18 replies to this topic

[Megz]

Hi there,

I was diagnosed in September 2011 after months of tests and doctors appointments. I guess they thought I was too young to have CML and kept thinking that it was some infection or random inflammation somewhere in my body. They called me 3 hours after my bone marrow biopsy to tell me the news.  I also have a genetic disorder called incontienta pigmenti, that I was born with. Luckily I have a mild form of the genetic disorder, it affects my skin, brain, eyes, teeth and hair, but very mildly, you would never be able to tell if you saw me. Thus far, my onc told me that he thinks I am the first recorded case of a person with IP to get CML and he doesn't think they're related but he doesn't know (IP is rare - only about 400 cases were known when I was diagnosed as a baby). Does anyone else have it too?? Anyhoo, to my questions..... I'm currently on Tasigna 150mg PO BID, the low dose because of my age. I've had a bunch of side effects (nausea, fatigue, diarrhea, headache, SEVERE joint pain, rash) ....my doctor has me on gabbapentin, lidoderm patches, and Scopolamine patch. None of them work for the pain and nausea, any advise?? Originally they didn't want me on anything for nausea then they tried compozine (which barely worked) and then he gave me Zydis to try yesterday which gave me severe restlessness, I felt like every nerve was firing in my body, has anyone else experienced that? So today he gave me the scopolamine patch to try ... Has anyone found that this works? I'm in a lot of pain with my joints especially my knees and my left hip, the lidoderm patch and gabbapentin don't help, any recommendations?? 

Meg

[GerryL]

Hi Meg,

Welcome to the site.

I'm on Gleevec so I'll let the boys and girls on Tasigna answer your questions on treatments for your side effects. In reading them they are typical for Tasigna and Gleevec.

One suggestion for your diarrhea is to start taking some probiotics, plus a few of us always keep Imodium on hand (you can take up to 8 per day - but run it past your doctor first).

Again - sorry you had to be here, these drugs (TKIs) will work for the majority of us and we expect to live a normal life span.

Take Care

Gerry

[Trey]

Meg,

Personally, I would ditch the patches.  The joint pain and other pains associated with these drugs do not respond to those.  The pains are not fibromyalgic or otherwise, they are side effects that must be worked through, mainly with Naproxen or even aspirin type drugs.  Gleevec users should avoid ibuprofen (Motrin) due to interaction issues.  You should be able to get through to a lower pain level over time.  There are no magic patches or pills for the pain since it is induced by the body trying to adapt to the drugs, and some of it is related to the rapid turnover of bone structure, which is accelerated by the TKI drugs.  Most docs do not understand the mechanisms involved.  Sorry that there are no cure-alls.  But these things get better over time for most of us.

Regarding the IP, CML does not involve the X chromosome, but can occasionally affect the Y chromosome.  Since you do not have a Y, it should not be related. 

Welcome.  I am sure you will do well. 

[pamsouth]

I have been on Gleevec since 2005.  I had bone pain before Gleevec and still have bone pain, 6/12 year later.  Mostly my neck shoulders and lower back.

But then I am 64 years old so I am not sure how much is old age.  I do ice, massages, Physical Therapy and Aqua exercises. 

Pamsouth

[Lizzybee]

Hi Meg,

I'm on Tasigna, but my side effects are not as bad as yours.  They are also not as bad as they were the first few months, so I hope yours will subside with time, too.  For nausea, I had compazine in the hospital right after my diagnosis and I did not like the way it affected me at all.  I have a prescription of Phenergan for home use, the only side effect it has is sleepiness, so I can't use it unless it's a convenient time to sleep.  If I had more nausea and needed something I could take any time, I would ask for Zofran.  For the rash, if it's really bad you could try a course of prednisone.  Mine has never gotten so bad that it's raw, so I use topical cortizone cream.  I also use tons of lotion - mostly Lubriderm, but my doctor's nurse said Eucerin is good too.  If you get an itchy rash on your scalp, you can try using tea tree oil shampoo and conditioner. I use Trader Joes, which is only $3.99 for a 16 oz bottle.  If you don't have a TJ's near you, Paul Mitchell makes a set of tea tree oil products.  Fatigue is my worst ongoing issue.  My husband has been great about helping me set boundaries and get enough rest.  I hope that eventually, it will get better.

Elizabeth

[Megz]

Elizabeth,

I feel so much better after this. It's good to know it should get better, even a little bit would be good. I have mostly good days, but geeze louis is the joint pain crappy on those bad days. My Onc originally had me on compozine for the nausea, but it only helped a little, then he tried Zydis (crazy side effects with that) and now I have the scopolamine patch for behind my ear, it seems to be worth it. My onc said Zofran interacts with the tasigna,

I thought I was crazy with the itchy scapy, patches of dry skin would come up, like a 1x1in patch of dry flaky skin, do you have that too??  I'm going to try the tea tree oil shampoo and conditioner, Thank you!

I was really tired the first 2 weeks on Tasigna, I slept like 16 hours a day, so I totally get the fatique. It's wierd last year I could work 70 hour weeks and now i'm completely drained by wednedsay, it feels good to know i'm not the only one! I've been drinking matcha tea in the afternoon to help, it has a lot of phytochemicals and antioxidants, plus some caffenie. I feel really refreshed after drinking it, it might be something to try. I'm not nauseous after drinking it surprisinly, mainly just after I take my meds.

Thanks again for the input!

Meg

[Megz]

Thanks Gerry,

Would you recommend just eating more yogurt, like activia, or taking a probiotic pill?

Meg

[Megz]

Thanks Pam!

I have a lot of pain in those same areas, I heard that it can get better or just stay the same, so ill have to try those exercises. I really want to do the Jimmy Fund Walk this year, it's my goal, whether I have to fake it untill I feel it or the pain gets less and less. I want it! Have you reached remission yet? They gave me a rough estimate of 16 months before I would reach remission, and I was curious if thats a normal range for everyone or not.

Meg

[Lizzybee]

Meg,

I haven't heard of that tea, but I'll look for it.  I used to only drink coffee in the morning, but now I need an afternoon cup just to get through the day.

I do get dry itchy patches. The cortizone cream helps with the itching.

I'm a CPA and used to work long hours, but after my diagnosis, I had to take six weeks off from work, and I slept a lot during those weeks. When I went back, it was a struggle to work 25-30 hours/week.  Now I'm working 40-45 and I feel like all I do is work and sleep. I don't know how in the world I worked the hours I did last tax season before I was diagnosed, but now I'm healthier and can't do it.

Elizabeth

[Megz]

Elizabeth,

If you have a tea shop around you they might have it or you can order it online. It's lime green in color, because it's a powder. They take baby Japanese leaves and grind them down to a fine powder. I just heat up some milk and add a tad of sugar and then a tbsp or so of the matcha.  A lot of people don't like it, but I love it! If you have a starbucks around you they also carry it, just order a green tea latte. It's slightly expensive at starbucks so I only get it there on special days. I hope you like it!!

Did they tell you to leave work for a while because of the risk getting sick from your patients? I took about the same amount of time off when I started treatment. I'm a dental hygienist and my onc was worried that I could catch something in the beginning of treatment. Plus I couldn't get out of bed/the house at first haha. Yeah it's like a curse. I didn't even have a lot of symptoms before I was diagnosed, and now it's as if I'm sicker than I ever was and my counts have come down so i'm supposed to be "healthier",  So I totally understand where you're coming from. Thank you so much for sharing with me, it means a lot!

Meg

[Lizzybee]

Meg,

I will have to try the green tea latte, and if I like it I'll look for the tea to make my own.  I have a little bit of money left on a Starbucks card that I got for Christmas.  I have a tea store nearby that has a pretty big selection, so they probably carry the tea.

The reason I had to take six weeks off was to recuperate and get some strength back.  Looking back, it's unbelievable that I didn't realize I was sick.  I was having a lot of symptoms, but nothing that seemed severe enough to concern me too much. I thought I was just getting old and lazy, lol.  And being a working mom, I'm used to being tired.  At diagnosis, my hgb was 7.1, and after 2 or 3 doses of hydrea, it was 6.5. I started spiking fevers and was so weak I couldn't get off the couch.  So... I had a "routine" physical on Wednesday, diagnosed on Thursday, and hospitalized on Saturday. My onc was concerned that I was in accelerated phase, but thankfully the pathology reports showed that I was still in chronic phase.  Apparently, I was edging close to the next phase, though.  My onc said that if I hadn't had a physical, I would have collapsed and been diagnosed within a month.  When he told me to take six weeks off, he said we'd re-assess after six weeks; he wasn't sure six weeks would be enough.  I tried to work at home some while I was off, but most days I couldn't work more than 2-3 hours if that. A friend organized meals for us until I went back to work, and I have someone to clean my house, so I didn't have to do any cooking or cleaning while I was off.  My onc wasn't too worried about my immunity. He said to avoid knowingly being around sick people, but I could go to church, go shopping, etc.

Take care,

Elizabeth

[GerryL]

Hi Meg,

It wouldn't hurt to take both in the beginning and when things have settled down you could try dropping one off. I continue to take the probiotic and have the yoghurt when I feel like eating a yoghurt.

Gerry

[Happycat]

Hi, Meg and welcome.

I had lots of joint and bone pain for ca. 2 months. Antiinflammatories worked best. I really needed prednisone. I couldn't take ibuprofen (long story), so relied on Vicodin. I also found hot showers, warm heating pads and icy hot ointment worked well. I slathered the icy hot on and just laid around in misery.  It's basically aspirin in ointment form.  The prednisone gave me the most long term relief.

HTH

Traci

[JoeyC]

I was just diagnosed with CML 3 weeks ago and the whole experience is surreal to me. I stumbled on your posts and I must say that it's been some comfort. I really don't know what to say, I don't want to become some blabbering fool, not the first impression I want to give. I'm pretty overwhelmed by it all. I start my Tasigna regimen tomorrow morning and to be honest I'm terrified of it and the potential side effects. But then again, I'm terrified of my CML. I was totally asymptomatic when the doctor told me and he was very positive about my prognosis. I'm glad my wife was with me because I didn't hear anything beyond, "You have CML". I still haven't found the way to get myself off the floor. I'm sorry, I'm blabbering already. I read in other threads how long some of you all have been taking TKI's and it gives me hope. I might even let myself start dreaming again.

[Megz]

Joey,

Welcome to the CML group. Never stop dreaming! It's important to think about the future and how amazing it's going to be. My advise for tomorrow would be take baby steps and keep an open mind. The first week knocked me out pretty bad, I slept about 16 hours a day. However everyone reacts a little differently from what I've learned from this discussion board. So you may have no side effects at all. When ever I'm having a bad day, I put a smile on and fake it until I feel it. Eventually it makes me feel better, mainly because I don't want my loved ones to worry, they worry enough for me as it is. My doctor told me in the beginning that these TKI's are new miracle drugs. And if nothing else, you get to keep most of your hair. You'll do great tomorrow, so don't stress! If you're experiencing any nausea my onc suggested that I take pills before I go to bed and wake up a hour early in the morning to take the pill and dose off again. "Sleep through the nausea" he said. It helps me with the morning dose a lot, not so much at night, but again everyone reacts differently so there's no harm in trying it. Saltines are a must :-)

My doctor gave me some advise after my diagnosis, he said, "you'll have good days, and sick days, but mostly youll just be sick of having cancer". He is was right, the side effects are by no means convenient, but hey, I'm alive. And so are you! The Tasigna brought my CBC counts to normal in 5 short months. And they said it will get me into remission hopefully in the next 10 months.

It's really important to have a good support group, not just family and friends, but others with CML too. I've learned a lot about others in the group and it's good to feel like you're not alone.

I hope this helps, good luck tomorrow! Rest and lots of fluids!

Meg

[Laila98]

HI Meg and Joey!! I'm Laila (obviously right lol). I was just curious how young you are? I'm really young to have CML, sadly I'm in blast crisis. I thought it was AML but I guess I misunderstood the doctor.  So it is good to have someone go with you to your appointments because it makes it sooo much easier! When my doctor was talking about my CML and bing in blast and I heard "acute" so thought I had AML but what he really said was it is like acute as in we need to act fast. I'm on Tasigna 800 mgs a day 400 in the morning and 400 at night and i'm only a freshman in high school. Maybe it's because I'm more advanced?? i know that I've been on tasigna for a little bit and yeah I have the itchy scalp, tummy aches, fatigue and rash too.. I also get massive headaches it feels like migraines on steroids. I have been told by others and by doctors that they go away with in a 3 month time frame or at least become manageable! Oh i have massive body aches too. Just think you guys be glad you didn't wait, i waited a  long time and now i'm getting a transplant on the 12th (which transplants are odd now a days for CML) and to know it might have been prevented if I was caught sooner SUCKS..

Joey, I was diagnosed in Feb 2012 so only a few weeks ago I know how scary it is!! Just know that it's okay to be scared! We are ALL scared at some point and even thought it's not even been a month or maybe just barely a month for me I'm like almost at not peace with it because I don't think you'll ever really be at "peace" with having cancer but I've accepted the fact.. I know what i need to do and I'm doing it.. Just know if you stay on top of everything, don't let anything "slide by" take your meds and you're suppose to have a good life. Don't google information, that's something i've learned from others on here. I started crying about stuff i read and i mean full blown balling my eyes out but Trey actually explained to me how things online are outdated and back from when TKI's weren't really out there yet.If you notice any kind of change in your numbers then see a hematologist (I think that's what they are called lol) CML is something that's very "rare" in the oncology world. They tend to not know as much about CML then a specialist would so if it makes you feel better go see one! Just know you have so many friends here to support BOTH of you and I'll tell you what this board has been a blessing to me! I ask question even if I feel dumb, I vent, I talk to others about their experience and it's brought so much ease in my journey through this..

Trey is VERY smart when it comes to explaining test results and information about all of the cancers in general! He is a huge HUGE help to not only my family but a lot of people on this site so any medical advice he's your man.. For support and emotional advice and issues I mean we all here can help you and make you feel welcomed and you start to gain ease. I talked to a girl (Sunshine48) is her name on here and she's been through 3 or 4 of the chemo meds and different doctors and everything else and she's getting a transplant as well and talking to her, hearing her story and experience was very helpful to me personally. I started a discussion saying "new to site and scared" and by golly I've got so many replies and people who truly care and want to help! You will too alls it takes is reaching out, we all have our hands out waiting :-)...

i don't have a lot of knowledge about everything because I am newer, I'm young and I'm in a different boat because I DID wait but if either of you need support or need to talk I'm here too! I might not know everything technical but I know what it's like to be new to cancer and CML and the shock.. Feel free to PM me, write me back here or hey join in on my discussion I have so many people talking and if you join in they will CERTAINLY talk to both you too.. You're aren't alone just remember that : )..

Okay I didn't mean to write a book, sorry lol.. My thoughts and prayers are with the both of you and blessings from good ol Michigan, <3 Laila

[Happycat]

Joey,

Dre-ee-ee-ee-am, dream, dream, dream....

Sorry, couldn't resist, sometimes old bits of songs burst out of me at the slightest trigger!  Anyway, yes, you CAN dare dream. Things will more likely than not be just fine for you. It's a shock at first, especially when you felt perfectly fine before they somehow found the CML.  yes, you will likely feel side effects, but hopefully they won't last long. Even for those that do hang around, it's better than the alternative of untreated cancer!  Count your blessings. You will find more than you know you had.

For me, I'm on gleevec, so can't relate to tasigna side effects. But I find the gleevec side effects kinda go in cycles.  I dont get them all at once, they sorta take tunes. This week it is freaky finger spasms and foot cramps. Last week it was fatigue. The week before, there were no side effects. The point is, once you get thru the first few months, you should see the side effects taper off and settle down.

HTH,

Traci

[Lizzybee]

Joey,

The first few weeks and months are the hardest. It's hard to believe now, but there will come a day when CML doesn't fill your every thought.  When I was in the hospital after my diagnosis, I was sure my doctor lied about living a normal life with CML.  "Normal" might be a little different than before the diagnosis, but after your body adjusts to the meds and your blood counts return to normal, you really will live a mostly normal life. 

Hang in there,

Elizabeth

[Megz]

I forgot to say that I started Tasigna on October 3, 2011 so it's only been 5 months.