Monday, November 07, 2005

Doctor's response - on Sunday afternoon


So far your experience sounds par for the course. Hopefully, we can avoid constipation problems in the future.

You are experiencing to two separate affects of the treatment, one you can feel and one you can't. The sudden changes in the way your body feels (decreased pain and change in urine) are not anticancer affects but the anti-inflammatory affect of high dose steroids. It is normal for them to come and go with the RX.

The anticancer affects are much slower (multiple weeks to months) and you can't feel them...we will be able to measure them with labs when I see you.

Keep up the good work.

condition update - Multiple Myeloma - Thal/Dex - Day 26

[This is an email I wrote to my Oncologist at 3 o'clock in the morning Sunday.

Subject: condition update -- Multiple Myeloma - Thal/Dex - Day 26

Today, Sunday, 6 November 2005, is my 27th day of Thal/Dex. We have a scheduled appointment on Wednesday, 9 November. Since I want to relate a set of details I am writing them out, in hopes that this will allow you to review them at your convenience.

You have prescribed, and I am taking 200mg Thalidomide daily (at night) and 40mg dexamethasone (after breakfast) four days on / four days off.

By Day 10 I no longer needed pain medication. Amazing! And wonderful.
By Day 9 the toilet bowl was not full of bubbles after I urinated. Somewhere, sometime I got the idea that bubbles in the toilet bowl is a sign of protein in urine. Maybe it is not, but it was a big change for me and coincided with the chemotherapy.

Perhaps directly related to the oxycodone, which I have not taken for over 2 weeks, I became constipated and moved my bowels once every 4 or 5 days. Though I have been eating high fiber cereal, lots of fruit and vegetables, keeping my fluid intake high, eating ten to 12 dried prunes nightly and taking Senna-C (4 tablets nightly) on the advice of RN Andrew from your New Brunswick office, I have only reduced the cycle to once every other or third day. My cycle pre-chemo was daily. It is uncomfortable. My abdomen is enlarged and I feel a steady pressure in my bowels most of the time. Most unfortunately I have become a nastily flatulent office mate. Should I continue to use the Senna-C and simply aim for a more ideal dosage level?

My general condition is that I have a bit of dizziness fairly constantly throughout the day. I do not have a weight scale, but I feel that I am gaining weight; beyond the added burden I carry from constipation. My recently purchased 36 inch waist pants hang unwearable in my closet. I am snugly back in my 38's. I believe I am swelling throughout the day. My legs and toes seem puffy at the end of the work day, but are back to normal when I wake in the morning. On the four days I take dexamethasone, I tremble and feel agitated and unsettled. I have had only a couple of fleeting momentary instances of feeling that my legs had gone to sleep on days 22 and 23.

Stressful situations heighten my feelings of dizziness and agitation but it is a very short-term spike and I have been careful to expect the result / avoid many of the typical causes.

On days 23 & 24 (days 3 and 4 of a NO dexamethasone phase), I started having a steady headache from the time I woke up to the end of the day. I took whatever analgesic I could find handy. If it was Tylenol, I took 100mg; Ibuprofen 400mg; Aspirin 925mg -- when the pain became too intense to work. That gave me relief for 4 to 6 hours. I bought some Tylenol now and will take that should the need re-occur.

On day 24, the pain in my sacrum with radiation of the pain down my left buttock, returned at the end of my work day and through the evening. I did not take any analgesic or oxycodone (no oxycodone because I was concerned about aggravating my constipation). I had a couple of cocktails which did help.
On day 24, I again started seeing bubbles in the toilet bowl.
Day 25, I began a 40mg dexamethasone pulse and I had no pain all day. I also may have overdone my use of Senna-C, having taken 4 tablets before sleep and 4 tables after breakfast and had 3 bowel movements during the day. I imagine the dexamethasone also contributed.

Headaches; pain in my sacrum with radiating pain; bubbles in my toilet bowl -- in the fourth week of my chemo -- this appears like a throwback to pre-day ten symptoms. It is clear to me that my present phase of chemotherapy is a three month or possibly four month course of treatment. We are just now completing the fourth week. When you initially described to me the process the Thal/Dex would effect, I recall your description as the following:

What we do is use the initial chemotherapy to stop the multiple myeloma. The goal is to kill it. The myeloma is very effective at pumping away the drugs that will kill it, so we use a technique that will overcome its capacity to pump. This is what we will do for the first three, maybe four months. During that time we hope to kill 99.99% of the myeloma.

Should I understand that the myeloma is presently demonstrating its resilience? Will we see more up and down cycles going forward?

One last note - If you would prefer me to deliver these messages via fax or post to your office in addition or instead of email, please let me know. I want to make my communication with you as useful to you as possible.

Thank you, Doctor, for your care,