just diagnosed (very early) with CML,: The Leukemia & Lymphoma Society Community

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Buzzm1

54 posts since
Oct 31, 2009

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Nov 1, 2009 12:21 AM

just diagnosed (very early) with CML,

Hi everyone, thanks for being here. My name is Buzz, and i was diagnosed with CML a little over a week ago.

This past week has been very trying; I've been dealing with a bout of depression, caused by the underlying anger at the thought of having to deal with something that I have absolutely no control over.

not easy for a guy to deal with

I have a serious injury caused degenerative condition in my neck, that takes just about everything I have to stay above it.

soon

I was getting very worried that I would require another neck operation - and lose another year out of my life

now that seems to be far removed from my worries.

I needed to come here tonight and share a few feelings.

My new doctor said not to worry, we are really early with the diagnosis.

Bone marrow test on Dec. 11th to establish a baseline; I'll start Gleevec 400mg at that time. I'm still going through price sticker shock at the cost of the medication. $4076 for 30 days through Kaiser Senior (Medicare) Advantage. The Donut Hole begins at $2830, at which point my out-of -pocket will be $4,350, and then catastrophic coverage kicks in and it's almost free for the rest of the year. (that'll be next year). Funny that it wasn't more than three weeks ago that Kaiser sent me my drug cost summary for the nine months ended Sept. 30, and I looked at the numbers and thought to myself "I'll never reach the donut hole."

My understatement for this year.

Can't say this is something I am really looking forward to.

Buzz

Leukemia_Stupemia

37 posts since
Oct 29, 2009

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1. Nov 1, 2009 12:27 AM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Hi Buzz,

Unfortunate to say, but welcome to the elite group. I imagine how diffiult this first week has been for you. I am going into month 5 of my cancer, and every day is a challenge... As soon as I was diagnosed, I immediately began a Caring Bridge page. It really helped writing about my feelings and also keeping family/friends up to date (it is hard saying the same story over and over again) I wish you the best with the BMB - I've had two done, and one of them had to be done twice (so technically 3) and if you ask for sedation, they are do-able... My next one is at the end of December. As far as insurance - frankly it just p!sses me off... My insurance has been playing games with me since the beginning. My chemo is roughly $333 per day, and my family is very worried that I will reach the max and then they won't want to pay for me. Its a sucky fight, especially when you have to focus on the fight of cancer! I wish you all the best. Check out my page if you are interested, and I encourage you to make one also.

Jacquelyn

http://www.caringbridge.org/visit/jacquibuckley

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Buzzm1

54 posts since
Oct 31, 2009

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2. Nov 1, 2009 1:28 AM

in response to: Leukemia_Stupemia

Re: just diagnosed (very early) with CML,

Hi Jacquelyn,

Thanks for sharing your condition with me; your blog photo pages are great; that's a really good idea; you have a very nice support group.

I've only shared this with my youngest son (Kevin, 42, who lives with me), and the girl/woman who has been cutting my hair for the last 15 years ..

i don't feel as if I want anyone else to know

That's something I need to deal with, my vulnerability; maybe it's a guy thing

This certainly brings life into living one day at a time.

Buzz

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Larry Smith

26 posts since
Apr 18, 2009

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3. Nov 1, 2009 12:30 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Buzz welcome to a group that is always there. I was dx in Nov of 05 and the shock is quite something. After my initial shock I was glad (if that is appropriate to be) that we have an illness that has a series of medicines to deal with it. I have never had an issue with the Leukemia as far as the illness goes - it has always been an issue with the medicine. My WBC at time of dx was 468,000 and so them catching it early for you is good.

The one thing that did take some time for me to adjust to is the side effects of G (Gleevec as we call it) hits each of us in different ways but commonly it can knock you on your butt. I am retired Air Force and not being able to go out and do the things I enjoy without knocking me to the floor was quite an adjustment. I had to give myself permission to be tired and accept there would be days that I would not get past my couch or that if I go out - in bed for the rest of the day.

Feel free to ask anything and there is no such thing as a stupid question. Let us know how your BMB goes and keep us posted.

Larry

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Buzzm1

54 posts since
Oct 31, 2009

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4. Nov 1, 2009 1:08 PM

in response to: Larry Smith

Re: just diagnosed (very early) with CML,

Larry,

Thanks for the welcome into this select group, and sharing some of your experience.

A newcomer, rookie, if you will, I can't help but be discouraged just by looking at the possible, and probable, side effects of "G"

But, as you say, we are fortunate to have medications to combat this illness successfully.

468,000, wow, that must have been a real shocker... I can't imagine

but, as you can imagine, somehow, that doesn't make me feel "lucky" that mine was caught very early

I'm almost embarrassed to post my numbers here, after hearing yours, and Jacqelyn's

but here they are (I looked back through my old medical records to get my history..warning: I'm a "numbers" person)

Name WBC COUNT (K/uL)

Standard Range 3.5-12.5 K/uL

8/18/99 5.9

2/04/02 8.8

8/17/04 9.9

10/20/06 9.2

10/30/07 10.7

9/23/08 11.9

8/31/09 13.8

9/3/09 16.5

9/17/09 16.8

10/14/09 17.9

Buzz

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Leukemia_Stupemia

37 posts since
Oct 29, 2009

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5. Nov 1, 2009 2:48 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Hi Buzz,

Dont worry... we were all rookies at one point, and I still consider myself a rookie! Regardless of the various numbers, all still come with a consequence. When my numbers got high, I began to get extreme pain in my joints (a few times leaving me unable to walk and needing to be hospitalized). I pray that your numbers do not get much higher and that the Gleevec (or G as I've loving heard it referred. LOL) will work! I wasnt given the option of Gleevec, but it was mentioned at the very beginning of my illness when we thought that I had a typical form of CML.

I know that you said in your post you werent sure about wanting others to know of your struggle. As a therapist (and one that has been off for 5 months and terribly misses her job...) I still think that you should put it out there, whether you keep a journel just for your eyes, or for others too. As I've traveled the "cancer" road now for 5 months, I find myself forgetting things that happened when I was really sick... My mom (20 years ago - had NHL and was given 6 months to live... its now been 20 years!) also kept a journal and a video journal. It is incredible to read/see now... Everyone struggle is different, but reading back really gives you perspective. On the days that I feel crappy, I read back through my Caring Bridge and am astonished at how bad things were in July/August time frame. Either way, you will know what is right for you And if you dont want to journal (it is a big step, I know that) at least putting your feelings HERE is benefical too!!! No one's cancer is any less of a battle or a struggle. We are all here for you in any way that you need Even if its only to vent (Ive had a few of those "Im going to freaking lose my mind" moments...)

Take care and I'll see you around here

Jacquelyn

http://www.caringbridge.org/visit/jacquibuckley

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Susan61

239 posts since
Apr 4, 2009

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6. Nov 1, 2009 6:07 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Hi Buzz: Glad you decided to join the group. Yes, they did find your CML early. They found mine in early stage also back in !998, but there was no Gleevec at that time. So, anyone being diagnosed with CML actually has an advantage with all the new breakthroughs being made everyday.

Everybody has different side effects, and some of us get things that others do not. I was diagnosed in Dec. of 1998, and I have been on Gleevec since Oct. of 2000. I am still here and doing very well. I have been in remission for quite awhile now, and I continue to take my pill everyday with a full breakfast. Enough food in your stomach and drink lots of water is the key to avoid some of the side effects.

Some people prefer to take their Gleevec at night with their dinner, as its the biggest meal of the day. I cannot say that my side effects have been anything so extreme that I could not deal with them. Try not to concentrate on what could happen. Try to keep a positive attitude.

I have gotten a bit of nausea, and cramping in my feet and hands sometimes. I think my biggest thing is Fatigue and Weight Gain. That is not a big price to pay for what Gleevec has done for my life.

Ask any questions anytime of the day. Someone can always relate to whatever your going through. I also do not think there is anything wrong with sharing what your going through with others, but that is up to you.

Welcome and God Bless

Susan

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Buzzm1

54 posts since
Oct 31, 2009

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7. Nov 1, 2009 8:45 PM

in response to: Susan61

Re: just diagnosed (very early) with CML,

Jacquelyn, thanks for being a therapist; I'll undoubtedly need, and appreciate, your helpful advice along the way.

Something tells me this illness will test all of my shortcomings.

Thanks for the welcome Susan, and sharing some of your long experience with me; it gives me hope.

Weight gain on Gleevec?? I was reading about all of the very rich foods that I should be eating, and I was beginning to look forward to eating fattening foods, as I thought I would be contending with weight loss, rather than weight gain.

Guess I shouldn't have purchased, and eaten, all of the nuts, and trail mix, (comfort foods) at Costco...lol I needed that laugh.

Every day is a new day

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roamingdoc83

44 posts since
Oct 13, 2009

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8. Nov 2, 2009 8:50 AM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Yah, the 'welcome' like that of survivors coming into a life boat from the Titantic.

This site is an EXCELLENT resource and from my brief experience (diagnosed after bone marrow on Oct 30th - did have the old 'telescoping' white blood diff

indications three weeks earlier - and I thought October was going to be a good month) great people are here!

So... I'm also being let go at my job (they are outsourcing)... and we were submiitting for insurance (coming off Cobra) when the 'first' abnormal blood

work came back and "I" (versus my wife) was denied (how LONG can they deny you for a cancer diagnosis? Have to look that up) so I won't have insurance.

So like the guy said, "Cheer up, things could be worse!"... he was right, "I cheered up, things got worse." ;^)

But anyway, all to say "try" and keep a stiff upper lip or at least force yourself to think on something positive each day.

I've done a lot of research on the 'treatment' plans of CML (some used to call it CGL as well) and there certainly seems to be an "upward" curve.

Ten or more years ago the bleakness far exceeded the 'light at the end of the tunnel'. Now people who respond to and tolerate the meds are doing

VERY well...

My plan ("IF" I can afford the meds, because I may not be able to) is to (as mentioned) try and stay positive. For instance, research is showing that

a large percentage of folks are experiencing the 'remission' and staying there past ten years!! It is suggested that within ten years there will be

further breakthroughs that "could" cure CML or at least maintain the remission with less meds. Those are good things.

Activity. Have to stay active. Some form of exercise daily... interaction with "friends" (remember, "pain shared is pain divided" and "joy shared is joy

multiplied") who will support you and bring a smile to your face. Harder with the neck issue but I understand. I've had eight ortho surgeries. Try and

work around it... just squeezing a ball or grippers, rubberband type exercises, anything to get the blood moving. Check with the MD but???

Education. Learn as much as you can about this but BE careful because a lot of (for example) sites on the internet have OLD information (the speed

of change regarding CML seems rapid so they are behind) that can be scary.

Diet. I'm supplementing (no, I don't think supplements will cure or alter CML) with good nutrients and eating very healthy (but I have always done that). I

do take a variety of supplements that are supposed to aid in energy (CO-Q10 is one) and reduce inflammation (Curcumin is one) but that is for me

and may not be for everyone. Just gives me the 'feeling' that I'm covering the bases perhaps.

Prayer. Yes, we pray.

R&R. Get good rest (at first that may be hard but exercise will help here) and try for 7 hours nightly. I have had to take a bit of melatonin before bed

as it seems to help 'me' (perhaps not everyone) and sleep is good for the psyche and body. Do something fun each week or at least each month.

Even if it is just a movie, camping, a ball game... cook out, some sporting endeavor, clays or skeet, target practice, beach day... bird watching (we have

a lot of birds out our windows), something that imparts some peace and joy to the soul.

Keep track of what you are doing for yourself!!

HANG TOUGH in this... don't think you are alone. People are working hard in this field and good things are happening. Having the illness is a

drag. No illusions. But try and put some of the above to practice and "don't quit the fight."

Doc

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Buzzm1

54 posts since
Oct 31, 2009

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9. Nov 2, 2009 11:02 AM

in response to: roamingdoc83

Re: just diagnosed (very early) with CML,

Thanks Doc,

You certainly have a way of putting things in perspective for me;

after all of the very caring responses here, I almost beginning to feel as if I don't have anything to complain about, as compared to all of you

hopefully I can at least offer all of you some support, as along our way, we go

hoping that you can figure out a way to get your meds Doc; fortunately those that cam before us here have great information on resources (greatly appreciated)

I'm trying to figure out how to not go into the donut hole in December (if I fill the first 30 day Gleevec prescription on Dec. 11th, that will cost me over $2,000 out of pocket, and then In January, I'll have to start the donut hole all over again). not prepared to take that $6500 hit coupled with a $4000 Dec. property tax payment. maybe delaying the start of the med for a week is the simple solution, then I'll only have to work out the January February every year. a minor problem in the overall scheme of things; think I need to work at putting things in their proper perspective

supplements; used to take a lot of them; should probably get back on some of them now.

Thanks for all of the encouragement everyone,

Buzz

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roamingdoc83

44 posts since
Oct 13, 2009

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10. Nov 2, 2009 11:26 AM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Brother I do understand the $$$ issue.

I have to 'break down' the pharmaceuticals into two groups. The scientists, technicians and

worker bees and the 'CEOs' and lawyers at the top. I was provided an "example" of out of pocket cost

for a medicine (I forget which but I will find out later and 'edit' this for naming)... if you had to buy the meds

in Brazil, it was $5 / month... in Mexico, it was $70 month... in the US, it was $6500 /month!!!

R&D is understood, costly and so forth. I am really NOT sure how much goes into the 'legal defense fund' but

would assume a hefty sum. BUT that difference in cost (and someone here mentioned Canada where meds

are significantly less expensive BUT IT IS ILLEGAL for us to get them there) is criminal.

One of my surgeries showed an EOB of 'total cost' $83000... total paid, $9000. Heheheh. Now who's kidding whom?

The hospital 'ate' the difference? Not likely. I paid about $280 or so. We do not, IMHO, need a 'socialized' or

'nationalized' or "one payer" insurance program. We simply need to stop the need for 'excessive' funding of the

legal defense funds, retained legal teams and "contractual" paperwork that no one understands but has to defend

against anyway.

We have fabulous research groups in America. Freedom is great for all the right reasons (and of course to be

fair there are breakthroughs in 'less' free nations as well) but the 'dog eat dog' of interdisciplinary groups AT THE

cost of reason and availability to the public needs to be reigned in sharply. I don't believe in throwing the 'baby out'

and all CEOs are not cut from the Enron cloth (or the others)... but greed and avarice need to be exposed and

individually delt with or we all suffer ultimately. Not necessarily a "medical" point about Leukemia but

perhaps pertinent in regards to combatting the illness and being able to procur the medications necessary.

I joked about selling a kidney but one has to wonder... certainly do not want to lose the home over the cost of meds.

Doc

PS - hey, a complaint about getting CML is certainly understood. Who doesn't cry, "Why me?" but like the warrior

who yelled, "There coming over the fence!" - you really only have two choices. Fight back or give up... ;^)

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Buzzm1

54 posts since
Oct 31, 2009

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11. Nov 2, 2009 12:14 PM

in response to: roamingdoc83

Re: just diagnosed (very early) with CML,

Doc, everyone,

Sorry to drag politics into this.

If there is anything Americans should be demanding as part of Healthcare reform, it is European/Canadian drug prices.

President Obama did a back-room, closed-door. $80 Billion Dollar deal with Big Pharma, in which he guaranteed them that Americans would pay top dollar for drugs. I have to ask, does he really have our best interests at heart?

Canada does offer a lower cost generic for Gleevec, which Kaiser, my Medicare Senior Advantage provider, doesn't offer.

Turns out that I could buy the generic from Canada, for just about the same out of pocket expense, as I can buy Gleevec with Kaiser, and Medicare, insurance.

Buzz

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Buzzm1

54 posts since
Oct 31, 2009

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12. Nov 2, 2009 12:18 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

re: Turns out that I could buy the generic from Canada, for just about the same out of pocket expense, as I can buy Gleevec with Kaiser, and Medicare, insurance.

But in buying the generic from Canada, American taxpayers wouldn't have to pay the additional $45,000, EACH YEAR, for my Gleevec prescription

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Tess Dement

12 posts since
Apr 15, 2009

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13. Nov 2, 2009 2:32 PM

in response to: Buzzm1

Re: just diagnosed (very early) with CML,

Hi Buzz and welcome to the site. I was dx 10/06 at an early stage also and have been pcru since 08/07, I take 400mg gleevec everyday. When I first was told i had cml I thought I was going to die. I didnt know about this site and everytime I went on the internet to research cml I was horrified with what I found - I figured I had 5 years at best. When I went for my first onc appt the first thing he told me was that of all the leukemias to get I picked the right one, because of gleevec and how great it worked. Since then I have found this site which has helped me cope and answered many questions i have had, also the leukemia education series has been great - you can listen in on cml discussions by top cml specialists. My side effects have been some nausea in the beginning - but now i make sure to eat a big meal with my pill and Im fine, some cramping once in awhile in my feet but milk and banannas have helped, and some weight gain which im now joining weight watchers and have already lost some. I think its worse in the beginning but give it time , your body and mind adjusts to the new normal, and know that you are not alone - we are all here with you.

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Leukemia_Stupemia

37 posts since
Oct 29, 2009

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14. Nov 2, 2009 4:42 PM

in response to: Tess Dement

Re: just diagnosed (very early) with CML,

I couldnt agree more about politics, crappy insurance, etc. I work for a hospital, I thought I had the BEST insurance!! When I was first diagnosed, noone in Pittsburgh wanted to treat me as I have an "atypical" form of CML (chromosome deletion, etc.) One of the best specialists in the country (other than France) is in Tampa, FL at Moffitt Cancer Center. My insurance would not pay for out of state care... So my family (husband, mom, and dad) decided that we would go uninsured and just all pay like $100 each a month and pay the bill off in no time... Well, Moffitt said that "sure" they would see me, but they wanted $10,000 UP FRONT and then would begin to bill me for payments!!! It was ridiculous so we didnt do it...

Thankfully, I was lucky and the expert of the 5q- in Tampa has been in contact with my oncologist because of the rarity (my type hits men in there 70-80's and there isnt many options as far as treatment)

I had called my insurance to try and change it (so that out of state was covered) and they said that I didnt have a life changing event... Haha, I started laughing because I thought he was joking - cancer isnt life changing?

Oh jeez... I think that insurance companies like to put us through the ringer because we cost them so much money... BUT - there are an equal if not more, amount of people that continue to pay into the premiums that never get sick...

I will admit to buying meds down in Mexico (yearly when I go to visit New Mexico!) but I dont know about cancer meds... I usually do antibiotics, skin creme, etc.

Jacquelyn

http://www.caringbridge.org/visit/jacquibuckley

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Nov 1, 2009 12:21 AM

just diagnosed (very early) with CML,

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