Well, my insurance won’t pay for a stem cell harvest unless it’s followed by a stem cell transplant, so I have a lot of thinking to do. If I were to pay for a harvest on my own, it would be about $10,000. That’s not something I can afford right now. I’m still in the Rev/dex EAP, so I have time to think about this. I’m responding pretty well, so I don’t want to change anything right now. My doctor agrees that SCT is something I have to some day, but he thinks the sooner, the better. And he did say they would try to get enough stem cells for 2-3 transplants for the future. I just have a lot to think about.
I have one more month to go of the high dose dex, which I’m now taking on a schedule of 7 days on and 7 days off. After the end of April, I’ll take what’s known as standard dose, which is 4 (40 mg each day) days at the start of the month or ten 4 mg tab once a week. For the past three years, I’ve taken it once a week, along with some other drug, or on its own, until it stopped being effective and I had to take more. I’ve never taken so much as I’ve had in the last three months though, and it’s wearing me out. I know I only have one more month to go, so I just have to hang in there. Dex causes me a lot of problems, as it does most people. I have stomach problems, thin skin, blurred vision, high blood sugar (on dex days), muscle weakness, PVCs, fatigue and about all the cushing’s symptoms you can get. I think the hardest thing about it is being so weak and shaky. If you’ve ever taken dexamethasone, you know what I’m talking about. You can’t even write because your hands shake so much.
When I see the doc on April 5th, I hope to find out if my insurance company has approved the harvest of my stem cells. If that’s the case, then I’d see when I can proceed with that. Since I’m in a trial, I’d have to drop out before I could have the Cytoxan (conditioning chemo), so I’d probably wait until Revlimid is approved by the FDA for the treatment of MM to do it. That way, I can stay on it for free as long as possible and then have it prescribed to me after the harvest if I need it. I’m so tired of feeling crummy that SCT almost looks good at this point.
It’ll be time for another blood test within a few weeks, and I was late in posting my last m-spikes, but here they are. Even though my quantitative IgA has gone down, you can see that the m-spikes remain about the same. I have had lower than this in the past, but .5 is better than 1.5, which is where it was when I started the trial, and much better than over 3.0, which is where it was when I was diagnosed. This is the report from the research nurse:
Hi Beth,Your M-spike from 3/8: 1st one in Beta Gamma= 0.3, 2nd one Gamma= 0.2.
These appear about the same as Feb. (0.29 and 0.18, respectively).
I called my doctor this morning and made an appointment to have him schedule an MRI for me. My right leg has been hurting for a few weeks, and I’m now having to take pain meds a few times a day. I had some xrays last week, which didn’t show any lesions. Hopefully, there’s nothing wrong, but an MRI has a better chance of showing anything else that could be causing the pain. Mostly, I worry about AVN. I also need to have him check my HGB A1C to make sure it’s not off the charts from all the dex.
In my 3 years since dx with MM, I have never had to take pain meds on regular basis. It’s just been on an as-needed basis, such as when I have a BMB.
I have a lot to report tonight. First, my IgA has gone down more from the Revlimid/dex trial. Today’s result was 584 mg/dL. It’s never been that low since my diagnosis. You can see all the results I have back so far by clicking on “My Labs” above.
Once my MM is at an acceptable low level, we will harvest my stem cells. The way it works there at Wake Forest, is like this: They are going to contact my insurance company to make sure they will pay for a harvest and store. Once I have that approval, they will have me in the hospital for 2 days while they administer a fairly powerful dose of Cytoxan. Then they will start me on Neupogen for 10 days, which I will inject at home. I’ll have blood tests here at home to make sure my counts reflect the administration of the Neupogen. It’s supposed to mobilize the stem cells by producing so many that they spill out of the bone marrow into the blood stream. It can cause bone pain when it starts to crowd the marrow. It can be managed with pain meds, which I already have. I’ll return to WFUBMC and have my stem cells harvested through a process called pheresis, where the blood will be drawn out through an IV in one arm, the stem cells removed and the blood returned through an IV in the other arm.
I had an xray to look for lytic lesions. The doc said that AVN is painful when active and at rest, so he didn’t believe it was that. No lesion was found. That was good news. It’s probably the sciatic nerve or some inflammation somewhere.
I lost 4 more lbs between my last appointment 2 weeks ago and today. Seems weird, being on so much dex! But I’m glad. I’m not even trying. I think it’s probably the GI problems I have. Also when I’m on the dex, I don’t have much of an appetite. I’m very thirsty though. It’s when I’m off the dex that I have a ravenous appetite. I just don’t let myself have anything that’s bad for me. During dex days, I stay off carbs as much as I can & sugar (always off sugar, for that matter).
I am going to a different dex schedule. Since I’m so miserable on my days off (exhausted!), I am going to do a tapered dose that goes like this:
Day 1: 40 mg
Day 2: 40 mg
Day 3: 40 mg
Day 4: 24 mg
Day 5: 12 mg
Day 6: 6 mg
Day 7: 2 mg
Days 8-14 off
Day 15 – 21: same as days 1-7
Days 23-29 off
This evening I was calling cancer survivors to let them know about the annual Relay for Life. I made about 30 calls and got in touch with about 20 people, I think. Everyone I talked to was looking forward to attending. It was good talking to them. We all have something in common. I got to talk to a few people who were at or near their 5 year anniversary of being cancer-free. I had to call one man back to ask one of my required questions because I lost track of what I was supposed to be doing.
Tomorrow I see Dr. Hurd at Wake Forest. I have to make some notes about what I need to discuss with him. Right after I went of dex last week (for the week off), I had a lot of pain in my right leg. I worry about AVN, having been on steroids for so long, and so much. I just have to have it checked out, because I’d rather complain about something that turns out to be nothing than end up having to have hip replacement surgery.
There’s also been a lot of buzz about Zometa and ONJ lately. I don’t think I should be having it any more than every 3 months anymore. I’ve been having it every month for 3 years now. Some doctors stop it for their patients after 2 years.
My next visit with Dr. Hurd at Wake Forest will be on Wednesday, March 8th. I’m hoping for continued good results from the Rev/dex EAP. The dex is a wicked drug though, and I’m beginning to doubt my ability to stick it out at this high dose for 2 more months. I’m on my rest week now, and am recovering, so I may feel differently in a day or so. As soon as I can, I am going to see about having my stem cells harvested. If you’ve read my blog much, you know I’m not in favor of having a stem cell transplant at this time, but I DO want to have my stem cells frozen so I can have more treatment choices.
I have some latest lab reports posted. You can see them by clicking on “my Labs.”