I have not written in a very long time. I have forgotten how to use this app! I also want to note that every time I send the link to this site to someone, a random picture of me from one of my posts comes up. It is so weird and I don’t know how to fix it! I don’t even look like that anymore and it’s basically a close up of my nose! So sorry about that - did not mean to make that the focal point/representation of my blog!
Anyways- I am writing to talk about my experience with gvhd because I find it odd. I have had these muscle spasm cramps for a few years now. I have also been really tired - can’t do anything without having to lay down after. It had become worse so I took leave from work around October. At the end of the month I noticed a weird rash underneath my boobs. My doctor didn’t know so she gave me a yeast cream. I go to a dermatologist and she has it biopsied. She thinks it’s gvhd but it comes back as eczema. I tell my sct doctor and he doesn’t believe it’s eczema so he has me send it over to them. Now I am getting a bill from both places when it was a misdiagnosis and when it got to my sct doctor - the sample was too small. So my sct doctor tells me it doesn’t matter he knows it’s GVHD. Also, during the previous six months, I have noticed my stomach becoming really weird. It’s fatter/harder than usual and it’s lumpy. Like does not feel smooth. This is not normal. I asked a bunch of doctors and they had no clue. My sct doctor knew right away it was gvhd and it’s attacking my subcutaneous fat. So that sucks! He decides to prescribe me imbruvica because I have already taken too much prednisone in my life. He tells me the insurance will sent and then he will appeal and I will be covered. He sends over to Aetna specialty pharmacy. A week later I hadn’t heard from them so I call over. They said they hadn’t received it, it’s not on my formulary, and they don’t even make it. They tell me diplomat pharmacy does. So I have my doctor send over to them. A week later it’s still in processing and hasn’t even been to the insurance check yet. A little over a week later I call again and the rep says it needs prior authorization. My doctor says he hadn’t received a form from them. The rep says she will work on it. About a week later, I finally get the call that my insurance approved it but the co-pay is $70/month! Luckily, they hooked me up with some assistance program specifically for this medication which brings my copays down to $10 a month (phew!). Having cancer is hard enough in America and then survival meds and scans just make you broke for life. Don’t even get me started on the cost of healthcare in the US.
So I received the medicine finally. It came with a welcome packet, an anti diarrhea med, anti nausea med, hand cream, timer, two packs, brochures and more (I find this odd). I tried to google to find other people with gvhd experince with this medicine but couldn’t find anything. It reminded me of when i was looking for testimonials of follicular lymphoma patients who have gone through stem cell transplant and couldn’t find any. I figured I could now chronicle my journey with this medicine. It’s making me nervous that the side effects are diarrhea, nausea, muscle spasms (one of my main complaints) and tiredness (another main complaint). I am hoping this medicine gives me my life back. And a somewhat normal stomach. I will keep you updated. I am off to take my first pill with a full glass of water. Wish me luck!
Anyways- I am writing to talk about my experience with gvhd because I find it odd. I have had these muscle spasm cramps for a few years now. I have also been really tired - can’t do anything without having to lay down after. It had become worse so I took leave from work around October. At the end of the month I noticed a weird rash underneath my boobs. My doctor didn’t know so she gave me a yeast cream. I go to a dermatologist and she has it biopsied. She thinks it’s gvhd but it comes back as eczema. I tell my sct doctor and he doesn’t believe it’s eczema so he has me send it over to them. Now I am getting a bill from both places when it was a misdiagnosis and when it got to my sct doctor - the sample was too small. So my sct doctor tells me it doesn’t matter he knows it’s GVHD. Also, during the previous six months, I have noticed my stomach becoming really weird. It’s fatter/harder than usual and it’s lumpy. Like does not feel smooth. This is not normal. I asked a bunch of doctors and they had no clue. My sct doctor knew right away it was gvhd and it’s attacking my subcutaneous fat. So that sucks! He decides to prescribe me imbruvica because I have already taken too much prednisone in my life. He tells me the insurance will sent and then he will appeal and I will be covered. He sends over to Aetna specialty pharmacy. A week later I hadn’t heard from them so I call over. They said they hadn’t received it, it’s not on my formulary, and they don’t even make it. They tell me diplomat pharmacy does. So I have my doctor send over to them. A week later it’s still in processing and hasn’t even been to the insurance check yet. A little over a week later I call again and the rep says it needs prior authorization. My doctor says he hadn’t received a form from them. The rep says she will work on it. About a week later, I finally get the call that my insurance approved it but the co-pay is $70/month! Luckily, they hooked me up with some assistance program specifically for this medication which brings my copays down to $10 a month (phew!). Having cancer is hard enough in America and then survival meds and scans just make you broke for life. Don’t even get me started on the cost of healthcare in the US.
So I received the medicine finally. It came with a welcome packet, an anti diarrhea med, anti nausea med, hand cream, timer, two packs, brochures and more (I find this odd). I tried to google to find other people with gvhd experince with this medicine but couldn’t find anything. It reminded me of when i was looking for testimonials of follicular lymphoma patients who have gone through stem cell transplant and couldn’t find any. I figured I could now chronicle my journey with this medicine. It’s making me nervous that the side effects are diarrhea, nausea, muscle spasms (one of my main complaints) and tiredness (another main complaint). I am hoping this medicine gives me my life back. And a somewhat normal stomach. I will keep you updated. I am off to take my first pill with a full glass of water. Wish me luck!