Ok, I am trying not to panic, but because of my past history I am. I just heard from oncologist's office, my platelets have dropped from 210,00 to 140,00 again, that doesn't bother me, they jump around like this all the time. The white count has went from 3.8 two weeks ago, 5.1 last week, to 11.2 this week. I am unashamed to say I am going nuts. I am to repeat bloodwork on Thursday. There are many reasons I am going nuts, I believe the 140 mg works, ok, but I am a waste of human air on it. I don't get off the couch, yes, my hair fell out, my face has that burn that did not go away in three plus months, I don't cook for my family I don't feel like moving, and some days even after three months on the 140 mg of Sprycel I did not get out of bed all day. Dammit I am mad. I am frustrated, and I am disgusted. Once I read Trey's note to someone maybe even me about living with CML, not allowing CML or the meds to take control of our lives. This is how I feel when I am on the 140 mg. Even if I would have adjusted to the dosage in time I wouldn't be hollering so much, but as I progressed it seemed to hit my body harder. Even when my platelets were almost 2 million my white count was never over 16. I realize I am now resembling what a CML patient usually experiences, the platelets bottom out and the white count goes sky high. I am ok living with CML, I am ok living with side effects of the meds, I am even ok being bald if I have too, but you know, I am not ok when I can't enjoy life and my family, and if I go back to the 140 mg, that is where I will be. I am so damned mad I could toss the entire house and break everything I touch!
Posted 28 February 2012 - 12:37 PM
Hi Pam M.,
I am calling you....and if I ever hear one more person say- CML, you just take a pill and that's that I think I will scream!!!
Posted 28 February 2012 - 04:23 PM
See Judy2, You just read what PamM is going thru. her hair fall out, the burn, not getting out of bed for 3 months. Not that Gleevec was great that first year. But dang that is nasty toxic side effects for PamM. Plus I think it was 140 Mg? Dang! Make me a bit shy of changing to anything. I feel for her!
Posted 28 February 2012 - 04:42 PM
Hi Pam S.,
I feel very bad for Pammie too but remember that is on 140mg Sprycel. Hopefully at a lower dose people wll not have those horrible side effects. I hate CML for making my friends lives miserable!!!
Posted 28 February 2012 - 10:13 PM
Judy2, with all her side effect I don't get why she is on such a high dose. I mean are most onc putting starting everyone on a high dose. I mean all I can think of is what kind of havoc 140mg would have on someone body and organs. Oh dear I pray I never have to change drugs. Dear God at 64 years old I don't think I could take it again. I just want to take my pill and live out my life and not worry. But I still feel I need to read the post, because just like last year my onc drove me nuts about changing to Tasigna. When I get this insurance settle, my EOB came back again denied 3 times. Now it really gets complicated, insurance got to go back again and talk to the supervisor about future onc visits are they going to let me continue to see onc with certain code to pay for it. I read her the letter Blue Cross sent me June 2006 agrees to let me use the code to pay for onc visit. What it is V67.2 code was used for follow up visit to the onc for those that had IV fusions. However when I was diagnosed they, insurance agreed in writing to let the onc billing use that code for TKI drugs not just infusion, therefore you are allowed 3 follow up visit to onc. Now the insurance is saying after allowing this for 6 1/2 years they are reviewing the interpretation of the code. Thank God I will be on Medicare on my Next Birthday Jan 1st 2013 I will be 65. Hum, I am just thinking of filing for disibiltiy instead of spending my life fighting with the insurance company. I did not want to do that. But tomorrow I am going online Social Security and order the packet for SSI. I thought about it before but Social Security said I had to file with in 5 year of my last day of employment. I said well if would have been diagnosed when my labs came back in 2002 it would have been 5 years, and SS said prove it. Well I am going to file and then get one of these TV attorneys. Me and my husband have worked to hard all of are live to be jerked around like this. I mean are insurance deductible, co-pays, cobras, go up every years. I am sure we don't fall in guideline for help, so yep I am filing for social security disability and fight for Medicare. What the heck. The more I think about it if I have to change med's and be at the onc all the time and insurance doesn't pay, then I am going to be stuck with thousands of dollars to pay. Then again My Gleevec prescription does not expire until June I think, then I will need to go to the doctor go to the doctor and get another script. But I not paying thousands out of my pocket and going into bankruptcy. I will just take my med's and go to the onc 4 to 6 months then next Jan I will be on Medicare.
I am just talking myself thru this mess.
Health Care, Sucks,
Posted 28 February 2012 - 11:09 PM
Hi Pam S.,
Yes, health care does suck, I am so sorry you have to go through all of this. I truly hope you can resolve this mess with your ins. co. and do not have to apply for SSDI especially if you have to hire a TV attorney, I don't trust them. Do you have a personal attorney you can call, someone you trust who could give you advice? BTW, I think SSI is social security supplemental income and SSDI is social security disability. If you do go that route and they deny you appeal, appeal and appeal again.
Pam M. did start on 100mg Sprycel but it did not work for her so she had to increase her dose to 140mg. She is back on 100mg and we are hoping she will be able to stay at that dose. Pam S., I forgot, why did your onc. want you to switch meds? What is your current PCR result?
Posted 28 February 2012 - 11:52 PM
The last time I saw my previous oncologist was back in Oct 2011. Actually she had been on me for about a year to make a switch to a newer better drug, her words.
My Fish were ver good, range from 92 % normal to 100 % normal. Actually most of the time for the past 6 years my fish was either 96% or 100 % normal and the last fish was back in Oct and it was 96% normal. however for some reason last year my PCR starting going up. The next to the last one in Oct 2011 was up like 48 percent from being undetectable. So the oncologist sent another blood drawl (from Indiana to New Jersey) with in a week of the bad PCR and the PCR DROPPED FROM THE 48% TO JUST 12% I called the lab and asked if they had changed over how they do their calculation and they said yes they were now on the IS scale. Dr M admitted there was a lot of room for error on the PCR, but she was admit she wanted me on Tasigna, We batted a few question and answers back and forth. I also told her my insurance was grumbling and get strick about the Gleevec and the other drugs are more expensive and Gleevec will be Generic in a couple of years. She said don't worry about it I will make sure you have. Basically she had the last word. You will go off Gleevec for 2 weeks, do an EKG, then start Tasigna, didn't say what dose. When I left her office, I called the lab to see what was up with them and learned they had converted over to IS. Then I got on the LLS board to see what was going on with the new drugs. Then googled some of the report on the new drugs etc. I also called LLS in my neck of the wood and they said the number 1 cancer center of Indiana was Indiana University about 15 miles from me. I called the DR M office back and told the receptions to tell dr ... my CML had not changed that I had called the lab and they had changed the way they do their metrics over to the IS. and that I was not going to change drugs. Well Dr M.. office called back and said again the dr. wants to see you, so I made the appointment and then decided to go to Indiana Univer for a second opinion, they are rated number 1 cancer center in the state. Also Ind Univ does all their own labs and interprets them, so you don't have to worry about shipping them off and the blood becoming tainted. I had asked prev onc Dr M if she could send me to some lab here in Indiana, she said no place in Indiana. But IN Univ said what she meant to say, no place in Indiana where she was contracted to, in that she doesn't have rights at In Univ.
So I went for a consultation at Indiana Univer. Nov 9 2011. After about 2 week of getting them, In UN, to file the insurance billing correctly, they called me and said everything was taken care of and my insurance would pay for the oncology visit, that was back before Christmas. Today I got another EOB turned down for my visit on 11/9/2011 because it was consultation. So I said to the insurance if I go back with an office visit code and a diagnose code of V67.2 like I have done for over 6 years and Blue Cross has paid for it will you continue to pay for it. She said NO V67.2 is for follow up to oncologist after IV infusion. I said yes I know, but I have letter from Blue Cross Dispute board dated back in 2006, that they will allow the V67.2 infusion code to be used for oral drugs for cancer. As in old days they did chemo but now we take oral targeted drugs. Well I believe she found the letter, but is going to go to her supervisor to see if that interpretation of the code is correct, (thank God I kept the letter or they probably would re bill me for all those visits) if the Blue Cross decide after paying my onc, (allowing the code v67.2 ) to be used for over 6 years, not to anymore, then none of my oncology visit will be paid. Would they make me reimburse them I don't think so because I have the letter from back in 2006 from the dispute board agreeing to pay for onc visits and using that code.
I have not been back to the Dr for labs for fish and pcr since Oct 2011. Just waiting on this Blue Cross Insurance to make up their mind whether or not they are going to pay. If they are not going to pay. My Gleevec prescription will not expire until June 2012, unless my previous onc decide to cancel it, since I have not seen her since last Oct, but I don't think she will do that, as she has got way to many patients to be worrying herself about my Gleevec. So if insurance is not going to pay for onc visit, I will go to Ind Univ in June and get a prescription for a year and have labs. Then I will be good until Dec when the Insurance sends me a paper to have the doctor call and tell them I still need DRUGS (TKI), DUH! SO I will at least have to go to the onc in June and Dec, he probably will not be happy about that as a new patient he wants to run labs every 3 months, to see if I am still stable on Gleevec, but I have been on G for 6 1/2 years, so I am not worried about it. He did mention to think about Sprycel as it has different chemicals the G or Tasigna. But I'm am hearing some bad stuff about both drugs especially Sprycel. Some patients even going to the hospital to have fluid drawn off their lungs, losing hair, rashes, weigh gain, etc. Neither one sound as good as G has been to me, all though there was a few rough months. Still not great, but at least I am managing OK.
Then next January I will be 65 Medicare age. I still think I am going to fill for social security disibiltiy just in case my insurance fall thru the cracks. Nothing like insurance playing games with people who have cancer.
How are you doing? I forget when you started on the Sprycel and how what your dose is?
I am getting tired, hope this all makes sense. If it were not for this board I would not have the courage to keep fighting all this crap with the health care! You would think you work all your life, play by the rules, then your retire get CML and got to fight with insurance. If I have to switch well I just don't think at my age it would be worth it. You going die sometime I have already lived my life. Who wants to keep going thru this crap!! Now life becomes all about cancer hanging over your head and insurance and are they going to pay for the meds. Sometimes I think it just isn't worth it.
Posted 29 February 2012 - 12:53 AM
Pam S., hang in there, it is worth it and you are not alone, we are all going through the same crap together. Since your health ins. told you they would pay for your previous visits and you have the letter to prove it they cannot make you pay for those visits. The ins. co. just try to find any loop holes they can but stick to your guns, don't let them get away with the stuff they are trying to pull. When I was in the hospital last year and had a kidney biopsy the specimen was sent to a different hospital than the hospital I was an inpatient at, the ins co, tried to bill me as an inpatient and my kidney as an outpatient, I kid you not. I asked them if they were billing my kidney as a separate patient from me, I told them my kidney could not be an outpatient if I was an inpatient. Can you believe I had to have this conversation with the ins. co.? Bottom line, the insurance companies make you fight for everything.
I started on Sprycel 50mg about 7 weeks ago, too early to tell if it is working on a molecular level yet, will know more in about 2 weeks.
Hope tomorrow is a better day for you, or actually today by the time you read this.
Posted 29 February 2012 - 01:33 AM
Getting ready to hang it up. Hubby painting the bedroom today, got to put on a second coat, I am his supervisor.
Cute story about the kidney. We should write a book and put a show on TV call Insurance bloopers or something like that.
Yea your right Judy2 I kept that letter, now what they got to say!! That letter came from a review board dispute of a panel of their experts. Hum they got a new panel of experts!
Will be glad to see how your pcr come out?
Take Care and we will hang in their together. You know as many people you can get will make you stronger then trying to go it alone. We have number on our side. So see how they like that!!
Posted 05 March 2012 - 12:05 AM
Where are you? You doing okay? It's still Sunday, are you still at church? I doubt it, the pope is probably already in bed. Do you think he sleeps with his red sneakers on? Hey maybe if you sleep with red sneakers on we can call you Her Popeiness. Long time ago I sang for the installation of our new Bishop. After the ceremony I was formally introduced to our new Bishop (you know me ) I asked him what I should call him "Your Bishopness"? He cracked up and said I could just call him Bishop. Through the years if I sang at some religous function and he was there, he always remembered me. Not a good idea!
I just watched Celtic Thunder on pbs. Paul and Damiun left, but they have a couple new singers and it was a fantastic performance. It started out slow but then the show just got better and better. They are going on tour again I hope they come to Erie again. I've seen them 3 times they are great,and I think they will be just as famous as they were (before Paul and Damien went solo they made a huge mistake). They have a cute little boy with a lot of personality and talent, And a fantastic new Irish Tenor with a cute everything. (Whoops I ment great voice). Tomorrow I'm going to buy their new dvd Voyage it's great. I still haven't finished unpacking. If I thought I would be the same size in 2 years I wouldn't unpack. But elastic can only stretch so much.
Good Night Your Pammieness, Billie
Posted 05 March 2012 - 07:20 AM
I was up, sleep last night was elusive. Am thinkin' 'your poopiness' would be more in order if I was not convinced Sprycel was created with concrete dust. I love love love Celtic Thunder! I do not know who is who though, am going to have to look into which ones left and the newbies. My favorite was the guy with the shaved head, for me, he had the strongest and heaviest accent even when singing. I hope he is still there. I will review the new bod, uh, er, um, talent. There was a young one the last time I saw them, last year, a strong voice for such a young lad. Also had a fair younger lad with a surfer dude look, except he did not have a Californian accent. I must go hunt the for the new members and see who has left. You sang for the Bishop? I hope you didn't fall off his boat also. Billie, you tend bar, sing at church, go boating, fishing, have a dog, children, and worry about your husband......geez, I think I just found my new idol!
Your Poopiness er, uh, um, Pammieness
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