24 replies to this topic

[Trey]

Regarding the "Benefits for Orally Administered Anticancer Medication" issue, these are individual state laws, not enacted by or related to ACA.  National legislation was introduced several years ago but never passed. The legislation in the affected states generally says that "oral chemotherapy drugs" must be covered at a rate no less favorable than IV chemotherapy drugs.  It usually applies to private insurance and state employees, not Medicare or certain group insurances.

http://blog.dana-far...why-it-matters/

https://www.prescrip...hemoParity.aspx

Edited by Trey, 03 February 2015 - 05:24 PM.

[scuba]

I've started my cessation journey ...

 

but ... not like I thought I was going to start.

 

I stopped taking my Sprycel in anticipation of my 10 March PCR test. My wife convinced me to stop every other day first and see how the results come out. She is against me stopping completely so we compromised. I take 20 mg. one night and then I am off the next night. I will do this until March 10th and then take the PCR test.

 

I can tell you that going off the 20 mg. Sprycel for one night made no difference in how I felt - but it was tough to ignore the bottle sitting next to the bed. It screamed - take me - take me - take me. And had nothing to do with Valentines day coming up.

 

When I resumed my 20 mg. the following night - I developed a minor headache. The same headache I had when I first started Sprycel years ago. It was minor and faded after a few hours, but it was a definite Sprycel headache since my diet is unchanged. I look forward to not taking Sprycel the next night and keep alternating. My effective dose is now quite low (10mg per day averaged).

 

And so my experiment begins. Interesting to be your own guinea pig, but I must check out my unscientific hypothesis.

[pammartin]

Best of luck as you continue your personal journey.

[ksh]

I am just in the beginning of my journey and have not received any confirmation.  I don't know if I am receiving proper  care.  I just really do not know what to do.  I certainly appreciate any help.  The story:

I had previously been treated for elevated IGE >4,000 with xolair. I recently had an episode where I thought maybe I was having a stroke and walked into my G.P.'s office and just said I am not feeling right. My face was tingling and was having trouble talking and thinking, my hands were tingling and I was not able to move around properly.  I was told I was having a panic attack and to go home and take a clonazepam.  Upon return of blood workup hypercalemia with hypo parathyroid abnormal liver and kidney results.  I was called back into the office and it was explained to me that they were going to do more blood-work and depending on that result maybe a PET scan.  It has been over a week and no response on the second round of blood-work. 

I feel very scared and lost.  I don't know to seek out another doctor for another opinion and even where to find one and what kind of doctor to see.  I have severe bone pain but was told it was from degenerative disc disease and arthritis.  I just turned 42.  I have been suffering from migraines for over a year and get horrible vertigo and vomiting so I have been under treatment for the diagnoses.  I have done some research and seems this all fits for IGE Myeloma.  I had blood in urine a few times on urinalysis and afraid my kidneys are not doing well.

So, I have yet to recieve treatment for the symptoms I have been having and find that a bit inadequate treatment.  Fatigue and pain is getting the best of me while I just wait for results.  I truly appreciate any help or guidance.  I am new to the website and it seems to offer alot.

[Trey]

ksh,

You are not in the right place.  Elevated IgE is most often skin or allergy related but we cannot help with those issues or myeloma.

 

If you think you have some type of L&LS disease try here:

http://community.lls...or-a-diagnosis/