out of it.  Unlike other doctors who we hear about telling their patients "don't worry switching is a piece of cake", mine rattled off a bunch of stuff and painted a scenario that at the very least was inconvenient and frustrating and potentially a path to problems.

She started off with "you'll have to go back to coming in every week for blood work and EKG's for the first month or so.  Then assuming there are no problems with that we would start to push out appointments again".  It's well over an hour trip into the city for me to get to the hospital so this is not super easy.  I could push for blood locally but she wants me there for the EKG.  She then said she would have to monitor me for pancreatitis which I guess is fairly common with Tasigna as well as potential liver toxicity issues.  She didn't make it sound like they were going to be unworkable, but potential issues.  She also said I should expect a rash with Tasigna that could be quite bad depending on how I react.  I asked about Sprycel instead and she said the pleural effusions are pretty common and she would rather I go to Tasigna since I did well on Gleevec and try to avoid having to deal with lung issues.  I brought up possibility of reduced dosage and she was dead set against it.  I asked her what I would do if Tasigna didn't work and she said we would go to Sprycel and then she said something that really made me think she didn't want me to switch, she said "you are still pretty young, are you sure you want to start burning through all your options".  I didn't think that was a really fair statement.  When pushed she admitted that I could go back to Gleevec, but if Gleevec was causing me so much trouble with side effects then it wouldn't make sense to go back.  This was kind of baiting me, in other words - if you're saying it is not so bad that you would go back to Gleevec if your life depended on it then maybe you should consider not switching.  Again she is not the one living with the disease.

Overall I think she is looking out for my best interest.  I responded very well to Gleevec in a short amount of time, hit MMR very quickly and I am currently CMR so from her perspective she is thinking why rock the boat.  She said maybe I should explore some other options before switching like accupuncture to see if I can get relief from side effects that way.

I'm still debating it but for now staying on Gleevec.  I have a wife and two young children that I support - my wife does not have the earning potential to support us.  So I have to weigh how bad it really is - would I like to be in less pain and less tired?  Of course I would.  Can I tolerate where I am and not disrupt my life and risk being out of work due to unforeseen serious side effects from a new drug?  I kind of have to.  My employer has been very tolerant, but their perspective is that I am kind of over the hump now, so to go back and say I am going to start missing work again and running off to appointments every week is not ideal.  They'll let me do it, but in this economy do I really want to point out the problems I have in my life or am I better off just keeping my head down.  So for now, I'm staying on G and we'll see what happens.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#16 tiouki

tiouki

    New Member

  • Members
  • Pip
  • 0 posts

Posted 11 January 2012 - 10:59 AM

Hey Callmelucky

I didn't know you were doing this good on gleevec that's great

""you are still pretty young, are you sure you want to start burning through all your options".  I didn't think that was a really fair statement." =>  that's is more than that I think, that's bullshit (sorry for the word)

"I brought up possibility of reduced dosage and she was dead set against it" => any rational reason for rejecting this option? Plus as you hit CMR there is no reason for not trying a lower dosage as your main concern know is side effects, CML is totally under control... Anyway..

I think she is right about the potential side effects of the other drugs (lung issues with sprycel etc...). But still. I had to say this

Good luck to everyone

Pierre



#17 scuba

scuba

    Advanced Member

  • Members
  • PipPipPip
  • 1,044 posts
  • LocationHouston, Texas

Posted 11 January 2012 - 11:15 AM

Hi Gary,

Interesting comments ... I was puzzled over your Doctor's response given that she is an "expert".  Should you decide to change drugs - for example to Sprycel (which I did), you would indeed have to have CBC's started again once per week, but you don't have to have the CBC's done at your doctor's location. CBC's are simple and can be done at a closer facility to you. This is what I did. Also - if your counts stay stable for a couple of weeks - your back in business.

Should you see your counts drop due to myelosuppression, however, then you can visit with your Oncologist or otherwise go back to Gleevec. Chances are you will not have an issue at all or it will be minor as your body adjusts.

You know my story with severe myelosuppression - and now I only have 3 month PCR's done - no more weekly or even monthly CBC's. But Dr. Cortes knows I am very familiar with symptoms associated with low counts. I suspect you would be on top of that as well.

Not to plug Sprycel - but it takes a much lower dose to get the dramatic impact on the disease and with much less side affects (if any). Dr. Cortes has me on 20mg even though I was willing to go higher. He convinced me that a higher dose won't matter in my case - it is a threshold level that counts. Get above the level needed and the effect is pronounced. And he does not start any patients above 70mg. He works them down fast depending on side affects observed. He told me he has many many patients at 20mg. with terrific results. Fair enough.


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#18 BPilgrim

BPilgrim

    New Member

  • Members
  • Pip
  • 8 posts

Posted 11 January 2012 - 11:33 AM

Thanks a million for that response.  I wish my own doctor was so willing to talk through the decision with me. I know he's not being cavalier in his opinion that I switch to Tasigna without giving it much thought, but like you said, he isn't living with the disease, or the personal sense that life & death consequences are involved (or the horrifying prospect of making a bad decision that will shorten my time with my young children and wife.)  I know many people here advocate switching, and I understand their reasons why, but I'm finding it hard to make the leap.  Beside the potential for new or worse side-effects, and possibly burning through my drug options too soon, I dwell (maybe too much) on unforeseen consequences.  And believe me, I am desperate for relief from my side-effects.  To get all melodramatic about it, I'm haunted by the memory of being chemo free in between my Interferon and Gleevec treatments.  It lasted about four months, and it felt like my brain was shiny and humming again, and my body felt young and ache-less...then Gleevec started to kick in, and now it feels like I've got glue in my brain and 40lb weights on my legs all day.  Still, I'm alive, which feels pretty nice.  Maybe I shouldn't argue with that.



#19 tiouki

tiouki

    New Member

  • Members
  • Pip
  • 0 posts

Posted 11 January 2012 - 12:35 PM

Hello again

About what you sait scuba :

"Not to plug Sprycel - but it takes a much lower dose to get the dramatic impact on the disease and with much less side affects (if any). Dr. Cortes has me on 20mg even though I was willing to go higher. He convinced me that a higher dose won't matter in my case - it is a threshold level that counts. Get above the level needed and the effect is pronounced. And he does not start any patients above 70mg. He works them down fast depending on side affects observed. He told me he has many many patients at 20mg. with terrific results. Fair enough."

I can not agree more. My opinion on thhis is that sprycel is really really a great drug, which will soon be maybe the "perfect" treatment for CML thanks to the work of Dr Cortes and others like Pr. Rousselot who is developping new trials in France.

People are treated with 100mg sprycel (like me) but apparently reduced dosage work the same, while side effects are very limited. In my trial where they try to limit blood's residual concentration of drug to limit side effects (i.e pleural effusion and lung problems) they only got one patient with lung issues out of more than on hundred. I am curious to see the side effects Dr Cortes get with 20-40mg...

In summary for a low/adapted dosage of sprycel you get :

-excellent CML control

-incredibly limited side effects (I have none and as my doctor told me I am not the only one).

-no/very limited severe side effects (almost no pleural effusion if the treatment is well adapted)

-you can take it during lunch, and only once a day (I think it's important in the long term)

-only one known mutation that resists to dasatinib.

BPilgrim I understand your fear to change drug this is a big step and you need to think it.

When you say "I am desperate for relief from my side-effects." I think that maybe you should try to get different opinions on the subject. To deal with quality of life is also an important part of the CML fight.

Best wishes to you, and good luck, enjoy life it is great

Pierre



#20 CallMeLucky

CallMeLucky

    Advanced Member

  • Members
  • PipPipPip
  • 216 posts
  • LocationCT

Posted 11 January 2012 - 01:37 PM

Hi Michael - the issue wasn't the CBC, it was the EKG which she said she wanted me to come there for.  The CBC I could get away with locally.  EKG's would probably only be a few weeks, so not end of world.  I could probably push back real hard on the EKG too, but then I have to start dealing with a local doctor, and not sure if my PCP would want to do this.  Again, only a few weeks so not that big a deal.

Pierre - the reasoning for not wanting to go with lower dosage seems to be rooted in prior experiences perhaps with other drugs for other cancers or maybe even for CML either in the past or perhaps some stuff she does see currently.  She works in a major cancer center and I know she has a lot of patients.  The statement she made was something along the lines of "I have been working with this disease for over 30 years and I have a very real appreciation for how dangerous it can be.  I don't take chances with lower dosage unless it is a life threatening condition where the risk of staying on the higher dosage is not acceptable.  I feel very strongly about this and I'm sorry to say that if you wanted to lower your dosage I would have to refer you to another doctor, I feel that strongly about it."  Let me say that she was very nice when saying this, not arrogant or anything like that, she was sincere and polite, this is just the way she feels. 

She did not give me her underlying reasons, I don't know if she is concerned about potential for mutations or if it is something else, but she is clearly against it.  Honestly her response prompted me to consider changing doctors, but again, do I want to go out and spend the time finding a new doctor.  I couldn't see staying at the same facility and seeing one of her colleagues so that would mean switching to another hospital.  There is only one other hospital in the area that I would consider on par with the hospital I am currently being treated and most would say the hospital I am at now is the better of the two for this disease.  But even if I did switch, exactly what would I say to the new doctor when I walked in?  "My last doctor has done an amazing job of treating me, and my disease is completely under control, but I don't like her opinion on switching drugs and going off label at a lower dosage because I feel I know better and I would like you to be my doctor and prescribe for me what you think, unless I don't agree with it, in which case I want you to prescribe what I think I should take based on what I have read on the internet".  When I say that out loud, I have a hard time keeping a straight face.

For now I am doing ok.  If it gets real bad, I will switch.  I will switch to the drug she suggests based on the label dosage she suggests.  If it turns out I have a problem at that dosage, then I would be in a better position to argue for dose reduction.  BTW - I am not interested in Gleevec reduction, I wouldn't feel comfortable at 300mg at this stage of treatment.  I also have in the back of my mind the patent issue.  If I get used to Gleevec and can find other ways to lighten the side effects I really like the idea of generic Gleevec and being on a drug that costs around $400 per month vs. a drug that costs around $4000 per month.  That could seriously impact my mobility should I ever want to change jobs.  $400 per month wouldn't be too noticeable on most group plans, $4000 per month and they know who you are the first month.  I'm haning in there for now.  This is a long marathon and as I said to my wife after my last appointment, I don't have to make a decision today.  I have the luxury of being in a good spot and can give it some time to think about it and see how it goes.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 





1 user(s) are reading this topic

0 members, 1 guests, 0 anonymous users