It’s a beautiful Colorado summer day. The sky is blue from horizon to horizon. The temperature is a comfortable 80 or so. Just had a four and a half day walk to clear my head and enjoy being here.
But, I saw my urological surgeon for a checkup this morning. The bladder cancer has come back. I will have to undergo the same procedure that I had one year ago and probably some other treatments after that to try to prevent recurrence. I was told that there is a 50% chance of recurrence a year ago. My brother David has also had all of this happen to him just six months ahead of me. For both of us, there is a high survival rate if it is treated quickly.
In addition, I had a blood test for blood sugars today and the results are already back. Slightly higher than the maximum range. There will be all kind of diabetes noise from the doctors. I will have to make sure that they understand that Sandostatin LAR that is injected into my rear end every 28 days for Carcinoid cancer is known to cause a lot of variance in blood sugar level in some patients. I am thinking of trying just one injection a month meaning 20mg rather than 40 mg a month since my symptoms are very little or non-existent right now. The only troubling thing is that Sandostatin has now been proven to slow the growth of Carcinoid tumors as well as treat the symptoms.
As of January this year, another drug called Lanreotide (trademark Somatuline) was approved for slowing the growth of Carcinoid cancer and is known to control symptoms in many patients. I mentioned it to my oncologist a few month ago and it seemed that she had never heard of it and thinks that it is not in my HMOs formulary. I may need to start a crusade for them to accept that. It is known to work often for patients who cannot tolerate Sandostatin because it makes them sicker. Specialists are beginning to switch patients who have experienced atrial fibrillation (like me), varying heart rates (like me) and varying blood sugar levels (like me) because all those can be side effects of Sandostatin. The injections are supposed to be less painful as well. I wonder how hard I will have to work to get that.
I am co-leader of the Colorado Carcinoid Cancer Support Group (www.cccsg.net). Last week 30 of us had dinner with Dr. Eric Liu, a renowned specialist in carcinoid who just moved to Denver and has started a carcinoid clinic. There are so few clinics like this and he is already well known… Patients are already planning to come to Denver from all over the country. I am planning to find a way to get my HMO to refer me to him (and pay) to form a treatment plan. If surgery is a necessity, I will again find a way to refer to him (and pay) because he is a highly skilled surgeon who has handled only carcinoid patient for years. He sees more carcinoid patients in a week than the clinic I go to with six oncologists sees in a year. For my health, if I have to, I will leave the HMO and seek other insurance. This is difficult because in all ways but the rare disease (even there they are better than many and I feel they care) I have been well cared for and I would lose all those doctors. Leaving my insurance would be impossible were it not for the Affordable Care Act and Medicare because no insurance would voluntarily cover a someone with a rare and expensive cancer.
I guess we will have to wait and see how all of this works out.