Friday, November 13, 2009

Getting Reved Up

As expected, I will return to a revlimid regime. That is the consensus of the docs at M.D. Anderson and Mayo. One pill (15 mg) per day, along with my every other day prednisone. Initially Rifkin was going to couple it with dexamethasone, rather than prednisone (both steroids, but they act a bit differently with the revlimid). But after much discussion with Susan, who reported (she is always the Greek chorus in our doctor visit) that I was handling the prednisone quite well, in fact, maybe too well, as I always seemed to be happy and laughing--particularly at my own jokes, Rifkin said, in that case we'd stay with prednisone and keep me happy. He did say we might change over to dex if the data suggests dex to be a more effective boost for the revlimid.

Given that I don't qualify for any pomalidomide trials at this time, this is about the only option available. The results of all the testing show that my disease is progressing. While the bone marrow biopsy showed only 22.5% plasma cells, Rifkin was quick to discount that since myeloma grows in a swiss cheese like pattern. So the biopsy can hit a pocket with high concentration of myeloma, or a very low degree of myeloma. Remember the "if it's too good to be true, then it's likely not true" posting while in Arkansas when my plasma cells went from 90% to 5%? Right. There were some good numbers tucked in the biopsy results and as he said, "the prednisone did its job," which is to hold my myeloma in check while my blood counts stabilized. There is still concern about what the revlimid might do to the blood counts since my bone marrow doesn't work as well anymore.

And then there were all the bone studies, which is really what showed the progression of the myeloma. I have multiple new compression fractures in my back. This was a surprise to me since I thought that all my vertebra were already fractured from T1 all the way down to L5. Well, if they weren't before, they are now. A couple of troubling spots that made Rifkin plead with me to go see my orthopedic surgeon. I avoid those exams as they are so painful as he pushes on each individual vertebra to determine its stability and my degree of pain at each level. I used to come home from those exams and take a percocet or dilaud. So, here we go again. The MRI and PET scan also showed more lesions in the humerus (upper arm), femur (thigh), sternum, and ribs. These are areas where the myeloma has attacked the bone. Nothing so serious that I am at risk for fractures, but enough that I have to get on some drug to stop the progression.

I prepared for this exam as if it were a real exam: I picked up copies of all tests yesterday, read them, highlighted them, wrote in the margins, went back and looked at most of my test results over the last 4 years, and wrote down 2 pages of questions. Maybe Rifkin should have been preparing for my questions! Oh, he must enjoy my examinations (pun intended).

I will only feature a few questions that might be of interest to you:
1. Are the bone lesions reversible? Yes, the revlimid can stop the progression of the disease and in time the bone can heal.
2. Are my kidney and liver funtion OK? Yes, they are within normal limits. (Kidney function is often adversely affected by myeloma).
3. When do I start and how long will the revlimid regime last? It will take about 10 days to get the order in, get me approved and have the first prescription delivered. We will probably go through 6 cycles (21 days each cycle), then we'll reevaluate.
4. Are there side effects to the revlimid? Yes, primarily causing a drop in the white and red cell counts and/or platelets. This is of concern due to my poor bone marrow, so we are starting on a lower dose than they might otherwise. Neuropathies are generally less than with thalidomide or velcade.
5. What next? If the revlimid works, then off to M.D. Anderson for the mini allo transplant from one of my brothers. I would be hospitalized for a month, then required to be in Houston for 3 months in case of complications. We would stay with Susan's brother Gary, which would be much nicer than having to rent an apartment and move a carload of furnishings.

And that, my friends, is the medical report. What a life! But I'm still laughing. It may be drug induced laughter, but that matters not--I'm still laughing, and every day continues to be a treat. Thanks again to all of you for keeping us going. We love you.
Dan

6 comments:

tim's wife said...

Revlimid can cause leg cramps. Not sure if you were aware. Tim was allowed to take calcium/magnesium pills and it helped a lot. We also kept a heating pad plugged in and ready near the bed as they often hit in the early morning. Tim's doc
(an MM spec since 1989) thinks MD
Anderson is a great hospital for MM'ers. He feels they have more transplant docs and MM docs together under one roof than anywhere else. Wishing you well.

Seal Family said...

We will be sending good thoughts and know that you are all in our prayers. The Seal Family

sigun said...

Dear Dan.

Rough day for you and Susan. Good council by Tim's wife -- keep that heating pad plugged in! We love you. Bises, Sigun.

Brother Ted said...

After offending Nick, I thought I would keep a low profile for awhile, but what the heck! Brother Ted is posting again. I had to comment on the broad smile and the hearty laugh that I saw and felt as I read your blog. I love that you embrace life at every turn and that you find joy in the moment. I am so honored to have you as a friend. Who else would put up with my warped mind. As for your Rifkin report, what the hell!! You will get past this round and head down to MD Anderson.

Susan, you are wonderful. I am not sure how Dan was able to talk you into sharing your life with him but he sure won the big lotto when you said, "Yes!" Love, Peace and Grace to all the Patterson Family.

scoopondan said...

To Tim's Wife: First, thank you for the tip on the heating pad. I had it wrapped around my cramped up calf all of last night. As to your comment on the last post regarding my spiritual teacher, as you know as bad as the physical can be, and it's safe to say I've had quite a bit of the physical issues to deal with, the mental aspect of having a MM diagnosis presents an even greater challenge. A few minutes of quiet meditation in the morning and evening really can release much of the worry and anxiety. There may be trained meditation teachers in your area. Most important is just establishing the daily practice. Best of luck and thank you for your thoughtful suggestions.
Dan

shawnandjaike said...

Whatever it is that keeps you laughing, double the dosage. Hats off to you Dan.
Hugs, Shawn