What the news reports didn’t say

This was at the cancer.gov site.
It refers to the reports we’ve been reading that tell us SCT will buy us time.

Limitations: For most, if not all patients with multiple myeloma, cautioned Wilson, high-dose therapy with stem-cell transplantation is not a cure. The treatment has risks. In the short term, patients who undergo the procedure are at increased risk for infection and bleeding. Longer term, they have a higher risk for problems such as infertility, cataracts, and new cancers.

Other new therapies with fewer side effects, including the drugs thalidomide and velcade, may be equally effective at extending survival in patients with multiple myeloma, and will need to be studied in this setting, said Wilson.

ěHigh-dose therapy with stem-cell transplantation may be appropriate for otherwise healthy patients who want aggressive treatment,î he added. ěHowever, I would not blindly recommend it as first-line treatment for all patients with multiple myeloma.î

The effects of diet

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.

Stem Cell Transplant

There’s been a story in the news the past few days about how stem cell transplant is the standard of care for MM patients, and a study has been released that shows data to support that SCT resulted in longer survival for MM patients. This is a link to the CNN story. This is the Yahoo News story.

It says that median survival after SCT was about a year longer than for those who just had standard chemo. I’ve been obsessing about SCT ever since I learned about it after diagnosis. I am terrified of it. I know some people who have been through it and didn’t have such a hard time. Others had some difficulties. Most of the people I talked to (on the MM list) had SCT and relapsed. I guess the successful ones aren’t on the list anymore?

The things I’m struggling with are issues like:
– No way to predict the outcome. Will I get any remission at all?
– What will the long term effects be? Someone on the list had reported having lost the use of her right arm. Was this a result of the high dose chemo/nerve damage?
– If I’m pretty healthy already, will killing my immune system weaken me so that I will now be susceptible to other things I never faced before?

Here I am at 41 years old. I have NEVER had anything like pneumonia or bronchitis. I have never even had a urinary tract infection. I can count the number of fevers I’ve had in my lifetime on one hand. I have never broken a bone.

I really don’t know what to do about this. I don’t know how to make this decision, and I can’t stop thinking about it. Sometimes I’m almost ready to accept it. Sometimes I just think I’d rather die than go through that. I know that lots of people have lived through it and are fine. I just don’t know how you balance the possible benefits (or none at all, possibly) with the risks. I have never felt really crummy for weeks on end. Is that what having a SCT feels like? Weeks of suffering? Can anyone comment?

Rescheduled

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

The Eyre Affair – light humorous reading

If you enjoy sci-fi with a lot of humor, along the lines of Douglas Adams or Terry Pratchett, you’ll like Jasper Fforde’s The Eyre Affair. The Eyre Affair is the story of SpecOps agent Thursday Next. See how Thursday rescues the novel Jane Eyre from the evil Acheron Hades!

I have recently received the sequel, Lost in a Good Book, but my last month on dex has somewhat diminished my attention span, making it difficult to read more than a few sentences. :) I’m hoping that’s all going to clear up now that I’m done with the pulsed dex now.

Organic Citrus

I ordered some organic citrus online today from Florida. I’ll be sure to post my experience here for thos who are interested. I make juice every day from oranges and grapefruits, but the selection in local stores isn’t very good. I usually can find Earthbound Farms citrus in the grocery store, but it’s expensive, the fruit is small and the shelf life is short. I ordered 10 lbs of Valencia oranges and the citrus mix (10 lbs of oranges and grapefruits) from Starr Organic Produce. It would be great to live in an area where organic produce was easier to find!