20 replies to this topic

[Cathy]

HI, Well I was on Gleevec for 10 months till it stopped working, and was put on Tasigna then got Acute Pancreatitis after only 3 pills, LOL so I've spent the past 5 weeks gettting

over that and getting my enzyems back to normal. I have had a 5 week break first one since dx a year ago and let me tell you what a blessing, I feel so good and close to normal. Now

that my counts are back within normal range I get my sprycel order tomorrow and start back on drugs Friday. I'm really trying to be positive and remain that way but not a good track

record with these drugs and side effects. The journey conintues. I've been reading all the comments on sprycel and hoping for the best! I just can't believe how good I feel now. So

Short lived mini break but it's been a really good one!

Everyone have a nice evening!

Cathy 

[hannibellemo]

Cathy,

I can really relate to how good you feel right now after having been off all meds for 5 weeks. Two years ago I was doing great on Gleevec until my liver took exception. I was off for 7 weeks waiting for my liver enzymes to get back to normal. Even though I finally feel pretty good now and have acclimated to Sprycel I know it's not the same quality of "good" I had back then!

Here's hoping you and Sprycel are a good fit and everything goes as it should!

Pat

[Marnie]

I love Sprycel.  Been on it for 3 months.  No side effects except minor headache at first and SEVERE SUN SENSITIVITY (wear sun screen).   My PCR results just came back and they were great for the first time ever.  I hope Sprycel is as good for you as it seems to be for me.  Drinking orange juice seems to make me gassy. . .just giving you a "heads up."  Didn't seem to have that problem before Sprycel.

marnie

[Teresabourgeois]

Cathy,

I was newely dx with CML at the end of Feb. 2011.  I was put on a protocal study for Sprycel.  It is the 1st drug that I have taken.  Side effects for me are rash and headaches.  I also have short term memory loss.  Who knows if its the drug or just my new life with CML.  My white blood count is down and I'll go to MD Anderson in 2 weeks for my 1st check up and Bone marrow biopsy.  I sure hope that this pill works for you.  I'm still nervous to see how it works on me.   Best wishes!!!

[jrsboo]

Dear Theresa,

The short term memory loss is the drug.  I posted elsewhere that I have been so affected, that I got cogntive testing done, and auditory short term memory is down by 50% of my usual capacity.  That is a lot.  They are setting up Speech therapy as rehab, somehow that is supposed to help.

Dx 9-2010, sprycel as first line drug for me.

Caroline

[Cathy]

Hi Happy Cinco De Mayo! Have a margarita!

We actually have sunshine today to boot! Cleveland isn't known for its sunshine! LOL

Thank you all for your good wishes, and tips I do really apprecaite everyone so much on here! All the experience on here really helps.But man do I feel good today! 

Tomorrow is dee day! I might be lucky this time!

dx 5/20/10 (almost 1 year!)

Thank you all,

Cathy 

[Teresabourgeois]

.That was mean! I too am having problem with recalling words and spelling.  This problem makes everyday talking and working very difficult

[grannyd]

Hi Cathy, I seen you are from Cleveland Ohio!!! I am also from Ohio, south of Youngstown. I was just wondering if you go to Cleveland Clinic? I go to Dr. Advani there, she is wonderful. My onc is from my area but she had me go to Cleveland to Dr. Advani because she is a specialist in all leukemias. Anyway, I don't know of any people close to where I live that has CML, just wanted to say HI & hope you are doing well. I have been on Tasigna since diagnoses & have had good results with the only side effect-- the dreaded tiredness-fatigue!!! I think my husband thinks I am super glued to the couch, each day when he comes home from work---there I am-- taking my NAP!!!!! Anyway---I feel so connected to all the wonderful people on this site, they are the best & most warm hearted people, love their encouraging words & knowledge of CML. Have a great day, knowing the sun is shining here makes me feel almost NORMAL again, had been feeling like a robot, just going thru the motions in a dark dreary world. Prayers to all, granny d

[Cathy]

Hi There a few on here from northern Ohio! One person on here goes to Detroit for care. I don't go go Cleveland Clinic. I go to Alan Lubin onc in Mayfield Heights. He isn't a CML specialist but he is excellent the most kind and wonderful doctor I ever have had.And he staff is also very smart man. I will keep that in mind If I ever need a specialist. I'm more of a University Hospital kind of gal      My fatique still has never went away even off drugs for 5 weeks but its been so much better I finally started exercising and hoping to try to keep it up now. I'm doing well hard to believe in 2 weeks it i will be a year!

I just wanted to say Hi back!

[VickiW]

Morning everyone!

I've been on Sprycel for 2 years now and initially had a problem with the return of short term memory loss (had a real problem with that on Gleevec) but after a few months it got much better.  Now, like many of the Sprycel side effects, it seems to come and go in cycles.  Actually been having a bit of a problem lately~~~~what were we talking about?

hugs and prayers,

Vicki

[Teresabourgeois]

Hello,

I'm just hoping to forget that phone call from my onoc in Feb. 2011 saying that I had "CML"   Who knew what that even was.  And he made me promise not to google it....RIGHT..ha! 

[jrsboo]

Dear Teresa,

That was mean of Billie, and why I didn't answer her. 

There is some correlation I guess between auditory short term memory and the ability to recall words when your brain requests them.  I am also having the odd problem of using the wrong word for things, and don't realize it until after it has come out of my mouth.  I think I tried to use Sandbox for something like Violin.  As soon as I said it, I knew it was wrong, but out it popped.  I haven't had the rehab yet, but plan on posting all about it when it happens.

Sorry I didn't answer soon, I was having my BMB yesterday.  Husband said I was in pain, but they must have given me a great big push of the sedative right after cause I don't remember any of it.  Don't remember rolling back over, don't remember my onc leaving the room, don't even remember being wheeled out to recovery.  And apparently I was talking to people during that time!!!

But that memory loss is due to the anethesia!

--Caroline

[Teresabourgeois]

Caroline,

I hope that you get good results from your BMB.  If you have been on Sprycel for 1 yr and still have the memory loss, it doesn't seem like this is something that will just go away (like the rash)?  My rash was horrible at one point and then went away completely.  However, I live in South Louisiana and the heat seems to be bringing it back.  I guess I'll need to move up north..ha!  Good luck with the therapy too.  Keep me posted.  I do have one question about hair.  Did you loose it on this medicine?  Mine is falling out in massive amounts everyday.  Praying that it stops too.

[jrsboo]

Dear Teresa,

Yes, hair fell out like crazy. Luckily I had thick hair to begin with.  I filled up the hairbrush every single day for weeks and weeks.  The front of my scalp is now quite visible.  Sigh.  But the massive fall out stopped at about the 5 month mark.  Dr. says it will grow back.  hmmm.  not holding my breath, but hoping it does.  It is getting hard to figure out how to do my bangs and cover up my new bald spot.

I have only been on Sprycel since Oct 2010, so not quite a year, but close.

As for the skin issues, I have been seeing a dermotologist.  I am becoming convinced that the drugs are supressing my ability to fight off infections.  So what would have been a simple case of a yeast infection or prickly heat, which I have always been prone to and one of the reasons I moved way up here, took off and I basically had no skin left.  I have been on special gels and body shampoos now, and finally I have new skin!!! 

Along with the hair falling off my head, I have also lost almost all of my body hair.  I haven't had to shave my legs in over 6 months, I have about 3 little hairs left, and they are so fine and thin, I am just kind of watching them for entertainment purposes.  The hair on my arms is almost all gone and also very fine and thin.  And then the other place on your body that has hair (the X rated place), has thinned out and is now BLOND!  Isn't that the weirdest???  Also, eyebrows are thinner and there is more grey in them. 

As for other side effects, there are a ton.  Mostly I battle the fatigue, I get short of breath some days, and just can't do anything but sleep.  I have learned to simply use the scooters in the store if I must, and not pay any attention to what people might be thinking.  It is easier from the scooter level than you think.  Your eyes are at hip level, not eye level, so I just ignore everyone.

Sigh.

Caroline

[Teresabourgeois]

Thanks for the hair information.  I guess I'll go wig shopping if my hair doesn't stop falling soon.  You know when my local onco told me that I had CML he said that I would simply take a pill a day with no side effects.  He lead me to believe that it would be like taking a vitamin.  I'm in my 3rd month now and it hasn't been that easy.  He even said that CML is not cancer.  It's not like I am trying to make a really big deal either.  However, my local Dr. only has 3 CML paitents and my Internest hasn't even ever had 1.  I just think these Doctors don't really know what to say or do.  I am getting more information from this website and you then anywhere else.  Thanks for the help!

[CallMeLucky]

If you read through some of the threads you will see that Oncologist's, particularly general oncologist's who do not specialize in CML tend to downplay the seriousness of the disease and the issues we encounter with treatment.  You seem to be having a rough go at the start but things should settle down after a while and some of the stuff you are experiencing now will go away and a few of the staple side effects like fatigue may sit with you for the long run.

Any oncologist who says CML is not cancer is questionable.  I would say he knows that it is of course cancer (uncontrolled growth of white blood cells?  sounds like cancer to me) and up until a little over 10 years ago, it was a dreaded cancer that oncologist's particularly hated to diagnose because the outcome of the disease was very predictable and there was little they could do to treat it effectively.  So to say today everything is hunky dory is really insensitive, if nothing else.  I assure you, if he himself had CML the first words out of his mouth would be "I have cancer".

I don't think it is a big deal that your internist doesn't have many CML patients, given the rarity of the disease I wouldn't expect a general practitioner to have a lot of patients with it.  You may consider reaching out for a second opinion from a CML specialist.  There are a number of them throughout the country.  It is usually not necessary to be treated by a specialist in most cases, but having one review your case early on and sign off on the treatment plan can be reassuring.  It also provides you an avenue to pursue if things start to go off the normal path.  Again, many people go off the path and it is not eminent doom, but it helps to have someone on your med team who knows what they are talking about if something unexpected shows up.

Just food for thought.  In most cases a regular oncologist can treat CML without incident, in spite of themselves and their stupid comments.

One of the first oncologist's I met said to me "You got CML, who's luckier than you?  You'll take one pill a day and you'll have some puffy eyes, no big deal."

Needless to say puffy eyes are the least of my concerns and I stopped making a list of who was luckier than me half way through the A's.

[jrsboo]

I agree wholeheartedly with Lucky.  But I was going to use much much strong language regarding your Onc who said you don't have cancer and it was like taking a vitamin.  He can take my Spyrcel and shove it where the sun don't shine for that comment!  I am having a hard time.  A really hard time. 

I am sure that Lucky is right, and the sensitivity of your Onc will not affect your ability to respond to the drug.  BUT, and this is a big but, KNOWLEDGE IS POWER.  The more you know the more powerful you become.  I would hot foot it over to the closest CML expert for a second opinion so fast, that first Onc's hair would fall out!

I am sorry that this is happening to you.  All of it.  The disease, the side effects, the crappy comments, all of it.

It is not a walk in the park.

Caroline

[GerryL]

Hi Caroline,

Just wondering if you have a bit of fluid retention with your shortness of breath side effect?

Gerry

[jrsboo]

Yup, some retention, but not around heart or lungs according to the massive xrays and such they did when I first started on it.  Back then I couldn't walk two feet without puffing.  Now it just seems to be worse when I am totally fatigued and have pushed myself way too far.

Thanks for being concerned.  I do adore my LLS friends!!!

Caroline