34 replies to this topic

[mikefromillinois]

Sometimes taking Sprycel at a different time of day can get rid of the nausea - or - taking with food, or without food, or with more water, or with different kinds of food helps too.

Mike

[SB3]

Everyone's reaction to the drugs is different, of course, but I found that the nausea from Sprycel disappeared when I stopped eating anything after taking it. I take it at night with dinner and then do not eat anything at all afterwards (although I do drink water). That really cut down on the nausea for me. And it helps with weight control too!

[CMLSurvivor]

Well the good news is, that even though your hair is falling out it will grow back. I take Gleevec and the samething happens. As it is falling out new hair is growing in. It is a little wierd. I have all different lengths of hair now. My hair also changed from being baby fine and straight as a board to a little course and a wavy curl. At first I bought all these scarves to cover my head thinking it would all fall out but it didn't. Never had to use the scarves.

Some of the side affect you experience will come and go. Some will come and just go completely away. Bone pain is one that goes away completely, but the muscle cramps comes and goes. My doctors nurse told me that the drugs we take for CML are cell splitters so anything that continually grows will have some change to it. Such as thinner skin, hair, nails, etc. Boy was she right on the  money with that.

[jrsboo]

Dear Cyd,

It is unlikely that all of your hair will fall out.  It will just be scary.  I have ridiculously thick curly hair, and filled up a hairbrush a day with falling out hair for a few months.  Then one day, Poof!  It stopped falling out.  And since it has stopped falling out and is growing in, all is well, only the front of my scalp every got really thin, just needed to do my bangs different for a bit.

Interestingly, most of my other hair fell out as well, or turned white and so baby fine as to be almost see through.  Very strange.  Last week I noticed that the hair on my legs has started to grow again, very sparse though. 

It will get better.  Promise.

Caroline

[pamsouth]

Yea I went thru that too.

"Can't stand my Oncologist and have the....."no one knows what I am going through" mask on. Anyone out here willing to just have some conversation?? Thanks, Cyd"

DX 2005 am still on Gleevec.  Acutally you can call some of leading Cancer centers, Like MDAanderson and The Hutch in Seattle Wash. 206-288-7222, just to mention the two I have dealt with.  They will call you right back they are right on top of the ball game all the way.  A world of difference between the leading cancer hospitals and many others.

Even if you can not fly there they will still talk to you on the phone.  I emailed the Hutch in Seattle last Sunday and the DOCTOR tried to call me Mon & Tues but I wasn' t home hoping to be able to touch base with him today.

Pam

[Judy2]

Great Pam. I'm so glad you're calling around and being proactive. Please keep me updated.

Judy

[pammartin]

HI Cyd,

I take my daily Sprycel between 5 and 6 p.m.  I try to eat about 5, this way I have a good base for the pill, and some of the effects seem to wear off slightly over night.  I do think taking it about an hour after I eat has helped me quite a bit.  I hate the 'good cancer' statement, I just hate it.  There is no such thing, no matter what kind it is.  I heard at one of my first visits, "At least this kind is curable."  Yeah, I turned to the nurse and said, "Have you read the statistics for bone marrow transplant, even if you have a sibling match?"  In reality they are getting better every day, but the entire statement and conversation annoyed me.  I lost quite a bit of hair, but I still have lots, so try not to worry too much, it was during the first month.  Of course two weeks ago I got up in the middle of the night and cut most of it off, apparently my Ambien was a bit strong now that my system is different.  I had talked of getting a haircut, but finding it all in the sink and the scissors beside had me afraid to look in the mirror ( I thought it was a dream).  I had a professional trim it up, and hopefully it won't take years to grow back!   You should not have to call anyone, let alone a drug company to figure out your meds, unless you want to double check your doctors opinion, that is just bull crap.  Best of luck on your doctor search! 

[cyd]

AMBIEN. I was taking that ...due to nightmares. Then, the doc told me I couldn't take it anymore with the Sprycel. Of course then he laughed and said, "what are you having nightmares about anyhow?" , "little leukemia cells chasing you around or something?" HUGE smile and one last laugh. What a  wonderful.....well, a**!  I am going to try and switch my Sprycel closer to bedtime. Thanks for the advice. As far as my hair, I'm not to concerned, just it was really thick and it goes down my back but, it's time for a new look anyhow. LOL. I don't see people much where I live anyhow, nor do I care.

WASHINGTON....is across the globe for me. I live in NY, central NY, so, if anyone knows of a good doc?????

cyd

[knoppl]

Welcome! I was diagnosed January 2010 so getting close to my 2 year mark since being diagnosed. I think I cried for weeks after being diagnosed and was so scared that I would not see my kids grow up. After the first year mark, things began to settle down with side effects, fatigue and having more hope of seeing my kids grow up. I am on Gleevec and did have hair loss the first 6 - 8 months and it did stop. It is fuller now, has a different texture and has curl. I have not heard of 1 person on this site who has gone bald from the tki's so I always had hope that the hair loss would stop. I chalked it up to the drug, the huge changes going on within the body those first few months and the stress. Other than taking that gold pill everyday, I really do not think as much about it. I do get ansty when my bloodwork is due and I have to see the hematologist.Just did the bloodwork yesterday and see him next week. This site has been so good for me and although I do not post often I try to read it regularyly and have learnt so much and know that I can turn here for support whenever I need it.

[roamingdoc83]

Good thread.

Hi Cyd...

I have/had two oncologists. I was diagnosed in Oct, '09. Went to first appointment. MD/Onc walked in, was personable and said immediately, "You will live and you will be okay!" He then spent

about ten minutes just chatting about life, turns out we were related way way back which was a hoot. He started me on Gleevec, made appointments for the right tests (BCR and Bone Marrow)

and we begun. I also teamed up with a UCLA oncologist who was (we thought) doing some studies and that might have been nice but ultimately didn't work out. He was / is great.

During a six month period with the diagnosis in the middle, I lost my Dad (old at 88 but still hard), my very best friend, my job, my insurance, and also had extreme complications from an accident

plus my wife lost her job. Let's just say the stress levels were very elevated.

We have coped by: exercise, diet and supplementation, education and research, Spiritual maintenance (which cannot be overlooked when dealing with a serious illness) and communications. I'm almost

undetectable in BCR and of course the blood is completely NORMAL now and that is nice. I take my Gleevec 400 in the AM after a protein rich breakfast with lots of fluids (seems carbs accentuates my

headache but that could just be me). I've tested my male hormones and my other blood counts and make sure all are balanced and normal. I take vitamins including DHEA and Melatonin and DiM to help

balance hormones (and there is tons of research and good studies to help in that/those decisions). Still looking for employment. Might be hard with an illness, not sure how employers find out but they seem to.

Hang tough!

[cyd]

Thanks to everyone for all the wonderful posts!! It is so awesome and yet sad to know that there are so many ppl out there in the same situation as I am in. It's very comforting to know that I can jump on here and ask you guys anything. All the advice....and all the "been there,done that" , is just great. Again, thanks for sharing and informing me! You have no idea what a relief it was to find this place.......or then again...maybe you do.

[cousineg]

Hello Cyd,

     

Take time to relax.There are several ways:
         by massage therapy

         by art therapy (see the CMLer portofolio)

         by music therapy (see The march toward healing          Too much angels in heaven!           The battle for healing )

Welcome to our group,

                                     Gilles

[pammartin]

I have every intention of finding those hateful underwear this weekend.  The carpet and hardwood is supposed to be installed today so perhaps we can find all the missing peices of our existance instead of piles of disorder.  If I do not find the underwear drawer, no collection is needed, I have resigned myself to the fact I have 4 pair and will have to wash them every 8 days.  hehe