Advanced Member
Posted 06 December 2016 - 10:02 AM
As I have mentioned before, for 2017, Kaiser has classified generic imatinib mesylate as a Tier 2 drug, requiring Medicare patients only a $15 copay per monthly refill; a total of $180 for the calendar year. At least that is what it says in the booklet.
re: my original post http://community.lls...tinib/?p=192453
Unfortunately Kaiser is not available in Indiana. All of the 23 or so plans available to me still have the generic imatinib mesylate classified as a Tier 5, specialty, drug.
10/20/2016 BCR-ABL:ABL = 81.622
01/11/2017 BCR-ABL:ABL = 8.028
04/12/2017 BCR-ABL:ABL = 0.157
07/07/2017 BCR-ABL:ABL = 0.000
10/04/2017 BCR-ABL:ABL = 0.041
11/28/2017 BCR-ABL:ABL = 0.000
Advanced Member
Posted 06 December 2016 - 10:56 AM
Advanced Member
Posted 06 December 2016 - 03:38 PM
I'll be switching to Medicare in a few months, and it looks like all of the plans available in my area classify imatinib as a Tier 5 specialty drug, as well. Sux.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 06 December 2016 - 03:46 PM
Unfortunately Kaiser is not available in Indiana. All of the 23 or so plans available to me still have the generic imatinib mesylate classified as a Tier 5, specialty, drug.
Thanks for checking Shweflen; hopefully the price of generic imatinib mesylate will continue to come down to benefit you and others who are also on Medicare.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 07 December 2016 - 10:27 PM
I'll be switching to Medicare in a few months, and it looks like all of the plans available in my area classify imatinib as a Tier 5 specialty drug, as well. Sux.
Antilogical, have you entertained the thought of trying to further lower your dosage; maybe first alternating between 300 and 200 for six weeks, or so, before your next Bcr-Abl. I'm betting it wouldn't have a negative effect on your response.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 08 December 2016 - 04:08 PM
Buzz - You are probably right, but...
(1) I don't like to play with dosages without letting the doc know, &
(2) during my last office visit with my HEM/ONC, I had a somewhat unpleasant conversation when I asked the ONC his opinion of dropping my dosage of Gleevec to 200mg, since my PCR results have always been extremely low & stable. Before I could get a word out to further explain my goal of reducing the cost of medicines once I'm on Medicare, THE ONC WENT BALLISTIC! I got a long, animated lecture about not respecting how dangerous the disease is, that I'm on a reduced dose (300mg) anyway, that reduction often leads to uncontrolled mutation (!!!) & I could die, etc. I said ok, you're the expert, we can keep an eye on the reduction trials. That lead to another outburst. The ONC then said I was welcome to get a 2nd opinion, but if I or another doc ever reduced my dose, I was basically fired as a patient. I just sat there in silence, afraid to bring anything else up. My theory is that maybe someone stopped taking their meds on their own & relapsed badly. My family doc thinks the ONC was just having a bad day. Before this, I was able to discuss anything with him. Not this time.
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 08 December 2016 - 04:31 PM
Buzz - You are probably right, but...
(1) I don't like to play with dosages without letting the doc know, &
(2) during my last office visit with my HEM/ONC, I had a somewhat unpleasant conversation when I asked the ONC his opinion of dropping my dosage of Gleevec to 200mg, since my PCR results have always been extremely low & stable. Before I could get a word out to further explain my goal of reducing the cost of medicines once I'm on Medicare, THE ONC WENT BALLISTIC! I got a long, animated lecture about not respecting how dangerous the disease is, that I'm on a reduced dose (300mg) anyway, that reduction often leads to uncontrolled mutation (!!!) & I could die, etc. I said ok, you're the expert, we can keep an eye on the reduction trials. That lead to another outburst. The ONC then said I was welcome to get a 2nd opinion, but if I or another doc ever reduced my dose, I was basically fired as a patient. I just sat there in silence, afraid to bring anything else up. My theory is that maybe someone stopped taking their meds on their own & relapsed badly. My family doc thinks the ONC was just having a bad day. Before this, I was able to discuss anything with him. Not this time.
Antilogical, sorry that you had such an unfortunate experience with your oncologist. It doesn't sound as if he is up to date on dosage reduction with his mention that it can lead to uncontrolled mutation and that you could die. It may well be time for you to look into finding a more open minded forward thinking oncologist.
My oncologist didn't want me to originally begin reducing my dosage, let alone continue to reduce my dosage, but she was willing to listen to my arguments and understanding all along the way. Once she understood that I had read through all of the available Stop Studies and knew the odds and obstacles she was OK with it, although she did argue against every added reduction.
This is a learning experience for all of us, including the oncologists.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 08 December 2016 - 04:50 PM
Buzzm and Antilogical - This has been such a problem subject! My onc is one of the CML biggies, and he definitely subscribes to this belief. How can someone who is steeped in the science research of CML, cancer, genetics, with tons and tons of experience - a known name in the field - how can he be wrong? But when you come to this forum, it's treated as voodoo and substandard, backward thinking. Yes, he honestly believes that you can bring on resistance with a substandard dose. We've never talked about context, however, and I'm going to ask him on my next visit if he would change his mind if, say, 2 years went by all PCRU, would he reduce then?
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 08 December 2016 - 05:42 PM
Kat, there isn't any evidence that reduced dosage can lead to mutations, or resistance.
For the benefit of yourself and others please add your CML history into your Signature
02/2010 Gleevec 400mg
2011 Two weakly positives, PCRU, weakly positive
2012 PCRU, PCRU, PCRU, PCRU
2013 PCRU, PCRU, PCRU, weakly positive
2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)
2015 300, 250, 200, 150
2016 100, 50/100, 100, 10/17 TFR
2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000
2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17
At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.
In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.
longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation. GFR and creatinine vastly improved after stopping Gleevec.
Cumulative Gleevec dosage estimated at 830 grams
Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.
Trey's CML Blog - Stopping - The Odds - Stop Studies - Discussion Forum Cessation Study
Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt
Advanced Member
Posted 08 December 2016 - 06:20 PM
What can I say? I said it, above. He's firm. I've seen his temper, and don't want to go there again, but I'll see if I can ask again. But since the visit is exactly 1/10 the length of time it takes to get there and back, it'll have to be quick!
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 09 December 2016 - 08:30 AM
Advanced Member
Posted 09 December 2016 - 06:04 PM
Words cannot hurt anyone. I've no time for closed-minded physicians (or anyone else, for that matter) who won't allow for the exchange of ideas! CML biggie, or not. That is simply disrespectful.
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>
Advanced Member
Posted 10 December 2016 - 12:12 AM
My doc is a bit similar, when I talk to him about reducing testing he brings up possible mutations since I have stopped the TKI. Unless there has been things secretly published, I've never seen any information on this come from from the trials. The last time I saw him he said the same thing, but he also said it was up to me to take less tests, so he appears to be coming round to the idea. I continue with the two monthly testing as I am trying to work out a way to come off my cholesterol meds "safely".
At least mine just takes awhile to get used to ideas, I was his first patient to reduce and then stop. He now has two others, probably on two monthly testing, when I move to every three months and it shows as being okay, he will adjust the others.
Perhaps they feel CML is easier to deal with as we have TKIs and they feel at least with this one they can set and forget to a certain extent and concentrate on their other blood cancer patients.
Advanced Member
Posted 10 December 2016 - 12:13 PM
"Set and forget." Sad, understandable, and, I regretfully think, probably true.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
Advanced Member
Posted 10 December 2016 - 11:43 PM
I am on Onc #7. I hope #8 is named Henry.
Advanced Member
Posted 11 December 2016 - 11:24 AM
I am on Onc #7. I hope #8 is named Henry.
7! Why so many? I've had an Edward and a Michael. If I come across a Henry, I'll send you the contact info. 
Kirk
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%
Advanced Member
Posted 11 December 2016 - 05:59 PM
I am on Onc #7. I hope #8 is named Henry.
...or perhaps a Hermit, named Herman....
Dx: Sudden severe anemia detected 07/2011, followed by WBC spike. CML Dx 02/2012.
Rx: 03/2012-Gleevec400. Reduced 02/2013 to Gleevec300 due to side effects (low blood counts).
Response: PCR-Und within 7 mo. on G400. Maintained MMR4-MMR4.5 on G300. PCR-Und since 02/2016.
Advanced Member
Posted 12 December 2016 - 02:05 PM
Advanced Member
Posted 12 December 2016 - 06:25 PM
Understandable, Trey, since you were probably very threatening to their egos, knowing more than they do. Just saying. 
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>
Advanced Member
Posted 13 December 2016 - 01:02 PM
Swerving back to the questions about exploding oncs and theories of resistance - I had my visit yesterday and we discussed the updates on DESTINY and DASFREE and EURO-SKI. I point blank asked him what he thought was happening with the successful quitters, and did he personally feel they were endangering themselves for the far future. He gave me the "nobody knows" thing. When pressed, he said he suspects there are some inadvertent killings of the stem cells at the level of generation, that over time they become exhausted as they come out and happen to get killed. (My narrative words, not his!) That could explain why each year more after 5 years confers a 16% increase in the chance of TFR. On the tricky part about resistance, he wouldn't go there. He has said in the past that he is happier having a patient stop altogether than reduce the dose below a therapeutic level. BUT. He says he's quite comfortable letting his patients who meet the various criteria try cessation as long as they are compliant with the extra monitoring. He doesn't push them either way. He let me reduce the Sprycel to 50mg, so . . . victory? Also, no exploding onc.
Dx July 2009 on routine physical. WBC 94. Started Gleevec 400 mg Sept 2009. MMR at 2yrs. Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved. Kidney issues developed because of Gleevec. Switched to Sprycel 70 mg in Aug 2011. Above side effects disappeared or improved. Have been MR3.5 - 4.5 ever since. Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017. After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS. Pleural effusion returned within a couple of months, same as before (moderate, left side only). Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved. At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.
0 members, 1 guests, 0 anonymous users
