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#1 scuba

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Posted 05 January 2015 - 07:56 PM

I am deciding to whether to stop taking Sprycel (20mg) in a month or so. We're looking into the insurance implications of stopping and instead testing monthly for PCR. They are willing to let me stop, but only if I have monthly PCR's.

 

Anyone know how much a PCR costs? It's not clear from my medical statements since the treatment cost is wrapped in. I don't know if my insurance will substitute monthly Sprycel for monthly PCR - that's the question I have asked. I have to think that one PCR is cheaper than one month's worth of Sprycel?

 

I suspect the insurance won't go for this even though it's cheaper for them - but I may pick up the difference since i am very interested in learning if my body can keep CML below detection without the need of Sprycel! That would be great. I expect that my blood counts would normalize (RBC's especially) so I am not as anemic.

 

Of course - this could be a pipe dream. But I am willing to take the risk. Worse case in one month, is my PCR goes up and I go back on Sprycel. Best case - I live month to month Sprycel free and healthy.


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"


#2 Damerault

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Posted 05 January 2015 - 08:45 PM

Good luck! I would love to try and stop someday. Go for it.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000



Be well, Diane.


#3 pammartin

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Posted 05 January 2015 - 08:50 PM

I looked at my bill from Cleveland Clinic, although it is from 2012. BC/BS did not cover my test, my cost was $1690.

#4 janne

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Posted 05 January 2015 - 09:41 PM

My PCR cost on my Blue Cross EOB was $545.00. My PCRs are done at Mayo Clinic. This was for a date of service in October 2014. I do remember when I was having FISH tests done, those were quite a bit more expensive, more in the range of $1500.00. It is quite odd that there is quite a cost range in other facilities.


Dx'd: 8/2008. Started Gleevec 400 mg 11/08. 

Drug break 2011.

Started Tasigna 4/11 450 mg.

Reduction to 300 mg Tasigna 1/2012.

PCRU 9/2012.

12/2012 Detectable.

PCRU 4/2013 through 3/2015. (Reduced to 150 mg 7/2014)

12/2015  ? slightly detectable at probably less than 0.01% per Mayo Clinic.

4/2016 PCRU. Still at 150 mg Tasigna.

 

CESSATION: stopped treatment 7/20/2017. 

9/6/2017:  barely detectable at 0.01%. 

12/11/2017: PCR at 0.09% (did not do the monthly PCR testing.) 

12/18/2017: Inevitable call from Onc. Started back on Tasigna at 150 mg. (Considering Sprycel low dose.) 


#5 CallMeLucky

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Posted 05 January 2015 - 10:26 PM

PCR at genoptix is around $500.
Do you know if your insurance won't cover? I've never even thought about it; both my insurance companies always covered my tests with no question. If doctor orders a test why would they question? When I lowered my dose I went to monthly testing.
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%
 

 


#6 Billie Murawski

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Posted 05 January 2015 - 10:59 PM

I am deciding to whether to stop taking Sprycel (20mg) in a month or so. We're looking into the insurance implications of stopping and instead testing monthly for PCR. They are willing to let me stop, but only if I have monthly PCR's.

 

Anyone know how much a PCR costs? It's not clear from my medical statements since the treatment cost is wrapped in. I don't know if my insurance will substitute monthly Sprycel for monthly PCR - that's the question I have asked. I have to think that one PCR is cheaper than one month's worth of Sprycel?

 

I suspect the insurance won't go for this even though it's cheaper for them - but I may pick up the difference since i am very interested in learning if my body can keep CML below detection without the need of Sprycel! That would be great. I expect that my blood counts would normalize (RBC's especially) so I am not as anemic.

 

Of course - this could be a pipe dream. But I am willing to take the risk. Worse case in one month, is my PCR goes up and I go back on Sprycel. Best case - I live month to month Sprycel free and healthy.

If your ins does by chance cover a monthly pcr test, and if need be you have to go back on Sprycel make sure you get it all in writing. I'm on 20mg of Sprycel 18 months now, I'm srill pcru, but I still have iron deficency anemia, and I've had several courses of iron infusions I'm still concerned about pe but I would not want to take the chance of going off of it. If I remember correctly you've done this before. Please give it a lot of thought,there is always a chance that the cml could come back and you won't respond to a TKI. Michael I say it over and over, it's too soon these drugs are still too new.

Why are you so determined to make yourself a guniea pig? Why don't you become a rabbit,you'll have a hell of a lot more fun :) .

                                                                Billie



#7 scuba

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Posted 06 January 2015 - 07:47 AM

If your ins does by chance cover a monthly pcr test, and if need be you have to go back on Sprycel make sure you get it all in writing. I'm on 20mg of Sprycel 18 months now, I'm srill pcru, but I still have iron deficency anemia, and I've had several courses of iron infusions I'm still concerned about pe but I would not want to take the chance of going off of it. If I remember correctly you've done this before. Please give it a lot of thought,there is always a chance that the cml could come back and you won't respond to a TKI. Michael I say it over and over, it's too soon these drugs are still too new.

Why are you so determined to make yourself a guniea pig? Why don't you become a rabbit,you'll have a hell of a lot more fun :) .

                                                                Billie

 

Thanks Billie ... 

I don't think about it as the 'cml could always come back'. I have cml and will likely always have it. There will likely be a CML stem cell somewhere waiting to divide, I want to test whether my body has re-acquired the ability to keep the population in check naturally. My nutrition was deficient prior to diagnosis (very low vitamin D for one - near rickets level) and I was not taking Curcumin. I believe I may be able to keep CML at below detection or just around detection without the need for sprycel. I take such a low dose anyway and I have been able to get to this point. 


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"


#8 DebDoodah22

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Posted 17 January 2015 - 12:48 PM

On 20 mg Sprycel do you still have symptoms?

#9 scuba

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Posted 17 January 2015 - 01:40 PM

On 20 mg Sprycel do you still have symptoms?

 

Deb - I believe you mean do I have side affects from Sprycel? I do not have symptoms of CML and I have no side affects that I can feel from 20 mg Sprycel. I do not have any of the side affects we read about on this forum, skin, eyes, hair, etc. If it wasn't for the fact I take this tiny little pill every night, I would not know I have CML.

 

It's likely, however, that Sprycel affects other cell systems our bodies depend on using Tyrosine Kinase, but the highly selective nature of Sprycel to the ATP binding site in bcr-abl cells probably limits its impact. That's not to say it's zero. I still do have myelosuppression (mild) which is likely the result of the low dose I take. So I still intend to stop taking Sprycel so my body can use Tyrosine Kinase properly and enable my blood to truly normalize. Hopefully - any residual CML cells still present are held in check by my immune system and Curcumin/Vitamin D3, C, and K2. I will be testing this theory in about a month.


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"


#10 Red Cross Kirk

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Posted 18 January 2015 - 05:01 PM

My last charge from the pathologist was $353 of which I paid $298.80 after a provider write off of $54.20.


Kirk

 

9/25/2012  p210 transcript 118.7% IS @ Dx, begin Gleevec 400mg/day
12/2012  3.59% & bone marrow biopsy - no residual myeloproliferative features but detected 1/20 metaphases containing the Philadelphia chromosome
2013  0.914%, 0.434%, 0.412%
10/2013  0.360% & bone marrow biopsy - normal male karyotype with no evidence of a clonal cytogenetic abnormaltiy
2014  0.174%, 0.088%, 0.064%

2015  0.049%, decrease to Gleevec 200mg/day, 0.035%, 0.061%, 0.028%

2016  0.041%, 0.039%, 0.025%

2017  0.029%, 0.039%, switched to generic imatinib 200mg/day, 0.070%, 0.088%

2018  0.233%


#11 Billie Murawski

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Posted 22 January 2015 - 12:49 AM

On 20 mg Sprycel do you still have symptoms?

Hi Deb, I very gradually went from 100mg Sprycel to 70mg to50mg and now in June it will be 2 years on 20mg. I just had pcr test last week I haven't heard back from them but I'm pretty sure I'm still pcr.  I really haven't noticed that much difference than when I was on 100mg. But I have gone about 5 months without having to get iron infusions. Anemia has been my biggest problem on S hopefully the 20 mg will keep my anemia under control. I am starting to get a lot more joint pain and my hands are getting sore, but This cold has made everybody miserable, where is our January thaw? I have always said not everything we feel is tki related. And I sure am not getting any younger!  Good Luck Billie



#12 DebDoodah22

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Posted 23 January 2015 - 12:03 AM

Thanks Scuba, Very interesting...I went from 100 daily (ended up with PE) to 100 every other day then to 70 daily, now trying to move to 80 daily so I can drive the numbers down and get to under 1%....

I think I am MMR at .011, but my onc doesn't really lay that stuff out very clearly and doesn't welcome too many questions, so I'm a little confused. Your curcumen, D3, C, K2 sounds potentially less problematic than going with 80 mgs.

I hope your plan to go off Sprycel works out... I worry about reducing the effectiveness of TKIs by changing doses but would surely love to be off these things; since the the side effects you no longer experience, make life a little duller than it used to be.

Guess I'd just like to get where you are...greener pastures, don't you know. But still grateful to be hanging in here :)

#13 scuba

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Posted 23 January 2015 - 04:51 AM

Thanks Scuba, Very interesting...I went from 100 daily (ended up with PE) to 100 every other day then to 70 daily, now trying to move to 80 daily so I can drive the numbers down and get to under 1%....

I think I am MMR at .011, but my onc doesn't really lay that stuff out very clearly and doesn't welcome too many questions, so I'm a little confused. Your curcumen, D3, C, K2 sounds potentially less problematic than going with 80 mgs.

I hope your plan to go off Sprycel works out... I worry about reducing the effectiveness of TKIs by changing doses but would surely love to be off these things; since the the side effects you no longer experience, make life a little duller than it used to be.

Guess I'd just like to get where you are...greener pastures, don't you know. But still grateful to be hanging in here :)

 

Hi Deb,

 

Sprycel is very potent in its effect on bcr-abl. It targets the higher order cells that help proliferate CML. When it works, it can work very well. For many people taking Sprycel, they often don't need to take maximum dose, but are prescribed that maximum level anyway because most Oncologists just follow the NCCN protocols. It's not their life - just their job. And their job comes with medical liability insurance. Research Oncologists help discover what works and write the NCCN guidelines - so they tend to be more experimental. My first oncologist was rigid on protocol. My second Oncologist, who is also a researcher in the field, is much more willing to test and accomodate. It was he who told me we will reduce dose to discover what level works best for me. And that level turned out to be 20mg. More - and I would likely suffer severe myelosuppression. 

 

If your doctor is not willing to explain things to you or welcome questions, you need a new doctor. But I will say that if you are at PCR <= 0.011, you are doing terrific. You could lower your dose from 70mg to 40 and then test PCR in four to six weeks to see if your response stays the same. That's what I did - all the way to 20 - and it was good. Now I am going to test going off the drug and see if I can maintain my PCRU status. Odds are not great that I will, but they are not zero, so I am going to try. Worse case, my PCR jumps up and I have to go back on the drug. 


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"


#14 pammartin

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Posted 26 January 2015 - 12:20 PM

Since I had to pay out of pocket for my testing, I have contacted Cleveland Clinic. I want to know why my testing is considerably higher than all others posting to this discussion.

Good luck Scuba, will be waiting to see your future response off Sprycel.

#15 rcase13

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Posted 26 January 2015 - 01:00 PM

If you have insurance you get a negotiated rate. If you pay out of pocket you may not get that negotiated rate. Just another example of how terrible our healthcare situation is.

Not complaining too bad though. I am very thankful preexisting conditions don't apply anymore. I was laid off just before being diagnosed and lost my insurance.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#16 hannibellemo

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Posted 03 February 2015 - 07:34 AM

Westapher,

 

IMHO, this should have its own thread rather than being buried at the bottom of a thread that doesn't really relate to yours in a substantial way. I'm sure there are others who would be interested in this who might never see it posted here.

 

Just copy and paste as a new discussion and give it a title that relates to the content. This is very interesting!


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>


#17 rcase13

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Posted 03 February 2015 - 07:52 AM

I agree no matter what our political beliefs we need to understand how the various health insurance options relate to our unique situations. I too have paid nothing for my Tasigna and honestly don't really understand why.

10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!


#18 scuba

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Posted 03 February 2015 - 09:32 AM

 

 

....


Edited by scuba, 08 April 2016 - 01:56 PM.

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"


#19 Frogiegirl

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Posted 03 February 2015 - 09:51 AM

rcase, I was under the impression you had the Novartis patient assistance card to help in the cost of the tasigna?


Diagnosed Oct 2013 Started 600mg of Tasigna  on Nov 4th. Lowered dose a few months later to 300mg due to side affects stayed here declining PCR until March 2015 small jump from 0.0072 to 0.0083 scarred my doc into full dose of Tasigna again 600mg(been miserable since) but reached PCRU 06/15/2015(next test) and have been there ever since. Hoping to have another little one. I have the support of my doc to go off anytime, just scared to jump. might go two years PCRU but he said it wont make much of a difference. I just figured I could possibly go into a trial while preggers if I got the two years behind me.

Nov 8th 2017 went off Tasigna

Dec 1st PCRU off TKI

Jan 5th PCR Detected .0625

Feb 1st PCR Detected .7815

Added 8-6 grams Curcumin daily in Feb

March 3rd PCR Detected 3.2646 YIKES!

 stopped trying for baby after February reading. will start new TKI march 16th 2017 (Sprycel)

FYI I'm not done trying for my last little one.


#20 rcase13

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Posted 03 February 2015 - 10:18 AM

rcase, I was under the impression you had the Novartis patient assistance card to help in the cost of the tasigna?

I am, but even with that card I should be paying a small amount. I have yet to pay anything. My understanding of the card is the first three months was free and then $25 a month after that.

 

Keep us updated Scuba! The thought of one day getting off the TKI is indeed exciting. I also worry as well what it is doing to me long term.


10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)

01/02/2015 0.06% Tasigna 600mg
04/08/2015 0.01% Tasigna 600mg
07/01/2015 0.01% Tasigna 600mg
10/05/2015 0.02% Tasigna 600mg
01/04/2016 0.01% Tasigna 600mg
04/04/2016 PCRU Tasigna 600mg
07/18/2016 PCRU Tasigna 600mg
10/12/2016 PCRU Tasigna 600mg
01/09/2017 PCRU Tasigna 600mg
04/12/2017 PCRU Tasigna 600mg
10/16/2017 PCRU Tasigna 600mg
01/15/2018 PCRU Tasigna 600mg

 

Cancer Sucks!





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