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Emotional roller coaster


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#1 SB3

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Posted 19 October 2011 - 01:44 PM

I was diagnosed a month ago and have been on Sprycel for 11 days. I've spent the past month reading everything I can about CML, scouring this discussion board and really trying to educate myself as best as possible. Physically, I feel fine other than feeling more tired than usual at night. So far, I've had very few side effects from Sprycel and am grateful for that. Logically, I know that CML is treatable and the drugs offer tremendous promise. Emotionally, though, I'm all over the place. For those who've been on this journey much longer than I have, how do you cope with that constant reel that keeps playing in my head of "holy crap, I have leukemia"?



#2 jrsboo

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Posted 19 October 2011 - 01:54 PM

Dear SB3,

I am afraid that time is the only way to stop the roller coaster.  Believe it or not, there will be a time in the future (each of us is different) when it will stop being foremost in your thoughts.  I am almost exactly one year in, and it is no longer the holy crap thought that stays in the foreground. 

But it was terrifying to get here.  I researched and researched, found tons of information, didn't understand most of it, but kept on reading knowing that eventually the words would begin to make sense.  And they did.  I made my own descriptions of what was going on with the blood cells and checked it against what others were saying.  I find that teaching something helps me learn something, kind of backwards, but then, I am a little odd.

I also took advantage of the psychologist and psychaitrist at the cancer center where I am treated.  It was vastly reassuring to hear that what I was going through was completely normal, that I was handling everything just fine, and that things would get better.  I am a sucker for a professional opinion.

I am still suseptible to moments of "What?  Leukemia?  Me????"  but they are farther and farther apart. 

Hang in there, surround yourself with good friends and loving family members, dump those that don't make you feel better (at least for now).  It is normal to reevaluate your life when given this diagnosis.  It is normal to go through a grieving process. 

Sending warm fuzzy thoughts your way,

Caroline



#3 grannyd

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Posted 19 October 2011 - 02:01 PM

SB3, I remember being in your situation last Jan. when I was first diagnosed. My husband had to take a week & half off work to be with me, I was so anxuois, nervous, & reeling out of control!!! Then I found this site!! I can honestly say it turned me around!! So many people offer their expierences & help! I was on this site just looking at all the posts then finally posted & sooo many people responded. So---when everyone here says it gets easier with time----- believe them-- IT DOES!!!!!! Ask any thing you want, someone will always reply. Trey, he is the go to guy, I swear he is a Dr. himself. Susan, going on 13 years living with CML. Billie, Marnie, Call Me Lucky, Phil, Tedsey, the list goes on & on!!!! Everyone also has a sense of humor, & that is so important in any situation!!! So, just keep posting & asking questions, or vent if you need to. We are all here for you. Hang in there!!! Prayers to all, granny d



#4 CallMeLucky

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Posted 19 October 2011 - 02:21 PM

Unfortunately there is no magic formula.  Actually, I take that back, there is a magic formula, but it is not quick.

The formula is simply Time + Good Results = Some peace of mind.

The more time that passes, the more you will get used to the idea and you will eventually start to get tired of thinking about it all the time.  As your test results come back showing you are responding to the drug and the disease is under control, you will start to think more about how you live with the disease (any side effects, insurance issues/worries, etc) than you do about the fear of the disease, and let's be honest, the fear of dying.

It is a traumatic thing to find out you have cancer.  Give yourself time and you will get over the initial shock.

I hope you have a smooth go of it and get back to your life soon


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#5 nathaliece

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Posted 19 October 2011 - 02:55 PM

SB3,

I was diagnosed last November and agree with Caroline.  Those emotional moments come less frequently and usually with less intensity than they did in the first 6 months.  I attribute some of the adjustment to seeing positive and encouraging results as a result of the medication.  I am on 400mg Gleevec.  The wisdom and support of those on this board has been invaluable to me during my journey.  I had to make the decision to change oncologists in the first 3 months and reached that decision, aided with the perspective and encouragement of folks from this board.  Having never spoken with a hematologist/oncologist prior to my diagnosis, it took me a few months to question and determine that my first oncologist did not have much experience with CML.  Having confidence in my new oncology team has also assisted me in getting more comfortable with my new "normal" of being a CML patient whose oral chemo sometimes makes me feel pretty crummy.

So, hang in there.  Lean on us and use us when you need to vent.  We are all here for you.


Nat



#6 mikefromillinois

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Posted 19 October 2011 - 03:07 PM

For me it will be three months tomorrow since my diagnosis.  I've already gone from 'holy crap, I have leukemia' to 'oh yeah, I have leukemia".  Today I have to remind myself as opposed to a couple months ago when leukemia was the only thing I could think about.  We all have our unique ways of dealing with things and you will no doubt handle things in your own ways.  Personally, I find the "community" of this discussion board to be a great source of support, optimism, inspiration, and of course information.  Wishing you good health and increasing peace of mind....    Mike  



#7 pammartin

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Posted 19 October 2011 - 03:33 PM

Hi,

Although I cannot offer you  any advice about the long term journey associated with CML, I can relate to your recent diagnosis.  Mine was less than two weeks ago, and I am still in the 'holy crap I have leukemia' stage.  I too, have read everything I can get my hands on, looked for major support and am very happy to find this site.  I do believe we will settle as time goes by and our numbers begin to return to safe levels.   I must confess some serious jealousy, I have only taken my first dose of Sprycel and I already have serious headaches that lasted most of the night/day.  Although I am excited about the med working I dread the next pill in an hour, by midnight last night I thought I would never get to sleep with the pounding in my head.  The great thing is these symptoms usually last only a few weeks before tapering off, so the discomfort is worth the end result.  It is logical to realize CML is very treatable, but then our emotions go to the 'what ifs'  and we ride that roller coaster once again.  This past Sunday I was unfit to be around, I am surprised my family is still talking to me, if I was not yelling I experienced waves of tears that did not seem to stop.  I cannot say I know how you feel because each of us are different and experience our own unique set of circumstances related to our diagnosis, but I can say the people here are wonderful, they provide loads of support, and although they are not doctors, many have been traveling the CML path for years.  Give yourself some time, in a sense we are experiencing a loss, the concept we are healthy adults without disease is gone, many people go through the stages of denial, bargaining, anger and finally acceptance.  I have to admit I skipped the first two, went straight to anger, and perhaps am leaning toward acceptance, although it is a long way away.

I have been reading many posts on here, from many years ago to the current ones, and the roller coaster is a natural part of acceptance.  Everyone offers great information, but I must admit I have been reading everything Trey posts.  His blog about acceptance (and a boat load of information) was probably the best thing I have read, and it was refreshing to know although I am in awe of his knowledge and experience, he felt similar emotions we are feeling now at the beginning of his diagnosis.  Gosh, sometimes it just sucks to be human!

I wish you the best with your continued treatment and hopefully both of our roller coaster rides will level out to a nice even road.

Take care

Pam



#8 Marnie

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Posted 19 October 2011 - 05:24 PM

I don't have anything to add except, welcome to our club.  It's a club full of wonderful people, even though none of us wanted membership in this club.  You will find your new normal after a time, and will be able to stop thinking about cml 100% of the time.

Marnie



#9 Teresabourgeois

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Posted 19 October 2011 - 06:00 PM

Welcome SB3,  You are very lucky to have found this group so soon after your DX.  I was DX in Feb of this year and didn't happen upon this site for a few months.  I don't always post but I do come here to find answers.  Today I was looking for discussions about leg cramps and pains and found you!  When I found out that I had CML I believe that I went into shock.  Even today I sometimes say to myself "I have leukemia"????  Me???  How random!  The emotional side of this cancer for me has been the worst.  It's scary no matter how many people say "But if you have to have leukemia, it's the best one to have"  REALLY!!!  Get ready, you will hear this too.  Like someone mentioned, Trey has very helpful links and he seems to know this cancer better than most Doctors.  He is very techy at times and clinical.  But he knows what he is talking about.  Best wishes to you.  They say time helps?  I'm still waiting...ha!



#10 SB3

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Posted 20 October 2011 - 11:06 AM

Thank you all for taking the time to respond to me. It's so helpful to have a place to turn where people "get it" and know exactly how I'm feeling. I'm having a much better day today, and I'm sure it's a result of all the caring and concern you displayed in your responses. What a relief to know that this board is there and offers a place where I can turn to for information as well as compassion. Thank you!!!



#11 pammartin

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Posted 20 October 2011 - 12:19 PM

Nice to hear it is a good day!  Take Care



#12 Guest_billronm_*

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Posted 20 October 2011 - 11:39 PM

Hi SB3 and PAMMARTIN,

   I have had cml for over 4 years now as we all say welcome to the club nobody wants to join.(Boy ain't that the truth). It took me over 3 years to find this site. I always was a late starter. My mom used to tell me I didn't start talking until I was 3 and I haven't stopped yet. If you both didn't feel the way you do, then you both would defininitly need professional help. The shock of just hearing it is something you never forget nor the date. Just like (if your old enough) to remember exactly where you were when jfk was assasinated or 9/11. even when you gave birth if you have children, and your husband was terrified to get within 6 feet of you. Actually mine left the building to go get coffee. There WAS a coffee shop in the hospital. I think he went to Brazil for the coffee. In those days all they had was tylonal and enemas and when we gave birth they stuck our legs up in the air. And dear sweet hubby is in the waiting room being comforted by big blond bimbo nurses because he was worried about me and I'm in the delivery room where men weren't allowed because it would upset them. I just kept glaring at him and saying Vascectomy! Works every time.

   Seriously when I was first dx every morning I woke up all I could think was hello my name is Billie and I have cancer. That's what hits us all at first. But somehow,someway we get through those first months and the first and second year and the side effects start to ease up and we learn how to deal with them,especially from this site everybody is different and we all share different ways we deal with them. I'm on Sprycel and I get sores in my mouth someone on this site said there was a mouthwash that helps I asked my onc and he gave me a script for medical mouthwash called bmx.So we all have dealt with different side effects and some people get none. Then we just need to vent this is the place to do it. We cope with it we deal with it but sometimes we have to let it out and this is the place because we all understand and we will help you get through those rough times.

   Let me tell you about my week which has nothing to do with cml. Because of family history my brother,sister and I have to get a colonoscopy every 2 years. I got mine wednesday the test isn't bad the prep is a pain.The day before you can only drink clear liquids and at 4:00 pm you take 2 little pills then you have a bottle of some kind of powder you have to mix with 64 oz of water and start drinking it all.Then after you drink all 64 oz you have to take 2 more little pills. So right after you take the pills and start drinking you shart and shart and shart and shart some more.After the 64oz is down you take those other 2 pills and keep on sharting until about 2:30 am at 4:am I have to get up because my test is at 6:00 am. I was still sharting. I went in my pajamas! I get to outpatient at 6:00 am still sharting

now I go through this every 2 years so I know how it works. 6:00 am they roll me into the or put me in lala land I wake up and they tell me they couldn't get the scope all the way up and if they tried to force it they might perforate my bowel okay I'm still in lala land necking with Barry Manilow he's not gay he just hasn't met me yet. Stop laughing Phil your outfit is a little fufu. Feathers and all that flair.

   So they couldn't finish the test as they were explaining this to my hubby I'm still with Barry Manilow and he's singing can't smile without you just to me. As you know what goes in must come out and as Barry is singing to me all the air they pumped into me during the test was coming out. So Barry my Doc and my Hubby are trying to talk over all that noise coming out of me. I could have cared less. This really is the truth. So since they couldn't finish the test I had 2 options 1 was make an appt. and go to the hospital and have a barium enema I would have to do the prep again the night before or since I was already prepped (cute huh) I could go home and just drink clear liquids and have the barium this morning. I went this morning . I haven't eaten since Monday but I just wan'ted to get it over with. So I did  I won't charm you with the details but Barry wasn't there and everybody still had to talk over all the noises coming out of me.I really have to write that book someday. I always said I never have to make thing up these crazy things happen to me all the time all my life. I know it all is so surreal now but hang in there you will be fine I'm still here to adore my 2 grandsons 6&8 and I'll still be here for thier graduation.     Sincerely Billie        Now that it"s all over I've been dying to tell somebody       hopefully I can sleep now



#13 pammartin

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Posted 21 October 2011 - 05:38 AM

Typing is so bland, and it does not do justice to the laughter you gave me this morning.  I honestly feel for you, but because I adore humor, I could not keep the video in my head of the doctor and your husband trying to talk louder than your bodies musical presentation.  Perhaps someone thought there was a sousaphone in the building, that was a bit out of tune.

I did learn something though, I never knew Barry Manilow was gay, guess I missed that coming out.  Funny, my brother loved his music, (I did also, but picking on him was more important)  I have always called him Mary Banilow, used to drive my brother nuts.  Oh well, you still have your dreams.

Sprycel is working, so I am ignoring the side effects when I can, and giving in to them when I can't.  When the headache gets too bad, I lay down, when my joints ache, I take a hot bath, and the nausea is controllable as long as I eat small frequent meals, not so much at one time.  Great you have the mouthwash, if that symptom arises you will be my first contact for the name of the product.

I hope you have an awesome day, you deserve it!

Pam



#14 reedgirl

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Posted 21 October 2011 - 06:06 AM

Billie,

  Thank you so much for sharing your story...I am still laughing, sorry to laugh at your expense!  The things we must go through, surely there's a better way to have this procedure done!  I had one 2 years ago at an early age so I figure I'm good to go for at least 20 years, I was 37!!

  Hang in there....Greg is still on Sprycel, since March.  He's doing very good, at least I think he is.  He never complains, shows, or lets anyone know how he is really feeling, so as far as I know he's ok.  We go back to Michigan in 2 weeks and I expect after that visit to be told he's in full blown remission.  I rarely get on the board anymore, mostly because I don't have much time, but also because I am trying to sort of forget about the illness. When I do get on I just "creep" on everyones posts.  I wish this were a little like facebook where we could just hit a "like" button!

  I do believe Sprycel is such a strong, powerful drug that it will shut this crappy chromosome mix up down!  To the rest of you taking Sprycel, just try to get through the intial side effects and hang in there it really is a good drug that will give the results we all want to hear...PCRU!

Keep up the good spirits Billie,

Audrey



#15 Guest_billronm_*

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Posted 21 October 2011 - 11:39 AM

Dear Audrey,

   It is so good to hear from you. I think about you and Greg often. I'm so glad he is doing okay. I'm on Sprycel and I just have annoying little side effects that pop up now and then, and the headaches have dissappeared for quite a while. My biggest problem is fatigue but I have other health issues and take meds that cause fatigue. We all understand how you have to back off from this site sometimes. It is a constant reminder of our condition. But after a couple days break I like to get back on because there are so many new people and they are so scared It is a good feeling to be able to let them know we all understand and hopefully put thier mind at ease a little bit. And help them understand the side effects do ease up a lot. We can't do much about our illness but if we can help others cope we're doing something positive and that helps us a lot too. I can't believe it's been almost a year since Gregs dx and losing his dad. I hope slowly but surely you two are getting the estate settled. Don't give up on Disney World you'll get there yet.Or even think about a cruise they are so relaxing and actually cheaper than Disney World. I hope Greg realizes what an amazing wife he has. If he doesn't you know me I'll tell him even if it's by Pony Express. Well Barrys gone but the hemmoroids linger on so I better go find my Prep H. No soft music yesterday I sounded more like a brass band who could hold a note for a very long time.  Sincerely Billie



#16 pammartin

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Posted 21 October 2011 - 01:02 PM

Billie

Jeez, stop making me laugh already.  The headaches are horrible, then you come along and post a funny, I know I shouldn't read it, but I do anyway and I laugh while it feels like my head is coming off my shoulders.  Oh, brass bands are not so bad, even if they are out of tune.

I would be floundering if not for everyone's support from my first post just a few days ago.  For the ones that continue to return, my sincere thank you goes out to each and every one, if it were not for these dumb side effects right now, I think I would be feeling pretty good.  For the ones that do not return often, I understand your choice, getting on and enjoying life is the best revenge, (stolen from Trey on a previous post)

Good grief, hemmoriods on top of everything else, am surpised you are not sitting on a donut cushion till further notice.

Pam



#17 Guest_billronm_*

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Posted 21 October 2011 - 02:31 PM

Dear Pam,

   I'm sorry I'm making your headache worse. I don't mean to. Sometimes I don't operate with a full deck. (most of the time). I do know what you are going through. I was on Gleevac for over 3 years and your head cannot handle all the episodes that happened during that glorius time. Hint Wendys restaurant in South Carolina will never be the same. Thank God I live in Pa. Finally last October my Onc took me off G and I had a med break for 5 weeks it was wonderful I did'nt shart once. Sorry don't laugh. After 5 weeks I was to start on Sprycel. I felt so good being off G I planned a big Thanksgiving Dinner. I was nervous about starting a new med we all are but I had gi problems before cml. I started Sprycel 3 days before Thanksgiving. I told you I wasn't to bright. I knew a new med came with side effects. I'm not a newbie I've been around the block. Couldn't I wait a couple more days before starting S like the day after thanksgiving. Nooo! So I got the Sprycel Headache Tuesday and everything else that goes with it I just remember the headache. So hubby went shopping for thanksgiving dinner, I figured I'd feel good enough to prepare a 20 lb. turkey and the trimmings Wednesday.Didn't happen. Wednesday night I had to cancel the dinner. But at least Ron and I would still have a nice meal Thursday. Well my wonderful hubby ended up cooking the whole meal 20lb turkey and enough food for 10 in case someone showed up. I didn't even show up. The headache got so bad I couldn't move. So Poor Ron sat at the table with our little brown cocker spaniel Annie he even put a place setting for her and let her sit on a chair. And the 2 of them had thanksgiving dinner all by themselves.I felt so bad. Ron and Annie didn't they had lots of food and tons of leftovers. I think they enjoyed themselves. But Ron forgot to light the candles he felt bad. I'm laying in bed while railroad spikes are being driven in my head saying idiot idiot.It starts to let up gradually after about 3 days but it's so gradual you really don't notice it at first.The first 2 weeks are the worst but not as bad as the first few days. The headaches come and go off and on for about 2 months but you can deal with them. Then they ease up and become normal headaches for a while I would take 2 liquid ibuprofin and they would go away in a few minutes. if I didn't have that liquid ibuprofin during that time I would have cut my head off. After all it was thanksgiving and I had a lot of freshly sharpened knives. Hee Hee.Once in a while someone on our site will say something out of the blue and we all get going it gets insane we all get to joking around about our side effects.and what we do to cope with them. I still don't believe there is a monkey butt powder for hemmoroids, or Marnie tried putting it on her butt in a tent and almost fell on her butt trying to put on her latex motorcycle riding suit. And shes a school teacher. Caroline is a lawyer who went shopping with a friend to run some errands and took her friend to Home Depot so her friend could pick up what she needed but it turns out Caroline was the one who needed something .She's partially retired now. That's just how it works when you have 1000 new best friends. I don't use a doughnut I use a soft pillow.

Gotta go we're going to order chinese for dinner. I can't cook with hemmeroids. or pots and pans etc.  Sincerely Billie                                



#18 pammartin

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Posted 21 October 2011 - 08:43 PM

As a fellow Pennsylvanian, hats off to you!  I swear I almost wet my pants laughing so hard at your description of Thanksgiving, your husband might have had to cook, but at least you had the ingredients.  The candles would have been a nice touch, bet the pup missed the ambiance.  I must say you 'nailed it' so to speak, I have been saying since Tuesday I someone is hammering spikes in my head, thanks for clarifying what kind.  I am anxiously waiting for day four, but as long as the Sprycel is working, (and the side effects become less) I will take those spikes as a necessary evil.  It may be a bit hard for some to understand, but reading others have had the same experiences as I am, makes the symptoms less threatening.  Like you I have other symptoms, but the headache seems to be the most severe.

Although I am setting myself up for another bought of laugher/pain, I have to ask about the Wendy's in South Carolina, reading between the lines, I am guessing the public restroom had a serious workout when you visited.  Now I know what I am in for when I read your post, I have decided to accept the pain, it is worth the read.  Chinese, I am sooo jealous, I have lost my Nexium, so I am eating as bland as you can get.  Speaking of that, it is funny, over the past few years as I head toward 50 I have slowly added medicines at my doctors advice, Nexium for acid reflux, Savella for fibromyalgia, Cardizem for angina, but when you get hit with the CML diagnosis, all of these become unimportant and they take them away.  My family was most concerned about the loss of the small dose of Effexor I have been taking because of menopause, alas, even that has disappeared from my medicine cabinet.  (One of the reasons I worried they would never speak to me again after last Sunday).  I have salvaged my Ambien at present, so for a few hours I can escape the spikes in blissful rest, and I have a bottle of Xanax from Feb 2010 I was to take PRN.  I have not taken one since the Sprycel, but I carry them with me as a security blanket.  One day I will have to ask if I am permitted to take Xanax PRN, but for now, I just like the feel of the bottle in my pocket, and the possibility I can take one if I have a serious anxiety attack.  After thinking about it, not only are the spikes from the Sprycel, the loss of these meds probably has merit in my symptoms.

I have a goal this weekend; not to offend anyone or be outright rude because I am not feeling well.  Although my husband believes it is an admirable goal, he has bet against me getting past tomorrow at mid-day, my son's father is in town and it is his opinion I will not be able to keep my mouth from sarcasm, even if it would be covered with duct tape, which he offered to apply.  I told him a although goals are not always met, they are important for progress, he just shook his head and walked away, I fear he has no faith me in at all.

My worst times are about three hours after I take the pill at 5 p.m. and then they continue throughout the night and begin lessoning about noon to 1 p.m. the following day.  The window of semi free spikes is not all that great, but I believe I will save your posts till then, just in case.

Pam



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Posted 21 October 2011 - 11:55 PM

Pamela Dahling,

    Has no one told you the Three Rules of Ettiquette of living with cml?  We do take anti-depressants, we do take anti-anxiety medications, and we do drink (us ladies daintily sip small glasses of white wine) but we always have a big bottle of rotgut hidden under our chairs. That's how we deal with this @#$%&$ing disease we're half-looped druggies.

  Oboy I'm on a roll I just filled my water bottle with white wine! Oh well I didn't want anymore water anyway. I guess I shouldn't set the water jug and the wine bottle on the counter at the same time. that is one thing about cml no matter how bad you screw something up or your mind goes totally blank and it will we call it brain fog it comes and goes just blame everything on cml. I think my subconscious wanted me to pour that wine in my water bottle. It's always 5:00 somewhere. Anyway I'll get serious for a minute. It's more important then dumping a load in my pants in the parking lot at wendys running into a 2 stall bathroom with no lock on the door and no paper towel holder just a blow dryer.and I had to go so bad I didn't even grab my purse try cleaning that mess up while trying to hold the bathroom door shut with 1 foot.and why do they put those blow dryers up so high? I never make stories up or even glorify them this stuff always happens to me and I'm just a sweet innocent? Irish Catholic girl.

  There are a lot of different way to cope with cml and you'll get all the answers to your questions we all have different side effects that do ease up and our bodies all handle the drugs differently. It's pretty much a trial and error thing what works for one person may not work for another but if you have good doctors and a good onc they can give you something to help you. The first thing my onc told me was to have a couple drinks or a couple glasses of wine every night my cardiologist told me to have a few drinks in moderation it's actually good for you especially to relieve stress and help you sleep better. I love my doctors. I have had clinical depression and panic disorder for years. In my case it's hereditary and throw in menopause give me something or I will kill. A lot of people on this site are taking mild antidepressants I take cymbalta. Effexor is a very good anti-depressant  these meds just calm you down so you can calm yourself down. They don't take the problem away they just help you cope with it better. I hate taking pills and I fought it for a long time until I just couldn't function anymore and I had 2 children and a husband who traveled so I had to get my act together.So I took my pcp's advice and saw a professional. That was 30 years ago I was so young and scared but they were just finding out that clinical depression and panic disorder were hereditary and my mom and grandmother had it. I was told I would have to take medicine the rest of my life. Okay I took my meds for a while I felt great and stopped taking them back to square one.I finally got it through my thick head I had a chemical imbalance and I would have to take the meds forever. I have Xanax I have been on it 30 years.I'm not addicted my script says take as needed. A couple times during the years I had to take 4 1mg a day just to keep from hyperventilating the panic attacks were so bad. That would knock a horse out not me my stress level was so high But I always took it as needed. When I didn't need it I didn't take it.

several years ago I just took a half a pill if that didn't work I took the other half. I just weaned myself off it to the point where I didn't take it because I didn't need it.My psychiatrist explained to me that it's a wonderful drug for people who physically need it but just a recreational drug for those who don't it's the brain chemistry or something. I never got high or ever took more than prescribed actually I took less.

What I'm getting at is you might need a little help just calming youself down and that will really help your headache.Xanax is a muscle relaxer so it just stands to reason if you can relax your muscles you can control your headache. I bet if you took a half of one right now your headache would ease up.Did you stop taking your meds on your own or did your doc take you off them? Call your onc first thing Monday and ask him about it. Next time I'll tell you about going off Nexium. I don't want to sound like a know it but I almost had throat cancer the surgery was almost scheduled in Pittsburgh Luckily my dr wasn't quick to order it he put me on nexium for a short while and it started to heal the pre cancerous cells in my esophogus caused by acid reflux. I now take protonix because I have barets disease look it up I can't spell it right.Yeah I'm a bit of a trainwreck.Oh wait for act 2. I just want you to realize you can't take yourself off meds without docs okay. And I hate to see you suffer any more than you have to.

We all hate to take pills but we do what we have to. Okay. I can't stay serious any longer. Next stop no-tell motel in Virginia. Boy I'm sure glad I don't have to see those people again. I hope.

                                     Sincerely, Billie               Wine tastes pretty good out of a water bottle, I may be on to something



#20 pammartin

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Posted 22 October 2011 - 08:35 AM

Billi,

At the risk of taking over this thread completely with your and my conversation, I hope others are enjoying your posts as much as I am.  Today is the 5th day of Sprycel, and the headache is not that bad.  I believe I have progressed from railroad spikes to ten penny nails, that is awesome progress.

Dr took all meds from me, I am here to tell you I would not have stopped taking them, especially the Effexor.  I did not ask about the Xanax, didn't want the security blanket taken away.  See, this is why I am struggling with the doctor(s).  These meds would have helped me through the past 5 days, I am making it, but why suffer more than I have too?

I need to have some serious conversations with the Pittsburgh doctor about meds.  I would talk about the rest of your post, but the ten pennies are still being pounded in my head. Because I am feeling a bit human today I am allowing my husband to take me out for breakfast, he wants to get me in public, I made it through the visit with my son's father and stayed calm, he is determined to win this bet.  While we are out I have informed him I am going to purchase a water bottle that is not plastic, it is my opinion wine will taste better out of a better grade container.

Don't worry, I will ask first thing Monday morning, but I am going to have to have a very good reason why I cannot take the anti-anxiety and occasional Xanax to keep my family from throwing me out of the house.

I hope you have a great day, I am off to do some water bottle shopping.

Pam






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