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#1 Tgod812

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Posted 20 March 2012 - 02:45 AM

I stumbled upon this site whilst searching google for answers or help dealing with headaches from sprycel. I was diagnosed on Thursday with cml, and it's all still kinda a shock to me. I'm 24 years old and I can't help but feel I just was not prepared for all this. Just thought I had some sort of cold I couldn't shake. Started taking sprycel Saturday night. Gotta say there's no headache like what I woke up with the next morning. I have noticed there seems to be some amazing and inspiring people on here. It's nice to see in such a scary time. Just wanted to kinda introduce myself. Never really been good at writing these things. But hey I'm getting all kind of new experiences these days. I used to avoid the doctor like the plague. Now it seems like I'm there almost everyday. And giving blood. Boy do I hate needles. Learning to cope though. Well if you read this thank you for your time. And if anybody has anything they've found to cut these headaches at least some I'd love to hear about it. Oh and how to sleep again. How do you do that? Lol. Thanks all.

-Brandon



#2 tiouki

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Posted 20 March 2012 - 06:00 AM

Hello Brandon, welcome here!

I was in a similar situation 6 months ago (I'm 22, also with sprycel). I didn't get headaches but for people who had some with this drug usually it stopped after a couple weeks.

I hope you will be ok, sprycel is an amazing drug against CML.
If it helps I can tell you that today I have no side effects, live a totally normal life and only spend half a day each trimester at the doctor (so I don't see many needles   )

Hang on you are in the worst part it will get much better

Pierre



#3 NotJack?

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Posted 20 March 2012 - 07:17 AM

Hey Brandon

Not much experience on Sprycel here, but welcome.  My headaches on Tasigna only occur weekly, and only last a brief time, but suck.  I hope that yours go away and stay away, like the others!  Take care, Jack


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#4 Marnie

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Posted 20 March 2012 - 07:39 AM

Hey, Brandon. . .welcome to the site.  Sorry that you had to join the club!  Doesn't matter what the age. . .the diagnosis is a shock for anyone.  I've been on Sprycel for a year after 2 years on Gleevec.  When I switched drugs, I had minor headaches for about 2 weeks.  However, I had heard horror stories of monster headaches, so I started out at half dose for a week.  If you are like most folks, the headaches should subside after a week or two.  I have very few side-effects from Sprycel any more.

Good luck,

Marnie



#5 hannibellemo

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Posted 20 March 2012 - 08:48 AM

Welcome, Brandon, sorry you are joining us at your age but you'll find some great people here, "young, middlin and older", who can help you along the way if you need it. I only had a headache for one day on Sprycel so I can't help you there. You'll find we are all different with our side effects. Here's hoping yours are short-lived!

Good luck,

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#6 Rissa

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Posted 20 March 2012 - 02:36 PM

Welcome Brandon,

It's tough in the beginning.  It will get better though.  Right now you're probably consumed with the "why" questions, "why me?", "why is this happening?", etc.  It's a lot to process.  I get a lot of sinus headaches, but they're not caused by my medicine (gleevec).  I take half a dose of alka seltzer plus cold medicine at night.  It gets rid of my headache and helps me sleep.  Of course, whatever you take, you should make sure there is no drug interaction with sprycel.  Hang in there.  It just takes time to get used to.



#7 pammartin

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Posted 20 March 2012 - 04:02 PM

Hi Brandon,

A fellow CML-er on here compared the beginning headaches to someone pounding railroad spikes into her head.  I totally agreed.  I am sorry you have the headaches, but I can share they do not last.  I used a few Tylenol when my stomach permitted, the first few weeks of Sprycel can be a bit brutal, but speaking from experience that horrid headache started to calm down within a week.  The following week it was similar to paneling nails being driven in my head, and by the third week the headaches had virtually disappeared.  They do happen every once in a while now, but by the time I head for the Tylenol bottle, it is usually starting to go away.  Welcome!  Nice to meet you.

Pam



#8 Sunshine48

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Posted 20 March 2012 - 05:14 PM

Hi Brandon! I was diagnosed at age 24 as well and I am 26 now. I've been switched to sprycel just a few weeks ago and they do start to let up but they do stink when you get them. I had worst headaches on Tasigna though, so the ones on sprycel seem to be "less" for me lol. I hope they start to die down for you and things start to pick up, I know it's hard hearing you have cancer of any kind and I pray your battle goes well. My best advice is to keep up with all your information and if you feel something isn't right take charge and follow up with your doctor lol. Don't be afraid to ask questions, get second opinions or question anything, it's your life hun... That is something I've had to learn the hard way and I'm still learning lol.

Oh the sleeping thing, honestly there's nothing I can suggest lol. I went from sleeping ALLLL the time day in and day out to being on sprycel and having the extream fatigue but never being able to sleep it seems. Or I sleep when I can here and there but I'm always fatigue getting up and doing anything seems impossible half the time. My biggest problem is I knew this is NEW to you and you have it all on your mind well I am about to go through a new situation for me so I have a lot on mine and I find myself late at night mind wondering way to much and keeping me up. My doctor perscribed Colazapam (I think that's the spelling lol) to try and help my mind stop running, it works some lol. Good luck on your journey hun and you'll do great! glad you found us, I actually found the website the same exact way from google.. Ask as many question as you want and join on them too : )



#9 Susan61

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Posted 20 March 2012 - 05:42 PM

Hi Brandon:  I cannot give advice on Sprycel, because I am on Gleevec. Just wanted to welcome you to the group.

You can always get the answers you want from someone on here, and as you go along you can help with some of your experiences to help others.



#10 Pin

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Posted 20 March 2012 - 06:08 PM

Hi Brandon - welcome to the group! It's all very scary in the beginning, but as people told me back then (9 months ago) - it does get better with time. They were right

Read Trey's blog if you can http://treyscml.blogspot.com.au/

Especially the excerpts below - This information is what really helped me get through that initial shock of being diagnosed. I still have to remind myself of it sometimes.

"GOOD NEWS ABOUT CML

Gleevec and other medications help approximately 95% of us with CML live an otherwise fairly normal life.

Data accumulated from the patients from the Gleevec clinical IRIS trial through present day shows that those who attain a 3 log reduction (or better) have very little chance of relapse. No one would say "no" chance, but close enough.

Quote from the link below:
"The probability of progression free survival is tightly correlated with the level of response, approaching 100% in those patients who achieve a reduction of BCR-ABL mRNA by at least 3-log at 12 months."

It is also good news that  the underlying mechanism of the CML Philadelphia Chromosome mutation and bcr-abl signaling are relatively well understood compared to how other leukemias and cancers operate. That allows CML research to focus on advanced issues that can improve our quality of life, and even trying to find a cure, while research into other leukemias and cancers are still focused on trying to just keep someone alive. So there is good reason to hope that Gleevec and other drugs will serve us well while better approaches are developed, and possibly a cure is found."


"Also, in December 2008 Dr Brian Druker, a leading CML specialist who was instrumental in the development of Gleevec, said that most CML patients could expect to live at least 30 years after diagnosis just based on current CML drugs even if nothing else comes along; but since much more is coming in the future, 30 years is likely just the beginning. Because Gleevec was only approved 8 years ago, CML experts have previously hesitated to put a time-frame on expected survival due to lack of data, even though they often said it could be significant. So hearing Dr Druker say this shows the continually rising expectations for long term survival of CML. This should be very encouraging, and especially encouraging to young people with CML."


Diagnosed 9 June 2011, Glivec 400mg June 2011-July 2017, Tasigna 600mg July 2017-present (switched due to intolerable side effects, and desire for future cessation attempt).

Commenced monthly testing when MR4.0 lost during 2012.

 

2017: <0.01, <0.01, 0.005 (200mg Glivec, Adelaide) <0.01, 0.001 (new test sensitivity)

2016: <0.01, <0.01, PCRU, 0.002 (Adelaide)

2015: <0.01, <0.01, <0.01, 0.013

2014: PCRU, <0.01, <0.01, <0.01, <0.01

2013: 0.01, 0.014, 0.016, 0.026, 0.041, <0.01, <0.01 

2012: <0.01, <0.01, 0.013, 0.032, 0.021

2011: 38.00, 12.00, 0.14


#11 jrsboo

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Posted 21 March 2012 - 12:32 PM

For sleeping, try asking your dr. for Ambien or some other sleeping aid.  I find I need the Ambien at least 3 nights out of 4, otherwise my brain just RACES as soon as I lay down. 

Just a thought.

Caroline



#12 pammartin

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Posted 21 March 2012 - 01:14 PM

Hi Caroline,

What dose of Ambien are you taking?  I am up to 15 mg and might have to move to 20 mg.  My mind still races, even when I sleep I wake up throughout the night and it is like my brain never shut off, I wake to the same thought I went to sleep with.  I find it odd throughout the day I seemed fogged in but at night when I should be sleeping, the brain races everywhere.

Pam



#13 jrsboo

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Posted 21 March 2012 - 08:57 PM

I take only 5 mg.  But I am very sensitive to drugs.  I have had insomnia most of my life, so I sleep with the TV on all night long.  I find that if my brain has something to 'do' then it lets me sleep.  So an Ambien, then turn over after 15 minutes, leaving Chelsea Lately on, and when I wake up at 7:30, some ridiculous ab roller ad is on, but I have slept the whole night.  I know that my brain is listening to the TV because I found out the hard way that if I leave it on the news, the stories in the news make it into my dreams and I have nightmares about wars and terrorists or murders.  Silly brain.

C



#14 pammartin

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Posted 21 March 2012 - 09:10 PM

Wow, that would be awful, the news/dreams that is.  I am going to ask dr for something else, I just can't seem to turn my brain off till morning, then when my son gets on the bus at 7, I can sleep like a baby with no help till about noon.  My husband thinks the Ambien has something to do with it.  You might have read but when I started the Sprycel 140 mg I took the Ambien also, I got up in the middle of the night and cut all my hair off.  He threatened to throw the pill bottle away.  Don't remember too much of the event, but I thought it was a dream.  Now that I am back to the 100 mg Sprycel, it doesn't seem to be working at all.  Thanks for the info!



#15 Judy2

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Posted 21 March 2012 - 09:16 PM

Hi Brandon,

I wanted to welcome you to the group. I am on Sprycel and never had the headaches so I'm afraid I can't be much help there. As far as the sleep issue, before I was dx I was an avid reader and found reading in bed would put me to sleep. I'm not sure if you are able to read with your headaches but if so you might want to give it a try. I'm hoping your side effects diminish soon and you have speedy results from Sprycel.

Judy



#16 jrsboo

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Posted 22 March 2012 - 11:17 AM

My recollection is that the Sprycel at the beginning would give me the most VIVID dreams!  When do you take your Sprycel?  I had to move it around the day in order to be able to sleep at all at night.  If I take it at bedtime it keeps me awake all night long.  If I take it in the morning, I sleep all damn day.  ARGH, shouldn't that be the other way around?  I have found that if I take it at dinner time around 6 pm, then I am very awake in the evening hours, but can sleep if I take the ambien.  Maybe taking it at lunch or even at 4 pm would be better?  Not sure.  This works for me.  Although from 1 pm to 4 pm I can barely keep my eyes open most days.  Fell asleep in the salon chair getting my hair colored the other day.  Appointment was at 2 pm! 

Such fun!

Caroline



#17 Tedsey

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Posted 22 March 2012 - 11:59 AM

Dear Brandon,

Glad (and sad) you stumbled upon our little group.  You will find a ton of support here.  There are quite a few members your age and I am sure you will find people who understand the trials and tribulations of a very young person dx with CML.  There is much hope for you to get to old age.  The drugs seem to work more often than not.  And being young, you may even have time for a cure to come along in your lifetime! 

Anyway, the headaches suck!  Mine only lasted for a week and then I was, more or less, good to go.  I am starting to get headaches again after being on Sprycel for a little over 18 months, but it could be allergies.  I find it is hard to tell what are side effects and what is just normal aches and pains (but I am a bit older than you).  I have two toddlers and I find I am totally able to keep up with them.  I feel so blessed.  I don't really feel any side-effects that I know are directly related Sprycel, (I am also on a SSRI), and live a normal life (outside of knowing I have this crappy disease--which kinda changes your perspective what you think you understand about life). 

This will be the absolute worst time right now.  A diagnosis of cancer totally upsets the apple cart and blows anything you ever thought about life or yourself out of the water.  Things will eventually settle down and you will make your way as you survive.  My advice is to hang with those who support you the most and make you feel loved and cared for.  You need them now.  Of course, we are here too.  Feel free to vent, complain or whatever you need.  If you choose to continue to post, please tell us the good also!  There will be good. 

Take care,

Tedsey



#18 pammartin

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Posted 22 March 2012 - 01:32 PM

Caroline,

I swear you described my daily routine to a T.  Sleep/awake/tired  You were spot on!  Holy cow, where's the hidden camera?



#19 jrsboo

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Posted 23 March 2012 - 11:34 AM

sorry, I am about to hijack this thread, hope it gives you a chuckle....

Pam,

I guess we are getting the same batch of Sprycel.  Or our bodies have the exact right chemistry.  I totally envy those that can just toddle along and go to work and stuff.  I don't begrudge them one tiny second, I am just jealous.  I had a blood draw yesterday that was supposed to be for 11 am, then a meeting with the nurse to discuss the results at noon.  Simple right?

Nope. 

Husband tells me the contractor is coming between 8 and 9 am to pick up his money.  Ok.  I wake up at 8:30 and hope I haven't missed him, but the dog hasn't moved off my legs, so he hasn't shown up yet.  Get dressed, make coffee.  Forget coffee in machine, go to list of things to do, go back for coffee, notice morning meds haven't been taken.  Take them.  Look at the dog.  Tell him he has to wait for his walk until after the contractor comes.  We will go at 9:01!  I promise.  Take coffee to home office, do stuff.  See list of what I need to do today.

I have to drop off the taxes at the accountants, get blood draw and then bring all the food I have been cooking for the past two weeks to my friends house (she is having surgery and I am leaving for California for 10 days so can't help out right away). 

Contractor arrives at 9:30.  Sigh.  Look at the clock.  Just enough time for a dog walk, I need to leave at 10 to make it to Seattle by 11.  Wait!  I forgot to check the cooler to see if it needs to be cleaned.  Yuck.  Needs to be cleaned.  Drag its huge self to the kitchen, knocking over the dog water.  Realize it won't fit in the sink.  But the bathtub will be perfect.  Of course I just cleaned the tub in anticipation of Next Door Neighbor's wonderful son coming to house sit for 10 days.  Sigh.  Clean the cooler.  Wipe the cooler.  Wipe the tub.  Wipe the dog water off the floor.

Pack the cooler.

Look at the dog, it is 9:50. 

Ok, once around the block buddy.  And so we go.  Wait, don't wanna be done with the walkie mama, dog stops at Next Door Neighbor's house, where his best friend Gunner lives.  When the 97 pound dog stops, I stop.  Gunner is a chihuahua/doxie mix, maybe 5 pounds.  They MUST have their morning confab.  So I go in her gate, she comes out and we chat for a few minutes. 

At 10:10 I start to load the car.  Finally, I am off.  Wait, the garage door won't close.  Sigh.  Get out of car, stiffen, do I have the taxes????  Check.  Yes I do.  Press the button and run out the garage as the door tries to murder me.

Get on the highway.

Large sign flashes.  Big accident ahead.

Sigh.

From the left lane, I get over 4 lanes and exit to a "long" cut but a non-blocked one.  All of I-5 North is closed. 

Realize that the new route is going to take me past the accountants first, and I should take advantage of that and stop there.  I was originally going to have the blood draw then go the accountant's, then back to the center for my nurse consult.  This new route will make me late for my blood draw.  I assure myself this will be ok.  I don't have a dr. visit, just a blood draw.

Drive through Downtown Seattle, park in the building, run up to the 38th floor, drop off taxes, forget to tell her 6 things. Run to Cancer center.  Get behind ninety year old couple trying to find a parking spot for their tiny toyota at -5 mph. I feel badly for them, they are so old and clearly scared about coming to the cancer center. BUT they are not even crawling.  They inch past an open space.  I wedge my husband's enormous car into the spot.  And run upstairs.  I have to pee, but have no time.  I register and sit down to wait.  They call my name and the nice man starts to talk to me.  I begin to tell him all about my veins.  He gives me a funny look and says he knows all about them. 

He does??  How is this possible.  Turns out he is the same guy as last time, two weeks ago.  I don't remember any new faces since starting this silly drug.  I am astonished.  I don't remember him at all. This freaks me out just as it has been doing for a year and a half.

I can barely keep my eyes open at this point.  Soooooo tired. 

Get lunch in the cafe at the center.  Tip of the day: don't get the stuffed cabbage rolls in a hospital.  They went down ok, but let me know about it later.........again and again.

Go upstairs and wait for the results.  In a couple of minutes a nurse starts walking towards me smiling and saying my name.  Mind you I am on the hemotology floor of the center and there are about 40 other people waiting and 15 staff all around.  Usually someone just stands at the door and calls out a name and waits for the person to stand up and walk over.  I don't recognize this nice young woman who is smiling at me. 

She recognizes me!  Apparently this is the same nurse I have been seeing for the last three blood draws.  Sigh.

My numbers are almost fine, but the Creatinine is off.  (I am also having kidney issues).  Not by much, just a little high.  Have I had enough to drink?  I say yes (later that night I will remember that I have been wicked thirsty for days and have been chugging water like crazy).  Oh well.

I leave the center and head for friends house.  I haven't gone there from here.  I get on a road I think will work (I went to school here, and should know all the roads by heart), but can't work out in my head where it will end and where I will need to get over but hope that I will recognize it when I see it.  Friend calls at the exact same time and says, just stay on that road and it actually goes almost all the way to her house.  As I drive I remember.  Sigh.

Get to friend's house.  Cannot believe I haven't fallen over yet.  So tired.

Visit with friend. 

Realize I have to go.  One more stop before home.  On craigslist the day before I had seen an ad for free foam scraps at a foam store right by her house.  Get my piece of paper with the ad, look at address.  Off I go.

Take all the foam.  Fills the entire back seat of the car, a double body bag sized bag stuffed with foam pieces.  I am going to cut them into tiny bits and make a mattress for my vintage trailer for camping.  I feel a little bad about taking ALL the foam, as I was leaving the owner smiles at me and asks if I am the puppet maker...........Yikes, someone else might be looking for free foam.  I hesitate.  Nope, all mine.  I got here first, and I have already wrestled it into a bag they gave me.  It is mine.

Get on the overpass to the highway home.  Strangely there are no cars on the highway.  A closer look reveals that there are flashing lights at the base of the on ramp and that they are moving a 4 car accident from the left side of the highway to the right side.  The back up, the radio says, is 10 miles long.  OMG.  A second closure of I-5??? in one day???  Luckily I am right at the beginning as the cars start to move, and I am on in about 15 minutes.  Cruise control on. 

Home.   Home   Home.  Must collapse...........Walk in with foam and Husband goes bananas.  What do I need with all that foam.  Small meltdown ensued.  He runs over and hugs me, tells me he was only kidding, he was just shocked at the amount. 

I sniffle, "But it was FREE!"  sniff sniff.

OK, pull self together.  NOW I can collapse.

Wait, I haven't done any work today (I am a virtual assistant for a retired judge who now runs mediations) and there are voicemails to return and emails to do .....................an hour later...................

collapse.

Now formerly all of that would have taken only a couple of hours, and I would have been fine to continue and also do all the work on my own clients that have been sitting for 3 weeks now. 

Sadly they will have to come with me on the vacation so I can work a bit as we toodle around the bay area.

And THAT was my Thursday. 

I am exhausted just retelling it.

Caroline






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