Happy Cat it is a long story,
I don't know where to start. I got fed up with my old oncologist and can see me going down much the same road with the new oncologist, whom I had a consultation with last November and 1 lab and office visit in March 2012 and am going for my labs again this Thursday, which will be my second lab with the new oncologist.
I don't know if this makes sense or I can put it in chronological order, or you can follow this but if you care to, here goes.
I am taking 400mg, I would like to go down to 300, but I am 100% sure present onc is not going to lower dose of Gleevec at 1.5 Fish or 7% PCR. I have already asked, I am pretty sure it was a joke to him, NO!! Hopefully with the Curcumin I am taking my next labs will be better. Well at least Curcumin seemed to make a difference for Scuba in that he only take 20mg of Sprycel. As far as increasing Gleevec dosage I would rather do that then switch. I am 100 % postive that is not the plan of my doctor to increase dosage. There were a few times I tried to increase on my own, for a few days, when I was first diagnosed in 2005 as my onc was wanting me to go to 800mg. I am pretty sure I would have very low counts and a much lower quality of life. My balance would be off for sure, head aches, rash and eye glare, nausea, moon face, fluids, general ill feeling and would only increase my muscular skeleton problems. Just plain sick. I don't like taking a higher dose I am sure my CBC, and other labs would be adversely effected like have low WBC, RBC, Kidney. There goes any quality of life, so what is the sense of taking a higher dose to have low counts. I mean I am 64 years old and I am not looking or not contemplating spending what is left of my left at the doctors, the er, or running test, or sick, or running my husband into financial bankruptcy with medical bills!!
However, again I am sure the new onc isn't planning on increasing dose, but to switch TKI like I said he only called in 1 refill of Gleevec, Which just follows up with my last conversation to his nurse a month ago. Yep I see where all this is headed. We are going to be banging heads. I don't want to increase dosage but I would rather do that then switch TKI'S. After all Gleevec will become Generic in 2015 and I won't have to worry about the insurance sending me letter every year, that even though the Gleevec was approved, they are in dreadful trouble, due to the world economy. They stopped sending me 90 days supply it is now month to month. When I called and asked why couldn't get the 90 day shipment anymore, they said the drug cost to much, they really can't afford it, and if something happen to me, they didn't want stuck with paying for a 90 day supply, so there you go.
I went to him (the new oncologist) for Consultation back in November and I feel like he has reniged on what our understanding was or I would not have chosen him.
This really tics me off because I feel like that is what my previous oncologist of 6 years did. Makes statement to get you as there patient, then come up with a whole different attitude. You know you sort of feel very venerable and shocked when hit with a different profile that you thought you were on the same page with the oncologist. Nope seems they change their agenda very quickly early in the game plan, just forgot to tell the patient.
This list of side effects of theseTKI'S for example Qt or heart problems. I have a family history of serious heart disease, by younger brother who was a perfect donor match, has had quadruple by-pass and 3 defib and congestive heart failure. Last year I had to change my blood pressure med's as was having trouble with irregular heart beat. I know these TKI are hard on the heart, but I was having a lot of stress due to my husband illness and two deaths and my son in ICU on life support, it just wore me down. That all I need to go on Tasigna and have all these EKG, more trips to the hospital. Like might as well let cancer take over my whole life. What life now I am consumed with why is the onc going down this path, that's not what we talked about in consultation, no he just threw that out the window and is jerking me around.
To change TKI'S, to me, is to change one demon for another and Gleevec and I have been together since 2005, and at age 64 I don't care to roam around in the unknown and be more of a guinea pig they I already am. But if you say that to any doctor well that is how we learn, well maybe the rest of the world would like to be the guinea pit, but not me. At least Gleevec has been out longer then the others. At least it will become Generic sooner then the others.
My previous onc had been wanting me to switch to tasigna for about a year (2011) even when my labs were suppose to have been PCRU for over 5
years, she said because we have better drugs. Which was not her profile when I started seeing her in 2005. See they change on you. Before I went to her in 2005 I spoke to her about these clinical trial like, I told the onc "I had
went to a meeting about doing a trial study of 400mg vs 800 mg of Gleevec." I would say "how do they know 800mg is better 400 mg or another TKi is better, when there is so little data." She would say "they don't know, that is why it is called a trial." and little data. It seems some time ago I read
a report, or maybe it was at a seminar, that the study didn't prove longer life, to take 800mg over 400mg. Then after a few months of seeing this onc, she was on me to do the 800 mg of Gleevec because that would get rid of more leukemia cells and quicker
and I would have a longer life. Funny her previous words of a couple month prior, were still ringing it my ears "they don't know, that is why they call it a trial) Then last year, when my PCR jumped up, my previous onc was on my back hot and heavy to change to Tasigna. Even after I had another PCR a week later, that dropped from 48% to 12% in a week and even though I called the lab and they had switched to the IS. I called the LLS here in Indiana and read the
reports and she said obviously there have been some mistakes. There were other things on the lab reports that were questionable to say the
least. Plus my blood vial were shipped from Indiana to New Jersey, so I don't know how tainted the blood was. Plus the onc kept saying now these test are just a drop of blood and are very unreliable as they are magnified over and over. So I am suppose to change TKI on what she says is unreliable. Plus she said there was no labs to do the Fish and pcr here in Indiana that was not true either. She forgot to mention she meant she didn't have right or a contract here in Indiana.
This is what really bugs me and stresses me to no end. At consultation, Onc tell you one thing and then when they get your business things change, rather
quickly.
Well sort of same thing all over again, a repeat.
Last october I called LLS and they said I.U. is rated number one cancer center in Ind. I find out I.U. does there own labs and also interprets them. My previous onc had to send them to New Jersey, she said there was no where in Indiana. She failed to say or should have said she didn't have a contract or rights at I.U. to do labs.
Here is where the repeat come in. I go to I.U. for a consultation last November, all goes well, we seem to have an understanding of the mind or at least I thought. He is a CML specialist and his partner has been a Leukemia specialist for many years. At consultation he draws some charts on the board. He said I (he doctor) am one that does not always go by guidelines. If you stay somewhere in this area he pointed to the, CCyR, onc says I am find with that, as long as it doesn't
continually counts don't go continually go up. OK I am having happy dance at this point, a CML Specialist, who treats you as an individual and not a national guide line, like one size fits all, cool, Right? My understanding, we would do 3 labs, w/ FISH/PCR and also look for other mutations. Set a baseline and as long as I was stable, in the CCyR, he was Ok with me staying on Gleevec and not increasing the dose. He mentioned he thought it was strange that on my previous labs my FISH sometimes was maybe at 1% to 3 % while I had a PCRU. So he wanted to lab test for other mutations. I said OK. Well the test came back that they could not find any other mutations just the BCR/ABL 9/22. So his nurse said onc wanted to do a BMB, I had told him at consultation i wasn't having any more BMB. I had had two BMB and they were so painful for weeks and I had to sit on ice and take pain pills and use a walker. I told him I have severe Muscular Skelton problems and go often to a chiropractor and physical therapy and have massages. Now here he is wanting a BMB, when I told him no at consultation. Plus he is wanting me to come back in to talk about counts, I have nothing to talk about counts I see what they are, I am waiting to do the other 3 labs and establish a baseline of at least a CCyR, right! Maybe he wasn't paying attention or didn't take me serious. But things are going far different then they appeared to be at consultation.
Nurse is now mentioning I should think about Tasigna, I say onc and I already made an agreement to do 3 labs and if I am stable I can stay
on Gleevec. She said onc said to warm me I might have mutations.
Well last month my Gleevec prescription was up. There was a big mix up at Medco. I told them two months ago who my new doctor was and
they still faxed a renewal to old doc. To my surprise the old onc sent in a 12 month prescription. I told Medco she is not my doctor.
It is a long story, but finally the new oncologist faxed in a prescription with only ONE REFILL. Now I'M THINKING One refill?? That means he is planning on pressuring me to switch to another TKI. So I call the nurse back last week and leave a message well she has not returned my phone call as of yet. So I will go Thursday and have my labs and see the onc on June 21st and ask him what up with 1 refill. I alway get a year prescription. What is this month to month crap!
Now I am really beside myself thinking, Ok now that I am his new patient, Onc is in control and he is determined to switch me to another TKI.
after all Gleevec is going to become generic, this is a research hospital so I suppose he needs the research money, what else would drive him, to flip/flop, sounds like a politician. They do not how to manipulate vulnerable people.
This causes me great stress. My insurance give me grief from time to time about paying for these med's. I used to get a 90 day supply now
it is a month to month. I got letter the last two years from our insurance, basically that we are in grave danger with the world economy and so I called the insurance company, Chrysler UAR Retiree, and they let me know, that Gleevec cost to much and it was approved for the year but could change at any moment.
Well to ease my mind, I say to myself, if I stay on Gleevec it will become generic in 2015 and affordable, without us going into bankruptcy. I know there are many out there that get help co-pay assistance or other state aid. But when I had sent in a form to Novartis, for co-payment assistance on Gleevec I only qualified for I think it was $100.00 to $200.00 a year. Luckily our insurance covers most all the cost, I needed to test the waters, before even thinking of switching. Then last
year I got a letter from Novartis they will no longer give co-payments for Gleevec and even if I went on Tasigna we wouldn't qualify for much. Not only that I can't see myself living from month to month on charity, or whether or not I am going to have the money for these new TKI for the rest of my old age, of worry and stress. My husband and I have worked to hard to lose what we do have in the autumn years of our life. I will not put my husband into poverty over the expense of a drug, when Gleevec will become a patent. When people says "gee my onc say go on Tasigna now so when Gleevec becomes Generic the insurance won't deny you the new drug. Well there has been some discussion on this board as to playing around and jumping from one TKI to another TKI. Like how does one know if you go on to Tasigna and then to Sprycel and them back to Gleevec. Well Im just don't think we really know the changes our bodies go thru and
what is permanent damage or irreversible. Then go back to Gleevec when you have been on these other TKI and are a mess.
I'm getting tired, my brain is mushy. Sorry this was so long. Depending oh how my next labs go and my onc visit on the 21st. I am thinking of back up plans.
See if he will give me another prescription for Gleevec, isn't that sweet of him to keep down to the wire guessing. Get on the horn and go thru finding a new oncologist, consultaion and all, which insurance won't pay for which will be $400.00 or $500.00 bucks. Thank God I will be 65 Years old Jan 1st and I will be on Medicare, because BLUE CROSS UAW RETIREE, SUCKS, it is like having a part time job getting them to pay. Or just flush the d.. pills down the toilet and forget this aggravation.
I was going back to school this September but I am sure not going to be able to go back and put up with changing drugs and all these appointments and side effects. It's not exactly a cake walk I have already been there. No I would just as soon stay with Gleevec.
Funny think I had to go to my primary substitute doctor last Monday and we were talking about all this. She said well maybe onc doesn't understand why you don't see it is way and for you to say no throws his mind off as what do I do, so why should he even see you as a patient. The only thing I could think of was well I do need my Gleevec and he has to write the script . But on second thought what is she talking about. Lets see he sees me for maybe 15 minutes and get paid around $200.00 I bet he doesn't mind getting paid regardless of the outcome.
I don't know I am now being redundant, ranting and irritating myself. Probably not thinking it thru. Well that another think I get tired of thinking about what is rolling around in his mind because he does not shoot a straight arrow. What kind of crap is that writing a script for Gleevec with 1 refill and they are only 30 day, month to month.
Sorry this was so long, probably makes no sense. Need to go to bed and cleanse my mind. I really don't feel very grateful for a life of these drugs, not at my age, because then cancer and doctors and guessing games have now consumed who I am. What kind of purpose of life is that?
Oh IND Univ has sent me a couple of survey to fill out. I am going to wait awhile. Hard to fill out a survey on two visits, but if this turns out bad, I am for sure going to fill out this survey and it isn't going to be pretty.
This is so long, did I mention, that the new onc only faxed in a Gleevec prescription for 1 month with a 1 month refill!! Now what does that tell me. STRESS! HARD TO GO BACK TO SCHOOL WHEN ALL YOU DO IT GO TO DOCTORS AND HOSPITALS AND TIRED AND ALL THESE SIDE EFFECTS FROM THESE NEW DRUGS. I HATE IT!!!! WHEN LIFE BECOMES ABOUT ALL ABOUT THE CANCER AND DOCTORS AND THATS ALL YOU THINK ABOUT, AT 64 YEARS OLD I THINK IT WOULD BE BETTER TO JUST THROUGH THE MED'S OUT AND WHAT WILL BE WILL BE!!
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