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#1 pammartin

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Posted 28 October 2011 - 09:36 AM

Just got word from blood tests, finally the platelets are beginning to lower a bit. I have been on the 2000 mg of Hydrea for two days and the Sprycel 100 mg for nine days. Wednesday platelets were 1, 800,000. This morning they are 1,650,000. Any movement down is a positive, and I am waiting for call, but assume the plateletpheresis is off the table for now. The number they were looking at was 2 million as cut off, and I am starting to be well below that.  Monday I begin the Sprycel at 140 mg. can't wait for the additional side effects, (sarcasm at it's best).

White count is holding at 8, local oncologist believes I should have that checked over weekend, but will not order unless lead in Pittsburgh deems it necessary. I am the only patient they have now, or ever had on both Hydrea and Sprycel, not sure if that makes me special or weird.

Thanks for the support everyone! I appreciate all the answers and encouragement I continually receive.

Pam



#2 Guest_billronm_*

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Posted 28 October 2011 - 01:44 PM

Dear Pam,

  You are definitly special. What a relief, you had us all sitting on the edge of our seats! Do you always have that effect on people? It sounds like your docs know what thier doing. What do you do now get bloodwork every couple days. I assume you still have to drink lots of water and rest a lot. I think your stress level dropped quite a bit today so that will help you a lot I imagine, please don't do anything physical until all your doctors say it's okay. Don't split more than 1 cord of wood today.

   You have been on 100mg of S for almost 2 weeks now it takes longer than that for our bodies to adjust to these meds so don't blame every little thing on the S increase.My biggest and really only complaint is fatigue. You have already gone through the Sprycel headache which I think was the worst side effect I had. The headache comes back occasionally but I would take 2 liquid ibuprofin and it was gone in about 20 minutes. I don't take it often usually it's just a nagging little one that goes away quickly. I had one a couple days ago I can't remember when the last one was. I had it for over 2 hours and it was getting a bit worse so I took my 2 ibuprofin and it was gone in 15 minutes. I gotta get a life now I'm timing headaches? Did you see the reply I posted on luckys post yesterday that will give you a chuckle.Well you got away without having green stuff flowing through your veins. Just think if you grow spock ears you can wear all your earrings at the same time. And when you put your hair behind your ears it will stay there.   Congratulations you jumped a big hurdle.  Billie



#3 SB3

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Posted 28 October 2011 - 03:24 PM

I'm so sorry you've had such a terrible time but am glad to hear that there has been some improvement. I believe all CML patients are special! I'll keep my fingers crossed that things continue to improve for you over the weekend.



#4 pammartin

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Posted 28 October 2011 - 06:43 PM

Thank you for your kind words and support.  We are all special, aren't we?  Although I fear my family would just deem me weird, (this of course is because they have first hand experience living with me).  Thanks for the crossed fingers, they are working, I go for retesting on Monday, am sure those fingers will bring me greater results.

I did choose to take the remaining Sprycel at 100mg before beginning the 140 mg dosage, the meds are so expensive, I hate to waste the four pills I have left.  The oncologist suggested I begin today with the higher dosage but did not beat me up too much because I chose to wait.

Have a great weekend, and I will make an effort to explain to my family I am not weird, I am special.

Take care

Pam



#5 pammartin

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Posted 28 October 2011 - 07:11 PM

Hi Billie,

Yes, the people I am around usually do sit on the edge of their seats, but that is because they are poised to run if I get into trouble, or cause a situation!   Yep, you guessed it, bloodwork every three days, first thing in the morn, so if I have to make the trek to Pitt, I am able to get there asap.  I have been pushing the water again, so far it has not caused the side effect it did that first week.  No need to visit the specialist to clean out the colon for me for a while!  As to working, I have a hard time sitting still, and oncologist gave the ok to shovel all the limestone I want, as long as I stay away from over doing it and those dead leaves where ticks reside.

Stress levels, they are way down, (without the Xanax, that's amazing).  I had some awesome news just a while ago, I am almost ashamed to share, because so many struggle with co-pays and medicine costs, but insurance approved the Sprycel, and my co-pay per month is less than a nice dinner out.  That is truly a blessing, this past week we have spoke of selling the car, downgrading everything we consider luxury (Dish, mobile phones, and such) to meet possible co-pays.  Instead we stay home a few times more a month and the cost will be covered.  That still blows my mind and I have known for a few hours now, still in euphoria.  Talk about celebrating!

I do understand what you are explaining with the headaches, although I am very new, I have similiar pain.  The great thing is even if it is fairly intense, (which may still subside), it does not last long, many times I do not reach for the Tylenol bottle, by the time it would work, the headache is already passed.  Nagging is a perfect word, that is exactly what it is.

You have a great life, and even if you are counting/timing headaches, you are providing the rest of us with detailed information we can refer too when needed.  I did see your post, I know reading something you wrote will not only provide me with a smile, I usually get a belly laugh out of your post.

Funny, I always wanted Spock ears, I loved Star Trek, and although the reruns are cheesy, they are some of my favorites, although I think .  Thanks for helping me jump really high this week, you helped me work through a ton of stumbles.

Pam



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Posted 28 October 2011 - 09:30 PM

Dear Pam Holy Crap Yippee congratulations.

   I was just thinking about you a short while ago. Everything you are going through, then The Ins is giving you a hard time. A lot of people do have trouble getting their meds. I feel just like you do. Almost guilty because so far my ins hasn't given me any problems but that could change daily. I still hold my breath when I get mail from them. Everybody on this site is always so happy when something good happens to one of us. So enjoy your special blessing and share the news with us. You wouldn't believe what Marmie went through because the school board changed to another co. Ask her some time it's to confusing to me. But she ran around all summer and made sure all her paperwork was in order,had to see a new mean onc because of the hmo.Then January 1  she can go on her husbands ins and back to the onc she likes. It ruined her whole summer.if that wasn't bad enough her new ins. co wouldn't pay her bill. It's getting straightened out now. And I'm the one with high bp.

   Just think about where you were 2 weeks ago and now you're on cloud nine. You'll have ups and downs off and on but we all do. I blame it on my hormones flaking. I got some very bad news about my very best friend last week we have been joined at the hip for at least 40 years. No it's not C but it's kind of a day to day thing right now  So I've been pretty down, and have to keep a close watch on the old bp. It's still jumping all over the place so I have to stay calm so it doesn't go over 200 again. I know nothing about bp except I'm on 2 kinds and I have to take 3 a day. Like all the other meds I'm on that cause drowsiness  Later I'll tell you about my very first date at the age of 16 my date opened my door and I stepped out and slipped and fell right under his car. He had a big oldsmobile which was high off the ground so I had plenty of room to fall. I begged God to take me when I was still under the car he wouldn't do it. The guy dumped me for a cowgirl. True Story. So that ended my riding days. I gotta go and put wrinkle cream on my parenthsis and pucker up.           You cheered me up today           Billie



#7 pammartin

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Posted 28 October 2011 - 10:22 PM

Thanks Billie, as always you made me laugh.  First dates?  In Indiana PA. at Pizza Hut, one of those pre-dinosaur shirts that had the scoop neck and then the piece of material that buttoned across the neck like a noose.  Bright yellow, thought I was a zillion bucks. (emphisis on 'thought')

Yeah, might have been for about fifteen minutes.  Oh so trying to show the best of my manners, I usually stuck half the piece in my mouth already eyeing up the next one with the most cheese, instead, a small nibble on the very point at the end.  Anyone who knows Pizza Hut pizzas from 30+ odd years back, remember they are not the pizza of today.  they were slim, full of grease, and had a mound of cheese on them from top to bottom.  One little nibble, and then I went to put the piece back on the plate to actually show my date I did know how to chew with my teeth instead of swallowing semi whole with only a few chews.....the huge gob of cheese sitting on the 'oh so innocent' piece of pizza slowly slid off and landed smack dab in the middle of my bare chest, between the scoop neckline and the dog collar part of the shirt.  Remember, bright yellow..........today I don't think even a Tide stain stick could have gotten me out of that one.  Alas, we were to never date again, I was doomed to be weird from the start.  Now my husband buys me Tide stain sticks in three packs and places them stragically around the house and vehicles, his only comment is, 'I have watched you eat'.  A few months ago I was traveling with the school band to Cedar Point, I had my overnight packed, and laying on top were just a few items I had to stash in the bag.  One was a mini stain stick.  He picked it up, looking at is sadly, and asked, "What are you going to do the rest of the day?"  He went to the cupboard and brought out a full size one, stating I could perhaps use the 'tiny version' for a meal at home.  I tried to be offended, but you know, I just couldn't.  There is a reason why I have bleach products and stain removal liquids above my washer, and for the most part it is my clothes that have to be doctored.  <sigh>  I am a slob I guess, poster child for Tide stain stick, which they would call, I need a job to keep me busy and out of trouble!

few things, being a fellow Pennsylvanian

facebook     plmartin@windstream.net    look for picture of my son playing a base drum and looking like a thunder cloud because I am taking his picture

other thing, email addy above if you are so inclined. 

Hormones, oh, I got em, and they are cooking.  Just ask my son or husband.  I am telling you, giving me back the Xanax probably saved the local law enforcement from a brawl the next time my son leaves his dirty underwear in the bathroom and not far from my toothbrush.  I am going to wrap my brush in a plastic bubble, only to be broken when I use it.  He is most likely secretively scrubbing the toilet or bathtub with it because I made him clean the bathroom at bed time.  If I taste bathroom cleaner on my toothbrush, heads are gonna roll!  blood pressure!  I did not have that unitl I turned 45, then slowly it creeped up like some evil being and took over my system.  Mine used to be so low they would take it at least twice, asking me if I felt ok.  well yea, I do, why?  I didn't notice anything, today if was a bit low, but then I messed up times and when I was supposed to take it, I didnt have time for that, was looking for new carpet, eating Chinese (yep finally got to Chinese), and then home to shove some chemo pills down the gullet.  if we switch up our readings a bit, mine would be higher and yours would be lower so we both win! 

I am sorry for your friend, my thoughts and prayers go out to the person, and to you, someone who cares, keep that blood pressure in check so we may enjoy your company.  God Bless

Everyone here has been so supportive, I happened upon this site, but holy crap, I am sure glad I did.  Good, bad, or ugly, there are people here who care and are not afraid to show it, THAT is becoming a thing of the past as the generations go.

I am off to bed, I think the ambien is kicking in, or is another weird happening where I see two screeens, either way better lady down before I fall down, make lots of noise, wait for someone to rescue me, and in the end realize I am alone and everyone else just thought it was me doing who knows what in the kitchen, and they all go back to sleep!

Take care



#8 random

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Posted 29 October 2011 - 01:32 AM

Hi Pam,

I'm very glad that things are working for you. I'm sure everything is gonna be fine

Just take care.

<R>



#9 cousineg

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Posted 29 October 2011 - 09:25 AM

Hi Pam,

            I am a French Canadian  from Montreal. In August 2004, the white cells and platelets started to increase. I took 3 pills of Hydrea. In December 2004, the platelets increased to 1,400,000 I took  6 pills of Hydrea. In January 2005, I started to take Agrylin. The platelets came down. In June 2005, I took 6 pills of Hydrea, 3 pills of Agrylin, 1 pill of Coumadin, 1 pill of Aspirin, 1 pill of Allopurinol.....

The doctor thought that I had ET (Essential  thrombocythemia).   But the test PCR came positive in June 2005 and  I added 400 mg of Gleevec with the other pills. In 3 weeks I was in hematologic remission. After, I stopped to take  all the others pills. I was PCRU in August 2008. In September 2011, I lost my CMR. The PCR is now -log 2.38. I wait for the result of a test for mutation.  I didn't pass the test JAK2 in August 2004.  I saw somewhere when you start to take Hydrea, the test JAK2 become negative.  In June 2003, I had atrial fibrillation and since that time, I take Coumadin.

Anagrelide (Agrylin/Xagrid, Shire) is a drug used for the treatment of essential thrombocytosis (ET; essential thrombocythemia), or overproduction of blood platelets. It also has been used in the treatment of chronic myeloid leukemia.

       

             I hope that you will be in hematolgic remission soon.

Sincerely,

            Gilles



#10 pammartin

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Posted 29 October 2011 - 07:59 PM

Gilles,

Thanks for the information!  I have not heard of this drug, I will be asking my oncologist about the possibiliy on Monday.  The doctors are finding out fast I have many questions and am not afraid to ask them.  They probably are begining to be very sorry they told me to call them anytime.

I believe yours might be one of the highest platelet counts I have noticed on the posts here, I am still working through the history though.

I see it took a while for your platelets to stabilize, although I am sure it was rough, it is comforting for someone like me who is experiencing the same history.

Good luck with your continued success.

God Bless

Pam






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