Author: Beth

I was diagnosed with MM in January of 2003. I underwent various treatments, including thalidomide/dex, revlimid/dex, dex alone, a clinical trial of CNTO 328, and Velcade, Doxil and dex until late August, 2007, when I had an autologous stem cell transplant after high dose melphalan. I experienced what's known as a very good partial response (VGPR). Since then, my myeloma has been stable.

My Rev/dex update

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I started the Rev/dex EAP trial on the 11th of January. I’m just about to
finish my first cycle. I’m on my 3rd dex pulse and have I think 3 more days
of Revlimid to take before I have a week off everything. On February 8th,
I’ll have my first SPEP and quantitative Ig tests done to see how I’m doing.
I have had one CBC done, just Wednesday, to check how my counts were being
affected by the drugs. My CBCs, as usual, were all in the normal range. I
have only had a very few times in the last 3 years when I was mildly anemic.
It appears that the Revlimid isn’t having any impact on my WBC or platelets
(or anything). I’m hoping that will remain the same.

On dex, I have high blood sugar. It stays under 200, so the doc doesn’t
want to treat. I have been increasing my exercise quite a bit so I can keep
that blood sugar down. Of course I watch my starch intake and avoid sugar
while on dex. On non-dex days, my blood sugar is normal.

The Revlimid has been ok so far. Just a few problems. The first 3-4 days I
had a pretty bad headache. It was enough to keep me in bed, under the
influence of Excedrin, Darvocet, Ultracet and Xanax. Sounds a bit over the
top, I know, but when I have a headache it can turn into a monster if I
don’t use all the drugs at my disposal. :) On days 3-6 I had diarrhea and
stomach pain. After that, things settled down mostly. Now I’m having
constipation, which is nothing I’ve ever had before! I have to say, it’s no
fun. I’ve been downing the fiber and today picked up some herbal tea that’s
supposed to get things going. When I was on thal, I never had that problem,
but was told to expect it. So, this is a surprise for me. I even put fruit
back into my diet, which I had been avoiding because of the sugar.
Typically, I have a lot of vegetables.

That’s it for me for now. I’ll be sure to post my Ig’s and m-spike when I
get them. Going into the trial, my IgA was 2445 mg/dL and my m-spike was
1.2 g/dL. When I was first diagnosed in Jan 2003, my IgA was 4625 mg/dL and
I had 2 m-spikes of 2.8 g/dL and 0.6 g/dL. I think the lowest my IgA has
been 781 mg/dL in September, 2003. That was when I was on thal/dex. I’m
hoping for as good or better results from Rev/dex. :)

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Messed up my dex

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I was supposed to take my dex the morning of the 27th, and somehow I forgot! I ended up taking it about 7 pm that evening. I’m a morning dose dex person. I sleep better when I take it in the morning. When I take it in the evening, I’m up all night. I was up until about 6 am on the 28th and then slept about 4 hours. Here I am again, up late. I’m going to try to take something (Ambien) in a bit so I can get some sleep.

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CNN Report on drug costs for fertility treatment

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I just saw a report on CNN about how most insurance companies will not pay for drugs for fertility treatments. They talked to a few people who were selling their excess drug supplies to people who needed them, which saved them some money. They said the treatment can cost about $15k and may only be successful a small percentage of the time.

Of course, I wrote to them inmmediately to tell them how this kind of problem exists wherever drug costs are high and there are uninsured people. I told of my own willingness to send left over drugs to people who needed them (not SELL them). I hoped to impress upon them that this is a problem that exists where there are life and death situations, and that we need to take care of the people we have here and now, and then maybe we can concentrate on ways to make it affordable to bring more people into the world. That’s my own opinion.

I hope you can see this report and send them your stories about drug costs. I specifically mentioned Celgene. I hope this story will get some media attention. I’ve been trying.

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Dog trouble

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I took my dog out for a walk this evening, and what actually ended up happening was a fight with another dog. A very small Yorkshire terrier that wasn’t on a leash. I found out that I’m not in control of my dog. Not even close. I don’t have a BIG dog. He’s a collie/golden mix, and is about 56 lbs. It took every ounce of strength to get him away from the other dog (who kept running TOWARD my dog). I put my entire weight into it, and it was hard work. It was dark out. I like to walk at night. One reason I take my dog out at night is that we’re less likely to encounter anyone. Sometimes he will behave himself if we see people or other dogs, and sometimes he won’t. I took him immediately home and called to sign up for obedience training. I haven’t been a very good dog owner, because I haven’t been firm with him at all. Lately, he’s gotten more and more bratty! This morning I made some bread and left it on the counter. Within a few minutes he had it on the floor. When I tried to take it away from him, he growled at me! Anyway, the beginning obedience class starts on Sunday and runs 8 weeks. After that, there are other classes we can take. I’m interested in getting him to listen to commands and to stop his aggressive behavior.

When I take Buddy to the dog park, where they’re all allowed off their leashes, he seems to do fine. It’s when he’s on a leash that he becomes a monster. In the meantime, I’m going to stop using the retractible leash and just keep him on a short leash. When he pulls, I’ll have to stop him. Giving him more leash because he pulled was a reward for bad behavior.

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Firewall

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I know it’s just a movie, and I shouldn’t let this get to me. I have a problem with the ages of the actors in this movie. Harrison Ford is going to be 64 in 2006. Virginia Madsen is in her 40s. In the story, they have two young children. I don’t know what the statistics are, but it bothers me that they didn’t choose a younger actor to play the lead, making the situation more realistic. There’s nothing cute about starting a family at 60. In fact, I think it’s irresponsible. Give Harrison Ford some grandpa roles.

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3 Miles!

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I did 3 miles today. No small feat for me, being on dex. But I pushed myself. I didn’t let myself turn into my driveway and go home when I passed. I also did 1/2 hour of leg exercises. I can’t manage upper body stuff right now. Whenever I try, my right arm hurts. It may be different now that I’m on dex. That seems to get rid of my aches & pains. I should talk to the doc about it though. When I had my first xrays, there appeared to be a tiny dark spot on my right humerus, but nobody ever said anything about it. It was circled on a few of the films. I never asked, not wanting to think there was anything wrong, of course!

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Exercise

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I’ve been trying to exercise more every day. Before, I would let myself get away with once around my neighborhood, which is .6 miles. Now I go twice around. I try to go around at least 3 times a day. I have this weird thing that happens when I exercise! I smell a pretty strong ammonia smell afterwards. I don’t know if it’s something just I can smell, or if other people can smell it, too? What do I do? Ask people to smell me? Yikes.

In addition to the walking, I do these leg exercises for 20-30 minutes a day. When spring comes, and I can swim, I’ll work on upper body strength. The dex can really do a number on your legs, so I’m paying close attention to that.

Before I had MM, I tore out the ACL in my right kneee. I had PT before a few surgeries. The last surgery was a patellar tendon graft. It has held up fine. The first time I went for PT though, my legs were very strong. the therapist asked, “Why are you here?” I explained. But while they were checking over my gait and measuring things, they talked to each other about how muscular I was. Well, that’s not the case anymore. I hope I can get that back. I realize it will take some hard work, and I’m willing to do that now. I’m only 44, and am not ready to become an invalid!

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Relay for Life

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We’re trying to get the Moore County, North Carolina Relay for Life off to a start. There have been some obstacles. I’m hoping we can find a venue soon. There’s a lot of work to be done! If you’re a Moore County, North Carolina cancer survivor and would like to participate, please visit the web site: http://www.moorecountyrelay.org/. Register and you’ll be contacted. If you’re a company and would like to sponsor the event, we’d love to hear from you!

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