Advanced Member
Posted 20 April 2016 - 01:16 PM
Vicki,
Have you ever tried fish oil - don't if you're on a blood thinner, but I've found it helpful for being in the sun. I took it while on Gleevec and continue to take it.
been on potassium, magnesium and omega 3's for more years than I can remember (oops, there goes the chemo brain again! 
)
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
Advanced Member
Posted 20 April 2016 - 07:34 PM
Magnesium is important (400mg per day as supplement), but so is Potassium. Make sure you're getting enough Potassium. You would normally get enough from diet (unlike Magnesium which is more depleted) especially if you eat fruits and veggies.
Advanced Member
Posted 20 April 2016 - 08:07 PM
Meant to say I returned to taking the magnesium. I'm wondering if the BP med I now need to take (that I'm off Gleevec) is doing something with the potassium levels. Might have to return to eating half a banana - did this while on the Gleevec.
Some blood pressure medications, i.e. losartan and metoprolol increase potassium.
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 20 April 2016 - 08:27 PM
Advanced Member
Posted 20 April 2016 - 08:32 PM
Advanced Member
Posted 21 April 2016 - 09:25 AM
I'll have a look at the info for it.
Gleevec was a great drug for the CML for me, plus it seemed to help with the cholesterol and BP, I didn't need to take anything while I was on it.
My blood pressure was doing well while I was on Gleevec 400mg, but now that I have greatly reduced my Gleevec dosage I am having to adjust my Metoprolol dosage upwards to counteract a BP increase. My primary physician said to make sure my pulse rate doesn't go below 50 which is problematic as I have always had a low pulse rate.
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 21 April 2016 - 04:56 PM
Advanced Member
Posted 28 April 2016 - 04:50 PM
Ok, now I'm on 5000 mg D3 and 1200 mg K2 every other day for the summer. I plan to switch to daily as soon as the sun is barely clearing the treetops again. This far north not getting enough vitamin D, especially in us sorta seniors, is a common problem. This year tho is different because we actually have all the snow gone already and even better the ground is thawed so folks have been outside getting the gardens prepped, etc. for a couple weeks! (tho we did have a couple snowflakes today). It's been several years since we've been able to dig in the ground this early.
Only change I've noticed since cessation so far is a bit of a constant, mild, nagging headache and the tinnitis I have since before the CML has decided to get louder!!! No idea if there's a correlation but I see my new internist tomorrow to get his input. I've also had a sudden slight weight gain (without any evidence of fluid retention) or increase in appetite or change in eating patterns. Hope THAT doesn't continue! I've been working hard to lose weight!
Dxd 2007
started on Gleevec switched to Sprycel 100mg in 2009
PCRU since 2011
20mg Sprycel every other day since Dec. 2014
Began TFR 4-18-16
0 members, 1 guests, 0 anonymous users
