35 replies to this topic

[dcchicago]

My diagnosis of CML was confirmed earlier this week.  The last two weeks were quite overwhelming, from receiving the first phone call from my primary doctor notifying me of my high wbc count, to scheduling to see a hematologist and waiting for test results.  I spent a few sleepless nights worrying about the uncertainty, but I also spent a lot of time reading and learning about CML.  Anxiety definitely kicked in during this time.  However, soon after I got the confirmation, I quickly came to terms with it and I'm ready to deal with problem.

I'm glad that I found an active forum here with a lot of supportive and informative postings.  It is encouraging to read about the progress some of you are making.  There are also a lot of suggestions on dealing with side effects.

I am ready to fight this disease.  I'm going to start with 400 mg Gleevec soon.  I'm currently annoyed that my insurance company is taking its time to approve my prescription.  I was hoping to let my body adjust to the medication during my time off from work during Christmas week.  However, my prescription has been sitting there for prior authorization since Wednesday.  I talked to the insurance company and they said it may still take days to approve it.  Does it typically take long to approve this?

Currently, it is the night sweat that is keeping me up at night.  Do you guys experienced it before or during treatment?

- DC from Chicago

[Trey]

Your experiences sound like what many of us went through.  The Gleevec prescription approval should be fairly routine at this point, but all companies are different.  The night sweats were a big issue for me before the WBC dropped to normal, then only a minimal issue since that time.  Before drug therapy the issue is the blood being too thick.  But some have continued sweats. 

You may want to read this intro:

http://community.lls.org/docs/DOC-1271

[tazdad08]

Good luck DC. Attitude is a major factor in dealing with this stuff. We all have our ups and downs with the side effects. I have only been dealing with this for a little over two years now. In my opinion, its not so much the cancer as it is the side effects since some of the meds were invented. I have learned that you have to speak up about the side effects. When I couldnt get any relief, I finally opted to start seeing specialists for what ever part of my body that ails me. It seems a bit ridiculous, but I have since had a few MRI's and am not getting help with the joint/nerve pains. I have talked to a few that have been lucky enough to have zero side effects also. I guess it just depends on how your body processes the meds

[LivingWellWithCML]

I feel like I'm reading a post from my OWN journey ... very similar experience, @dcchicago; especially the anxiety and uncertainty bit.  My 24/7 worry after diagnosis was arguably doing more damage to me than CML was!  Reading through this board is definitely one way to settle down ... you will find that the vast majority of us are able to continue living active & normal lives with the miracle of TKI therapies - really amazing stuff.

I was also having those weird night sweats that started a couple of months before diagnosis, but they will settle down as Gleevec starts working its magic.  I have been on Gleevec 400mg for almost three years, and every once in a while I will have a night sweat "lite" for a few nights in a row (presumably a side effect from Gleevec?), but then it vanishes.  I try to keep up a rigorous endurance athletic routine outside of work, so sometimes a long bike ride or run will really wear my body out and result in some mild sweats that night.  Completely tolerable.

The initial prescription approval process can be a bit of a pain, because insurance wants to review the results of your bone marrow biopsy, verify that it's Ph+ CML (like the hematologist doesn't already know this?), etc.  It took me a couple of weeks to get through all of the red tape, and I practically knocked the UPS delivery guy on his arse the moment the first bottle arrived at my front door.

Is your hematologist recommending "watch and wait" until Gleevec arrives?  My hematologist started me on Hydroxurea pills temporarily to knock down my WBC while we were waiting on Gleevec, but since Hydro is actual chemotherapy, I wish I had refused it and stayed away from it.  I am confident I would've survived an extra two weeks waiting for Gleevec, while not subjecting my body to chemotherapy.  That said, I have responded very well to treatment, only have mild side effects, and my blood counts are all essentially in the normal range.  I'm guessing that the short-term Hydro regimen didn't do any lasting damage that I can tell.  At diagnosis, my WBC was 155,000.

Stay engaged with this group as you start your journey ... this is an incredible community that has given me much peace over the past few years, and I'm sure it will serve the same for you.

Dan

[dcchicago]

Thank you for all your replies.  It does help a lot to know I'm not fighting this disease alone.

Dan, I have read several of your postings.  I know you are quite an athlete.  Glad to hear from a real example of active normal life despite having CML.  I used to work out about 4-5 times a week.  I cut it down quite a bit in the last two weeks (especially the weights), doubting whether I should be working my body too hard at this point.  I did just come back from 30 mins of cardio though.  Probably due to my reducing RBC count, exercises are getting harder.  I do want to get back to my workout routine slowly once treatment starts.

I was lucky in the sense that I found out about my condition relatively early.  I went for a regular checkup without much symptoms.  The couple minor things that I felt differently before the checkup was it took me a little longer to run 3 miles, and I sometimes looked pale in the mirror.  I freaked out when my Dr. called me about my first report of WBC at 24k. But the count has been going up quite quickly in the last two weeks, 24k, 31k, 35k, 50k.  I know my count is relatively low compared to most of you guys' during diagnosis.  Probably Hydroxurea is not necessary at this level.  Regardless, I want to start treatment before my count climbs too high though.  And my night sweat seems to directly proportion to my WBC count. 

The worst thing about the insurance is that I know the pills are sitting on the shelf in the pharmacy couple blocks away from my house.  I would be able to see the bottle from the pharmacy counter.  How can it be so close but yet days away ?

DC

[mariebow]

Had the night sweats,headaches and nosebleeds.  Very tired,joint problems.

[Susan61]

Hi DC:  I do not know what insurance you have, but they can be very difficult to deal with at times.  Glad you joined us, because there is always somebody who can relate to how your feeling mentally or physically.

You will have side effects like most of us, but everyone handles their side effects differently.  I have been on Gleevec for 13 years, and have had CML for 15 years.  I hope that helps you with your anxiety.  We can live with CML, even if some days are rough.  Keep in mind that so much has been learned about the treatment of CML, that was not here back in 1998 when I was diagnosed.  I was giving myself shots everyday with Interferon and Ara-C, which was  the only thing available to me back in 1998.  When I had to stop due to liver issues, I was on the Hydroxurea for 9 months until I could get into the clinical trial for Gleevec.  Your doctor should give you a script for it, if you have to wait for the Gleevec.

I am sure you will get approved soon.

Susan

[LivingWellWithCML]

A slower running pace was what prompted me to see my doc and get the fateful bloodwork done.  Lower RBC and Hemoglobin were the cause, but they recovered very quickly once I started on Gleevec - my running sped up dramatically in just a few weeks!  I imagine you will see the same from your workouts.

[chriskuo]

Some times it takes some hard pushing from your doctor's office to  expedite the prior authorization.  My experience is that the doctors who  specialize in CML have staff who are quite good at pulling the right strings.

[dcchicago]

Thanks Susan.  I does help calm my nerves hearing more success stories.

I already have the prescription for Gleevec.  The pharmacy can't fill it for me because of pending insurance approval.  I will check with both my doc office and the insurance to see what I can do.  Being around holiday season slows things down too.

[IGotCML]

I had my share of anxiety, sleepless nights and uncertainty when I was diagnosed 1 year ago.  My high WBC count caused night sweats that started 2 weeks before I went to see a doctor and ultimately received the CML diagnosis.  I also had insurance problems when I was diagnosed and went on Hydroxurea for a few weeks before I started on Tasigna.  I needed Hydroxurea as my WBC was in the high 60s and climbing, similar to your situation, but my spleen was also very large and the Hydroxurea lowered my WBC and also reduced the size of my spleen until I got the Tasigna.  When my blood counts normalized, the night sweats stopped.

I think you are correct in reducing your exercise until your blood counts get back to normal.  The lower RBC is causing your exercises to be more difficult.  I have been lifting weights regularly for 30 years before CML and the amount I lifted dropped noticeably in the month before my diagnosis.  I had a busy and erratic work schedule then and I initially attributed that to my reduced ability to lift, when in fact it was CML.

[dcchicago]

My prescription has been sitting at the pharmacy since 12/18 pending insurance prior authorization.  I have been calling the insurance to ask for status every day.  Today, BCBS rejected Gleevec as a valid treatment for my PH+ CML case.  Now it is up to my Dr to appeal.  It has been a very stressful and frustrating time.  I was up beat to get treatment started, but I definitely under estimated how difficult to beg insurance for mercy.

With another holiday coming up, it may drag on another week before I can get a hold of the treatment I deserve.  I worry if these extra two weeks make a different in my response to treatment.

[Badger]

Susan I'm curious what side effects you're dealing with after thirteen years. I'm 4-1/2 years in and don't have many other than a slight rash.

[Happycat]

DC, so sorry you have to join us here, but welcome to you.  I would ask the insurance company on what basis the Gleevec was denied.  It seems a bit odd to me, unless they are wanting you to take a generic version, which I don't think is even available in the US yet.  So it's odd to me. 

Traci

[Tedsey]

Keep posting about your progress.  This is a good place with the best of people.  There is always an ear to hear your story or a shoulder to cry on.  I remember how terrified I was (4 years ago this Thanksgiving).  I had a baby and a very young toddler.  I thought I would never see them grow up.  Lest a few large and unusual bumps in road to recovery, my health has been very good.  I cannot quite pin down what is a side effect and what is just what everyone else is experiencing at my age.  I think I may make it to old age if something else doesn't get to me first.  You will get used to things.  And there is much realistic hope to be had following your diagnosis.  Don't fight too hard.  No need to take energy away from healing.  Just take your pill every day (don't forget!).  One thing that is different in our case, is that we are responsible for our "treatment" (the pill).  It usually works well, or, at least, one of them will.  Best of luck to you.  I really mean it.  Take good care of yourself.  It is easy to go to the dark place.  Try very hard not to go there.  What's the point anyway?  But easier said than done.  I wish I had known about this board sooner.  I suffered a lot at the hands of very inexperienced professionals.  I advise that you stay on top of everything.  It may seem like a lot at first, but it will become routine and pretty simple.   

Tedsey

P.S. Also in Chi-town

[Tedsey]

P.S.  Don't worry so much now about "side effects".  There is a ton to process at this point.  You may be one of the lucky ones and not notice anything different.  You may even feel better.  As far as I can tell, although we all have things in common, your experience with the drug will play out for you as it will.  You can only wait and see (hardest part about this cruddy disease).  Just focus on living and getting on with your life.  Sorry.  Do what what you need to do.  I just wish I had someone badgering me away from the realm of terror that comes with a leukemia dx.  I was drowning.

Tedsey

[GerryL]

Hi Tedsey,

I think Trey was involved in trying to badger you away from the realm of terror you felt, probably the Texan in him trying to round you up.

I'd like to think you might write a book one day of your journey, I always found your contributions to the forum quite eloquent.

[LivingWellWithCML]

That denial from BCBS makes no sense.  Clearly Gleevec is a valid first-line therapy for CML.  I am sure your doc will straighten in out shortly...does your doc know why they denied it?

[Susan61]

Hi:  I still get a lot of hand and foot spasms.  I also get the edema in the eyes, and have to apply icepacks sometimes.

My joint pain I think is just bad arthritis, and I have that constantly.  Its hard to tell exactly what causes what at times.

The fatigue is bad on some days, and then other days I get a boost of energy.

I also have some kidney issues, but that could be from the blood pressure pills I have been on for a long time.

[Susan61]

What kind of insurance do you have?  All the years that I have been on Gleevec, hardly anybody knows what it is for.

There are doctors who never heard of it, and when I tell them the whole story they have been amazed.  I imagine that a lot of doctors and pharmacists who have not dealt with CML are oblivious to the use of these TKI drugs, but I do find it odd.

I went on the Gleevec in 2000, and never had a problem with refusal of filling my prescription.