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Do you heal slower when you have CML


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#1 countrygirl

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Posted 01 June 2011 - 04:45 PM

Do you heal slower when you have CML? I was dx in April 2011. Have been taking Gleevec 400mg daily. I had a tooth pulled in March 2011 and the socket seems to be healing slowly. Just wanted to know if anyone has had healing issues.



#2 GerryL

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Posted 01 June 2011 - 06:58 PM

Hi countrygirl,

I was in the very early stages of CML when I had a wisdom tooth removed, it took an extra week and a half over the expected time to heal. At the time I wasn't even considering the idea that I might have leukemia, but have to figure that is why it took so long. Though I haven't had any surgery since, I would figure once your blood work is back to normal, there shouldn't be any issues. It might be worth talking to your dental surgeon about your diagnosis and see if they can do anything to assist with your healing.

Gerry



#3 Trey

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Posted 01 June 2011 - 08:32 PM

It is slightly possible at first, but once the drugs have normalized the blood there is no real difference over the longer term.  It is likely a perception issue.  Tooth "holes" close up very slowly for anyone.



#4 dee145

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Posted 01 June 2011 - 08:43 PM

I have noticed that when I cut myself or scratch myself it takes alot longer to heal.  Just simple things like that.

                                   Dee



#5 Tedsey

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Posted 02 June 2011 - 02:54 PM

Go figure, I scratched off a big scab a couple of days ago and it clotted right away.  And I have PLT around 20K.  Weird things these blood cells.  I guess everyone is just different.  However, I have to admit, that the sores in my mouth take over a month to heal (I get chronic, major aphthous ulcers (as deep as tooth holes)--and maybe I get a few day's respite between a new bout of sores).  So, maybe cell turnover in the mouth is effected by the TKI (i.e. slow turnover) for some.

Take care.  Hope you heal soon.  Mouth pain is the worst.

Teds



#6 knoppl

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Posted 04 June 2011 - 02:46 PM

I find that I catch things easier. I am on my second cold and they have been one after the other. I am so sick of coughing and sneezing and feeling aweful.



#7 threedprof

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Posted 05 June 2011 - 12:38 AM

I have been PCRU for about 4 1/2 years.  Slowly throughout my treatment I have noticed that my skin isn't as pliant as it once was and therefore cuts or abrasions are easier to occur.  Coincidently, my glucos level has slowly risen to the point to where i'm now diabetic a1c of 7% (this runs deep in my family so it could be the cause)  So i'm not sure if it's gleevec or diabetes that causes the slow healing process but it's not like I bleed without clotting in a timely manner.  All CBC and CMP labs are normal (well certain elements in my CMP are a little off due to diabetes but nothing to fling your arms in the air and run around in circles for). Conversely, I don't get sick very often *Knock on wood*  GOD! I can't WAIT for a cure but definitely glad we have options until then.



#8 GerryL

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Posted 05 June 2011 - 06:10 AM

Hi Joel,

Thinning skin can be a side effect of the Gleevec - http://www.gistsuppo...f-sunitinib.php

2.  Patients taking imatinib (Gleevec) for a long time see their skin becoming progressively thinner and more susceptible to bruising and tearing from even minor bumps.  Are there any ways to minimize these effects?

Thinning of skin (referred to as atrophy), may make it more susceptible to bruising or tearing. Imatinib is likely to cause this due to the blocking of molecules in skin that are important for its repair and regeneration, both of which occur on a daily basis. Therefore, efforts directed against minimizing skin damage would be of benefit, such as sun protection with a broad-protection sunscreen (greater than 30 SPF and containing zinc or titanium), maintaining skin well moisturized and avoiding hot showers or baths. The use of any supplements with imatinib not been evaluated in clinical trials, although some patients report decreased bruising after taking omega-3 fatty acids. However, omega-3 fatty acid supplementation has been shown to reduce inflammation and skin damage caused by ultraviolet radiation from the sun, and may be of benefit in this setting.



#9 jrsboo

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Posted 06 June 2011 - 10:52 AM

Dear Gerry,

Thanks for the info, I am on sprycel, and have been experiencing the thinning skin..... it is very odd, just brushing against something will cause a tear.  But they seem to heal quickly. 

I went mushroom hunting this weekend and got stuck going over a large log with pokey bits all over it.  I swung one leg over, and then couldn't get the other leg over, every time I touched one of the pokey bits, it hurt too badly.  A friend had to help be go backwards over the log, and I could feel my hands tear and then the inside of my thigh.  Sure enough, that night my thigh started hurting, looked at it and it was torn up.   It is now a day and a half later and it is almost all the way healed.  Very strange.

I have an appointment this morning with my dermatologist, a follow up, as I had a monster skin infection, and I plan on bringing this up with him.  But he is not an oncology dermatologist, so not sure if he will have any answers.

CAroline



#10 GerryL

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Posted 06 June 2011 - 11:53 PM

Hi Caroline,

Let us know if he comes up with anything new for thinning skin. Skin tears will usually occur on our arms and legs as they can be a bit less protected by clothing.

I take fish oil (for the omega 3), vitamin E and also Evening Primrose - though Evening Primrose was listed on one site as an inducer to Gleevec. But I figure if I don't take more than the suggested dosage and take it far enough away from the Gleevec, it can't do too much harm to the Gleevec (touch wood).

Gerry



#11 jrsboo

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Posted 07 June 2011 - 11:13 AM

Dear Gerry,

Sorry, skin dr. had no answers.  I brought up your information about Omega fatty acids, and he just said..........Hmmm, yup, eat more salmon.  He is not well versed on our drugs at all.  But he is close to my house and I was already a patient so I was able to get to see him immediately when my infection flared so badly.  The changing texture of my skin (on my face it is much rougher, my limbs: much softer and thinner, and my forearms have all these little lumps underneath the skin, very odd) he is right now attributing to an inflammation like dermatitis, so I have new soaps and methods of washing and drying and moisturizing to do. 

If these don't work, I have an onc visit coming up in a couple of weeks and will bring it up with her, and see if she has an onc dermatologist to recommend.

Sigh.  I mean seriously folks, for some reason, I am having a heck of a time with the side effects of Sprycel.  But it is also doing its job remarkable well, so I will continue to run around putting out the little brush fires it sets off, while Sprycel holds back the sweeping forest fire of CML.

Much affection to the board,

Caroline



#12 hannibellemo

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Posted 07 June 2011 - 05:25 PM

Caroline,

I know what you mean about Sprycel. For the first 4 months I was absolutely miserable and made everyone around me unhappy, too - I hate to suffer in silence! Nothing I could really put my fingers on but I felt horrible - just nasty non-specific malaise!

I've felt pretty good for the past year (knock wood, throw salt over my shoulder, whatever else you do to appease fate) but I've noticed that my platelets are being naughty and not functioning as well as they could. My levels are low normal but I had a bout of purpura on my toes of all places, they turned quite purple,  and I noticed the other day when I was planting flowers that a bug bit me and I unconsciously scratched it and I had little petechiae all around the bite from scratching.

Then, on Thursday I had a little red spot on my shin that looked like a bite but wasn't, then I had one on each of my big toes and a couple on each arm. I was afraid to go to bed that night for fear I would wake up looking like I had measles or chicken pox. They are now fading, I'm sure they were tiny clumps of capillary bleeds.

I suppose we could put a positive spin on things and say, at least, life isn't boring! And as you said, Sprycel works so well. I just never thought I would be a human guinea pig.

Warmest regards,

Pat


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>


#13 Guest_billronm_*

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Posted 07 June 2011 - 08:31 PM

Dear Pat,

Have you had any trouble with anemia since being on Sprycel? I have been becoming more and more anemic every month since I have been on S. I've been on it 6 months now.

I had an appt with oncs assistant today and she said he told her to put me on Tasigma. Last mo he said he might lower my dose of sprycel. I told her I really didn't want to take tasigma,

I could never keep up with that schedule. I knew more about it then she did. She's going to talk to onc tomorrow and see about decreasing the doseage?

Has anyone else had this problem with Sprycel? And did a dose reduction help? I take 100mg right now.and my bcr-able is still ZERO.

                    I'd appreciate some input about this.   Billie



#14 hannibellemo

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Posted 07 June 2011 - 10:02 PM

Billie,

My counts have been very stable on Sprycel. Although I used to pray for tanking counts when I first started Sprycel so I could take a break it never happened.  Mind you, stable is relative, my counts are "high but below normal" and sometimes they are almost all in the low normal - like my platelets stay low normal.

I would definitely talk to your onc about lowering your dosage a little bit at a time just to see if you can find a lower dose and still maintain PCRU.

I'm just not sure I believe in this "one size fits all" concept.

Good luck!

Pat


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>


#15 GerryL

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Posted 07 June 2011 - 11:57 PM

Hi Caroline,

My dermatologist told me I have Keratosis Pilaris http://www.keratosispilaris.org/  mainly on one forearm and also on my face - though my face doesn't have the red dots, it just feels bumpy. I am trialling a salicylic acid product on my arms and using a loofah everyday. The dermatologist prescribed Differin for my face, I also use an exfolient cream twice a week on my face. My face isn't too bad, but doubt it will totally clear up whilst on Gleevec.

Gerry



#16 jrsboo

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Posted 08 June 2011 - 12:29 AM

Gerry,

Wow, that is completely the opposite of what my derm told me to do!  He has me using a special body shampoo, but only twice a week, no soap or as little as possible, and only in stinky places, so not on arms, legs, torso or face.  and than a cream cortisoid with a gel of naftin mixed together applied once a day.  Moisturize as much as possible and maybe sleep in a room with a humidifier on................

I looked at the pictures from the website you gave me, and I am not sure it is the same thing.  The bumps on my arms are on the inside of my arm, where there are almost no hair follicles.  And I have lost most of my body hair from the TKI.  My face does get flushed, and the texture is thicker...............but it didn't look like those pictures.

I will try what the derm has prescribed for a week or so and see how it goes.

Thanks!!!!

Caroline



#17 Oldtimer

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Posted 08 June 2011 - 01:49 AM

I bruise easier but heal about the same. I had a tooth pulled and it did take a while to heal, but it was the first tooth that I had pulled besides my wisdom teeth and it was a little hard remembering the earlier healing of the wisdom teeth.



#18 GerryL

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Posted 08 June 2011 - 05:20 AM

Hi Caroline,

Hopefully your dermatologist is on the mark.

We probably do have different skin issues as we are on different TKIs - I went to two different dermatologists as was given the same diagnosis. The second one knew about Gleevec and was aware if the side effects to the skin caused by the Gleevec.

Gerry






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