
CML AND ARTHRITIS ( and oncologist)
#1
Posted 04 December 2015 - 10:11 PM
Also I have read that blood marrow biopsy is the way in which CML is diagnosed - I have never had one and the only reason I even know about this is from readings here - I am concerned about my doctor now - is a bone marrow biopsy absolutely necessary apparently my doctor does not think so - looking forward to your replies - thank you guys so much - Marta
#2
Posted 04 December 2015 - 11:00 PM
#3
Posted 05 December 2015 - 08:29 AM
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#4
Posted 05 December 2015 - 11:00 AM
Joint pain is relatively common for Sprycel users. The pain often decreases over the longer term.
A bone marrow biopsy (BMB) should be done at diagnosis. Read about BMB here:
#5
Posted 05 December 2015 - 11:23 AM
Curcumin is very effective against joint pain due to osteoarthritis:
http://www.lifeexten...mmation/page-01
Arthritis runs in my family - once I started taking Curcumin, arthritis faded away. I haven't had any arthritis issues in several years.
Not sure joint pain is any more common for Sprycel users vs. any other TKI.
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"
#6
Posted 05 December 2015 - 11:37 AM
Another thought to consider is that joint pain is often not arthritis. There are a number of possible reasons for joint pain. TKI drugs can induce joint pain which usually is not arthritis. And often it is the ligaments and tendons which ache, which can also be caused by TKI drugs. People like rcase and Scuba have arthritis, but many of us just had/have TKI induced joint pain. So it is a good idea to have a proper diagnosis of true arthritis.
#7
Posted 06 December 2015 - 06:22 PM
I got gout when I took diuretics for high blood pressure while on Gleevec. I stopped them and gout went away...
#8
Posted 07 December 2015 - 12:25 PM
TKI Withdrawal Linked to Osteoarticular Pain http://bit.ly/1OdZYdX
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
Posted 07 December 2015 - 01:46 PM
Hi Marta, I'm on Sprycel 20 mg and I get joint pain, I don't have arthritis. It's odd that your onc didn't do a bmb.
Good luck Billie
#10
Posted 12 December 2015 - 08:30 PM
#11
Posted 12 December 2015 - 10:29 PM
Hello to all my CML friends - I have a question about Sprycel and arthritis - I have been taking Sprycel since March when I was first diagnosed - started at 100 mg as of October lowered to 80 mg - my question is this : several months ago I noticed that my ankle and my knee started to bother me but I really paid no attention to it - as of approximately 2 weeks ago the pain has increased to the point where walking is very difficult - I thought perhaps arthritis related to the Sprycel and called my doctor - he said there is no connection between Sprycel and arthritis ( or pain in joints ) - i would like to know whether anyone knows of a connection between the meds and the pain in joints -
Also I have read that blood marrow biopsy is the way in which CML is diagnosed - I have never had one and the only reason I even know about this is from readings here - I am concerned about my doctor now - is a bone marrow biopsy absolutely necessary apparently my doctor does not think so - looking forward to your replies - thank you guys so much - Marta
I was diagnosed based on one PCR test, no BMB. It was what Trey said about a BMB being necessary for a complete diagnosis that kept bugging me. My WBC and neutrophils continued to remain elevated despite my miraculous 0.000% at 3 mo. on a TKI. So, I went to a new doctor who offered me the option to go off of the TKI and see if I loose my response and will do a BMB at 6 months out. New doc believes I may have a different diagnosis. Sad thing is that I had three doctors tell me the the single PCR test was sufficient for a CML diagnosis.
#12
Posted 15 December 2015 - 09:40 PM
I guess I am the opposite. I am 45 and have had to deal with arthritis in my hands and knees most of my adult life. When I started Tasigna my arthritis symptoms greatly reduced. It is the only positive thing about CML for me.
Rcase13
Tks so much for your post. I am lots older than you and on Tasigna for last 10 weeks my arthritis is also much, much better. Anyone know why? of course fire ants in the hair makes up for no joint pain.
#13
Posted 17 December 2015 - 11:08 AM
Positive news (sad too but mostly positive) filed for legal separation today. Also a move to protect finances.
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
#14
Posted 18 December 2015 - 02:38 AM
Achy today. Stupid right arm feels like it's falling off. Haven't done anything new so figure it's achy with gleevec again. Love/hate relationship with this drug. But trying to stick with it since I'm nearing retirement hoping the $ hit will be less by then.
Positive news (sad too but mostly positive) filed for legal separation today. Also a move to protect finances.
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
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