Doing Better, More Hopeful

I'm doing better. I've gotten more accepting of the side effects of the chemo. I have no choice about it. I have to take it the rest of my life. The pill was once trialed on chondrosarcoma, didn't work. But, is working for my Leukemia. My blood work is very close to normal. I don't know what's happening with my bone marrow, though. Will not have a new bone marrow biopsy for a while. As long as my blood stays how it is, no real pressing need to do it.

The side effects are more headaches, skin rashes, nausea, pounding pulse in my head and neck. The rashes bother my the most. Some of the treatment for it, (would you believe?) is moisturizing cream. The instant I'm out of the shower, I've got to slather it on head to toe. It's keeping the bumpiness down to a tolerable level. The more bumpy it is the more it itches. The sun seems to make it more itchy, too. And night time makes it worse, too. When really unbearable I take Benedryl. Gives me a good night's sleep, too!

Headaches... Tylenol. Pounding pulse, I can do nothing about, just get active and I don't notice. Lying down seems to increase it, or maybe I'm just noticing it more.

Nausea has changed my diet considerably. As long as I eat bland food, no seasoning, I can sort of keep it under control. Taste is off, sometimes I will think of a delicious food I can eat, then try to eat it and it will taste like cardboard. No sense in eating it! I don't go out to restaurants anymore, waste of money! My boyfriend is a gourmet chef. Spoils things considerably for him. Oh well. It is what it is.

Now... the big advantage to the nausea is that I have lost more than twenty pounds since November. And I certainly needed to lose weight. I am eating more healthy foods, more salads, cooked veggies and fruits, less meat. I ate these before but too much junk food interspersed. But, once my stomach rejects a food I have an aversion to it, and no longer crave it. Interestingly, with the lost weight, my GERD and hiatal hernia are not bothering me so much, and the nausea is not so bad anymore.

Another big advantage to the chemo: For the last two and a half years I was having SEVERE bone pain. I thought it was a normal process of aging related to my weakened pelvis and spine issues. I thought I would have to live with it the rest of my life. Now I know that the increase in pain during that time was caused by my bone marrow going through the changes of the Leukemia developing. Did you know that your DNA gets morphed, and is no longer the DNA you were born with? Since all that has improved due to the chemo, my pain levels have decreased considerably. I still have arthritis pain and osteoporosis pain, but it's nothing to what I had been going through that had needed Dilaudid to be controlled.

The other thing is the fatigue I was experiencing all that time has improved. I have more energy. I was dragging myself through the days, even too tired to write in group. And now that I think about it, I should be updating the group with the very same info I have just shared with you!


  1. WOW! So many changes for you to cope with. I'm so glad you have stopped fighting the treatment, especially since it is long term. Fighting is so exhausting ~ although completely understandable.

    The new diet sounds very healthy. I made an effort to start eating really healthily when I was 50 ~ and have stuck to it. It helps me maintain a good weight and have more energy ~ so I'm glad you've done the same. It's not easy for any of us to eat healthy since most of the really yummy foods are NOT the healthy ones. I mean who doesn't like custard-donuts? LOL!

    Jan xx

    1. I used to like custard donuts, but not anymore. I find I don't miss them, either. ;-)

  2. Anonymous8/01/2012

    It is so nice to read the good things here, especially the decrease in your pain levels. Very glad for you. I would not have known that leukemia causes bone pain!

    Keep on keeping on Elizabeth! :-)


  3. I didn't know that either, Beth. But with my previous life history of bone pain, I didn't realize it, except that it was getting intolerable. You've brought up an interesting point. I wonder how others deal with the increasse in bone pain and if that's what drives them to get diagnosed.

  4. I found this information about Leukemia bone pain:

    "The main type of bone pain associated with leukemia results from over-population of the marrow by too many blood cells, causing internal pressure and pain. It is localized to areas where there is active bone marrow (red marrow) when this pressure is the cause of the pain. Since the long bones only have marrow at the joints, any such pain is localized at the joints for those particular bones." See this marrow chart:


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