Yesterday was the first blood test/transfusion since I started my Rev/Dex treatments three weeks ago. Usually my hematocrit drops to 25, this time it dropped only to 28. My M protein had risen to 4 in the past, this time it dropped to 3.4

It is still too early to say this is anything more than an aberration, but I will take it as positive news. I'm pretty excited about this.

Day 7, end of the first week. Could be worse. I have had a little nausea, very tired, and I itch. On my dex day, I had insomnia. Today my blood pressure is very low, 85/58, causing lightheaded, dizziness.

Dex again tomorrow, not set to see the doc for almost 2 more weeks.

I have taken my first dose; 40 mg dex and 25 mg of Revlimid. Aside from not sleeping last night, so far, so good

For over two years I have had it pretty good. I have been able to largely ignore my illness. The fact that I smoldering myeloma has meant no cancer treatments, only treatment of symptoms by giving me three units of red blood cells about every six weeks.

But the times they are a changing. I am needing more blood. My hematocrit has again fallen to 25. It will be only 4 weeks until my next transfusion. This is a significant amount of blood. And the side effect of iron buildup now needs treatment. Exjade is an iron chelating agent that is expensive. Thankfully, I have good insurance that covers almost all of the $6,700 monthly cost.

But we have decided that there has been enough progression that treatment of the disease is now needed. I will be starting on Revlimid and and dexamethasone. the cost of Revlimid is apparently about the same as Exjade. So just those two will run better than $13,000 per month!

Makes me think about health care. How much is my life worth? How much is any life worth? There are many who can not afford this treatment. What should be done about that?

We are starting with this two drug combination. It's about tradeoffs. Adding a third drug would be perhaps effective more quickly, but it would be IV and tie me to coming in for treatment every two or three days. Also side effects would likely be worse. So to balance treatment with quality of life, we will start with two.

I can't help thinking this decision will define the rest of my life. Is it the right one?

It has been an interesting few weeks. My last transfusions went fine at the beginning of the month on a Monday. Blood pressure was in a normal range throughout. Wednesday morning we were leaving for our annual Mexico vacation.

Tuesday my blood pressure spiked, was over 200. during the day it went down to an almost normal 180, but in the evening went back up. Even in bed it was over 200. I developed a headache and chest tightness. What to do. I didn't want to make my wife miss vacation. I also did not want to have a stroke or heart attack tonight or on the plane tomorrow, or in the little Mexican town we were going to. Just before midnight I woke my wife to discuss what was happening and what we should do. We decided I should go to the ER at Virginia Mason, where they have all my records of heart disease and myeloma.

With some nitro and morphine they were able to get my symptoms under control and there were no enzymes indicating heart attack, but they wanted me to stay overnight. There went out flight to Mexico. They had me on heparin and kept monitoring my enzymes and had a heart monitor on.

Next day my headache was back and I became nauseas, vomiting and continuing with dry heaves. A pretty miserable day. By Thursday I was much better, actually had some food. Cat scan for pulmonary embolism and cardiac stress test were normal. An additional blood pressure medication had been added and BP was under control. I was discharged Friday morning, and we booked our Mexico flight for Sunday morning for whqat was left of our two weeks.

The entire time in Mexico my BP was great.

The transfusions have caused my iron level to rise to a concerning level, so a drug called Exjade has been prescribed. Among potential side effects are kidney damage, vision damage, and hearing loss. Great. So I had tests to establish a baseline for the vision and hearing. I already have quite a bit of hight frequency hearing loss, so I am considering hearing aids. Those are not cheap, and not covered by insurance.

BP has remained petty good.

I just started the Exjade yesterday, so will have to see what, if any, side effects I have. I seem a little dizzy, I'll have to monitor.

It was only 4 weeks since my last round of transfusions when I got 3 units yesterday. I would have had them at 5 weeks, but I will be out of the country for two weeks, so we went early rather than late. hematocrit had dropped only to 28, so the three units should bring me up to 37, higher than I have been for a couple years. I'm looking forward to increased energy.

Other good news is that total protein has remained unchanged, in fact all my labs are pretty stable, with the exception of ferritin. Rising iron levels are a side effect of transfusions. Too high can damage the heart and kidneys. So there is a drug called Exjade developed by Novartis which will bring those levels down. Apparently the drug is quite expensive, and the manufacturer has a program to help with the costs. I'm not sure how that is going to work out.

My other issue right now is blood pressure. I have controlled my blood pressure for over 20 years with various medications. Recently we have had to adjust dosage upwards due to higher pressure. I have had a sinus infection, on Amoxicillin, I don't know if that has any effect. But today my pressure was astronomical. I woke up with a headache, couldn't get my monitor to give me a reading. Thought maybe it was low batteries, so changed them, but no difference. I decided to inflate the cuff higher, and finally got a reading; 202/125. You kidding me? I laid down, to ease any stress and give my meds a chance to get into the system. An hour later reading was 211/121. Gradually it started coming down, and by 11:00 AM I was in the high-normal range at 137/96. It pretty much hung there the rest of the day until 6:30 tonight when I'm back up to 166/100, with a little headache.

So off I go, wishing I had a little longer to get this under control before I go to Mexico, but I did talk to my doctor, and we can adjust the med further. So I'm taking plenty to add a dose here and there to keep this down. The thought is that the transfusion yesterday added bulk to the fluids in the system, and therefor more pressure. And it should adapt and get back under control soon. I hope.

It has been 6 weeks since my last round of transfusions, during which time I had a great road trip. I drove from Seattle, down through eastern Oregon, southern Idaho, eastern Nevada, Arizona, and southern and eastern California. I put over 3,700 miles on the truck. I visited many friends, and did a good deal of hiking. One day I hiked 10 miles with 2,300 feet of elevation gain; two days later I hiked 6 miles and 2,600 vertical. Then two more, each a bit less, before I want to California: 5 miles with 1,500 and then 3 miles, 1,300 feet. In California I did three hikes, from 4 to 6 miles, with up to 1000 feet of elevation. Since I was 5 weeks into my 6 week transfusion schedule, I was pretty worn out by the hikes. The last week I spent driving home.

When I got my labs, my hematocrit was down to 25, lower than it has been. But my doctor is pleased that my M protein, iron and other labs remain unchanged, if not a little better. I guess vacation and hard exercise pay off.

So we have agreed to continue as we have been. He wants me to get the next transfusions at 5 weeks rather than 6. Since I have a Mexican vacation coming up at the 5 week schedule, I will get the next ones at 4 weeks. I guess I am doing as well as I can hope for.