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?


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!

pH Information

There’s been some discussion about the importance of pH. I’ve done a lot of reading about it, and am going to include some information from my reading. I believe it’s important, and I check my pH every day. I usually have a low pH, but have found that certain foods raise it significantly. They are tomatoes and spinach, primarily. I test urine with pH test paper.

The following information is taken from
Beating Cancer with Nutrition
Patrick Quillin, PHD, RD, CNS
2001 Revised Edition
Nutrition Times Press, Inc., Box 130789, Carlsbad, CA 92013
Ph. 760-804-5703, fax 760-804-5704, or

Humans have a very specific need to maintain a proper pH balance. pH refers to “potential hydrogens” and is measured on a scale from 1 (very acidic) to 7 (neutral) to 14 (very alkaline, base). Foods that encourage a healthy pH are vegetables and other plant foods. Foods that encourage an unhealthy pH include beef, dairy, and sugar. Proper breathing, exercise, and adequate water intake further improve pH to discourage cancer growth. Cancer cells give off lactic acid in anaerobic fermentation of foodstuffs. This Cori cycle generates a lower pH, which then further compromises the cells’ ability to fight off the cancer. Acid foods (such as tomatoes, citrus, and vinegar) help to create an “alkaline tide” which helps to discourage cancer and fungus growth.
You can tell if you have an abnormal pH by some of the following characteristics: your jewelry, rings, and metal watch bands turn color (oxidize ) quickly; insects like mosquitoes are not attracted to you; you frequently develop yeast infections like toenail fungus. Acid/base is best tested by having your blood checked for pH in the veins. A quicker and cheaper method of testing your pH is using pH litmus paper (such as Nitrazine or Baxter Diagnostics pH Indicator Strips) from your pharmacy store. If your saliva is much lower than the comparison color charts, then you may need to heed this section closely. If your pH is significantly below (which is common) or above normal pH values, then your “host defense” mechanisms are compromised and cannot fight off the cancer .
A diet rich in beef, milk, and sugar plus poor breathing habits and no exercise will create a disease-prone pH. Proper deep diaphragm breathing, exercise, lots of clean water, and a diet including more vegetables and legumes will help to rectify most pH problems. Some people who are supposed to be omnivores (including meat) will become ardent vegetarians and end up with abnormally high pH. These people may need meats; like lean chicken, fish, and turkey to bring their pH value down to normal healthy levels. (p. 117)

pH (potential hydrogens) Acid alkaline balance (7.41 ideal in human veins) brought about by: proper breathing .exercise ( carbonic buffer from carbon dioxide in blood) .diet (plant foods elevate pH, animal foods and sugar reduce pH) .water (adequate hydration improves pH).
.other agents, such as cesium chloride, citric acid, sodium bicarbonate .yeast infections that generate a collection of acids that lower pH
Cancer is acidic (low pH) tissue.13 It is clear from all human physiology textbooks that pH in the blood, saliva, urine, and other areas is a critical factor for health. Blood pH is usually 7.35- 7.45, with 7.41 thought to be ideal. Acceptable pH for saliva is 6.0- 7.5, stomach 1.0-3.5, colon 5.0-8.4, and urine 4.5-8.4. pH is a logarithmic scale, meaning that moving from a healthy pH of 7.41 in the veins to 6.41 in the tumor tissue is a 10 fold (1,000 times) deterioration in the number of hydrogen ions influencing all chemical reactions. Most foods influence pH– pushing toward either acid or alkaline. Clinicians will spend much time adjusting parenteral feedings to achieve a proper pH in the blood. Meanwhile, there have been many alternative health books that attempt to treat various diseases by adjusting the body pH via the diet.
Potential hydrogens (pH) refers to the acid or alkaline nature of a chemical. If you mix a mild acid, like vinegar, with a mild alkaline substance, like baking soda, then the resulting reaction produces a salt– they neutralize one another by exchanging hydrogens. Just about everything that goes in your mouth can alter pH, including oxygen. The acidic pH of cancer cells also decreases the oxygen-carrying capacity of the surrounding blood so that tissue can become somewhat anaerobic– which are perfect conditions for cancer to thrive. Deep breathing has an alkalizing effect on the blood. An alkalizing diet of lots of plant food also helps to encourage removal of toxic heavy metals.
The macrobiotic book claims that pH adjustment is one of the more crucial objectives of their diet.14 Yet, I have worked with a few cancer patients who got worse on the macrobiotic program. Remember our discussion of biochemical individuality–not everyone will thrive on the same diet. Nick Gonzales, MD, sometimes uses a diet high in red meat to adjust the cancer patient’s pH into a normal range. It appears that some people are prone toward extreme acid or alkaline metabolism. For these people on the edge of acceptable biological pH, diet provides a counterbalance to bring serum pH back toward normal. Think of sailing a small boat wHere you may have to use your body as a counterbalance to prevent the boat from being tipped over by the wind. If your metabolism is in jeopardy of “tipping over” toward extreme pH, then diet and breathing become your counterbalances that keep metabolism upright.
While this area may be absolutely essential for some cancer patients, atrial and error method may be the only way to find out which direction your pH needs adjusting. If your condition improves on the macrobiotic program, then you are pushing your pH in the right direction. If your condition worsens on the macrobiotic program, then you must push your pH in the opposite direction.
About 8% of the population must have acid-forming foods to counterbalance their extremely alkalotic pH. Some people can eat anything they want and their internal mechanisms compensate to find an acceptable pH. For many people, an alkalizing diet (toward the left) will help to neutralize their acidifying tendencies, which can invite cancer .
Venous pH is the most accurate indicator of your overall body pH. Yet blood tests are invasive, expensive, and not practical for regular use. A rough indicator of your body pH is your saliva and urinary pH, since one of the functions of the kidneys is to filter out excess hydrogen ions (acid) to keep the blood mildly alkaline. When these acids are concentrated in the urine, then there is a good chance that the body is struggling to keep the blood at a healthy pH. You can purchase Nitrazine paper from your local druggist and follow the directions for measuring saliva or urine pH. Test your saliva at least one hour after any food or drink. If your saliva is strongly acidic, then you may need to emphasize this part of my program. (pp 302-303)