I have a rare form of Neuroendocrine Cancer called Pheochromoctyoma with Carcinoid syndrome. That's when tumors actively dump massive amount of epinephrine and dopamine in my body. I was diagnosed late and my tumors are considered inoperable. The only way to treat them is with radiation therapy. I exhausted that treatment as it has metastasized to my spine and liver. The only treatment available to me now is palliative. Which means trying to manage symptoms for quality of life. My treatment includes monthly Lanreotide injections and ongoing PRRT treatment which is injecting nuclear medicine to target the tumors. Unfortunately, a side effect of both treatments is type II Diabetes.
Doctors recommend PRRT for patients diagnosed with Advanced Metastatic or Progressive Neuroendocrine Tumours (NETs); also for NET patients who are ineligible for surgery; and also for those NET patients who are unresponsive to other modes of treatment. While, PRRT is a palliative treatment, it does help in alleviating the symptoms, slow or in some cases even stop the tumour progression thereby improving not only the quality of life, but also the survival rate.
After years of dealing with the terrible symptoms and therapy that did little to help I found myself unable to work and am totally disabled. I receive SSDI and Medicare. I have a medigap policy to lessen the out of pocket cost. The Lanreotide shots were covered at 100% until this year. Then all of a sudden I was told I had to pay 20% of the cost of those shots plus coinsurance to cover what Medicare doesn't. That's $1,400 per month! No reason for the change. No EOB to show the breakdown and to add further insult the provider requires the copay prior to treatment. I have had to skip several treatments because I just can't afford to pay both medications and rent. I was also just prescribed insulin/januvia and the monthly cost is $235. I couldn't afford it so am hoping to get help. Some manufacturers offer help with prescription costs but Medicare prohibits discounts to its patients. Without my monthly injection/Diabetes medication I am completely home bound and unable to really participate in life. I'll be honest, I am exhausted from fighting this illness. Joy seems to have dissappeared and have been questioning why I keep fighting and then the depression takes hold.
I am asking for help with one month's treatment $1,635.00. I know it's a lot to ask for. I would really appreciate any help, good thoughts, and good vibes sent my way. Daisydog and I thank you so much for reading.
If you can, send help via paypal.me/… or Venmo: @Stacey-Carpio