15 replies to this topic

[dee145]

Haven't posted for awhile so I thought I would give a update.  Not much change and it sucks!!!!!!   Dr. put me on Buspar 10 mgs a day to take in between xanax but they help with depression but not the shaky feeling.  I am not sure if its anxiety or not.  At this point my mind is tired of thinking.  Why am I the only one that are getting these feelings?  We all have fatigue, aches and pains, nausea sometimes but I seem to be the odd ball with the shakes.  My hands and body don't shake to where you can see it, I feel it inside and it's a awful feeling.

Been getting ALOT of headaches which could be cause I am in full blown menopause the dr said.  No warning for that one just went straight to full blown!!!  Wasn't even in peri-menopause 6 months ago and now I am in full blown.  Which can cause anxiety, headaches, bloating (like I need more) and the list goes on.  So if Advil doesn't work for the headache I take a Oxycodone 5mgs and the headache stops but so does the shaky feeling and i feel almost like a normal person.  Don't know which is worse, taking 3-4mgs a day of xanax right now and I think my body got use to the dose but I won't raise it, dr says I can but I am afraid to go to high cause it will be harder to get off from if i would have to or taking 1 Oxycodone 5mgs and 1 xanax at bedtime with my anti-depressant to help me sleep.

Dr. doesnt't want me on any hormonal meds if possible cause he said they can mess with blood counts plus I am high risk for breast cancer.  I have had 3 lumpectomies and all were fine but I have 3 aunts on my mom's side that had breast cancer.  I have alot of tiny cysts in my breasts but when they get big enough to feel by hand they remove them to play it safe.  Plus their watching a cyst on left ovary.  I say just take it all out then that's 1 less thing to worry about as far as cancer.

I still see the therapist every other week, was every week but just to much with all the dr visits and med co-pays.  I feel a little better when I leave but she's not here the other 6 days.  I am doing the go to a quiet place and just relax but I have a hard time doing that.  Just can't get my mind where she wants it to go, I tried this before when I started getting migraines and it didn't work then.  She said to write in journals which I had already been doing, take a walk which I do in the evenings now that it's not cold, watch a movie but I fall asleep but I don't shake when I lay down anyway.  It's only when I am up and moving around.

I hadn't had to many problems with my acid reflux till lately.  I don't eat much chocolate anyway but 1 bite and my acid reflux goes full blown.  I have Aciphex but it doesn't work as well as my omeprazole (Prilosec) did when I was on that but they took me off and gave me this Aciphex.  Why can't I take 1 Omeprazole in the morning cause I take my Gleevec at supper?  What is the issue with the acid reflux meds and Gleevec in English terms so I understand it?

I am still PCRU as of last time but my meds were a couple days late this last time, damn paperwork got messed up, so we will see what happens next time.  My kids got me tickets to go see Kid Rock and Sheryl Crow in Hershey, PA on July 10th and then I am going to to the beach July 16-23rd,  hope I can do it all.  If not i will just stay at the house but last year I was more relaxed at the beach than here at home.

My meds are still the same, Gleevec 400mgs, Zofran 8mgs, xanax 1mg 3-4 times a day, Buspar 10mgs a day, Elavil 60mgs at bedtime and Oxycodone 5mgs as needed.  When I checked the drug interaction  site the buspar didn't mix with I think it was the Elavil but dr said that just meant not to take together or not to take the same time as Gleevec or at bedtime cause of Elavil.

I feel like a basket case, am I going to have to live with these shakes forever?  Even my therapist said it was from the other onc. stopping me "cold turkey" from a high dose of Elavil.  It really messed me up and I may never be drug free when it comes to the shakes, said I was lucky I didn't have a seizure.

Well, that's about it for me, feel like I am getting no where except the crying is better. But I still have my moments where I feel like no cares about me but dr said that could be connected to the menopause.  Onc. said the menopause was just another "whammy" added to my issues.

                                          Will write another time, any suggestions or just advic

[Teresabourgeois]

WOW Dee, I wish I had something to make you feel better.  I've had most of the things your mentioned except the shaking hands.  I'm not Dr. but sounds like you are on a lot of medicine.  I'm wondering if that could be some of this problem.  Keep the faith and I'll have you in my prayers (if that's ok)

[Marnie]

Hi, Dee. . .sorry to hear that you are still dealing with so many issues.  Have you tried to find things to be active in?  Maybe you already have hobbies and activities, but the more I stay active and busy, the less I notice and think about things that are bothering me.  It's much easier to feel every little ache, pain, shake, what-have-you when I'm sitting around.  If we're out hiking, camping, motorcycling, kayaking, snowboarding, etc. . .it's much easier to forget about things.  "Course the aches and pains are there at the end of the day. . .I'm sure it wouldn't be a cure for many of your ailments. . .but it might nelp.

Good luck.

Marnie

[lala]

Hi, Dee.  I am so sorry you are in such a hard place.  I get tired of having this disease, and I don't suffer like you do/are.  So I do understand a bit of how you are feeling.  To not feel good day after day is horrible.  If you can get to the beach, I bet it would be so good for you.  Also, how about a best friend?  Mine has been great....and my adult daughter has bee too.   It's nice to have people around that truly care about ME!  That's one good thing this disease has done for me.....to figure out who the real good ones are!!!!! . Try to surround yourself with gentle souls!  .  I hope you have a good doctor and pharmacist watching over you.  That oxycodone is a scary drug....be careful with that one.  It is sssooooo addictive.  Please know, there are many on this site that share your pain and hope you can weather this storm and find a new normal.  I am glad you wrote so you know you are not alone.    Lala

[Susan61]

Hi Dee:  Sorry your still suffering with all these issues.  You are definitely suffering with nerves, and they are not related to your CML or Menopause.

I also think your on too many different meds.  Have your doctor put you on Zoloft.  I went through a very bad period, and the Zoloft helped me.  I was only on 50mg. a day, you might need a higher dose.  There is probably something bothering you besides all your Illnesses.  With me it was and still is finances, but I am not on anything right now for my nerves.  I am doing it by myself with a lot of prayer.  As for your acid reflux, the only thing that worked for me was Nexium.

I take my Gleevec along with my Nexium and all my other meds with my breakfast.  If you prefer to take your medication at supper time, then you can still take your Prilosec in the morning with breakfast so you do not suffer all day long. I was going to switch to Prilosec due to price, but my doctor told me that the Nexium is the best choice.  It works great for me, and does not interfere with my other meds at all.

     You do need to get out, and get away from your everyday problems.  Stop and think about how you are PCRU.  The rest can be worked out.

     I am up all hours, and I check my e-mail even late at night.  I have told you that you can send me a e-mail anytime you need a friend to talk to.  I will always respond to you.  Please take me up on my offer.  You can do this, and start feeling better.

Take Care

Susan

[lala]

Hi, again....just so you know....today, I am very tired of having this disease AND knowing that the others around me are oblivious to it.  Their lives haven't changed.  Time to try to leave these feelings behind cuz they don't help my disease!!!!   Good thing I am going to a cook out at my best friend's, and she likes to wait on me!!!!!!  . So, Dee, we all struggle from time to time!!!!!!  Keep moving one step forward.......tomorrow will be a better day.  Lala

[Susan61]

Thats great Lala .  You have the right attitude.  Hope you have a great time  with your friend, and tomorrow is a new day.

[lala]

Susan, thanks for the note!

Hi, Dee, I am hoping you will post AND hoping TREY reads your post and comments.....wondering what he thinks of all your meds.......still hoping good days come your way soon.  Lala

[dee145]

Susan, I tried Zoloft for my migraines and they did nothing plus i felt sick on them.  I am very sensitive to side effects!!!!  That's why i was put on the Elavil and it worked for yrs till the old onc. cut me off of high dose abruptly and that's when this all started.  I was doing ok with the new "normal" before he stopped my Elavil.  No weight loss, no loss of appetite, no drop in blood pressure and was sleeping fine. I have had headaches for over 10 years now, had many tests and nothing found.  I started Gleevec in March of 2009 and was ok till either Nov. or Dec. when the onc. did that to me.  I am now back on the Elavil but can't get past 60mgs at bedtime, it helps me sleep.  I was given the Buspar to try for the depression during the day time.  And it's not addicting also.

And to those of you that think I sit on my a** all day dwelling on CML your wrong!!!!!  I have house chores to do, errands to run, scrapbooking and 1 friend that is off on medical leave i visit.  Most of my friends still work.

Anyone that knows me knows i have had issues since the 1st onc. I had.  I now have a wonderul onc. that is trying to correct the problems from 1st one.  My meds are the Gleevec 400mgs and Zofran 8mgs is for nausea cause i still can't take the Gleevec without the nausea pill.  I have tried and it comes back up.  The Elavil is to help control the headaches but I need to get to a higher dose and it helped me gain back the weight I lost from other dr..  Weight gain and increased appetitie is a side effect of the Elavil and it keeps my blood pressure up to normal otherwise it drops real low.  I DO NOT like taking the xanax but I don't like to shake inside either and I was having alot of issues with crying and the Buspar was given to me to take during the day and I am not crying as much.  Still have my moments like when people tell me it's all in my head and to go off my meds, that I don't need them.  I keep a journal on when i take my meds and for the month of June I took 10 oxycodone cause of headaches.  I try Advil 1st but if it doesn't work then I go to the oxycodone.  I have been keeping a journal so I know when I took last pill so i don't go over the limit i set for myself.

I walk around the block every evening if it's not to hot.  Today it's in the 90's so will have to wait and see.  I went to the pool on Sat. and we had a big cook out yesterday so I am not sitting on my a** eating bon bons all day thinking of CML.

I am sure their are people on this site that take the same amount of meds i do they just don't admit it.  If you can just take the Gleevec and have a normal life then "good for you" but I can't.  I can't run marathons like some do. i can barely walk the block, with the way my legs hurt.  Good for them!!!!  But everybody is different as my new onc. says.

I guess i bitched enough for now so I might write again I am not sure.

                                           Dee

Message was edited by: dee145

Message was edited by: dee145

[Marnie]

Hi, Dee. . .I hope it wasn't my comment that you took offense at.  I wasn't suggesting that you are the type of person who just sits at home and eats bon bons (though some days that doesn't sound like a bad thing to do ).  I just know that it really helps me to get out and do things, and so that's why I mentioned it.

Your post made it seem like you needed someone in your corner giving you some much-needed support.  You sounded frustrated and discouraged.  I responded so that you would know that there are people out here listening.

It sounds like you are doing all that you can and are working hard to figure out why you're having such a difficult time with side effects.  I wish you all the best.  Hopefully you and your onc will find what works best for you.

All the best, and keep on scrapbooking!  My sister does a lot of that, and I know that she really enjoys it as a hobby.

Marnie

[lala]

Hi......sorry if we made you feel under attack......that wasn't our intent at all....in fact, I cried when I read your posting.  My mom suffered from migraines, and I remember how she felt when they told her they were all in her head!!!!!  She finally found found relief....and I remember she took Elavil.  Many years later, she had essential tremors so she took Ativan.  I also remember being questioned about all her meds and we didn't appreciate it as we were just trying to find relief.   I also have a very different life than pre-cml.....I used to go 90miles an hour, all day, and that came to an abrupt stop.....now, I rest most of the time and do things a bit of the time!!!  I read some of the posts and wonder how they sound to the cmlers that are really struggling.  It is nice that some can continue living as before, but there are many that can't.   Sooooooo, I apologize if I said something to upset you.....Lala

[PhilB]

Hi Dee,

Sorry you are having such a bad time.  While Marnie's right that getting activre in the outdoors is one of the best things possible, it must be dreadfully frustrating for you to hear that if you can't do it because of your legs.  Could this be worth a try:http://www.lightfoot...rank_module.php?

Phil

PS if you're not eating those bon bons can I have them?

[Tedsey]

Dear Dee,

I am sorry you are feeling so lousy.  I came across this: http://www.webmd.com...l-tremor-basics.  It probably mentions what you already know, but there is a sentence that says ET and migraines could be related.

Hope things change quickly for the better,

Teds

[jrsboo]

Dear Dee,

Have CML sucks.  Wads.

There are those that can go on with life as usual by taking a pill.  I am not one of them.  You are not either.  That sucks even more.

Last week I had decided I didn't want to have leukemia anymore.  It is too hard. 

This week is better, for no apparent reason.

I don't know what will help you.  I am sending you warm fuzzy hugs that resound with empathy. 

You are not alone.

Caroline

[Susan61]

Hi Dee:  Nobody is trying to make you feel bad, and nobody is saying you just sit around all day.  We all have problems besides our CML.  I do not think anyone can say they do not have other issues in their lives to deal with.  As for me, besides my CML I have other medical problems to deal with also. Finances are a big thing with many of us trying to pay for our medications and keep our heads above water.  When we reach out to one another, it helps us deal with everything in  a better way.

We all get together on here to share and get and give support to one another for whatever we are going through .  That is all we were trying to do.

Its your choice if you want to post again.  Just know we are always here, so please do not take offense for any help  or comfort we were trying to give you.

Susan