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#1 LoriM58

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Posted 01 March 2011 - 09:15 PM

I was diagnosed Feb 4th after routine bw with high WBC (102). They first thought it was Acute Leukemia, and I felt very relieved when they said it wasn't.    Started on Hydroxyurea to bring WBC down until I started Sprycel.   Ins didnt cover Sprycel, so Dr changed to Gleevec.   Still having problems because of cap on what my ins will pay.   As of today, still no meds. (hopefully by first part of next week)  Was doing Ok until a cpl days ago when I started getting more severe bone pain and extreme fatigue.  (I NEVER nap!)   Had bw done on the 28th and WBC is going back up so Dr put me back on Hydroxyurea for a few days.   More bw on Fri.   Reality is setting in - I am sick.   Prior to this, I was feeling pretty good and I guess didn't grasp what I was told at diagnosis

I am so glad I found this Discussion Board because I have read so many positive, uplifting comments. (along with some of the not so pleasant side effects I may experience)  So much to learn.   Really trying to take one day at a time, and just put one foot in front of the other.  Praying for strength to face this.   Since I live alone, I am sure this site (and you all) will be a great source of comfort and wisdom for me.   By what I have seen, I couldn't ask for better ones to take this journey with.

Lori



#2 Marnie

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Posted 01 March 2011 - 09:31 PM

Hey, Lori. . .

Welcome to the club!!  Not a particularly great club to be a member of. . .but the members are great people!

Best of luck as you adjust.  Things will work out, but it sure is stressful as you get through the first few months with diagnosis, meds, insurance red tape, etc.

Two pieces of advice I would offer:

1)  Read thru the info that Trey has put together on here.  There's lots of info out there, but much of it is outdated and scary.  Up-to-date information is much more positive.  The more well-educated you are about cml, the more easily you can monitor your own progress and make smart choices with your doctor.

2)  Get copies of all lab reports, doc reports, etc.  Keep track of your own information so that you can become your own advocate.

Sorry to welcome you to the group, but glad to have you as a new friend!

Marnie



#3 LoriM58

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Posted 01 March 2011 - 09:49 PM

Thank you Marnie.   I have gone to Trey's CML blogspot - a great help!!!   Haven't visited ALL of the links he has yet, but intend to!     Hoping that someday, I will also be encouragement to someone. 



#4 cometbro

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Posted 01 March 2011 - 11:34 PM

Hey Lori, I too didn't know if it was Acute or not for a few days at first.  I had an Onc who was very old and not too familiar with this.  It took him and his team about 3 days with me in the hospital to figure out what it was.  Boy, I went through some heavy stuff !  I was mentally preparing to go already.  When the doctors would come in and take more blood every few hours I would ask them what they thought and they would say its not looking good, we can only hope you'll be fine.  My Oncologist even told me "don't worry, you could still live a long time, about 5-8 more years".  YES!, he literally told me that (i'm 30 by the way).  This was even after he figured out I had CML as opposed to something Acute.  None of these doctors knew anything about CML and the latest therapies.

Think what I had to tell my mother, that fateful Friday, when I came out of work to see the Oncologist for my appointment, which by the way, I had to get a referral from my PCP to see him, who originally detected my WBC at 160k (My PCP looked so worried and told me that he believes I have cancer.  He also said he would fax the referral but it took him about 8 days to get that done).  So I meet this Oncologist and he tells me that he needs me to stay overnight for a few days because it could be Acute and I could die within a few days to weeks (think about that shock to the system).  I stay all weekend and I call my mother to let her know they've admitted me.  Of course, she's all worried so I just make up something general and tell her that they think I have some "blood disorder" and that my WBC goes up real high.  I didn't want to use the word "cancer".  Actually, I refuse to think of it that way even now.  Either way, she gets so worried and starts making me soups and bringing fruits, etc..  I then had to do heavy research on my own and finally found a "true" specialist online.  I managed to find a different CML forum and post my story there.  You can tell the initial shock I was in with my very long post of questions.  Read it and you'll see how much stuff was going through my head at that time.  I'm very glad for these forums since the people on it can definitely give you piece of mind knowing that you can do well and live long with this.

http://www.dailystre...ml-lot-thoughts

It took about 3 1/2 weeks for me to see a "true" specialist in CML and for me to hear the words from his mouth saying "don't worry, you'll be fine".  I really thought I was gonna go.  I was reading CML on Wikipedia, (that reeeaaaally needs to be updated) and that only made it worse !  I found this great forum after that and things have looked much better since then.

Those 3 1/2 weeks I was walking around like a zombie who thought his time was up.  I would hide from everybody and not talk much.  I'd only wished I found a better doctor beforehand but it seems everyone I encountered did not know much about this, then reading stuff from the internet made it worse.

Welcome, and as a reminder, you'll be fine.



#5 Tedsey

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Posted 01 March 2011 - 11:51 PM

I think the hardest time is the first few months after diagnosis.  Like you, I never felt sick, never had nightsweats, bruising, fatigue, etc.  But for 3 years I had 20+ pound weightloss that no doctor could explain.  All bloodwork came out normal.  Ironically, the disease finally presented itself at my yearly check up Nov 2009.  I asked my doctor to fit me in early because part of my abdomen swelled up overnight.  It had been sore for about a week.  I thought I had a hernia (it was my spleen working overtime)!  Anyway, my WBC was 180+ at dx!  What a shock it was.  I have to admit, over a year later, I hardly think about dying young.  Not to say the CML is not a monkey on my back.  It is a sneaky bastard.  And it sometimes makes me sad.  But life does get back to a new normal and it goes on.  I hope your journey is smooth and the drugs work wonders for you.  Oh yeah, little side-effects to you too!  I am on Sprycel and I don't feel like I am sick at all.  Please take care.  Here if you ever need to talk.

Tedsey  



#6 LoriM58

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Posted 02 March 2011 - 06:24 AM

wow comet!    I cant even imagine the anguish you went thru!   My PCP is the one that said she thought it was Acute Leukemia. She said that I needed to repeat the bw and IF it confirmed her suspicions, I would be in the hospital that afternoon, starting chemo.  Tears galore!!   Had the bw, then appt with Onc 3 hrs later.  My onc is absolutely wonderful.    It was only about 6 hrs from that initial shock until they did my BMB.  I went into that appt thinking I would be admitted.    My onc is only 1 yr older than my oldest son (kinda scary), but she is VERY up on all of the latest info.   And she is very comforting.   Funny how I associate age with knowledge.   Seems that with all of the advances of the meds in the past few years, maybe youth is on our side!!  

Thank you for your thoughts, comments and reassurance.   We will be fine! 

Lori



#7 LoriM58

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Posted 02 March 2011 - 06:32 AM

Tedsey - I will look forward to the "new normal".   thank you for your support.   Hopefully will have few side effects.   I tolerate meds well and have a pretty high threshold of pain. I keep reminding myself of the millions of people who are sicker than I am.   I have a loving, supportive family and friends.  I will adjust to what lies ahead.  I have faith and know that God will give me strength and guidance to get thru this - one day at a time.   Have a great day, and again, thanks for being there. 

Lori



#8 Trey

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Posted 02 March 2011 - 10:31 AM

Lori,

Welcome.  We all started where you are now.  Although we tend to focus on the remaining issues such as drug side effects, overall it gets much better.

Cometbro,

Thanks for reminding about the Wikipedia article about CML.  It was pretty bad.  I made updates to it today.



#9 CDW

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Posted 02 March 2011 - 12:05 PM

Trey, I've not looked at your wiki update, but the stroy cometbro told struck many chords. my onc is good and super positive, but, after initial diagnosis i did the "normal" thing and looked at the internet. BIIIIIG mistake! wikipedia gave some grave stats on prognosis (these read in isolation do not paint the full picture about CML, which I now know is actually quite positive). i also looked at a website of the local cancer care center and, now i'm more educted, i realize their website should be taken down, archived to disk and set fire to in the parking lot.

Newbie, be selective on what you read. I am fortunate  as my onc often gives me the latest articles and updates when i see her. There are so many positive updates on here and stories that you will be able to relate to.

chris



#10 Cathy

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Posted 02 March 2011 - 02:33 PM

Welcome Newbie, sorry you had to join our group of friends. But its a great group and you will keep well informed and have a place to ask questions 24/7 its a great site.

Take care!

Cathy 


Cathy

 

DX 5-2010  Started normal hydra then Gleevec for 9 months stopped working

Tasigna after 5 pills pancreatis  numbers jumped up quickly

Started Sprycel 100, 8-2010  for a 3 years went down to 50 mg numbers at one point really jumped up quickly

currently on 70 mg for last 2-3 years trying to get onc to reduce dose Numbers never stabilize never MMR till 4-2017 bearly and jump up and down in and out of MMR stayed MMR for 3 months then

After 6 years on sprycel fluid on both lungs, drained still have some fluid on lungs, and currently off drug 4 months now

numbers lower then ever go figure I've never been this low of a number 

last 2 tests .0686 and .0181 !!

 


#11 SunNsand

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Posted 02 March 2011 - 02:33 PM

Lori -

    I wanted to say welcome and how awful that must of been worrying about AML. I was fortunate to hear my diagnosis after they were sure what it was. I found out later by looking at my copies of my medical records they also thought I had AML at first but they never mentioned it to me. I'm also glad you have a Onc you like and trust, that is so important.

SunNsand



#12 LoriM58

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Posted 02 March 2011 - 05:38 PM

thanks all for the welcome and words of wisdom.   I got a call this morning that my meds are being overnighted and will be here tomorrow.   Will be traveling the road to wellness soon!   I have already adjusted my diet (low sodium) in anticipation of the edema.   Have a eliptical also on it's way so I can keep moving even when I don't want to leave the house (let's see how that works!!)    I hope to become an active, contributing member of your group.   (not just always seeking answers)   But already I feel a great comfort than when the questions arise, I have supportive, knowledgable people to turn to.  Have a great nite all!!

Lori



#13 cousineg

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Posted 02 March 2011 - 07:20 PM

Hi Lori,

     I suppose that you love painting. Take a break of reading medical topics and

go to that link: CMLer's portofolio

     But If you like more music, then go to:

                    The march toward healing

                    Too much angels  in heaven!

                    The battle for healing

       

Welcome to our group

Gilles



#14 Guest_billronm_*

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Posted 02 March 2011 - 10:39 PM

Dear Gilles

  You never cease to amaze me! I haven't got to the portfolio yet, but the music is wonderful. I have to learn how to download from my computer.Thank you for reminding us what beauty there is in the world, And we will be enjoying it for a long time.

                                                                       Yours Truly  Billie



#15 cometbro

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Posted 02 March 2011 - 10:56 PM

Trey, thanks for updating it.  Definitely more optimistic.  Like Chris said, the prognosis was giving some grave stats and that's what I was concentrating on when looking at the article.  Its funny that Wikipedia is usually one of our first sources of information these days, and we should know better than to take it literally because things change so quickly, at least in the medical field, but we can't help it.  Not to mention that many other websites are still out of date, so that was only supporting the negative cause.  This will definitely help a newbie that happens to bump into that site before this one.

Lori, did your doctor mention Tasigna also?  I'm not sure how much more expensive it is in comparison to Gleevec, but that is another option down the line.  It is also supposedly used as another first line treatment these days.  It seems many people on this message board still use Gleevec and it is fine, but just making sure you know its out there as another option.



#16 Susan61

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Posted 02 March 2011 - 11:42 PM

Hi Lori:  Let me say Welcome to you also.  You got a lot of feedback on what to expect and what people have gone through.  It is a little rough in the beginning, and it does get better.  Not saying you might not have side effects along the way, as I just started my 13th year in Dec. with CML and still get side effects.

Just keep in mind that you can Live With CML, and its not like it was years ago.  Nobody wants to get Leukemia, but anyone getting it now is going to do much better with all that is known now about treating it.  When I was diagnosed in 1998, it was different.  I had to give myself shots everyday, and they made me very sick where I had to stop working and felt like I had the flu 7 days a week.

     Just ask us anything at any time.  If we cannot answer something, we always have Trey who comes through with a good explanation.

     Everyone reacts differently to whatever drug they are taking.  Your just starting to learn all of  this.  Take one day at a time.  Don"t try to squeeze too much into your brain at once.  I am still learning something new everyday.

Susan



#17 Guest_billronm_*

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Posted 03 March 2011 - 12:43 AM

Dear Lori,

I wish I didn,t have to say this but welcome to our group. This is such a wonderful way to help us cope with our cml. I haven't been on this site long,but there are so many wonderful knowledgeable people they immediately helped put my mind at ease.

You mentioned that your ins. is giving you a hard time. The day of my dx I was gived a script for Gleevac then I came home Hubby went to get it filled.Luckily they didn't have it in stock . When he came home he said G was $3,000 a mo. and that was 3 years ago.I called the cancer center I went to and told them about the script. Nobody told us anything about how to get this medicine. Aparently they have social workers there and they call the ins. co. There is separate divisions of our medical prescription plan our drugs are covered under Speciately Meds. I never heard of that. Every time I called our pres. co. It was a nightmare they always screwed up something on my scripts. One time they had me listed as change of address in Florida. I live along Lake Erie. And you can't talk to just one person until it gets figured out.You always get someone else when you call back.I don't think they know about the speciately med div. I suggest you call the nearest cancer center and tell them what is going on. I hope and pray you get a break. I go to the regional cancer center in Erie Pa. If you don't have one nearby call your onc.. If you don't have any luck, call the Cancer Center where I go  It's Regional Cancer Center 2500 west 12th St. Erie Pa. 1-814-838-9000. The social worker there is Ann Marie Cronk  1-814-836-2618  If you don't get anywhere with them. Call the American Cancer Society 1-888-227-5445. Also The Leukemia Lymphoma Society L3@lls.org. If you can get away without paying for anything maybe you could contact these places first I hope and pray one of them can help you. I get so angry about people who won't be upfront with you. Just like me and that speciality med prog.There are people who buy their meds right from the company where they make them also.It took me 3 years to collect this info. I'm a fanatic I see a no I write it down (like governors hotline) etc.My family and friends make fun of me but I'm the first one they call when they need to contact someone. I didn't mean for this to be so long but I wanted to give you a heads up on what may be available to you. I'm don't know that much about cml but I'm learning. I hope you're nightmare is over. It's bad enough being diagnosed with cml but to go through all that must have been horrible.

                                              Best of luck to you Billie



#18 LoriM58

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Posted 03 March 2011 - 06:34 AM

Gilles - Thank you for the links, I had found the pics and they are beautiful.  As for the songs, also beautiful.   Wish I knew what they were singing!   lol    but very nice, thank you!

cometbro - my Dr did discuss 2 other meds other than Gleevec.  Sprycel and I don't remember the other name but would prbly be Tasigna.  She originally wanted me to start on Sprycel, but it wasn't covered by my ins.   At the time I checked, they told me Gleevec WAS covered with a co-pay of $25.   When I went to pick it up, the pharmacist told me I needed prior auth.   And that started the whole mess.   Found out my script plan has a $2000/yr cap on scripts so basically I have NO insurance.   The patient advocate in the Cancer Dept at the hospital then started working with Novartis.  I get the script today and have no idea the cost to me (hopefully not alot).  But whatever it is, I will figure it out.   Dr told me we would try this and see how I respond, then change if we need to.   Thanks for bringing it up though.

Susan61 - Wow 13 yrs!!   that in itself is very inspiring!   Can't imagine the shot thing, but I guess we do what we need to do right?   So glad to hear how it used to be - makes it easier to see how far treatment has come!   Good luck and thanks for brightening my day!!

Billie - Thank you so much for all of the info!   I too write down alot of them when I hear diff things on radio or TV.  And I will file these away for future use.  My nephew lives in Erie also. He and his family just built a new home.   Will be going up later this month I think for a birthday party.   Is a 4+ hr drive, so will have to wait and see.   I have had a pretty high tolerance for meds in the past, with no real side effects.  This one is prbly stronger than any I have taken in the past, but I am praying for the same tolerance.   God has blessed me with good health prior to this.  And for that I am grateful.    

I believe this has come into my life to help me grow in some way(s).  And I can tell already that it has put me in contact with alot of good people thru this site.   Looking forward to a LONG journey with all of you.  God bless and have a great day!!

Lori






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