16 replies to this topic

[roamingdoc83]

I was diagnosed in a routine blood draw back in Oct, 2009 - I was at that time on Cobra (and anyone who knows can see the 'oncoming locomotive!). I started on Gleevec 400 daily and my WBC and blood labs showed normal after a few weeks.  PCR was improving rapidly... etc, etc... CML seemed to be a part of my life from then on.

After Cobra was over, I spent my 401K (I was then unemployed) on expensive 'high risk' CA insurance pool and continued with Gleevec... my wife then lost her job of some 16 years but did get another and I played 'Mr Mom' in a real twist to our grandsons. Wild.

Ultimately, in late Nov of 2011 I decided that I was not going to pay the nearly $1200/month for coverage in CA, we were indeed moving to AZ, and so I let it lapse (I know, but there were mitigating circumstances and conditions that were present and so it may sound stupid but...). At that time, because of dose decisions made by a wise MD, I had some set aside Gleevec and maintained the 400 thru June of 2012 when it ran out. We left CA, sold our house and cut our losses, moved to AZ 'just in time' to see that AZ was not processing their 'high risk' pool applicants (the preexisting condition insurance that most states carry) so again no insurance. That was nearly 13 months ago. I've been off Gleevec for that period.

What is interesting is my blood labs are all normal. WBC is about 7-8 regularly and no blastic activity. I don't feel bad although a 'new' job (no insurance for a year, right to work state) puts my older body on its feet without letup for 8 hours a day on concrete, fatiguing. So this is all confusing. I do not, in AZ, have an oncologist. All want (and I understand liability) "all" the tests (PCR, marrow, etc) and I cannot afford them so they won't see me. This is all very interesting... I am not going to comment on the WBC (my reds are perfect, all the blood is perfect... weird) normalcy but it sure is a surprise. I figured I would be dead by now but perhaps that is all coming, don't know. I am taking one neutraceutical and it was touted as having great powers but I won't go there either as I simply do not know and won't spread untested information. I, because of an old vocation, can order my own blood tests and I do so every three or four weeks, full WBC/CBC with diff.

I guess the normalcy, over a full year, of  my blood work is kind of surprising. I do email my old oncologist and, of course he has not seen me for over a year and is nice to answer but 'cannot' make concrete statements due to liability,  he did say "he would not be surprised to see it all come back." LIMBO time!

Don't know what to think about this. Don't have and won't have insurance for some lengthy period. Not at the age (yet) of Medicare and not sure it will offer 'old' folks recourse... hope all are fighting hard and progressing to 'normal.' Take care.

[mariebow]

Wow! All I can say is that is something. I hope something works out for you and maybe help and advice from this site will help you.

[Trey]

There are several folks here and elsewhere who have voluntarily stopped taking the TKI drugs.  Here are some TKI cessation discussions we have had recently:

http://community.lls...q=TKI cessation

[hannibellemo]

I remember you from your earlier posts! Glad to hear you are still among us!

Pat

[roamingdoc83]

Still above the ground.

Trey... thanks for the links. I would say that my cessation was a bit 'less" than voluntary ;^) No money, no insurance, no meds...

I would love to do a PCR test but it is still way out of line with my finances. Saw that some, even with a NORMAL WBC/CBC still had a higher than wanted PCR result

and would like to know where mine is (I feel pretty normal except from time to time, perhaps four times a month, I get some night sweats... then again, my wife doesn't

have CML and she has said she had them the same evening so perhaps too much hot spices in food  ;^)

I am not "thinking" that I've beaten CML but "would take it" if that was the case. OTOH, I could perhaps make it to Medicare (I'm 1 year and 7 months shy) and MAYBE

some aid would 'still' be available at that time. I am working and could have insurance before then but frankly not sure if they would keep me on when it is discovered they're

covering a CML incubator... some companies find ways to dump employees.

Novartis used to have a PCR voucher program... not sure if it is still going on... ?

All be safe... and thanks!!!!!

[scuba]

Trey - From your link:

"Conclusion: 2G-TKI may be safely discontinued in CML patients with stable CMR4.5. Importantly, a very low level of detectable residual disease after 2G-TKI withdrawal may be compatible with treatment-free survival. A longer follow-up is required to ascertain whether CML will recur. Our study provides a reasonable basis for subsequent prospective clinical trials. Updated results will be presented."

So what is keeping the CML in check to enable treatment-free survival? If bcr-abl is detectable - then the person has CML. What is the body doing to keep it in check?

(I'm testing the 40mg. Sprycel increase to see if I can get to PCRU since I'm close. But maybe I don't need to. I will consider stopping Sprycel even though I am only MMR and see if it just stays there. I asked Dr. Cortes about it and he said "no". Only in CMR and for an extended time (two years) would he agree.)

[Trey]

RD83,

You should look for any type of CML related clinical trial where you get free monitoring and maybe drugs.

http://clinicaltrial...&recr=Open&pg=1

[Teresabourgeois]

This makes me so sad! I will pray for you and others in your same situation.  Bravo for telling your story and the truth! TKIs have allowed us to survive verses the people DX before 1999.  So we are blessed.  To bad our world evolves around money.  HUGGS!

[roamingdoc83]

Thanks ... taking a look.

Wow... many are from Italy. Interesting.

I have no Oncologist so will see what the criteria is for entry. Right now the blood would show I'm normal, how to make them believe I "have" CML, that is the question.

Thanks again!

[Trey]

They would only need to contact your previous Onc.  They have a professional "duty" of sorts to respond to such requests.

[pamsouth]

Sad, about the insurance and all, but very interesting and informative, which leaves many questions.

None the less your story gives us hope to lower our doses or maybe safely discontinued TKI, at least long enough to give us and organs a much needed rest or chance to heal, if not to much damage. Am 65 years old on TKI for 8 years and a lot of wear and tear on these organs and the spirit, and stress and worry.   Lost a gall bladder in 2005, surgeon said it look like a perfectly good normal gall bladder but the test said the tube that the bile goes thru and open and closes wasn't working properly.  Now a stage 3 GFR, kidney's not filtering properly.  Soon to start a new TKI on a lower dose, have had a nice break and bloating in the gut is down and swelling in the hands is gone.  Seems everything is a trade off for me.  Hopefully can strike a balance with another TKI dosage and repair the kidneys.  Don't know had a lot of blood test, urine sample and ultra sound, go to the kidney doctor next week so hopefully he can shed some light on how much damage is done.  As to why well I can only guess??  Seems most organs got tubes and filters and for some reason they are shutting down.

Praying that you will find a way to keep doing at least some of your blood work, at least you will know if it starts to go bad then the CML is gaining on you. Sorry the oncologist won't give you more info.  It is ashame to live in the US and healthcare to be in this kind of state.

I ran into a gal at the store, who had a long list of health care issues, she has good insurance.  She said she was on way to many med's and one of her docs is helping her get off some of them.  She went on to talk about this drug cause this and then you have to take this drug, you know no end to the effects of drugs and what does what.  When I told her how much/cost of these TKI are.  She put her head down and defended the drug companies as she had worked as a chemist at one of the local drug companies.  She defended how well they treat their employees and spread the money around to charity, etc.  I wanted to take issue with her on those of us who depend on the drugs for life, and those who can't get them, or pay dearly for them, and at what cost to our insurance companies that raise our premiums and the costant battles with insurance companies or labs, and drugs, etc.  But I figured she was a pretty smart cookie and surely she could figure that out for herself.  But what else could she say.  Anyhow it wasn't worth the stress to get my blood pressure up, at least not with her, need to save my energy for other things right now.

Best to you,  PamSouth

[roamingdoc83]

Looking for a good one in Flagstaff/Prescott, Northern AZ area... will see how that goes... MANY thanks Trey for your dedication to this forum and those who are dealing with CML!

[roamingdoc83]

Pam,

Life is  a bit of a crap shoot, hehehe.

I, we, have a strong Faith but have never thought that "I" deserved to be spared or anything like that. To me, my particular outlook, this is a 'war' (not of the 'worlds' but of the Spiritual kind) and we are either on one side or another or perhaps caught in the middle.

Over the past four years I've been diagnosed with CML, lost a job, lost insurance, lost my best friend and mentor, lost my Dad, my wife lost her job (got another, she's outstanding!), moved from a state that we'd both lived in for over 40 years to another, got a job, work on my feet solely (no pun intended) for 8+ hours a day (never sitting) and still have no insurance... now are moving again from the 'rental' to the 'ownership' (we hope and pray and think... good deal though if it all works) and also have had four surgeries in that period (those were covered by insurance, hehehe)... almost died from pneumonia and so it goes.

I had insurance from age 18 (way back) through August of 2010 - (over 40 years) ... now have none. I've always eaten organic more or less, exercised rigorously and regularly (both cardio and strength) etc etc... never smoked (ever), never took drugs, did not have a drink of alcohol until age 31 , did not party, and was more or less careful in my life (except on motorcycles and while sky diving, ahhh, ahem)... and took vitamins since I was fifteen! I CAN SAY WITHOUT A DOUBT THAT if you do all those things... YOU WILL NEVER GET CANCER,  hahahahahahahah... JUST kiddin' ... but ain't life grand?

So why do I say all that... because I think anyone who has a 'cancer' (and particularly all the good souls here at CML) must realize that "it is most probably nothing they did or ever did" that caused all this crap and no one should blame themselves (I did walk thru an LAX  xray  scanning machine that, a year or so later, turned out to be one of those 'not properly' configured or set up... hhhaaaah! who knows.... Lovely.

All be safe... kind to each other... thanks!

[CindyS]

Hi roamingdoc83 - I just read your posts and the responses here and wanted to give you a recommendation for an oncologist.  I too am a California transplant to Arizona.  I was diagnosed about 2 years ago and see Dr. Miel at Arizona Oncology in Prescott Valley.  When I was first diagnosed, I went down to the Mayo Clinic in Phoenix to get a second opinion on treatment options and their recommendations were the same as Dr. Miel's, so I felt more confident in the treatment I was getting and have been pleased with the treatment I've received.  AZ Oncology has several offices in AZ.  Their Northern AZ offices are in Flagstaff, Sedona, Cottonwood and Prescott Valley.  Dr. Miel is in Cottonwood M-W and in PV Th & Friday.  I'm not sure where you live, but one of those offices should be convenient for you.  Since they are so large, they may have access to some trials that you could participate it - it's worth a try anyway.  Their website is www.arizonaoncology.com.  Good luck!!

[roamingdoc83]

Thank you Cindy!

I will do some research on this MD/Oncologist. Personality is also important and so I wonder if you care to comment? I've had just two oncologists since Oct '09 and found one to be very personable while the other was a bit cool... both good but much easier to deal with the first. I know where the Prescott Valley office is, been on that street before... thank you for the information!!

[CindyS]

Everyone at the Prescott Valley office is friendly and seem to care about every one of their patients.  Dr. Miel is very personable.  Since I have the Gleevec brain fog, I keep track of all the questions I want to ask in a notebook that I take with me to every appointment so I don't forget to ask something or ask for copies of my labs.  She talks kind of fast sometimes so I get a little off track and my list of questions is always helpful.  She is very caring though - even hugged me when I achieved MMR!  I don't know for sure, but there may even be a social worker in one or more of their offices that may be able to help you with your insurance situation and get you some help in that area.

Let me know if you have any other questions - I'd be happy to help out any way I can!

[Susan61]

Hi:  I wish you the best with all of this.  Even Medicare does not take care of you 100%.  I am not on Medicare myself, but we do have some who are.  You can get help to a certain point, and then you hit what they call a Donut Hole where you have to pay full price for a period of time before they start paying again.  Maybe Someone can explain it better.

I am on my husbands insurance, and therefore did not pick up the Medicare for myself.  He is very sick right now, and out of work.  We are paying for his medical benefits each month out of pocket, hoping he will be able to return to work after temporary disability.   He is not old enough for Medicare himself.

   Its hard to get the help we need.  I did the clinical trial for the Gleevec back in 2000, and was told if I ever could not afford it that I could get it free from Novartis.  I applied, and they refused because of my husband having insurance.

I have been PCRU since 2002, and I wanted to cut down my dose.  My doctor will not let me do it. I cannot help but wonder what would happen if I could not take my Gleevec anymore due to the expense.

  Keep searching, and you will find the resources you need.  Please keep us updated on how your doing.