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
Hi Beth
I read about you in the article “Cents for Cells” in the Fayetteville Observer. I am sorry you have MM and I know what you are going through. I was diagnosed in January 2002. I was in MGUS or smoldering stage. The doctor at CFVM wanted me to start chemo right away and I wanted a second opinion. He suggested Dr. Orlowski at UNC. He said to go for quality of life since MGUS can last for sometimes 10 years. I had to opposing opinions and went for a third in NY, Dr. Jaganaut. He agreed with UNC – quality of life. They both agreed I needed to start Zometa every month to strenghten my bones. I received Zometa at CFVM.
I then heard about a doctor that worked at the Blood and Cancer Clinic in Fayetteville, one mile from my home. He performed transplants in the past in PA but not in Fayetteville. I started seeing him since he had knowledge of MM. I felt more confident seeing him. The doctor moved to VA so his wife could go to college there. I was disappointed but glad for him.
Then November 2004 my protein count started climbing. All doctors agreed I needed to start VAD. I had three cycles and couldn’t handle another. I would have low blood pressure. I also had a skin rash on my hands. It would just flake off like a bad sun burn. My throat was sore but thank God for “Magic Mouthwash”! I lost some weight.
Since my numbers were good they suggested the SCT. I met Dr. Gabriel, UNC and a month later the stem cell collection went well. On April 4,we went to have a catherer inserted at UNC. I was ready to start SCT the next day. My sister was trying to reach me by phone to tell me that my mother was dying. I asked if I could delay the transplant and go to Chicago. They instructed my husband how to take care of the catherer. My mother died that day. We went to Chicago for the funeral. I never told my mother that I had cancer. She was 89 when she died. She lost my father 40 years ago to throat cancer and my sister 30 years ago with kidney complications.
We returned directly to UNC after the funeral and started the SCT procedures. It is not “a walk in park” and they told me that. But I had to give it a chance. I had many infections and fever. I stayed at UNC for 21 days. Then because it was Memorial Day weekend they wanted us to stay at a hotel nearby in case of infection. Our insurance paid the hotel bill since we lived more than 70 miles away. They released me Tuesday after the holiday. I was so glad to go home.
I think if the procedure could have been done close to home, I could have come home each night. But we lived 75 miles away and they wanted us only 15 minutes away in case of complications. My husband came every other day to visit after work. My sister came to help since my husband was using his vacation days to take care of me and doctor appointments. My sister was my shadow. I know she didn’t want to lose another sister. It is just me and her now.
I was very weak. My blood pressure would rise and fall. They decided to take me off my blood pressure medicine. They felt it safer to have high blood pressure (145/90)than fainting with low pressure. I was afraid of falling when no one was around.
It took about 2 months to finally feel better. My hair started growing back. I too would rather have long hair. It is so cold having short hair. I always wore hats or scraves. When my hair came in it was black and curly. I used to be a blonde with straight thick hair. They told me I looked like Martha Stewart. I wish I had her money! I bought a blonde wig just before my son shaved my hair off. I needed a dark brown wig now to get everyone use to my new color. Thankfully CFVM had a “Look Good, Feel Good” program. It was fantastic! I received a free wig and makeup for a make over. It was fun. I needed fun.
Everything was fine until March 2006 and my protein numbers started climbing. They said I relapsed. I forgot to tell you that Dr. Gabriel and my doc here wanted me to start Thal three months after the transplant. I consulted another doctor at UNC, my second opinion, and he said to go for “quality of life”. I did not want to take Thal because of the side effects. The doctor in NY said it was too late to start Thal anyway.
They started me on Thalidimind and Dex. Then they started me on Velcade. My numbers started to come down. I got the moon face and swelling. My doctor here did not know how long to keep me on treatments. Dr. Gabriel and my doc here wanted me to have a mini transplant with a donors blood. Both UNC and NY said not unless it was a sibling’s. They also said since chemo is working to stay with it until something new comes out. Because of my neuropathy, they gave me a “drug” vacation. As long as my numbers stayed down, I could stay off chemo. I have been off chemo for three months now. Next time they suggested Revlimid because of the neuropathy. We go to UNC on Jan 30 to discuss the next step.
We do have a fantastic support group, Facing Forward, at CFVM. Twenty of the thirty girls there have breast cancer. I am the only one with MM. The others have Non-Hodgins, Ovarian Cancer. I started the group in February 2002. They are my sisters. They got me through chemo and cancer. Since my family is in Chicago it is great having them. They understand what I am going through. My other friends are terrific too but they don’t know. I used to feel like “an elephant in the room” until I meet the girls at Facing Forward.
I tried to start a MM support group at the Blood and Cancer Clinic with the help of their new social worker. We meet every third Wednesday at 12:00 pm at the conference room at the clinic. IMF also sent materials and a support person to our meeting. I had to miss that one.
I have met a wonderful woman that has MM for the last 12 years! She’s never had a transplant. She goes to Duke. She is my inspiration.
We would love to have you join us if you can.
Anne