Advanced Member
Posted 23 April 2016 - 08:04 PM
Petechiae: Pinpoint red or purple spot caused by bleeding into the skin. Causes include leukemia.
Periodically, I develop several small clusters of these spots - usually on the palm-side of the hands & fingers, especially the base of the thumb. A few days ago, I awoke to maybe 100+.
Question: Has anyone noticed a correlation to the appearance of these spots to any activity, or is it completely random? Just curious....
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 23 April 2016 - 08:41 PM
Oh my goodness, I was just researching this! Just when I seem to be getting good results from restarting TKI therapy, I change into my PJs tonight and notice that there seems to be an increase in petechiae. I wouldn't say that I have a lot, but a noticeable increase. I don't have any on my hands, but on my chest and mainly on my abdomen. A few on my arms and legs, but no more that usual. It was enough to make me get out the mirror and take a look at my back.
Advanced Member
Posted 23 April 2016 - 09:02 PM
Petechiae: Pinpoint red or purple spot caused by bleeding into the skin. Causes include leukemia.
Periodically, I develop several small clusters of these spots - usually on the palm-side of the hands & fingers, especially the base of the thumb. A few days ago, I awoke to maybe 100+.
Question: Has anyone noticed a correlation to the appearance of these spots to any activity, or is it completely random? Just curious....
Oh my goodness, I was just researching this! Just when I seem to be getting good results from restarting TKI therapy, I change into my PJs tonight and notice that there seems to be an increase in petechiae. I wouldn't say that I have a lot, but a noticeable increase. I don't have any on my hands, but on my chest and mainly on my abdomen. A few on my arms and legs, but no more that usual. It was enough to make me get out the mirror and take a look at my back.
Common causes of bleeding into the skin are:
Certain infections and diseases can cause bleeding under the skin, such as:
http://www.healthlin...he-skin#Causes2
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 23 April 2016 - 09:42 PM
Common causes of bleeding into the skin are:
- injury
- allergic reaction
- infections of the blood
- autoimmune disorders
- birth
- bruises
- medication side effects
- chemotherapy side effects
- radiation side effects
- normal process of aging
Certain infections and diseases can cause bleeding under the skin, such as:
- meningitis (inflammation of the membranes covering the brain and spinal cord)
- leukemia (cancer of the blood cells)
- strep throat
- sepsis (whole body inflammation due to bacterial infection)
http://www.healthlin...he-skin#Causes2
One would think it would improve with PCRU, rather than having more. But this is crazy stuff with CML and TKIs.
Advanced Member
Posted 23 April 2016 - 09:43 PM
With Gleevec, I bleed underneath the skin, when my old cat with hypodermic needle nails, inadvertently sticks me. Hoping my skin returns to normal when I go off of Gleevec.
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 23 April 2016 - 10:03 PM
With Gleevec, I bleed underneath the skin, when my old cat with hypodermic needle nails, inadvertently sticks me. Hoping my skin returns to normal when I go off of Gleevec.
Maybe it will, buzzm1. The brief time I was off of nilotinib, the dark spots I had were starting to fade. Now that I've started back, skin issues have returned, even with dose reduction.
Advanced Member
Posted 24 April 2016 - 01:06 AM
Advanced Member
Posted 24 April 2016 - 03:44 PM
I had immune thrombocytopenia for many years prior to cml dx. I know one of the indicators is petechia. Right after I started sprycel my platelets tanked to about 8 K, which resulted in me taking a 49 day break from it while I got a splenectomy. Ever since then my platelets have been in normal range (~ 160 K) and the petechiae and bruises disappeared. I remember the nurse practitioner at my local hemo office checked the roof of my mouth and saw a lot of petechiae. She said this is where it really shows up if it is going to happen.
You may want to check your platelets, maybe they are low?
dx cml 7/2012; 100 mg sprycel; splenectomy 9/2012; reached prcu 10/2013; dx smoldering myeloma 1/2015; 80 mg sprycel 12/2015; 50 mg sprycel 7/13/16; discontinued sprycel 11/15/16
Advanced Member
Posted 25 April 2016 - 01:44 AM
Petechiae: Pinpoint red or purple spot caused by bleeding into the skin. Causes include leukemia.
Periodically, I develop several small clusters of these spots - usually on the palm-side of the hands & fingers, especially the base of the thumb. A few days ago, I awoke to maybe 100+.
Question: Has anyone noticed a correlation to the appearance of these spots to any activity, or is it completely random? Just curious....
Sounds like what my hands look like. The spots are different sizes - a few that are readily visible, and many more that are nearly microscopic. Sometimes the larger ones are actually a collection of individual small ones that blend together from a distance. They form on my palms, the webs between fingers and on the sides of the fingers. Occasionally I'll get a splinter hemorrhage under a fingernail too.
And yes, they are related to activity. For example, one time I was out hiking on an old trail with a lot of little seedlings starting to grow in the trail. Anyway, I was pulling the little seedlings up and the next day I noticed more spots than usual.
I started Gleevec in October 2012, but didn't notice them until a couple of years ago. About a year ago I reduced from 400 to 200 per day, but they haven't gone away. Although the eye bleeds I used to occasionally get have gone away since reducing to 200. My theory is that the Gleevec causes these hemorrhages and it's not the leukemia.
My platelet count over the last couple of years has been 171 to 213.
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 25 April 2016 - 02:27 PM
Pretty common with Sprycel, I don't seem to get them as much any more, though. As many have said, I noticed them most on my hands and forearms. Mostly on the back of my hands, though.
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>
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