Hey Gang,
I was diagnosed with skin cancer after a biopsy of a small nodule growth on my face. My dermatologist thinks this was a result of my leukemia... Onc says otherwise... Basal cell carcinoma of the nodular type. Went for a MOHS surgery and had it removed in 2 rounds. Since then my spleen has become reactive to everthing and I'v had to stop Tasigna after 6 year's of religious TKI adherence. Iv decided I think to get into the LAST trial since my spleen and liver are now suddenly giving me so much problems. Had a bout of staph infection in my nose and Noro virus as well since then. Trying not to think the worst right now as you all can imagine, been off Tasigna since Jan 1 2016 and spleen is still giving me grief.
Soundoff
Skin Cancer
Started by
soundoff
, Jan 15 2016 01:33 AM
25 replies to this topic
#2
Buzzm1
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Posted 15 January 2016 - 02:48 AM
Hey Gang,
I was diagnosed with skin cancer after a biopsy of a small nodule growth on my face. My dermatologist thinks this was a result of my leukemia... Onc says otherwise... Basal cell carcinoma of the nodular type. Went for a MOHS surgery and had it removed in 2 rounds. Since then my spleen has become reactive to everthing and I'v had to stop Tasigna after 6 year's of religious TKI adherence. Iv decided I think to get into the LAST trial since my spleen and liver are now suddenly giving me so much problems. Had a bout of staph infection in my nose and Noro virus as well since then. Trying not to think the worst right now as you all can imagine, been off Tasigna since Jan 1 2016 and spleen is still giving me grief.
Soundoff
Sorry to hear of your problems Soundoff. We'll be pulling for your recovery as well as a successful cessation. Glad you are in a position to go off the TKI.
Buzz
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.
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#3
Trey
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Posted 15 January 2016 - 10:39 AM
The spleen has been responding to your infection and norovirus. It is part of the lymphatic system which fights infections and viruses. Norovirus can use the spleen as a base for replication causing swelling.
#4
CML2012
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Posted 15 January 2016 - 09:15 PM
I have no idea if there is any connection but I was diagnosed with basil skin cancer under my eye same month as CML. Had MOHS (3 rounds) and they said 99.5% chance basil would not returned. 1 and 1/2 years later basil back in same spot, MOHS again (another 3 rounds). 6 months later melanoma on my stomach. Just sharing....
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#5
Buzzm1
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Posted 15 January 2016 - 10:43 PM
Soundoff, when is your next PCR? What is your PCR history?
Thanks,
Buzz
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
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#6
soundoff
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Posted 15 January 2016 - 11:12 PM
Thanks for caring guys everyone's support is greatly appreciated... As of November 2015 I'm PCRU and have bounced between detectable but unquantifiable and PCRU since Jan 2015. Hopefully I'm still PCRU going forward. I'll be seen at Stanford on the 26th of Jan and then at UCSF on the 28th of Jan to be enrolled in the LAST trial.
Obviously I would like to restart back on the Tasigna if everything calms back down with the spleen and liver. This maybe my calling to see if I'm cured, maybe not.
CML2012 man I'm sorry to hear about the melanoma. What are you going to do about that and how did you find out?
Obviously I would like to restart back on the Tasigna if everything calms back down with the spleen and liver. This maybe my calling to see if I'm cured, maybe not.
CML2012 man I'm sorry to hear about the melanoma. What are you going to do about that and how did you find out?
#7
CML2012
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Posted 16 January 2016 - 12:30 PM
I had a mole biopsy and it came back negative but the dermatologist said I could have it removed if I wanted to since it was rather large. I waited 3 months (spring break/school was out) and had it removed. They always send it to the lab. It came back melanoma. I went back and they removed a larger area until they got clear margins. So thankfully I am good. I have regular dermatologist visits because of the basil skin cancer so that is why the mole was checked to begin with. Also I was diagnosed in December 2012 with CML and have been PCRU since June 2015.
Diagnosed CML December 2012
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
#8
Buzzm1
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Posted 16 January 2016 - 02:37 PM
(snip) As of November 2015 I'm PCRU and have bounced between detectable but unquantifiable and PCRU since Jan 2015. Hopefully I'm still PCRU going forward. I'll be (snip) at UCSF on the 28th of Jan to be enrolled in the LAST trial.
(snip)
Soundoff, it's my understanding that the LAST Study requires two years of contiguous PCRU for enrollment?
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
#9
soundoff
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Posted 16 January 2016 - 02:38 PM
Or detectable but unquantifiable ie 4.5 log or greater....which I have been for 4 years
https://clinicaltria...02269267&rank=1
This is a non-randomized, prospective, single-group longitudinal study. The overall objective is to improve decision making for TKI discontinuation in eligible CML patients. Patients with CML on treatment with imatinib, dasatinib, nilotinib, or bosutinib and are in confirmed deep molecular response will stop their TKI. Confirmed deep molecular response is defined as BCR-ABL < 0.01%, (> MR4 i.e. > 4 log reduction) for at least 2 years. The study will closely monitor patients using standard RQ-PCR testing for molecular recurrence, testing them monthly for 6 months, then every other month until 24 months, and then quarterly until 36 months. Concurrently, the study will assess a wide range of PROs before stopping TKIs and after discontinuation in conjunction with PCR testing, though at fewer time points, utilizing online and/or phone questionnaires. Patients who have molecular CML recurrence based on RQ-PCR will restart imatinib, dasatinib, nilotinib, or bosutinib and will continue to be monitored for disease status and health status until the end of the study.
https://clinicaltria...02269267&rank=1
This is a non-randomized, prospective, single-group longitudinal study. The overall objective is to improve decision making for TKI discontinuation in eligible CML patients. Patients with CML on treatment with imatinib, dasatinib, nilotinib, or bosutinib and are in confirmed deep molecular response will stop their TKI. Confirmed deep molecular response is defined as BCR-ABL < 0.01%, (> MR4 i.e. > 4 log reduction) for at least 2 years. The study will closely monitor patients using standard RQ-PCR testing for molecular recurrence, testing them monthly for 6 months, then every other month until 24 months, and then quarterly until 36 months. Concurrently, the study will assess a wide range of PROs before stopping TKIs and after discontinuation in conjunction with PCR testing, though at fewer time points, utilizing online and/or phone questionnaires. Patients who have molecular CML recurrence based on RQ-PCR will restart imatinib, dasatinib, nilotinib, or bosutinib and will continue to be monitored for disease status and health status until the end of the study.
#10
Gail's
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Posted 16 January 2016 - 02:47 PM
I, too, had basal cell cancers removed from my face but prior to cml by about 2 years. Probably ostrich like of me but I haven't been back to my general dermatologist since then, mostly because I don't much like him. A personality thing combined with him not being willing to biopsy the sites since it didn't look like cancer. My PCP removed the first one and sent it to pathology even though she thought it wasn't cancer. Had 5 spots removed with Moh's surgery too. I think mine were definitely sun exposure related and not related to cml.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088
#11
Buzzm1
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Posted 16 January 2016 - 02:50 PM
Thanks for the update Soundoff.
We're close to the same duration and response; I had four "weakly positive. not measurable," the last one Oct., 2013.
The efficacy of Tasigna is somewhat better than Gleevec, which I am on..
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
#12
Buzzm1
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Posted 16 January 2016 - 03:05 PM
Or detectable but unquantifiable ie 4.5 log or greater....which I have been for 4 years
https://clinicaltria...02269267&rank=1
(snip)Patients who have molecular CML recurrence based on RQ-PCR will restart imatinib, dasatinib, nilotinib, or bosutinib and will continue to be monitored for disease status and health status until the end of the study.
In the event of CML recurrence, does the LAST Study then provide the required drugs (free)? and at what dosage? ..
although I don't expect to be enrolling in the LAST Study, I couldn't ever see myself going back on Gleevec 400mg ...
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
#13
soundoff
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Posted 16 January 2016 - 03:06 PM
Sounds like a few of us are eligible. I guess this was just the push I needed for me to man up.
I'm sure I will have a few more spots removed as I see new things cropping up. I guess that's just the way the cookie crumbles.
Buzzm1 I doubt they provide anything but monitoring. I have a lot (years) of Tasigna on hand if ya need some to hold you over.
I'm sure I will have a few more spots removed as I see new things cropping up. I guess that's just the way the cookie crumbles.
Buzzm1 I doubt they provide anything but monitoring. I have a lot (years) of Tasigna on hand if ya need some to hold you over.
#14
AllTheseYears
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Posted 16 January 2016 - 11:08 PM
Isn't it possible that a crappy immune system plays a role in both CML and skin cancer? I've had many skin cancers treated, beginning 30 years ago - basal cell, squamous and melanoma. Lost count. Diagnosed with CML about 14 years ago; melanoma diagnosis 10 years ago. One body, one problem, multiple results I'd say.
#15
Buzzm1
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Posted 16 January 2016 - 11:20 PM
Soundoff, thanks for the offer; I have my own stash of Gleevec 100mg.
When the time comes you won't have a hard time getting rid of the leftover Tasigna.
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
#16
soundoff
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Posted 17 January 2016 - 12:09 AM
My dermatologist thinks my skin cancer is a direct result of my "bad immune system from leukemia".
#17
Melanie
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Posted 17 January 2016 - 12:41 AM
My dermatologist feels the same as yours sound off. Although I've never had melanoma, I've had multiple basals removed. I have seen her every two months for last couple years and have always had something burned off or removed. I also had a cluster of small worts by my ankle that she finally had success in removing after several attempts. She said that because the worts were a virus, I needed to get rid of them so my immune system could concentrate on just the CML. During my visit last week, I only had one suspected basal removed and a couple suspicious spots burned. Don't have to go back for 4 months unless I find something that needs attention. I believe it's definitely TKI related, although I was guilty of worshiping the sun when I was younger.
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)
#18
Buzzm1
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Posted 17 January 2016 - 12:11 PM
Known Side-effects
Gleevec Imatinib http://bit.ly/1SWEl7W
Tasigna Nilotinib http://bit.ly/1RNVh1i
Sprycel Dasatinib http://bit.ly/1Klbqn3
Bosulif Bosutinib http://bit.ly/1OXC7DL
Iclusig Ponatinib http://bit.ly/1nbKWzI
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
#19
soundoff
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Posted 17 January 2016 - 10:52 PM
I would assume there is a link
#20
SandyG353
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Posted 18 March 2016 - 01:55 PM
My daughter has had numerous pre-cancerous growths removed from her body. Some were in places that are covered by clothes. The dermatologist stated that Gleevec makes one susceptible to skin cancer, and that she should use 60 sunblock. My guess is that if she was on one of the other CML drugs, he would say the same thing. Part of my daughter's job involves being outdoors so she is careful to make sure that she uses sunblock.
Sandy
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