[CMLHope] Re: Procrit and myeloid Leukemia
I go to MDAnderson and was told the Medicare will no longer allow Procrit for CML. The insurance companies are taking medicares lead. I have my drugs through blue cross and blue shield and they are still covering it. My PA had to call the insurance company but she got it approved for six months more. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit and myeloid Leukemia
The problem is that Aranesp, Epogen, and Procrit -- three common drugs used to treat anemia and platelet problems -- have been under attack from the Food and Drug Administration because they have caused problems for some patients. Insurance companies are responding to the FDA warnings about these drugs. Here is an article: http://topics.nytimes.com/top/reference/timestopics/organizations/f/food_and_drug_administration/index.html?query=PROCRIT%20(DRUG)&field=des&match=exact --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets
Hey Suzzie, I love writing these posts, that way I know I'm still pumping blood. greenie **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets
Just like to add. I've been on Gleevec 8 yrs. and they have always been low. From: [EMAIL PROTECTED]: [EMAIL PROTECTED]: [CMLHope] Re: Low PlateletsDate: Fri, 29 Aug 2008 14:11:44 -0400 My platelets have always been low. 100-112 My Onc. in Moffitt tells me not to worry but I do. Date: Thu, 28 Aug 2008 12:19:04 -0700From: [EMAIL PROTECTED]: [CMLHope] Re: Low PlateletsTo: CMLHope@googlegroups.com Hi Greenie: I love to see your posts. God Bless You for all the things your fighting. My count is down to 109. It was up in the 200's all this time. I am waiting for my oncologist to send me some kind of slips for tests he wants me to do. I could have gone to his office by now to pick them up. I see your moving. Lots of Luck, and may God give you new promising improvements in your new house.--- On Thu, 8/28/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>Subject: [CMLHope] Re: Low PlateletsTo: [EMAIL PROTECTED]: Thursday, August 28, 2008, 1:38 PM Suzzie, I don't know if this will help but my Platelet count is in a range of 152 to 202 most of the time. greenie It's only a deal if it's where you want to go. Find your travel deal here.http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets
My platelets have always been low. 100-112 My Onc. in Moffitt tells me not to worry but I do. Date: Thu, 28 Aug 2008 12:19:04 -0700From: [EMAIL PROTECTED]: [CMLHope] Re: Low PlateletsTo: CMLHope@googlegroups.com Hi Greenie: I love to see your posts. God Bless You for all the things your fighting. My count is down to 109. It was up in the 200's all this time. I am waiting for my oncologist to send me some kind of slips for tests he wants me to do. I could have gone to his office by now to pick them up. I see your moving. Lots of Luck, and may God give you new promising improvements in your new house.--- On Thu, 8/28/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: From: [EMAIL PROTECTED] <[EMAIL PROTECTED]>Subject: [CMLHope] Re: Low PlateletsTo: [EMAIL PROTECTED]: Thursday, August 28, 2008, 1:38 PM Suzzie, I don't know if this will help but my Platelet count is in a range of 152 to 202 most of the time. greenie It's only a deal if it's where you want to go. Find your travel deal here. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit and myeloid Leukemia
Hi Gail: If your doctor says that you need the Procrit for possibly low platelets, or anemia then you might have to put in an appeal with your insurance company. I am so fed up with the insurances. The oncologist who has been taking care of me since day 1, now does not take my insurance. I am paying double now, and the hospital he works out of does not take my insurance. I will have to be referred to another Oncologist, if I develop any problems. The system really stinks..You have to fight for everything. I have learned that through the years. Good Luck Gail Suzzie --- On Wed, 8/27/08, Gail_in_MissionViejo <[EMAIL PROTECTED]> wrote: From: Gail_in_MissionViejo <[EMAIL PROTECTED]> Subject: [CMLHope] Procrit and myeloid Leukemia To: "CMLHope" Date: Wednesday, August 27, 2008, 6:11 AM Hello, I was diagnosed with CML in May 2004. Have been receiving Procrit weekly for all this time. Suddenly my insurance company has decided to deny a refill of my prescription because they say procrit is not indicated for myeloid leukemia. Anybody know why? What arguments can I use when appealing this decision? --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets
Thanks Angie: I am on Gleevec 8 years, and in total remission for 71/2. We are pretty close here. Everyone has been responding, and making me feel much better. I do not know what I would do, if I did not have people who truly understand what we are going through. Thanks Again --- On Thu, 8/28/08, ANGELYN ESDERS <[EMAIL PROTECTED]> wrote: From: ANGELYN ESDERS <[EMAIL PROTECTED]> Subject: [CMLHope] Re: Low Platelets To: CMLHope@googlegroups.com Date: Thursday, August 28, 2008, 3:24 PM I had a platelet reading of ONE in January. Yes, one. All my other blood chemistry levels were okay except for low hemoglobin. They gave me three infusions of platelets that vanished upon entry. Two infusions of IVIG made no change in the condition. Finally, it was blamed on a lupus flare, and I was put on 100mg per day of prednisone. This returned all systems to normal. I know when my platelets are falling again because I get petechiae (unraised red blood spots under the skin...painless, and do not fade in colour when pressed on) all over the place... I can look like I have been in a cage of wildcats. Then, I up my prednisone and things get better. They did not blame the plummeting platelets on CML or Gleevec. I have been on Gleevec for 7½ years now and in total cytogenic remission for 7 years. A minimal dose of prednisone (5 mg per day) keeps the lupus under control. Angie in Canada --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets
Hi Greenie: I love to see your posts. God Bless You for all the things your fighting. My count is down to 109. It was up in the 200's all this time. I am waiting for my oncologist to send me some kind of slips for tests he wants me to do. I could have gone to his office by now to pick them up. I see your moving. Lots of Luck, and may God give you new promising improvements in your new house. --- On Thu, 8/28/08, [EMAIL PROTECTED] <[EMAIL PROTECTED]> wrote: From: [EMAIL PROTECTED] <[EMAIL PROTECTED]> Subject: [CMLHope] Re: Low Platelets To: CMLHope@googlegroups.com Date: Thursday, August 28, 2008, 1:38 PM Suzzie, I don't know if this will help but my Platelet count is in a range of 152 to 202 most of the time. greenie It's only a deal if it's where you want to go. Find your travel deal here. --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Low Platelets Suzzie
Hi Skip: Thank You for giving me a little peace of mind. My worry was that they would stop my medication, and I am afraid of the cancer cells multiplying well I am off the Gleevec. How long have you had Leukemia? I went 7 years without low platelets, and thats why I am concerned. Any information you can give me, I really appreciate. Thank You So Much Suzzie --- On Thu, 8/28/08, Skip Duffie <[EMAIL PROTECTED]> wrote: From: Skip Duffie <[EMAIL PROTECTED]> Subject: [CMLHope] Re: Low Platelets Suzzie To: CMLHope@googlegroups.com Date: Thursday, August 28, 2008, 2:37 PM Hi Suzzie I have been having low platelets now for a long time I receive transfusions of platelets it is sometimes from the drug. They do not worry until your counts is well below 50,000 in my case when my count falls below 10,000. Sometime they stop meds for while to allow the platelets count to increase.. I have had no trouble and my platelet counts have fallen down to Zero yep.. Zero. Ask Zavie he asked his doctor about my counts and there is no trouble.. hope this explanation helps SkipD Dx'ed 30 years ago. Definition Thrombocytopenia is the medical term for a low blood platelet count. Platelets (thrombocytes) are colorless blood cells that play an important role in blood clotting. They stop blood loss by clumping together and forming plugs in blood vessel holes. If for any reason your blood platelet count falls below normal, this is called thrombocytopenia. It often occurs as a result of a separate disorder, such as leukemia or an immune system malfunction, or as a medication side effect. Complications may range from none to severe bleeding. Thrombocytopenia usually improves by treating the underlying cause. Sometimes, medications or surgery can help treat chronic thrombocytopenia. If bleeding is severe, you may need a blood or even a platelet transfusion. --- On Tue, 8/26/08, Suzzie <[EMAIL PROTECTED]> wrote: > From: Suzzie <[EMAIL PROTECTED]> > Subject: [CMLHope] Low Platelets > To: "CMLHope" > Date: Tuesday, August 26, 2008, 6:13 PM > Hi Everyone: I am very upset today. I follow-up on > everything with > regard to my blood work, due to various other health > issues. I have > never had a problem with the Gleevec doing its job. I have > had lots > of side effects. I was happy because I just got my PCR, > and it was > negative for the 7th year. I noticed my platelets are > dropping > steadily, and it was not addressed till I mentioned it. > I see a lot of you have had high platelet counts, but > has anyone > had low platelets. My doctor said they could be clumping > together > from the Gleevec. I am also very anemic > I know a lot of you are very up on blood work meaning. > Could > someone please post back to me on this issue. Having a > very bad day. > 3 Panic attacks already. > > Suzzie > > --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit and myeloid Leukemia
Hi Rosemary: My doctor never suggested Procrit, and I know someone who was
taken off the Procrit with her CML because of possible tumors. You know you
just do not know what to believe or what to do half the time. I have had a low
HGB, HCT, RBC, all these years, and my oncologist said he was not giving me
anything until I really dropped low. They have stayed stable. Thank You
Suzzie
--- On Thu, 8/28/08, Rosemary Delaney <[EMAIL PROTECTED]> wrote:
From: Rosemary Delaney <[EMAIL PROTECTED]>
Subject: [CMLHope] Re: Procrit and myeloid Leukemia
To: cmlhope@googlegroups.com
Date: Thursday, August 28, 2008, 1:59 PM
#yiv843141563 .hmmessage P
{
margin:0px;padding:0px;}
#yiv843141563 {
FONT-SIZE:10pt;FONT-FAMILY:Tahoma;}
Hi,
I had the same problem. It doesn't make sense but for people like us this is
off label use. Basically the company never did studies in leukemia so it is
not on the label. I was at my Hem/Onc the other day and the last time my hem
was normal was due to Procrit. You can try sending them you lab values on and
off Procrit.
> Date: Wed, 27 Aug 2008 03:11:47 -0700
> Subject: [CMLHope] Procrit and myeloid Leukemia
> From: [EMAIL PROTECTED]
> To: CMLHope@googlegroups.com
>
>
> Hello,
>
> I was diagnosed with CML in May 2004. Have been receiving Procrit
> weekly for all this time. Suddenly my insurance company has decided
> to deny a refill of my prescription because they say procrit is not
> indicated for myeloid leukemia. Anybody know why? What arguments can
> I use when appealing this decision?
>
>
>
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[CMLHope]
A support group of http://cmlhope.com
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[CMLHope] Re: hi potassium in blood? to suzzie
Hi Suzzie and so sorry to hear about your platelets. Mine are just the opposite; too high. The only time I had low platelets was in the beginning and they took me off all meds until they came back up. How are your WBC? Are you going to Moffit? I have been having a big problem with my potassium, to high. My PP was very concerned and said I might have to go into the hospital if they can't bring it down; well it came down, but they had me take more meds and it has made nauseous. I can't remember the name but it is a sweet liquid. I wonder why we have to tell our oncs what is happening to us; it seems they should be on it, but I know, I just had a visit with my Onc and I wanted him to do a PCR or something, and he said just wait until the potassium problem was solved; bottom line; after I left his office, I felt he had done nothing for me; no advice or etc. My WBC is 15 and I think he should have at least addressed that problem. I will keep you in my prayers, so hang in there Warrior and let me know what's happening, Blessings, Jeanie<3 In a message dated 8/28/2008 9:39:50 A.M. Pacific Daylight Time, [EMAIL PROTECTED] writes: Hi Jeanie: We need to pray for each other. I am having a bad day too. My Platelet count is dropping steadily month bymonth. My Oncologist never picked-up on this, and I had to send him a Fax to show him the pattern. Now he wants me to get more testing. I need someone who has had this problem. You have been through so much yourself. Who would be a good one to ask. I sent a message to Trey, because one of the girls told me he probably could help. Suzzie **It's only a deal if it's where you want to go. Find your travel deal here. (http://information.travel.aol.com/deals?ncid=aoltrv000547) --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
[CMLHope] Re: Procrit and myeloid Leukemia
There are certain times when one has to ask the DOCTOR to write or telephone the insurance company and make the case for the treatment that they want to deny. The few times my insurance company has balked on paying for a drug or procedure, I've asked the doctor's office to talk to them and explain why it is necessary. It sometimes helps to ask to talk to a supervisor who may have the responsibility of thinking and not just following the script. Vivi On Aug 27, 6:11 am, Gail_in_MissionViejo <[EMAIL PROTECTED]> wrote: > Hello, > > I was diagnosed with CML in May 2004. Have been receiving Procrit > weekly for all this time. Suddenly my insurance company has decided > to deny a refill of my prescription because they say procrit is not > indicated for myeloid leukemia. Anybody know why? What arguments can > I use when appealing this decision? --~--~-~--~~~---~--~~ [CMLHope] A support group of http://cmlhope.com - You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~--~~~~--~~--~--~---
