I noticed about a week ago, that the skin on my legs look shrively and wrinkly, I know at 58 that I am not a spring chicken, but I have just noticed this. I have been taking tasigna for over two months now, and I have always gotten compliments on how beautiful my skin is, with only washing it no long cleansing or other facial rituals, but I have also noticed my complexion is not what it used to be. Does TKI's have anything to do with this.
Unfortunately, us tasigna patients have to fight aging in a much more concerted way than most other people! I've gotten quite blotchy and sun-splotched myself. I don't think it's a good idea to put more chemicals into your body than we already are, but I've tried to find a natural moisturizer and other facial products and apply them diligently. Seems to help a little.
My dermotologist recommends Aveeno products. I just use the foam facial cleanser,a bottle will last almost a year, and I use Aveeno moisturizer. Now that I stay out of the sun as much as I can, or wear sunscreen, I don't have to much trouble with dry skin. I usually use lubriderm moisterizer on my body. It's pretty good. I'm still shriveling up like an old hag,but I gotta work with what I got!
I've just been reading these and you guys are cracking me up. it's just great to be able to have a laugh. I am now starting my second month on Tasigna and it has to be said, it's nowhere near as bad as I feared. (thanks again to everyone who replied to my question at the time). I had huge bags under my eyes on the Glivec and since been on Taigna they have completely disappeared, am thrilled. Did notice a few dry spots but am slathering on moisturisers and anything else that gets recommended LOl. I am going to see if I can get those fish oil tablets here in Ireland.I use clarins moisturisers and lotions and they seem to keep me looking all o fmy 45 years so far, thanks for all the laughs. Billie, your'e good for the soul.x
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
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
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
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!
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
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
Thank you so much for asking about me, it really means a lot to me. I haven't been perusing the board that much lately, I don't know why, I'm just sort of, well, I don't know what I am. I'm feeling kind of ,well, just icky I guess. I did read, though, that you are going to appointments that you don't have and that Pam burnt her buns!!! Billie, I hope all your bw comes out fine, no surprises. Pam, I hope you can get some cream for your sore buns (only skimmed your post, I hope I got your story right). I did post a question on the half dose of TKI discussion topic, I hope someone can answer it for me.
I hope everyone knows that even though I am not on the board that much right now I still think of everyone all the time and I'm always wishing everyone well.
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
Pam's more like a goat then a crocodile,she grew horns when she first went on Sprycel! Then she got bit by a tick, she got off to a great start. I can't call her an old goat because I'm older then her. Darn! Billie
ps. wait until we get into the hemmeroid discussions!
With Gleevec, my complexion wasn't very healthy looking at first. After I adjusted to it over the first month or so, the skin issues went away. I got my color back and the rashes I was experiencing disappeared. I was getting a slightly raised, kinda scaly, itchy rash on my ribcage, armpits, elbows, and cheeks. Lotion seemed to help a little, and taking cooler than usual showers helped quite a bit. Try that. See it it works.
I am thinking of breaking the Fish capsule apart and dumping the stuff on my skin, if it doesn't work from the inside out, maybe it will work from the outside in. What's the worst that can happen? I usually burp fish smell after taking, so I smell like I came from the fishing dock.
About 10 years ago, I read that Sophia Loren only ever used olive oil on her face and skin. I think she is still one of the most beautiful women in the world and she's in her 70's. Those of you that know me,you also know that I'm not going to pass up a chance to look like Sophia Loren. I also read that mayonaise is good for your hair. It was winter and I was so dried up I couldn't stand it, so one night I took a hot bath & shaved my legs (which is optional in the winter around here) after my bath I smeared about a half a jar of mayonaise on my head, and wrapped my head it saran wrap, then I pinned a shower cap over that, then I smeared olive oil all over my body, and even more on my face, and feet (olive oil on the bottom of feet is not a good idea) I put on my long sleeve cotton pajamas, and socks, then I smeared vasoline on my hands and put on cotton gloves. I figured I would wake up looking like Sophia, and having skin like a newborn baby. It was a bit uncomfortable when my jammies and socks started sticking to my skin,but my grandmother always told me you have to suffer to be beautiful so I figured I could suffer a bit. I put a towel on my pillowcase,climbed into bed, jammies were really sticking to me by then, within 30 seconds I found out that saran wrap doesn't stick to mayonaise,and the bobby pins I used to keep the shower cap on got all greasy so I couldn't get it to stay on..Then my jammies,socks and gloves literally attached themselves to my body, it was like shrink wrap.and the olive oil on my face was smearing all over the towel on my pillow. I don't think I left one pore open. At first all I could think of was, boy I'm glad I don't have satin sheets. I would have been slithering all over the place,and probably falling out of bed all night. I was so tired but I figured this wasn't going to work, so I got up and went into the shower, the mayonaise on my head was such an added touch,I almost fell and broke my neck,so I tried taking a bath I couldn't get all that oil off me,and I couldn't stand up because the tub was so slippery,and I had oiled my feet. I called and called for Ron, he's a deep sleeper and I had the br door closed. Finally after I don't know how long he woke up, and he is one man that doesn't like his sleep disturbed! So I explained my situation to him,he has no sense of humor at 1:00 am, all I could think of was to shower with dawn because all my body washes and shampoos have moisterizers in them. So he got me the dawn from the kitchen and I think I had to wash 3 times before I got out of the tub. Even my hair. So Instead of waking up looking like Sophia, I looked like Eleanor Roosevelt with a bad perm. A couple days later Ron put a bar in the shower,which I had been asking him to do for about 3 years!
Love Billie I can't believe all the crazy things I've done,until a post on this site reminds me. PS Don't wrap yourself in Saran Wrap to look 5 pounds slimmer, it doesn't work! And don't rinse your hair in beer, you smell like a drunk, And don't rinse your hair in vinegar, because people will call you Miss Massingill.
I have been having the most frustrating day and here you are making me laugh. I have nothing close to your story, but a long time ago I also read mayo was good for the hair, so I was going to wake up with hair like Farrah Fawcet. I followed pretty close to what you did, and wrapped my head in plastic wrap then used a towel and wrapped it securing with safety pins. When I woke up in the morning, the towel and plastic wrap were no where to be found, I was stuck to my pillow/pillow case and when I went to get up my head and the pillow were one entity. About this time my mother discovered our standard poodle with the chewed towel and small bits of the plastic. I was trying to get to the bathroom, only one in the house, downstairs, and it was through the kitchen, I was busted no two ways about it. I got the towel and my head separated, mayo must be close to glue when dried, lots of my so called beauty treated hair stayed on the pillow case. As my mother sorted through the details of the entire episode, I was in deep crap for several reasons,
Mayo is for sandwiches and cooking, not hair, and that was her last jar, it three days before grocery shopping day
My entire bed need stripped and washed, the mayo did not stay just on my head or the pillow case
Her favorite set of bath towels was minus one because it was pretty chewed up
The dog crapped towel and plastic wrap pieces for days (I humbly cleaned up every plastic/towel/poop pile in the yard without complaint)
If she were here today, she would still be peeved at me for this stunt, (well that and about a thousand or so more)
Thanks for the laughs Billie, I can always count on you to make me smile!
Hi Billie: You have to get your own comedy show. You could be a millionaire just telling your stories. As for wrinkles and funny looking skin all I can say is that I am starting to look older, but it would be worse if I lost weight. My eyes would be hanging down to my chin with all the eye edema I always have. My fat keeps my face plumped up a bit. When I lose weight the first place you see it is in my face.
My neighbors all tell me how good I look with all the years of having CML. I do not know what they expect to see.
My neighbors have always layed out soaking up the sun, and they look horrible. I cannot believe the one lady who is 10 years younger than me, and I got up close one day to talk to her. She looks like one big prune. My advice would be to use a moisturizer, and stay out of the sun.
I hope you're feeling better. Have you gone to the doctors yet? I wouldn't think that Gleevac would make you sick after all these years, If you're not well yet,it's better to be safe than sorry.You're so busy running around and taking care of everybody else except yourself. Maybe you need some r&r. Before you get a real bad problem. We all know how stress affects our bodies. So baby yourself for a while okay?
Hey maybe if we walk around on our hands all the time all our fat will go to our face and fill out the wrinkles,and make our hair look fuller. The only problem with that is everybody else will have to do it also to see how beautiful we are. That's a really dumb idea,but I'm always thinking!!!!!! love Billie
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.
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.
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!
Hi Pam: I wrote on another topic about Fish Oil. I take Nature's Bounty Odorless enteric coated softgel capsules
1200 mg of Fish Oil. I never burp it or taste it, and it has made a difference in my Triglycerides. They came down for the first time in years. I hear so many people complain about that aftertaste. If you can get these, try them.
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 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.
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.
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
Sometime I will share two stories, one about a hand held tanning lamp (that my dad took to the driveway and smashed by driving over it with his truck) and the other about the time I used cooking oil and iodine for sunbathing. There are still times I reflect on the fact my parents decided to keep me and not put me up for adoption soon after I began to walk and talk. Although the stories I mentioned are pretty good, I bet Billie can top them, hands down!
Hi Susan, I will look into that, I have never had a fish oil capsule where I didn't taste fishy a bit after taking the pill.
Mariebow, sorry you hurt yourself hope you feel better soon, but glad we made you laugh (minus the pain). I learned long ago to plant wildflowers, they re=seed themselves and even if weeds grow up in them, it looks planned. The thing I find most interesting about my skin is I used to tan, and tan dark, everything I have read about the TKI's and Sprycel states I would be more apt to burn in the sun, I have been in the sun quite a bit and there is no burning, even with the steroids. I am darker, but small scars, healed scratches, my marks from naturally ungraceful ways, and other weird spots are white. I know TKI's are supposed to affect skin color, ghostly comes to mind, but like all things I can't do it like everyone else. I have to be the weirdo and be spotty. (somewhere there is going to be a comment from Billie or Judy about me turning into a Dalmatian).
It's a good thing we didn't grow up next to each other, we would have both ended up in foster care, and our mothers would have become permanent residents of the mental health unit, at our local hospitals. I love your mayo adventure, what did we know, when our mom's yelled at us and said don't use the good towels? I always thought why is that a good towel? A towel is a towel! I never knew about the good towels until after I was married. I would give you the deed to my house to see a picture of you the morning after the mayo. I bet your poodle was your best friend forever. Poor baby it's a wonder you didn't kill him. Where on earth did you get these crazy ideas?
I have a question for you, how long were you walking funny after you gave yourself your first bikini wax? It took me about 10 days, and I was working as a waitress and we had to wear those white uniforms,and pantyhose. I would rather give birth then go through that again. It was terrible I kept stuffing tissues between my undies and pantyhose, that worked great until the tissues kept sliding down my leg inside my pantyhose and we were so busy I couldn't go to the rest room, to fix myself up. So for days I had to work with these tissues sliding down my legs inside my pantyhose. I'm still hoping nobody noticed! On the 10th day my mom said to me, well why didn't you just buy a pair of boxer shorts! Love Billie
Didn't do the bikini wax, used Nair. It seemed to burn a bit, but I figured with the smooth skin look that was revealed on television it was worth a little discomfort. It wasn't. As tough as my skin has always been I had an allergic reaction to Nair, but because I was involved in yet another home make over, I had eye brows, lip line, under arms, legs and bikini line coated with the stuff. Of course i wanted it to work, so I left it on about 15 minutes longer than the recommended time, longer is better right?. I showered, areas were still burning, put on lotion which I found out later reacted to the Nair allergy in negative way. A few hours later everything was on fire, looked like it too, beet red, every area. My mother semi ignored my uncomfortable comments until just a short time later when the blisters began appearing. She took me to the emergency room, they, in their infinite wisdom diagnosed I was allergic to the Nair(no kidding) wrapped every area in gauze or gauze pads, shot me up with steroids, prescription for some salve that looked and smelled used motor oil and I was not permitted to go outside for 10 days, I guess the sun would have done a serious number on the entire mass of blistered skin. I was to go commando and only a light cover to let the air to the skin to help heal. I lost my allowance for the entire summer that year, that alone probably saved my life, with no money I couldn't buy beauty products, and she made less trips to the doctor or hospital.
Thanks for clearing something up for me. I had never heard the expression go commando before. About 3 years ago I was watching that show The Doctors, and they kept talking about go commando, by the end of the show I figured out what they meant, but I guess I forgot the expression. So for 3 years I have been saying go geronomo! Billie
Bob would probably drive me to the zoo and respectfully ask my cage ever never be opened again. My mother used to be on the receiving end of my antics, now it is Bob. Someone, or everyone should feel sorry for them. But I think Ron is right up there with Bob, Ron has the wife that came home from a church outing on the priest's boat with his wife covered in green algae and sporting the priest's football jersey.