Does anyone know if Sprycel affects bone density by causing the bones to become thinner/ less dense?
Advance thanks to anyone who responds to this question.
Sprycel and bone density
Started by
Kali
, Aug 13 2017 05:05 PM
7 replies to this topic
#1
Kali
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Posted 13 August 2017 - 05:05 PM
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#2
hannibellemo
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Posted 17 August 2017 - 12:29 PM
Kali,
My Mayo onc wanted me to get a baseline bone density scan in 2009 due to the fact that Gleevec, at least, can leach calcium from bones. Mine was normal. I had another in 2017 and it was still normal, I am 65. I switched to Sprycel late in 2009.
It might be a good idea to get a baseline if you haven't.
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>
#3
Kali
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Posted 17 August 2017 - 01:58 PM
Hi!
I had a dexta scan about 3 years ago and had mild osteopenia. Now my new dexta scan shows my osteopenia is worse and I have osteoporosis in my right fermur. I was floored at such an advance just from 3 years ago. That is also when I was diagnosed with CML and started Sprycel. But it seems that Sprycel may actually help bone density, do maybe my numbers have nothing to do with the TKI. I had stomach issues for months and didn't eat very well at all losing ten pounds. Maybe the poor nutrition caused this. Plus I have been Vitamin D deficient for years. I do take D but it doesn't seem to be enough, so I am going to take more. I just dread taking another medication now for osteoporosis!
I had a dexta scan about 3 years ago and had mild osteopenia. Now my new dexta scan shows my osteopenia is worse and I have osteoporosis in my right fermur. I was floored at such an advance just from 3 years ago. That is also when I was diagnosed with CML and started Sprycel. But it seems that Sprycel may actually help bone density, do maybe my numbers have nothing to do with the TKI. I had stomach issues for months and didn't eat very well at all losing ten pounds. Maybe the poor nutrition caused this. Plus I have been Vitamin D deficient for years. I do take D but it doesn't seem to be enough, so I am going to take more. I just dread taking another medication now for osteoporosis!
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#4
jmoorhou
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Posted 17 August 2017 - 03:25 PM
The naturopath I went to said you take up to 10,000 units Vitamen D per day, just get tested.
Diagnosed 3/2014 WBC 28 Non detectable within 3 monthsGleevec 400 mg 5/2014 one hour after dinner really improves nausea300 mg 12/15/2016200 mg and 300 mg Gleevec 2/25/2017 (after 3 years on Gleevec) For last four months taking 300 mg per day. Last CMC showed liver enzymes elevated, went to a good Naturopath and he recommended 4 Tumeric, 10,000 mg Vitamen D, and 3 milk thistle (silymarin) daily. Also use One<p>Day Detox Dandeloin tea, and Nettle Tea and a slice of ginger every day...in two months liver tests were below normal.Janis
#5
Buzzm1
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Posted 17 August 2017 - 03:31 PM
from WebMD re: Vitamin D and osteoporosis http://www.webmd.com...or-osteoporosis
Experts recommend 600 international units (IU) of vitamin D per day for adults up to age 70, and 800 IU for people 71 and older. If you're not getting enough from sunlight and food, you may need to take a supplement.
You can get vitamin D in multivitamins and also in combination with a calcium supplement, as well as on its own. Keep in mind, though, that many diet supplements have vitamin D, so before you take another one, check the labels and let your doctor know what you're taking. Getting too much vitamin D, especially above 4,000 IU per day, can be dangerous.
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
#6
Noodle
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Posted 17 August 2017 - 05:03 PM
Kali,
I am an AML survivor so I hope you don't mind me adding my 2 cents. I too, had a Dexi that progressed to full blown osteoporosis in 3 years. After extensive research, I've decided the prescription meds used have far too many scary side effects coupled with a false sense that they work when really They drain bone density from other areas, like the jaw bone.
The key labs you need to have checked are calcium, PTH, magnesium and D. As others have said, getting your D to high normal 60 to 70 is key for this and IMHO, cancer prevention. Also, if possible start weight bearing exercise. I also use the following supplements and plan to recheck in a year.
Read Scuba's post on the vit D
topic:
http://community.lls.../16330-vitamin-d-reprise-and-cancer/
Vit k2
Magnesium oxide 150
strontium
Bone up
5000 IU D3
This regime has helped many I know gain density without the side effects of the RX.
Hope this helps
Blessings
Julie
I am an AML survivor so I hope you don't mind me adding my 2 cents. I too, had a Dexi that progressed to full blown osteoporosis in 3 years. After extensive research, I've decided the prescription meds used have far too many scary side effects coupled with a false sense that they work when really They drain bone density from other areas, like the jaw bone.
The key labs you need to have checked are calcium, PTH, magnesium and D. As others have said, getting your D to high normal 60 to 70 is key for this and IMHO, cancer prevention. Also, if possible start weight bearing exercise. I also use the following supplements and plan to recheck in a year.
Read Scuba's post on the vit D
topic:
http://community.lls.../16330-vitamin-d-reprise-and-cancer/
Vit k2
Magnesium oxide 150
strontium
Bone up
5000 IU D3
This regime has helped many I know gain density without the side effects of the RX.
Hope this helps
Blessings
Julie
Blessings,
Julie
DXD 22 March 2013 AML M4 Inversion 16 Negative FLT 3 & CKIT
Induction 7+3 & 4 Rounds of HiDAC, lowered dose due to slow count recovery.
Qrtrly PCR & Phlebotomy for high iron stores
Almighty God is my redeemer and HEALER!!@
Psalm 103:1-5 - "Bless the Lord, O my soul, and forget not all His benefits.... who heals all your diseases..
Mark 10:27 (New Living Translation) - Jesus looked at them intently and said, "Humanly speaking, it is impossible. But not with God. Everything is possible with God."
#7
Kali
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Posted 17 August 2017 - 06:34 PM
Thank you to all who have responded with good information.
I have upped vitamin D from 2,000 to 4,000 and added the Vitamin K3 just this week.
Looking at Scubas regimen has been helpful as well. I take biotin too. Looks like fI need to consider magnesium as well.
And started exercising with weights, walking and yoga.
I am scared of the osteoporosis meds but will have to figure out what is best plan. My osteoporosis number in my fermur was -3.1. I will need to find out if I can do supplements and get retested in a few months. It is difficult to know.
Thanks so much for all the suggestions and information. I appreciate it so much
I have upped vitamin D from 2,000 to 4,000 and added the Vitamin K3 just this week.
Looking at Scubas regimen has been helpful as well. I take biotin too. Looks like fI need to consider magnesium as well.
And started exercising with weights, walking and yoga.
I am scared of the osteoporosis meds but will have to figure out what is best plan. My osteoporosis number in my fermur was -3.1. I will need to find out if I can do supplements and get retested in a few months. It is difficult to know.
Thanks so much for all the suggestions and information. I appreciate it so much
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
#8
Kali
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Posted 17 August 2017 - 06:36 PM
Noodle,
How has the strontium worked for you? I read up on it. Sounds interesting.
How has the strontium worked for you? I read up on it. Sounds interesting.
Diagnosed June 2014. WBC 34.6 and Platelets 710 at diagnosis. Bone Marrow Biopsy pre-op diagnosis: Leukocytosis. Post-op diagnosis: the same, Leukocytosis. No increase in blasts <1%. Quantitative BCR/ABL testing and formal chromosome analyses confirmed CML diagnosis.<p>Supplemental Report: Abnormal BCR/ABL1 FISH result t(9;22). Molecular test for BCR/ABL1 fusion transcript by RT-PCR positive for BCR/ABL1 transcripts, b3a2 at 133.561% and b2a2 at 0.001% and ela2 at 0.001%. Followup monitoring showed negative for ela2. BCRABL1 was 148.007 at diagnosis. Started Sprycel 100 mgm and blood work was normal at 3 weeks. MMR at 3 months: 10/4/14 was 0.106. Stayed in that range with one dip to 0.04 once and back to 0.1 range. Oct. 2015, BCRABL1 was not detected, following with 0.0126, 0.0092, <0.0069, 0.0000, <0.0069, 0.0000. Now on 70 mgm of Sprycel. Continuation of PCR test results: 07/07/2017, 0.0000%, now on 50 mgm of Sprycel, PCR 9/12/17 0.0074%, PCR 11/3/17 0.0000%, PCR 1/17/2018 0.0000%
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