Category: General

I think dex has produced a new side effect for me. I’ll see my local oncologist today, so I can ask him about this. Because I get some nasty indigestion from dex (even though I take a prescription drug to try to help this), I am careful about what I eat on dex days. This morning I got painful indigestion from drinking a cup of tea! I then had some fruit to take with my morning pills, and the acid from the fruit burned my tongue and throat, making me cough and generally want to stop eating. I checked in the mirror with my flashlight and can see that my tongue and throat are red. I’ll see what the doctor has to say about this. Others have told me they get sore throats on dex and it goes away after a day or so. I’m hoping this is the case.

Dex has changed the way my brain works too. I suppose thalidomide could contribute to this as well. My attention span is non-existant. I used to read a lot. I mean a book every week or 2. I liked having conversations with people. I rarely talk on the phone anymore and find it difficult to answer email with anything more than a sentence or two. So if you’re getting long email messages from me, you’re lucky! People tell me this affliction is called chemo brain.

I’m easily annoyed now, too. Maybe I was before. Was I? If you think so, feel free to speak up.

I have a new drug to help me sleep. It’s called temazepam. I should be taking it now! :) I took my dex at 8:00 pm last night, and am still up at 2:30 am. I have to give it a try.

There is one good thing about dex. It’s a powerful anti-inflammatory. When I take dex, some of my aches and pains go away.

Source: 411Cancer.com “Cancer Experts leading the way to optimal cancer care.”

According to results presented at the 2003 European Hematology Association meeting, further evidence indicates that Aranesp? (darbepoetin alfa) is effective at improving anemia and fatigue in patients with lymphoid cancers.

Lymphoid cancers, sometimes referred to as lymphoproliferative diseases, are cancers that originate in the immune system. Examples of lymphoid cancers include Hodgkin’s disease, non-Hodgkin’s disease, chronic lymphocytic leukemia and multiple myeloma. A mainstay of treatment for lymphoid cancers involves chemotherapy, which can cause anemia.

When you have cancer, you have to accept a lot of changes. Sometimes I just sit and wish for my old life back, but it never does any good. I still have the disease to deal with.

One of the drugs I’m on is dexamethasone. It’s been causing some cosmetic changes, like thinning hair and edema. Most people experience the edema in their feet and legs. I have it in my hands and face. It’s also causing weight gain. I still don’t eat junk food, simple carbs or sugary stuff, but I’m putting on some pounds anyway. I’m going to do my best to get rid of the 10 or so pounds I’ve gained and not let them come back. It’s a struggle for a lot of people on dex. My doctor said that cancer doctors are some of the only doctors who don’t mind when their patients gain weight.

When I was first diagnosed, one of the first changes I had to adjust to was the liklihood that I wasn’t going to get as old as I always assumed I would. There’s a possibility that new drugs or a cure could change all that. I hope that’s the case! I asked my doctor the other day about how long I could expect to live. The conservative answer was 6-7 years and the optimistic answer was in the neighborhood of 10-12 years. He said it’s not a particularly cheerful outlook, but it’s better than it would have been before we started using drugs like thalidomide. I know there’s no way to tell for sure, so I have that in the back of my mind all the time. I told him that I know some people only make it months or a few years, while others live 10+ years. He said that he thought I’d probably be one of the ones that gets to 10, 12 or 13 years. My prognostic factors at diagnosis seemed to be good. What he looked at were things like beta 2 microglobulin and c-reactive protein. You can see all that stuff by looking at my labs.

I’m responding well to treatment now, and that’s a relief. With MM, something that’s stressful is that you don’t know how much time any treatment will buy you, if any. Some people resist treatment and are known as refractory. Some people have been treated with thalidomide and enjoyed years of remission from it! We all hope to find the regimen that works for us. I think everyone would agree that quality of life is most important.

Would you live your life any differently if you thought you had just a few more years to go?

I’ve spent a small fortune over the last few years on pillows in an effort to do something about persistent neck pain I’ve had. I kept thinking a special pillow was going to help while I slept. I gave up finally. I dug up my favorite 20 year old pillows and put them back on my bed, and put the expensive pillows away. I’m now sleeping better and have less pain in my neck. Go figure!

At last – after more than a month on Coumadin – I have an INR over 2. I take 10 or 12.5 mg/day of Coumadin now, and hope that will keep the INR where it needs to be.

I had good news today. Dr. Orlowski called to tell me that my serum IgA is now at 829 mg/dL (ref range 40-390). I started out in January at 4,625 mg/dL. I’ve been on 50 mg Thalomid daily since April 4th, and 40 mg dexamethasone weekly (after the initial 4 cycles of 4 days on and 4 days off). I also have Zometa every 4 weeks.

Since there are several hundred readers of this blog every month and it’s well indexed in the search engines, I wanted to include this from a member of the ACOR MM mailing list. Please discuss anything that has to do with your care with your doctor. This is just information from another patient and must not be taken as medical advice. The same goes for anything else on this site.

After six cycles of Velcade my IgA is 25, from a
starting level of over 3000 in early March. I feel
great. For this entire cycle I have received a whole
liter of saline hydration with each Velcade
injection. I have had no side effects whatsoever,
other than the temporary worsening of Thal-induced pn
and shingles phn. This resolves in about 48 hours.
When I received a smaller amount of hydration during
the first several cycles, I often had mild to
moderate flu-like side effects of low fever, body
aches, fatigue, and malaise. I strongly urge anyone
who is beginning Velcade to ask your doctor to order
a liter of saline each time, set up as a pump
infusion over about one hour.