I took my weekly dexamethasone (generic for Decadron)dose a few hours ago. I’ll be able to sleep tonight, and should be able to sleep tomorrow night too. I have an rx for Ambien, in case I need it. Dex produces some side effects that wear off a day or 2 after I take it, like bad indigestion and hiccups. Some of the other side effects stay with me all the time, like a puffy face. My hair is thinning out – even my eyebrows. Karen Duffy, the author of the book mentioned below, was on high doses of steroids to fight her disease. She mentioned that she used Rogaine to fight the hair loss. She had plastic surgery to change the appearance of her face! One thing I wonder is, are these changes permanent? Or will things return to normal once I can either cut my dose or eliminate it entirely?
Search: “dexamethasone”
I have an appointment at Duke on the 21st at 10 am to be evaluated for an autologous peripheral blood stem cell transplant. I am tempted to cancel the appointment and not think about it again. At this point in time, I just don’t want to have one. I don’t know how I’ll feel about it in the future, especially after I’ve exhausted other treatment regimens. I especially don’t know how I’ll feel if I find out I have not responded to thalidomide and dexamethasone or if my disease has progressed.
There are many MM patients who have had not just one SCT, but 2 or even 3. It’s a very aggressive treatment. There’s no way to know how one will respond. If there’s a remission, no way to predict how long it will last.
When I see the people at Duke on the 21st, I’ll have them send kits to each of my siblings to have their blood tested to see if any of them is a 6/6 HLA match for me. They all know about this and have all agreed to be donors if necessary. Statistically, 1 in 4 siblings will be a match. I happen to have 4 siblings. It would be SO nice to have an identical twin. I have a fraternal twin, which is no different than a regular sibling.
Human Leukocyte Antigens (HLA): A series of antigens found on white blood cells and most other cells of the body that are used to determine tissue type. Your HLA allows your immune system to recognize self from non-self. When these proteins are the same for both donor and recipient, an allogeneic stem cell transplant is much more likely to be successful. In stem cell transplantation, the HLA antigens routinely typed for are HLA-A, B, and DR.
My understanding is that the donation process is not really painful. It’s time-consuming and there would be some discomfort involved. Needles in both arms, blood going out through one and back in through the other.
Anyway, I am going to keep my appointment at Duke and get as much information as I can. I will probably have to have a SCT one day, although I’m not planning on it right away (within the next year).
When I look at my labs over the last few months, one thing I see is that my platelets drop each time. They’re still within the normal range, but it’s a helpless feeling I get when I see that number go down with each successive report. I think aspirin could be affecting my platelet count. I take one 325 mg aspirin per day as a preventative for DVT that may result from the use of dexamethasone and thalidomide. This is something I’ll have to ask the doctor about.
My red blood count is also down. Lower than I’ve ever seen it before. I had another CBC done today and will see the results tomorrow, so I’ll know if it was just a one time thing or not.
There’s something to be said for a healthy diet. I wish I’d made changes years ago. Like a lot of people, I don’t do much of anything until I have to. Since I cut out dairy, sugar, processed foods, and coffee (and any beverages but water, tea and juice), I’ve noticed a lot of changes. I used to have a clogged feeling in my sinuses all the time. It felt like I was breathing through pin holes! Now I can take a deep breath through my nose and not pass out from lack of oxygen. :) I haven’t had that stuffy feeling in months. The first few weeks, my nose ran copiously, but now that’s a rare event. My rough elbows are gone too! Now the skin is smooth as a baby’s bottom! I had been seeing a dermatologist for acne and rosacea, and guess what? That’s all gone too.
Before dx, I had a lot of stomach problems. I don’t know what caused them. It could have been coffee or dairy (or all the other crap). I just felt yucky almost every day. I no longer have that problem.
No doctor I ever saw for any problem I had discussed changes in diet with me. I imagine it would have been wasted anyway. I just wasn’t ready for that. I’m afraid I’ve become a little preachy to friends and family about the importance of cutting the garbage out of one’s diet.
In addition to what I mentioned above, I also saw a drop in my serum IgA and M-spikes. I will have another SIEP test on May 15th, and will post the results here. We’ll see how the diet, thalidomide and dexamethasone are doing against the MM.
I had an appointment at Duke to be evaluated for auto PBSCT today, but I had to reschedule. I’m not feeling good today, and couldn’t fathom the thought of driving the hour plus just to get there, and then have a 4-5 hour appointment. I don’t know if I am experiencing some kind of withdrawal from dexamethasone, maybe? I have been having headaches and generally feeling ill. Sometimes feelings of anxiety too.
My information sheet from Dana-Farber says:
“Under normal conditions your body produces steroids. Taking prescribed steroids turns off your body’s own production of steroids. Since you are not making enough steroids on your own to keep your body in balance, stopping your medication abruptly may result in: low blood pressure, increases in blood potassium or irregular heartbeats.
Follow your doctor’s instructions about tapering off steroids. During steroid taper you may not have any problems or you may notice some effects of withdrawal.
– Soreness or aches in your muscles, joints and bones
– Low energy level
– Cravings for particular foods or a gradual decrease in appetite
– Stomach aches, or a change in bowel habits
– Mood swings or just feeling low
– Low blood pressure, particularly if you have been on blood pressure lowering drugs
Last night I started to develop a few little itchy spots on my arms and hands and my right eyelid swelled a little. By morning, the spots on my arms and hands were gone, but my entire right eyelid was swollen and red. At this moment, both eyelids are swollen and red, and so are my fingers. There are some itchy raised spots on my arms and legs too, mostly around the joints.
I’ve been taking Thalomid and dexamethasone (in 4 pulses of 4 days on/4 days off – 40 mg each day) for about a month now. Why would side effects manifest themselves at this point? Maybe there’s some cumulative effect with dexamethasone. It’s possible, because up until the third pulse, I hadn’t experienced that meanness other people talked about. Boy, was I in a bad mood! I could relate to what the others were saying.
I called my oncologist’s office this afternoon when it appeared that the itchy swelling wasn’t going away, but getting worse. He wasn’t in, so I called my primary care physician. He thinks it’s a result of the high doses of steroids and said I could take Benedryl to help with the itching and swelling. I must need a lot, because what I’ve taken so far today hasn’t put a dent in it. It would be nice if I could go to my vet and get a shot. :) If it’s not better in the morning, I’ll call my oncologist again.
I’m not sure if I should go ahead and take my evening dose of Thalomid or not. Tomorrow morning I start my last pulse of dex. Dex is supposed to help swelling :)