Week two began with no cramps, no itching, and no sleep again. and Tuesday has me with the hiccups. But not much to complain about. It will be early to bed tonight.

Itching is much better. Yesterday there was noticeable improvement, today not much left. Tomorrow is dex day, so will see what that brings this week.

It is Friday, 5th day of the new treatment cycle. I itch like crazy, mostly scalp, but legs and arms too. I do see I mentioned that during the first week of treatment last time. I did not mention when it stopped, so not sure how long to expect this to last. I am also pretty tired, and I mentioned that last time too. So I guess this is my normal reaction. Oh also my blood pressure has been quite low, and I made note of that too.

Starting back up on the Rev dex has not been as bad as the beginning, at least not yet. I had NO cramps Monday. Let's hear it for no cramps. But i did not sleep Monday night at all. Las night slept very well indeed. But now getting the itching I had back at the beginning. Presently the scalp itches like crazy. last time I changed shampoo for a while. I'll have to see if that helps.
But overall, not too bad.

Back on Rev Dex

At my visit with Dr. Aboulafia on October 4, we decided to stop the Rev Dex to facilitate the stem cell collection. I have been off them since that time. I had a successful stem cell collection November 17 and 18, and it has now been just over two weeks to get over that. So today I start the treatments again.
In the first months of my six month treatment period, I experienced cramps in the feet, legs, and hands on Mondays, the Dex days. Often the cramps came on just after noon. That got better in the later months, with few cramps, and actually getting some sleep. So I am wondering whether I am starting over, or picking up where i left off.
I'm happy to report it is after 6:00 PM, feeling fine

Stem cells done

Yes! The Friday collection was sufficient to complete the job. So in two tries, I made it. They are being kept frozen by Puget Sound Blood Center for later use if needed. Saturday the doctor pulled out the central line. No anesthesia, just snip the stitches and pull it out. Not too much pain. Pressure on the insertion site controlled bleeding. Platelets are low because of the collection, so he wants me off aspirin and Plavix until this next Friday.

I am set to re-start Revlimid and dexamethasone on December 5. I will take that as maintenance for the foreseeable future.

The central line went in Tuesday. Pretty simple procedure in radiology so ultrasound can guide placement. Mine is in the left subclavian vein, and it is threaded down through that to the superior vena cava. I have been surprised at how painful it is, and I'm glad for the vicodin given for pain control. Starting the day before the line placement, i have been given Neupogen which causes the marrow to produce more cells. It causes bone pain. I have been mostly unaffected by it, but noticed yesterday my hips are a little sore, but also I have had throbbing pain across the low back and chest, keeping time with my pulse. Pain pills for that too.

We started collecting stem cells yesterday, I got just under half of what I need, so I'm having my second collection today. Hope we get enough; I'd like ti be done with the central line.

Central line

Correction. I am not having a port, but a central line. So much I don't know.

A central line is large bore to handle the amount of fluid necessary. It will hang outside the body. They cover it with a plastic tape of some sort to protect the site, allow for bathing. Guess I don't want to wrestle, Seems it would be easy to catch this thing on something and have a real problem. Anyway, that's what's happening this week.

eye surgery, port placement

Last Friday, Nov 4, I had eye surgery. This was an epiretinal membrane removal. It had become wrinkled, which was distorting the vision. I also had a huge floater in the middle of my vision. As an outpatient under light anesthesia I had it removed. My recovery has not been swift, with much swelling and pain last night and this morning. I saw the doctor who prescribed some drops to reduce the pressure in my eye. They were magic, and i can see again. Not well, but it will slowly get better.

Next week I am getting a port placed for stem cell collection. I will be going in every day next week for a couple hours as part of the process.

Oh, forgot to mention that a pre surgery blood draw last week showed hematocrit down one point. I hope that was just within the margin of error for the test.

Remission

The protein results that I did not get yesterday came in today, and they are zero. That means REMISSION!

I have been on Revlimid and Dex for 6 months, and kept getting better, but no one expected such good results so quickly.

Wow, am I a happy guy.

Doing Great

Saw the doctor again today, and I continue to do great. Hematocrit was up to 39. Other labs good. He had not gotten the protein count yet, I'll get that number tomorrow night.

We decided to harvest stem cells. in that regard, he advised to stop the Revlimid, and the Dex too if I want. I want.

I'm travelling the next couple weeks, but when I get back I will meet with the doc and we will set it up. I'm scheduling around some eye surgery set for Nov 4.

The news continues to be good. My doctor gave me the results of my latest blood tests, which reveal the hematocrit up to 35 and monoclonal protein down to 0.2. He is still amazed at how well I am doing. Also I had a bone survey, showing no skeletal problems. Next month I will have a bone density study.

When we started treatment, the goal was to become transfusion independent. I have been so for 3 months now. A new goal is to get the protein down to 0.0. We will call that remission.

I am in the 2nd month of treatment with Revlimid and Dex. This past month I have been feeling quite well, with more energy than I have had in quite a while. Today I had my transfusions scheduled for 9:00 AM, and visit with my doctor at 11:00. The doctor met me in the waiting room and took me back to a normal exam room. He told me that he was cancelling the transfusion since my hematocrit was at 32. This was a drop of only 2 points over the month from the presumed 34 after my last transfusion. Further, my M protein dropped from 4.4 to 0.4. These are not great results, but phenomenal to use his word. Since no transfusion, I also can stop taking Exjade as iron levels have fallen.

Wow, 2 months in and dramatic results. I am very encouraged.

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.

Reading Sean's Burgundy Thread on the Myeloma Beacon. He mentions the $7,200 bill for 21 Revlamid tablets.

Okay, I get that the company needs to make a profit, that there is risk investing in research and trials and all the rest with no guarantee of a viable product. I have been a stock holder of some biotech companies, and to attract investment, the company needs to have return on that investment. Okay.

What I don't get is how all the money we donate gets used in helping these companies with their research. They attract millions of dollars in donations, come up with a product that may help us live longer, and charge us $350 a pill to get it. Really? All the donated millions and this crazy price? On the one hand, I feel like a fool having given them all this free donated money through the years when I could have invested in their company and maybe gotten a few dollars back in dividends. Now that I have cancer I almost feel cheated. On the other hand, I guess I need to feel lucky that first of all, I don't need the drugs yet, but beyond that, when I do need them there are options out there.

It is tough to be faced with a disease that will kill you with no treatment available. It is also tough to be faced treatment that leads to financial decisions whether to kill our family assets to live a little longer.

I'll cross that bridge when I come to it.

Seems the transfusion has finally kicked in. I don't know why it takes several days to start feeling the benefit, but that's the way it is. But doing pretty good right now.