Patients, start your infusions!

Arrangements are in place to start infusion in early December. The sessions are on two successive days. The length of time it takes for each depends entirely on how well I tolerate it. In essence, if there are few side effects, they will increase the flow rate until the side effects are moderate. If the side effects are severe, they will slow the flow rate.

Having done this previously, I expect the process to take most of the day, that is, 5-6 hours. I plan to take a laptop and entertain myself as well as I can when I’m feverish, nauseous, et al.

I opted to get started before Christmas as the sooner I start, the sooner I finish! I’d love to have this process done and full recovery made before vacation season.

A decision is made.

My adorable wife and I have been discussing my treatment options. She is included in the decision because she has been by my side supporting me throughout this ordeal; not just the recent onset of symptoms, but right from the beginning, some ten years ago. Whatever is decided, therefor, involves her as well.

I was given two practical options by the doctor. First, an oral medication taken once per day for life. The medication is very expensive and my cost, even after insurance, would be quite high.

The second is an infusion done on two successive days once every four weeks for six cycles totaling 24 weeks. Once the treatment is done, I will be finished, done, released, free at last, until and unless my M-spike, IgM, anemia, weight loss, et al return. When I had the same drugs previously, I was symptom-free for about ten years.

The infusion therapy is covered by Medicare as treatment rather than a drug. The ultimate cost to me would be relatively low and, of course, paid for in 24 weeks.

The infusion therapy uses the same drugs that I had previously. I suffered very uncomfortable side-effects as you know if you re-read the earliest entries in my blog..

I have decided, all things considered, to undertake infusion. I will communicate my decision with the doctor’s very helpful patient navigator tomorrow.

I accept that I am trading off possibly worse side-effects for one and done.

I don’t yet know of course, if I will start treatments immediately or after the holidays. I will post when I know.

New challenges and a new doctor

I have not been posting as frequently as usual because I have been faced with very difficult challenges. As I have previously reported, the numbers shown in blood tests that indicate the presence and vigor of my lymphoma have been increasing steadily. My IgM number is now 2093; the normal range is 45-281. Of greater significance is that the number just keeps climbing; one year ago, it was 1359 and two years ago, it was 700.

I have also suffered rather alarming symptoms related to the anemia that accompanies lymphoma. At the start of this year, I weighed 178; on October 15, I weighed 163. I have been tired and feeling weak.

At my regular three-month visit with the doctor, he shrugged off the symptoms and said that he didn’t recommend treatment at this time. I had, for some time been losing confidence in this doctor. When he announced that his practice had recently hired a specialist in lymphoplasmacytic lymphoma, I jumped at the opportunity to switch my care to a new doctor.

I visited the new doctor a few days ago. He recommends treatment and offered three possible therapies; each with its own set of side effects and costs. The treatment he recommends the highest is an oral medication that has a retail cost of...fasten your seatbelts, gentle readers...$14,000 per month.

Of course, the subject of insurance, in my case, Medicare Part D, comes into question here. As luck would have it, we have just completed a study of our Part D insurance and decided to change to a different carrier. You can imagine my anxiety when I telephoned the new carrier, as of January 1, to ask what my out-of-pocket would be for said prescription. It is not a happy number.

I am still evaluating my options. I promise to post more as I know more.