Infusion Day 1...

...of a trillion. Like our federal govenment, I only think in trillions.

We arrived at the location nearest Big City that does infusions that is nearest our retirement cabin out here in the woods. We were asked to select a suitable infusion alcove. Each alcove contains the usual recliner, a guest chair, infusion pumps, counters and a sink! This is a big change from my last experience with infusion. The last time, there was one big room with 15-18 recliners, each with a guest chair adjacent. Today we got an alcove.

Nurse R met with us and carefully explained everything and proceeded with the infusions. I was given various preparatory medications mostly intravenously, but a few were administered orally.

Finally, after about noon, we got to the good stuff! As I have previously mentioned, the infusion is started at a very slow rate of flow and increased until side effects appear. In my case, side effects amounting to a red face and a slight fever, appeared at about 87% of the hoped for maximum flow. I had tolerated the infusion well at 75% and so, after consultations with the doctors and a nurse huddle, infusion was stopped until the redness subsided and the fever dropped. That took 15 minutes or so, during which I was up walking around, glad to be untethered and checking out the available free snacks!

Infusion was restarted and then finished at 75%. Aside from being tired after a long day, I feel very fine. If this is the extent of side effects, this process will be a relative breeze. However, just one swallow does not a summer make (thanks, Aristotle!), one infusion may not set a trend or set a precedent. Perhaps more side effects are coming. I hope not.

So far, so good!

I appreciate the calls and emails and FaceTimes from all of you. You words of encouragement lift my spirits greatly. I appreciate them!

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.

How's your bone marrow?

I visited with Dr. M to discuss the results of my bone marrow biopsy. He said that the marrow that was extracted contained roughly 35% cancer cells. While that sounds alarming to me and, I suspect, every one of us, he said it wasn't horrible like 85%. He said that the results don't suggest immediate treatment. He suggested watchful waiting.

One reason that doctors might recommend observation is that the indolent (slow growing) lymphomas can remain stable for long periods of time, and sometimes regress spontaneously. As well, new therapies are developed seemingly every day. It's feasible that better treatment protocols may become available when it is time to treat.

However, these readings do suggest that I be more closely observed by the doctor. He now will see me every three months instead of every six months. I am also to have a CAT scan to check the size of my lymph nodes and spleen. In the docs words, "We want to see if your spleen is the size of a football." Thankfully, we all still have a sense of humor about all of this.

He also recommended a bone density test which will be done at my primary care facility very nearby.

All in all, not a bad report. Any visit that ends with no immediate treatment required is a good visit!

The staff at Dr. M's office are so kind and so professional. I am lucky to have excellent health care practically at my door step.

A surprising visit to Dr. M

I had what I had hoped was a routine six-month follow-up visit with Dr. M, my oncologist. We have noticed that my numbers, M-spike, IgM, etc. were creeping up. So far, Dr. M has said that there was no need for any action, that we'd take action when the numbers became significantly higher.

Here is a quote from one of my prior blog posts:

Dr. M reports that the M-spike has risen to 0.7 which he classifies as insignificant. However, the IgM number is now about 1200. The expected normal reading is 37-286. An elevated IgM suggests that the immune system is busy fighting an invasion.

At my visit yesterday, the M-spike was reported at 1.1; The IgM was an eye-popping 2,077. Dr. M said that the numbers may still be reasonable; that is, we might still require no immediate action. He said, however, that the only way to know for certain if immediate treatment is needed or if we may safely wait is to do a bone-marrow biopsy.

Ouch!

We then scheduled the procedure for mid-March. I consider this less than the perfect gift for my upcoming birthday!

I will report back the results as soon as I know them.

Dr. M also reported that there have been two new drugs introduced in the past 2-3 years for my particular and rare type of lymphoma. One, at least, is a pill taken once per day.

Even if there are side effects to the pill, it is still preferable to driving to the infusion room for 5-6 hour treatments three times a week for a zillion weeks.

Aside from this startling news, I feel really good. We are looking forward to travel in April and again in September.

'Tis the season!

This is the season to give and receive gifts with our loved ones. In my opinion, the greatest gift any of us can receive is good health. Maybe not even great health, but good health; good enough to enjoy life with our loved ones, a walk in the park to enjoy the autumn leaves, a sip of wine and a goodnight kiss.

This is the season to be grateful to have my health, but it is also the season to run around to all my various doctors to get updated on my health status. Today I had a visit with Dr. M, my oncologist.

As I had blood tests a week before, the results were known and available to both of us.

His report to me was short and sweet. He said, approximately, "Well, the numbers are about the same. There is no significant change, so we'll see you in four months!"

That is, indeed, good news. "No change" is a report that I love to hear! "No change" means that I will not be changing my schedule to include three weekly visits to chemo. Best of all, "No change" means that I needn't change my plans to visit with friends and family over this holiday season.

I hope all of you will enjoy life to the fullest this season. I know I will!