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.

Eye appointment

I had an appointment to have my eyes checked today. I ordered a pair of prescription sunglasses, since mine broke about 10 years ago. I really can’t stand how all the frames are tiny now. Fads really stink. Is it normal to have to pay $400 for glasses?

I went for acupuncture right afterwards. Acupuncture always makes me feel relaxed. I don’t know if I can say for sure that it helps my back pain.

Skins and stuff

Skins and stuffI picked this card up at a local shop, from the stacks of business cards left there by entrepreneurs trying to drum up sales. I blurred out the names and telephone numbers before publishing it to the web, but if you really must have skins and stuff you can get in touch with me and I’ll send you the contact information.

Don’t bacon puffs sound good right now?

Boston Globe article

There was an article in the Boston Globe online called, “Advances begin to tame cancer” from 7/6/2003. The following quote is taken from that article:

An audacious prediction The prediction that pain and death from cancer
will be eliminated by 2015 — rendering it essentially a chronic, old age
disease — comes from National Cancer Institute director Dr. Andrew C. von
Eschenbach, who runs the most influential cancer research agency in the
world, giving him an unequaled perch to examine the scope and pace of cancer
science. And he is floored by what he sees.

”Many, many people are living with cancer under control. And many
more will do so in the future. It will become like diabetes or
hypertension,” he said in an interview, underscoring that his agency is
committed to meeting the 2015 goal.

I mentioned the article to one of the chemo nurses I saw yesterday. She thinks it’s too optimisitic to believe that cancer will be under control by 2015. I happen to think it’s possible, and am hoping that we’ll see something much, much sooner.

Zometa

Today I had a 30 minute infusion of Zometa. Before I began, I had some blood drawn and sent up to the lab so my creatinine could be checked. It was .8 mg/dL, which is ok for me. It’s always .7 or .8. I don’t know what it was like years ago, but it would be interesting to find out.

The nurses always tell me to drink lots of water on the infusion days. I always do! Before they start, I’ve had a liter. By the end of the day, I’ll have had at least a few more liters of water.

They had Winnie the Pooh bandaids in the chemo room today. My injection site was bleeding too much for one though, so I had it wrapped up. I got my bandaid to go.

I have to go have my INR checked now!

Sleeping

Yesterday I went to the Healthy Back Store in Cary, NC to try out some mattresses. At one point, I had called Craftmatic about their beds, and decided against them for a few reasons. Primarily, there is no place you can test them. Secondly, the cost is prohibitive. The Healthy Back Store has several models of adjustable beds to choose from, and I tried them all. I tested the Tempur-Pedic model first. It was comfortable and has a massage feature. I also tried two of the store’s own adjustable beds, and am going to get one of those. All beds had the massage function.

I don’t think there is such a thing as an inexpensive adjustable bed, but the one I decided on is still $1,000 less than the Craftmatic, I got to test it, and it has a 20 year guarantee. I hope I will live long enough to get the full benefit of the guarantee! Oh! All the beds I tested have a 90 day return.

While we were there, my friend’s husband was spinng their two-year old around in the office chairs they had for sale… about an hour later, guess who got sick in my car?

John Edward

We drove over to Charlotte, NC today to see John Edward. John Edward has a television program called “Crossing Over.” I still have to think about what I saw and heard.

I don’t believe he is a fake, and I don’t believe there were plants in the audience.

Thalomid

ThalomidThis is the package my thalidomide is dispensed in. The cost of the 200 mg a day as prescribed is over $1500 a month. The manufacturer has an assistance program to help folks who cannot pay, but the income requirements are so low that regular middle class people don’t qualify. If my insurance didn’t cover mine, and I had to be on 200 mg/day for a long time (like some people are), I would have to sell my house to pay for drugs! It angers me when I read about our government wasting money (or choosing to spend our money in other countries) when we have US citizens who cannot afford health care and medicines they need to stay alive.

Cinical trials

The National Cancer Institute web site has a search function you can use to look for clinical trials. http://cancer.gov/search/clinical_trials/search_clinicaltrials.aspx. There are other sites that provide the same feature, but I’ll have to research them and possibly list them later on.

I was offered one trial at Duke, which was “A Multi-Center Randomized Study of Vincristine, Doxil, & Dexamethasone vs Vincristine, Doxorubicin, & Dexamethasone in Patients with Multiple Myeloma.”