Month: October 2005

The Mermaid

Elyssa the Sand Mermaid There are giant piles of sand in my back yard that are there as a result of excavation for a pool. Yesterday my neice and I were playing in the sand, and I covered her up, shaping the sand like a mermaid (as close as I could come with a wiggly 7 year old underneath). This picture makes me laugh every time I look at it!


I have the distinct feeling that CNTO 328 isn’t helping me. My IgA was in the 1800s before I quit dex, but then dropped to the 1600s during my “wash out” period before I began the CNTO trial. During the trial, my serum IgA has been in the 2000-2400 mg/dL range. At the last test, it was 2300.

I’m interested in enrolling in the Multicenter, Open-Label, Single-Arm, Expanded Access Program For Lenalidomide Plus Dexamethasone In Previously Treated Subjects With Multiple Myeloma. There are two in North Carolina. One is at Winston-Salem and one is in Charlotte. Charlotte is a miserable two hour drive. W-S is about 110 miles from here, but good roads with a higher speed limit. I have emailed the Principal Investigator, and so has my doctor. They are currently not recruiting, but the study may be opened up in about 4 weeks. The Charlotte place IS recruiting. I’m going to try to hold out. I’m sure I’ll survive another 4-6 weeks. There’s a 28 day wash out period, so it would be nice to know if I should stop the CNTO now.

My BMB showed no change in the per centage of plasma cells between the start and official end of the CNTO trial, so they considered that a stable disease. My IgA has gone up 700 mg/dL though. Did you know that, to be called disease progression, the MM has to advance by 25%?

What are the possible side effects of dexamethasone?

This is from medline plus:

Side Effects of This Medicine

Side Effects of This MedicineCorticosteroids may lower your resistance to infections. Also, any infection you get may be harder to treat. Always check with your doctor as soon as possible if you notice any signs of a possible infection, such as sore throat, fever, sneezing, or coughing.

Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. When this medicine is used for short periods of time, side effects usually are rare. However, check with your doctor as soon as possible if any of the following side effects occur:

  • Less common
  • Decreased or blurred vision; frequent urination; increased thirst
  • Rare
    • Blindness (sudden, when injected in the head or neck area); burning, numbness, pain, or tingling at or near place of injection ; confusion; excitement ; false sense of well-being; hallucinations (seeing, hearing, or feeling things that are not there); mental depression; mistaken feelings of self-importance or being mistreated; mood swings (sudden and wide); redness, swelling, or other sign of allergy or infection at place of injection; restlessness ; skin rash or hives
  • Additional side effects may occur if you take this medicine for a long time. Check with your doctor if any of the following side effects occur:

    • Abdominal or stomach pain or burning (continuing); acne; bloody or black, tarry stools ; changes in vision; eye pain; filling or rounding out of the face; headache; irregular heartbeat; menstrual problems; muscle cramps or pain; muscle weakness; nausea; pain in arms, back, hips, legs, ribs, or shoulders; pitting, scarring, or depression of skin at place of injection; reddish purple lines on arms, face, groin, legs, or trunk; redness of eyes; sensitivity of eyes to light; stunting of growth (in children); swelling of feet or lower legs; tearing of eyes; thin, shiny skin; trouble in sleeping; unusual bruising; unusual increase in hair growth; unusual tiredness or weakness; vomiting; weight gain (rapid); wounds that will not heal

    Other side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. However, check with your doctor if any of the following side effects continue or are bothersome:

    • More common
      • Increased appetite; indigestion; loss of appetite (for triamcinolone only); nervousness or restlessness
    • Less common or rare
      • Darkening or lightening of skin color; dizziness or lightheadedness; flushing of face or cheeks; hiccups; increased joint pain (after injection into a joint); increased sweating; nosebleeds (after injection into the nose) ; sensation of spinning

    After you stop using this medicine, your body may need time to adjust. The length of time this takes depends on the amount of medicine you were using and how long you used it. If you have taken large doses of this medicine for a long time, your body may need one year to adjust. During this time, check with your doctor immediately if any of the following side effects occur:

    • Abdominal, stomach, or back pain; dizziness ; fainting; fever; loss of appetite (continuing); muscle or joint pain; nausea; reappearance of disease symptoms; shortness of breath ; unexplained headaches (frequent or continuing) ; unusual tiredness or weakness; vomiting; weight loss (rapid)

    Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor.

    CNTO 328 Trial

    I’m staying on this for a while longer. It’s not clear if it’s helping, because My IgA isn’t going down. It’s slowly going up, I think. I don’t have yesterday’s results yet. I don’t know if it would be better to do nothing at all, since this drug has had a negative impact on my cholesterol and triglycerides. I have to have an ultrasound of my pancreas next week because one of the enzymes was up. My triglycerides had gotten to a dangerously high level. I started to take the meds for it on Friday night, and my tg had gone from 1300 to 199 in just 3 days. Much better. What I want to do is get on the rev/dex trial at Wake Forest. This would be the only way to get the drug before it’s approved. We don’t know how long that will be, and I don’t want to do anything more aggressive just yet.

    Bloody ‘ell

    That’s what someone said when I told him the trial drug I’m on has raised my triglycerides to 1300 mg/dL. I think it’s appropriate here. It was known that CNTO 328 could affect lipids, so that’s why they’ve been testing every few weeks. Believe it or not, when I had my first test, they forgot to tell me to fast, so I had a rather unhealthy breakfast on the way to the hospital. Loaded with fat and starch. Bad, I know. But, my lipid panel was really good anyway! Cholesterol was 137 and the triglycerides were a little elevated (224 I think). LDL and HDL were good. In fact the LDL cholesterol was only 54. When Rey, from UNC, called to tell me they had to start me on meds for the triglycerides, I was curious and asked, “Is it over 500?” Imagine my surprise upon hearing it was over 1300! Until yesterday, I never knew that such elevated tg can cause pancreatitis. I’ve been prescribed Gemfibrozil, which I started taking last night. I also made sure to do more exercise, which is something I plan on doing every day now. Not just leisurely walks with the dog anymore.

    Bone Marrow Biopsy

    I had a bone marrow biopsy yesterday. I got one of these, and decided to take a picture of it so you could see what the needle looks like. This time I had an IV of 2 mg ativan. I can’t say that it helps much, but it sure doesn’t hurt. I don’t know what all these parts are for, but here they are!

    Goldenberg Snare Coil (Bone Marrow Biopsy Needle)

    Manufacturer’s Home Page. This used to include some video demonstrations of the Goldenberg Snarecoil in use.  Now it’s branded Monoject.

    Collie Rescue of the Carolinas

    I do some volunteer work for the Collie Rescue of the Carolinas. Sometimes we have a collie who has had a terrible time, and needs to have a home with a family who will take good care of him and not discard him. If you live in the Carolinas or Virginia, and have been considering adopting a dog, take a look at Jamie: Spread the word around. He needs a home!