Remission Anniversary.

I have reached my remission anniversary, now two years. I have been taking 25mg Revlimid all along as maintenance, along with Dex, recently reduced from 40mg to 20mg.  Next cycle we will start on 12mg Revlimid for maintenance.  All my protein readings have remained at 0.00.
My unrelated brain tumor is still causing vision symptoms, but I can get by, so I am taking the wait and see approach. Surgery seems too risky. When the time comes, gamma knife may be the choice, then after maybe 6 months to see if that improved symptoms, eye muscle surgery to align the eyes.

Wow, been a while since I wrote anything.
I guess that is because having  nothing new is boring.  And boring is good in my case. I am still in remission, it will be two years in October.  I continue on 25mg Revlimid; dex has been cut from 40 mg to 20 mg.  Side effects are few; insomnia and a little cramping on dex days.  Hematocrit is a little low at 35%.
Unfortunately, I have a new problem.  Double vision has been tracked down to either a schwannoma or a meningioma on the 3rd cranial nerve.  Yes a benign tumor deep in my head.  I'm just starting to figure out the options and ramifications of each. I can do: nothing, craniotomy and surgery, or gamma knife.  Maybe go with gamma knife because it sounds cool?  It is slow growing so I don't have to rush.  Sticking tools through my brain (surgery) to get in deep enough sounds like potential for problems.  Maybe the myeloma takes me out soon enough I don't even need to worry about it, but the remission seems to indicate otherwise.
Yes, this is my myeloma blog, but it will probably be more about this new challenge for a while because, for me at least, it is not boring. I was okay with boring.  I'm not quite as okay with this.
I have my med records on this ordered so I can start having some informed conversations with others. Wouldn't it be nice if there was consensus among all the experts as to what should be done and who should do it?

Happy anniversary to me.  October 5 last year I got the good news of being in remission,  And it continues.  Monthly blood tests still show 0.00 protein.  I continue 25mg Revlimid and 40 mg dex.  I know how lucky I am.

A milestone has been reached.
All my numbers continue to look great. While I will continue to take 25mg Revlimid and 40mg Dex on the first day of the first 3 weeks of a 28 day cycle, I do not need to see my doctor for 3 months. I will still get monthly blood tests, but the doctor will call me if anything needs to change.
Sounds pretty good.

THE doctor tells me everything is still good. M protein 0.00. He says jokingly I'm too healthy for him to treat me.
Yesterday started week 3 of cycle 2 on 25 mg Revlimid and 40 mg Dex. Felt sick most of the day, first time that has happened. Very bad stomach ache off and on. treated with antacid.
And almost no sleep last night. Feeling better today

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.