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cml and sprycel


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#1 idahobeavers

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Posted 08 May 2012 - 09:32 PM

i was curious if anyone else gets yeast infections?i have a recurring one and i am blaming it on the tkis. anyone have any imput. i also have bone,muscle pain plus my face feels and looks like i am sun burnt. i also have a raised rash on my face. any of this sound familiar ?



#2 kellbell

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Posted 09 May 2012 - 06:28 AM

Yes it does sound familiar. I have all of those things also. I went to my ob/gyn thinking I had a yeast infection and I did not, but it felt like I did. My face feels like its burning and is red. That comes and goes for me. I also have a short burst of pain in different bones.  The pain is very bad but its only a few seconds and then stops. The muscle pain is in my neck and shoulders thats very annoying. I have bumps on my face too that I am waiting for them to please go away. I I just went out and bought a tinted moisturizer with sunblock in it to try to even out my skin color and hide some of the bumps. Its reallyy not that bad, just something that Im not used to I guess. It feels better to know other people on sprycel have this also. Hopefully it goes away.



#3 pammartin

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Posted 09 May 2012 - 09:52 AM

Sarah and kellbell,

The dreaded red rash is something I have been working through since starting sprycel last fall.  I use metrogel, it takes away the heat almost instantly but it does not take away the red coloring.  My rash used to be constant but over the past six months it has begun to cycle. It does not have a regular cycle I can pinpoint, I have been keeping a record of the occurance's, but I still wonder if it does not have something to do with the female cycle.  We all tend to blame things on the TKI's and CML, but I wonder if sometimes it might just be something going on with our bodies.  There are several other possibilities other than a yeast infection for your current symptoms, I was going to find a site that explained some of them but since you visited your gyne, am betting you already talked about them.  The metrogel is a prescription and the co-pay for me was about $25, so higher than usual, but it is a large tube and I still have about half of it left.  Best of luck to both of you!

Pam



#4 jrsboo

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Posted 09 May 2012 - 06:47 PM

Yup, got it all.  I have been thinking that the "yeast" infection maybe is similar to the lesions on my tongue.  That moist tissues often replicate themselves quickly, and I know that with the tongue lesions, the TKI's interrupt the replication, thus there are spots on my tongue that feel raw and are much redder than usual.  Might be the same in the other area. 

I am getting skin yeast infections like crazy and have to be super careful to wear gold bond powder all the time, also have a bunch of prescription creams when it goes beyond powder. 

Hang in there. 

Caroline



#5 GerryL

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Posted 09 May 2012 - 07:30 PM

I haven't had yeast infections, but have have had folliculitis  - I started taking a zinc supplement and it has cleared up.  In my case, I think the TKI removes zinc from the body. I haven't had an issue since starting zinc.



#6 kellbell

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Posted 09 May 2012 - 08:15 PM

pammartin, I went a couple months ago and all I remmember him saying was that it doesn't seem like a yeast infection, they did the test anyway and since I didn't get a phone call I think it's fine. Anyhow, it cleared up on it's own whatever was going on, but could you list the sites you were mentioning ? Just curious to know.



#7 kellbell

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Posted 09 May 2012 - 08:19 PM

any kind of zinc supplement? Im not used to taking supplements and whan the nurse was doing the teaching for sprycel she said vitamins were ok but not to take supplements. Is it safe, or can you have to much? It would be nice to stop the rash.



#8 pammartin

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Posted 09 May 2012 - 08:54 PM

Caroline,

So odd you should mention skin yeast infections I am dealing with one right now, didn't know it till I visited doctor last week..  It is pretty mild, and doc told me to use Gold Bond, but if it started to get worse then I had to go in and get a prescription.  I swear I jinxed myself, it has been 17 days since I have had the red ear and face situation, this afternoon my ear started to get hot and a short time later it was beet red.  I am curious to see how long this episode lasts.  I would like to find some sort of pattern or time frame, but I fear it will be random events.  Kellbell, I am off to bed in a few but promise to look up sites tomorrow.  I use the Mayo Clinic for most research, if you want to look before I get them posted.



#9 idahobeavers

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Posted 09 May 2012 - 11:03 PM

ok just to clear the air. i dont think its hormones as i had a hysterectomy over 10 years ago. i am 56 years old. the yeast infections have been a new thing since sprycel so has the red face,neck and bumps on my face. i have not had a yeast infection forever. but in the last 4 mos this is my second one.



#10 pammartin

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Posted 10 May 2012 - 06:53 PM

Sarah,

If the over the counter treatments work and/or your doctor stated it was yeast, and especially if it cycles with the red rash and other side effects, in some way it is probably related to the TKI.  If the OTC meds work, I have read people with chronic yeast infections eat yogurt on a regular basis to keep the positive yeast inside the body and the negative yeast at bay.  I am not sure if this would help in your case or not.  Also one has to be a yogurt fan, either you like it or you don't.  I am not sure there is a wealth of information concerning this idea, but I used to work with a lady who used yogurt on her child's bum rash, topically for yeast infections, and probably a few other reasons I can't remember, and she swore by the effectiveness of the use. A tub of yogurt is about 1/8 the cost of the lowest yeast infection med if memory serves, like you it has been a long time since I have had one, so if you were willing to take a chance, it might be an option.  I do know yeast infections are horrible and by the time I would realize I had one it had a good start on making me miserable.  Are you just attempting to link the yeast to the TKI, and if it is, what considerations are you looking at?  Are you responding to the meds for a yeast, or does it seem like it is more difficult to treat?  For the rash, it really does sound like what I experience and I will sell the Metrogel treatment to anyone who listens.  It takes the heat away almost immediately, the face is such a tender area, having it on fire is not a pleasant feeling.  I will repeat myself and say the red does not go away, but at least the heat does.  For a while I carried my tube everywhere, just in case I needed it.  These days the red rash comes and goes at will. Think I wrote this also, but I went 17 days without it before it began returning yesterday.  Right now my left ear is starting to burn so I am off to grab the gel, it will feel better almost immediately.  When the red rash started I went for several weeks without it leaving, then it gradually started to go away, it was several days until I realized I had not reached for the gel in a while.  Then it returned and I was disgusted, but the gel got me through that outbreak and several since. 

I am listening....



#11 idahobeavers

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Posted 10 May 2012 - 10:32 PM

hey pam yes the otc meds do work for me. and of course it takes a few days. as for linking the tki with the yeast. i dont know! but it just seems when my face decides to flare and it feels like i have a temp then the yeast infection rears its nasty head. and if i remember to eat at least one yogurt per day it does help and it also helps with my ibs. i swear i have more ailments then a human has a right to have. but right now the worst is the shortness of breath! bwth.i am way over weight,smoke,have asthma,crones desease,IBS,cml+ph and mds. but wth other than all that i am healthy as a horse lol



#12 idahobeavers

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Posted 10 May 2012 - 10:33 PM

i will try the gel thank you forgot to mention it



#13 Guest_billronm_*

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Posted 10 May 2012 - 10:51 PM

Hi Pammie,

   I told you I had the melonoma, and skin cancers, so every 6 months I have to get a full body exam from my dermotologist, (just my luck he's young and good looking). But are you wearing enough sunscreen? He checks the craziest areas all around my ears, the bottom of my feet,my entire hairline front and back, my scalp, I have had 2 suspicious marks removed from both eyebrows. And he gave me aldera cream for a rash on my face and my thighs. I've had about 8 skin cancers removed from my thighs, a big one from my back, and the big melonoma on my chest, plus 2 lymph nodes under my left arm from the melonoma. But some places on my body like my ears,face,behind the knees he had me use aldera on them,because he's trying not to slice and dice me as little as possible. Some of this started before my cml dx, but I usually had a rash on the area where the skin cancer was. some were very small but the biopsys always came back positive. So use plenty of sunscreen,and put it on places you didn't know you had places! Love Billie



#14 GerryL

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Posted 10 May 2012 - 11:03 PM

Hi kellbell,

Interesting what the nurse said, as supplements can cover vitamins, minerals and other things such as herbs/plants etc. Zinc is a mineral - I just know I have become low in it as when I don't take it my hair follicles can become infected (similar to getting a pimple). Yeast infections can also happen if you are low in zinc. Liquid zinc is the best to use as you can tell when you no longer require by the fact that you will start to taste it (it will have a metallic taste when not required).

I would see a dermatologist for your rash.



#15 pammartin

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Posted 11 May 2012 - 09:25 AM

Hey Billie,

I have had two possible episode with skin cancer, one on my face and they other on my hand.  They were different times but suspicious looking in nature and worrisome enough for the doctor to remove them.  I have my moles and parts checked a few times a year also.  I admit to being an idiot with sun screen.  My gram was an indian, dad half, so guess I am 1/4 I usually don't even turn red, just get browner and browner.  I doubt I will be out as much this year as I have in the past, one has to have energy to get outside, something I am severely lacking these days.  The only thing I noticed this year is where I have small scars from dog scratches, catching my arm on a nail while washing walls, or other reason, this year with just a little bit of sun the scars are not disappearing, they are/were very insignificant.  I guess with the Sprycel the body is not going to heal them like it did before, and they gradually fade till there is no longer a mark.  This rash is right there with the hot ear syndrome, when I was on the 140 mg Sprycel I had it all the time, face and ear were always hot and red.  Now it comes and goes at random, I can have a week without having one episode but like last weekend when my MIL birthday was happening and we were going out to dinner I went out with the red ear and redder face look.     I guess if I stay in nature might leave me alone, but no betting on that long shot either.



#16 pammartin

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Posted 11 May 2012 - 09:36 AM

GerryL,

I was told the same thing, I took A&D, Fish Oil, Melatonin, multi vitamin, and a few others, I was taken off all of these and prescription Cardizem for prinze metals angina, Effexor for depression, and Xanax but I finally got that one back after a fight.  It is interesting how different oncologist approach the supplement, vitamin, and prescription drugs and how some of us can take them, while others can not.



#17 GerryL

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Posted 11 May 2012 - 10:39 PM

Hi Pam,

I tried to tell my Hematologist about the vitamins, minerals and fish oil etc I was taking. He didn't seem worried about any of it. I still try to take them as far away from the Gleevec as possible. They don't appear to have impacted my results as I got to PCRU fairly quickly.

As Sprycel is a newer drug, they'd still be trying to work out the drug interactions.



#18 Samcerly

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Posted 14 May 2012 - 03:19 PM

I started having episodes of facial flushing about 6 months into sprycel.  Although I had hot swollen hands and feet for several weeks after starting sprycel.  Now my face flushes and gets hot one to three times a day.  I am 40, female.  Not sure exactly what it is, but curious others are experiencing it too.



#19 pamsouth

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Posted 14 May 2012 - 04:18 PM

Sam, I have been on Gleevec since 2005.  I had a red flushing face and neck and chest until about a year ago.  My massage therapist told me to stay out of the hot tub, and stop taking steamy showers as it constrict the blood vessels.  I take warm showers and slowly cool down.  alternating back and forth from warm to cool until my body has adjusted to the cool.  That cleared up about 85 % of the problem.

PamSouth


PamSouth


#20 kellbell

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Posted 14 May 2012 - 06:21 PM

I have experienced having hot, red, swollen hands and feet also.  Mostly when I first started taking sprycel. I just finished the third month. It doesnt happen as often as it used to. I also have flushing in my face too.  I haven[t realy paid attention to how often, but I can feel it and Ive been trying to ignore it, so I think thats why I havent paid attention to how often it happens.  I also was thinking about earlier in this discussion, how some of these things seem to come and go and am also wondering if it has to do with the female cycle.  Mine is not regular anymore and I always wonder if Im having pms.  Im still getting used to all these new things.  I used to have pms symptoms and knew when I was, now I've been trying to pay attention to all of these side effects/symptoms and don't really know whats going on. Sometimes Im so exausted I cannot do anything. Sometimes Im very emotional or easily irritated and crabby.  At least before I knew why, now I'll feel like this and I do not get a period. Maybe Im irregular now and so is the pms? I just give up trying to figure it out sometimes, and hope I'll get used to it.






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