The Adventure Continues

I was full of hope when I went to the Oncologist last Thuesday, I was starting to feel better and it seemed my strength was returning so I fully expected better lab test results, to my surprise, they were worse. Platelets were down to 10, other readings remained about the same. My doctor was genuinely concerned that I was procrastinating and explained again that if the MDS progressed to full blown leukemia (AML) it would be much harder to treat. So reluctantly I agreed to begin treatment the following Monday. After telling her I would get a list of ingredients from my Naturopath, that he was using, we scheduled treatment to start the following Monday. At that point she told me I needed to get 2 units of blood and 1 unit of platelets within the next few hours. Wow, I thought we were past that, what a kick in the pants.


Went right to the Chemo Lab where they explained the whole drill to me and proceeded to draw cross & match for the infusion. My arms were a mess from a week of IV's at the Naturopath and after 5 unsuccessful attempts to find a vein, I passed out, they called a code and I created quite a commotion, needless to say everybody involved knows who I am now. Even the chaplain was there!

They finally got an IV placement and I proceeded to take 2 units of blood and 1 of platelets, we got out of there about 6:00PM, a long day! Thank God for neighbors who readily pitched in and fed the dogs while we were gone.

I am concerned that my Naturopath has not responded as I requested..... I guess he is busy.

Tuesday - 11/24/2009 - Well, we have started alleopathic treatment for MDS...... today they (VA Portland) got everything in a row and we started a treatment of  6 - 7 cycles, (7 days of IV then 3 weeks of weekly lab tests) is one cycle. The drug of choice was Vidaza. We were supposed to get a PIC (semi-permanent IV catheter that enters your right arm and sits about 1 inch above your heart) placed yesterday and begin treatment then, but somebody dropped the ball and it was not scheduled, so we went home. Today it worked OK, well kinda, after the initial attempt to install the PIC an XRAY showed it was too deep so they had to pull it out a little, once that was done the labs we done (no poking) :) and treatment was accomplished. I was encouraged that labs showed that blood counts were up a little, probably because of the insusions last Thursday.

Delivered the last puppy to their "forever home " when we got home.....that will ease things a bit for Sharon, what a trooper! Made some phone calls to hire someone to do daily chores with the dogs. Too much for Sharon, much will be said about a caregiver later. Also contacted a friend to replace the engine in my broken Suburban, we will need good four wheel drive transportation for this treatment schedule through the winter. I notice that one of my biggest adjustments is acceptance that I can't do it all like I used to. Acknowledging that I need help is difficult for me. My boat calls from the barn to be finished.....so close, yet elusive in my present condition, better days are coming!

Just an observation..... I think receiving treatment from a VA facility will be much like treatment under ObamaCare. The staff is great, could not ask for better, compassionate, caring, professonal, however very overworked. The volumn of patients is amazing. That place is like a city to itself. One must not assume that things get done, but take charge yourself to oversee your care.

Some Progress

Finally the gout is starting to clear up in my feet! What a blessing! MDS is an issue that makes you tire easily and feel kinda punky. Today is the first day that I have been able to clean out the dog's kennels without sitting down and resting while washing them down. That was encouraging to me. The real story will come this week when new blood tests are run. Any kind of improvement will be an encouragement and validation that we are on the right path.

The First Step!

Finally came the day when we found out what the Naturopath was suggusting in addition to what the VA is suggusting, as I expected, the approaches are quite different. We will start a marathon if 4 IV's per week on Mon, Tues, Fri & Sat. in between we will take different medication including nebulizer therapy. OK, I know it sounds far out for cancer therapy, but the VA alternatives are not very promising. I am exciting about starting this course of treatment from a position of relative sound health of mind and body as opposed to being decimated by chemical treatments that attempt to kill the very substance we are trying to save. We start tomorrow and continue till..........

Finally.... the Big Meeting!

Had the meeting that I was anticipationg for about a month.....well not anticipating kinda like this
Met a specialist today at VA. She comes off as intelligent, compassionate and connected in the community of MDS/AML specialists. Based upon current lab results she ordered 2 units of blood. She suggested the traditional form of treatment that consists of Chemo and ultimately a Bone Marrow Transplant. I explained my concerns about traditional treatment and in particular chemo, she agreed that results have not been great nor have they changed in 30-40 years. However it is still the best option for MDS/AML. Her major concern is to not allow the MDS to advance to AML which is determined when blasts reach a level of 20%. She did not mention any nutritional factors of treatment which I questioned and by her answer indicated that any alternate treatment was not something she had studied. Prognosis without treatment is about 11 months survival with treatment about 18 months (median averages).


My major takeaways from the meeting were:
1. VA will partner with me and support me in any mode of treatment that I choose. (including alternate)
2. I have a type 2 version of MDS and am currently at 15% blasts
3. The type I have is called Refractory anemia with excess blasts RAEB II: 10-19% marrow blasts. Blasts normally develop into red blood cells, white blood cells or platelets. In MDS, the blasts are abnormal and do not develop or function normally.
4. I may choose whatever course of care I wish and VA will support that. Primary courses of care are:
     a. Supportive care - The goal of supportive care is to manage disease symptoms and related problems.

     b. Chemotherapy - The three medicines approved by the FDA to treat MDS are azacitidine (Vidaza®), decitabine (Dacogen®) and lenalidomide (Revlimid®) (The names inside the parentheses are the trade names for these drugs.) Azacitidine and decitabine are approved to treat all types of MDS, and lenalidomide is approved to treat only the 5q- syndrome type of MDS.

     c. Bone marrow or cord blood transplant - The only known treatment that can bring about a long-term remission from MDS is a bone marrow transplant (BMT) A BMT replaces the defective cells in a patient's bone marrow. The cells used in a BMT can come from bone marrow, peripheral (circulating) blood, or umbilical cord blood.

Clinical trials are an option which are being explored potentially in Seattle.

The next appointment is in 2 weeks (Nov 19th) and we will determine the course of treatment provided by the VA at that time.

Some Good News!

Went to have a ultrasound to confirm the doctor's proddings for an enlarged spleen...... nope! even was a little on the small side.... huuuummmm, kinda interesting!