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Wrinkly skin and not so good complexion


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#41 Susan61

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Posted 23 May 2012 - 09:37 PM

Hi Billie;  Thanks for asking about how I was feeling.  I have been fine this past week, and still did not find out what was making me so sick.   Stess is something that never goes away.  I do have a lot going on, plus taking care of my elderly mothers needs.  She called me today, and because I did not answer the phone right away she hung up and called back.  She had me in the hospital, and thinking nobody told her. 

     I always say how grateful I am that we can get on here, and vent or talk to everyone. No matter what problems you have you feel better after somebody gives you advice or is familiar with what we are going through.

     I was still laughing this morning thinking about you with your Mayo, Olive Oil, Plastic wrap and your get up that you went to bed in.

     I have been pretty good lately, and not pulled any of my Lucy Stunts.  You Take Care and Stay out of Trouble.

Susan



#42 pammartin

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Posted 23 May 2012 - 09:50 PM

Hi Susan,

Great to hear you are feeling well.  perhaps it was just a bug of some kind but great it is gone!  Your mom sounds like mine, but she would be angry if we didn't answer.  she would look up the street and see both cars (we might be out to dinner with friends, I always told her and she had mobile numbers.  She would call every 15 minutes and not leave message (caller ID told the story).  If we were not home by the time she thought we should be, she had us in a wreck and/or sick.  Then when we did come home run down to see what was the matter she would say we worried her half out of her mind.  At the time I complained a bit quietly, but now I just smile, it was mom's way.  Oh, telling Billie to stay out of trouble is like telling the sun not to shine in the Caribbean, I fear it isn't going to be a success.



#43 Guest_billronm_*

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Posted 24 May 2012 - 12:05 AM

Pam,

  Yeah I tried the crisco oil too. I got burned so bad all I could wear was a sheet for 3 days.I'm fair skinned,and I don't tan very well, I just burn and burn. And like a moron I kept going back out in the sun, and kept getting redder and redder. All these things I have done happened after I was married and had 2 kids. So I was a mature adult! Yeah Right!



#44 Guest_billronm_*

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Posted 24 May 2012 - 12:36 AM

Hi eithne,

  It's really great to hear from you.I'm so glad you're doing so well on Tasigna. Is it hard trying to follow the schedule, or do you get into a routine after a few days? I know I would get so fouled up. Now that Ron is retired we really have no schedule at all. Half the time I don't know what day or date it is. One time on a Monday in November he looked at me and said are you cooking Thanksgiving Dinner this year? I looked at him and said yeah why, then he told me it was in 3 days and I hadn't mentioned it to him or done any shopping yet. Boy I had some hussleing to do that year. How are things in Ireland, are you having nice weather yet. I just love watching videos of Ireland it is so beautiful, and I love potatoes with creamed corn so you can tell I'm Irish.    Take Care  Billie



#45 eithne01

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Posted 24 May 2012 - 07:10 AM

Hi Billie and everyone, Billie the Tasigna routine is a bit of a pain, but it's amazing how quick one adjusts when it's your good health in question.  my parents say my lukemia treatment is the only thing I have ever adhered to in my life with obstinate consistency.  LOL (i have to agree)  The weather is absoloutley gorgeous here, I was out doing my turf (solid fuel to you guys) I only get about an hour at it as the bone pain and cramps take over. My sister is a gem and she actually does most of it for me.  Life is really good and and even though I've got this thing, I think I'm actually the best I've ever been.  So all in all Tasigna is the best for me at the moment.  I still have all the bone pain and cramps same as glivec, but they have calmed down so much it is unbelievable.Billie I might have some creamed potato, cabbage and gammon for dinner, if the stomach is up to it. LOl



#46 Guest_billronm_*

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Posted 24 May 2012 - 10:13 PM

Oh eithne, can I come over for dinner?  Well I did it again, remember how I told you I don't know the day or date? I went for bw today and it was a bcr-abl test so I guess the shelf life of the blood for that test is only 6 hours,so we cannot have that test on a Friday, or the day before a holiday. I was so proud of myself that I actually remembered it all on my own,no note or nothing, I see my onc on Monday so I was prepared for once.

Well I got to the lab, nobody ahead of me so they took me right away, boy I was on a roll, I thought right in and right out. WRONG!  My bw script was dated for next Thursday, and my appt. with my onc is June 1, not this coming Monday! The woman at the lab was nice though, she called the Cancer Center and got approval to do the test today,so I don't have to go back next week. And that saved me from the embarrassment of going to my Doctors this Monday instead of next Monday. I can't tell you how many times I have gone to one of my doctors appt. on the wrong day,or time. One time I went to the doctors on the right day and time, but it was the wrong doctor!                   Needless to say Ron doesn't let me do too much driving.  I even carry my appt. cards with me so I can show the doctors nurses they are wrong.  They're not, I am. Love Billie



#47 pammartin

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Posted 24 May 2012 - 10:55 PM

Billie,

What the heck?  I spent almost 15 minutes wandering around the Wal Mart parking lot this afternoon while 134 buns were slowly cooking in their packages.  I had to pick up the buns for the band banquet then get home before Nick got off the bus.  I went up and down three lanes two separate times and could not find the car.  I kept hitting the lock button (the horn will sound) but every time I heard the a horn it was not my car.  After almost admitting defeat I turned to go back to the store and realized the car I was looking for was NOT in the parking lot.  I have a  rental, mine is in the shop getting repaired from the hit and (almost) run a few weeks ago.  I was standing right beside the rental and walked by it at least two other times.  I got in, drove home, took all the buns out of the packages, put them on paper towels to dry off and hoped they would not be mushy.  I repackaged them in gallon bags and called it a done deal.  Either I am seriously loosing what little mind I ever had, or my red cells are low enough I am not getting enough oxygen to my brain.  Either way, I don't think I am safe to be around!  Stop doing weird things, 'cause it seems when you do, then I do too, but don't know it till I read your post on here!



#48 GerryL

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Posted 24 May 2012 - 11:00 PM

Hi Pam,

Great story - at least the car you were looking for wasn't your ususal so  you've got a great excuse - thanks for making me smile this afternoon.



#49 Guest_billronm_*

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Posted 25 May 2012 - 12:19 AM

Pammie,

  Are you sure we're not related?                  Luv Me



#50 Guest_billronm_*

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Posted 25 May 2012 - 12:36 AM

Hi Gerry,

  How are you feeling? Good I hope! Do you have nice weather year round over there? We're slowly but surely trying to get our summer, but it sure has been crazy. Pammie lives in the same state I do Pa. so she's going from flip flops to winter boots every week just like we are. Sometimes you have to take her with a grain of salt, I really think she doesn't have both oars in the water, but we humor her. Luv Billie



#51 Guest_billronm_*

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Posted 25 May 2012 - 12:49 AM

Pam,

Where the h--- is Judy? Is she okay? My Aunt screwed up my computer so I haven't received any e-mails since last Saturday, and I don't know if anyone can receive e-mails I send. I still don't know how to send a private message,I'm working on trying to figure the problem out. Nobody touches my computers again, every time they do they mess something up. If you talk to Judy, tell her I said Hi! And we're all thinking about her.

  Lot's o Luv Billie



#52 pammartin

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Posted 25 May 2012 - 08:15 AM

Hi Billie,

Judy is doing ok, she fought some sort of bug last week so very tired.  We played phone tag yesterday but never did get to touch base.  If she catches these messages am sure she will have some form of response, especially when it comes to my missing car story.



#53 pammartin

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Posted 25 May 2012 - 08:17 AM

Billie,

So both oars are supposed to be in the water at the same time?????  So that's what I have been doing wrong.  Now as soon as I can afford a boat, maybe I won't loose my car anymore.



#54 eithne01

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Posted 25 May 2012 - 09:18 AM

Billie, between the meds and the good weather your'e on a roll.  LOL. I'm surprised you didn't just call a tax iwhen you lost the hired car!  I get the old lapses as well.  I've been moaning to my neighbour because all my plants are dying and I couldn't understand it, they were doing so well for ages, she finally told me they were spring flowers and it was time to put them out the back and get some summer stuff.  Wewll I did buy some today and when it cools down this evening I will plant them. The weather is so lovelyand is supposed to last all weekend. You take care now and maybe stay indoors for a few days?????? LOl



#55 NotJack?

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Posted 25 May 2012 - 09:34 AM

Hey Marie,

I have been on Tasigna since 8/31/11.

I have also been concerned with the onset of crepe paper skin.  It is the most disconcerting of the side effects that I have experienced.  My skin has gotten considerably thinner and more transparent, and my legs have the crepe look.  The disconcerting thing is that my cancer team blows it off.  I did get some recommendations for skin cream from my CML onc.  It is endorsed by Mayo, and is not oil based, so that it is not greasy.  My CML doc is at Mayo, but she said that she uses it because it is effective and not greasy,  and not because of  Mayo's fiduciary interest in it.  It is called Vanicream.  My request for a referral to a dermatologist was met with an attitude of quit complaining, and be glad that the TKI is keeping your Leukemia at bay.  I am about to take my own advice, and look for a more enlightened general care onc office.  I will see how my next visit goes in a couple of weeks.  This is not a case of vanity, this is a case of an anomaly involving the largest organ in your body reacting to strong medication.  I believe that it should be monitored, a baseline established, and theories into this lack of elasticity and skin thickness by trained professionals,  instead of randomly throwing unproven,  herbal placebos at the problem and feeling better about it.  Don't get me wrong, I am not against holistic medicine,  I embrace proven supplements.  I am just putting science ahead of faith,  and bear no malice or condescension who choose their own path. Good luck, Jack


Jack


#56 mariebow

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Posted 25 May 2012 - 01:26 PM

Jack this issue need to considered by the oncs.  We do know that tki drugs does have an effect on skin and hair and this wrinkly effect is not kool, especially when you are at a beach or with the shorts.  And like someone else said on here, do not have weight loss because the skin would look awful.  But like you stated we are trying to live longer and sometimes have to give up something in return.  Well the lotions, fish oil,mayonnaise and other moisturizers look out.



#57 NotJack?

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Posted 25 May 2012 - 01:58 PM

This particular effect seems to differ from the general complaints of rashes or splotches or dryness experienced by users of TKIs in general (which I have experienced too), and appears to be localized to Tasigna patients alone.  This I glean from the previous and current commentary.  The balms mentioned are fine for dry skin, but are not effective as far as I know on the apparent breakdown of collagen in Tasigna patients.  This problem (or at least my problem) is excessive skin, or loss of elasticity of skin in a rapid fashion.  If I don't get a referral to a decent dermatologist, I am changing my home team.


Jack


#58 mariebow

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Posted 25 May 2012 - 02:11 PM

Let me know when you do to one, I will be interested in what they say about help for the skin.



#59 NotJack?

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Posted 25 May 2012 - 02:30 PM

I will, it probably has something to do with the increase of Epidermal Growth Factor, like Gleevec, but Tasigna must also stimulate (or retard) something in the skin that Gleevec doesn't, allowing this goofy condition.  I am currently searching for a top dermatologist in my area to take a look, as ignoring it, or denying it doesn't seem to help.  Trey probably has some good theories on this.  Trey?  Later, Jack


Jack


#60 eithne01

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Posted 25 May 2012 - 05:41 PM

This is really starting to worry me,I think i would prefer the pain.  Is this what happens to everyone on tasigna? I'm in month two and everything seems fine, but two months is such a short ime.  I don't think my confidence can take any more bashing.






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