Here we are, almost at the end of the 1st med cycle (7 days of meds, 3 weeks recuperate) and will start another cycle next Tuesday. Can't say I have noticed any difference that the meds are making, but can say there was a great difference last night!
I was laying in bed and I called Sharon to check out my swollen left foot. For those that don't know, I have had a continual case of gout since the 2nd week of October. Docs were hesitant at first to give me anything for it, but eventually caved and started me on 2 medications to prevent my body from manufacturing excessive uric acid (cause of gout) and another to help be get rid of uric acid, both minimal doses as both can cause a negative reaction with bone marrow, which is certainly something I don't need right now. They pointed out that they could not do anything about quantities of red blood cells that would be dying in my blood stream (because of the medication) and causing uric acid. Along about Dec 10th, it seemed the gout was beginning to subside, but on the 15th came back with a vengence, big toe, left foot, needless to say I was not experiencing the joys of the Christmas Spirit. OK...OK..back to my story, like I said I called Sharon to check the size that my foot had swollen to, she said it did not feel feverish, but sure was swollen.......
I got up this morning, no swelling, no pain, no stiffness in either foot, excited, I told Sharon and she simply said well I prayed last night as I was looking at it. After doing a quick little Texas two-step with her and heartfelt thanks to our Heavenly Father, I proceeded to do the dog chores (with her help) and was able to get around just fine.
Still feeling tired and washed out, some sores in the mouth and some minor fungal infections, all were expected and am taking drugs to help my immune system fight off the bad guys, but what a blessing to have feet not hurting! Docs don't expect to see much change in blood counts till after the 3rd cycle, but one bright spot, I did not need a transfusion last Tuesday, 1st time in 3 weeks :), so for now it's a continual cycle of supplements and products from the juicer. I am not supposed to go anyplace where I could pick up a bug or be around people with colds or flu.......that's a trick for the Holiday Season.
I wish you all the most blessed and happy of holiday seasons. Remember wise men still seek Him!
Sunday, December 20, 2009
Tuesday, November 24, 2009
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.
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.
Sunday, November 15, 2009
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.
Monday, November 9, 2009
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..........
Saturday, November 7, 2009
Finally.... the Big Meeting!
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.
Wednesday, November 4, 2009
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!
Saturday, October 31, 2009
Alternative Inquiry
In an effort to realize what the entire range of treatment options include, we are exploring naturapathic treatmets as well as conventional treatments. Research has shown that conventinal methods leave much to be desired. It sems to me that unless a method or therapy can be patented, in order to insure profit, that method or therapy is not considered or even ridiculed in an effort to preserve the monopoly of "Big Pharma". I will not not point out particuliars here, but you may certainly contact me for details, suffice it to say many have been persecuted and maligned to the point of incarceration in order to stifle dissenting voices.
Yesterday, Friday Oct. 29th we had our first meeting with a Naturapath which we found from reviewing many resumes and specialties of practice which were posted online. I will post details and identification later in therapy, however our initial 1 hour and 15 minute interview was entirely without charge.
Interesting comments that came out of this interview included:
1. Probable cause was damage to DNA/chromeosome by herbicides and pecticides that I have handled throughout my farming activity.
2. Prognosis is "good"
3. Diet/nutrition is extreamely important.
4. Integrated therapy is totally possible. That means conventional treatment and alternative treatment may co-exist. More on this later.
5. Although not specifically stated, it is my understanding that starting from position where my body has not been decimated by "chemo" is a definite advantage.
Coming from this meeting I was encouraged. To know that there are alternatives and those alternatives may be quite effective was settleing time. A definite decision as to the specific course of treatment will not be determined until after my meeting with the VA oncologist/hemotoligist on November 5th.
To complicate the issue, I was taken off a prescription to control gout with the onset of this condition, you guessed it, I have gout. That has me anchored pretty well and would actually feel pretty good if it were not for the gout. Doctors do not want to make a decision on medication to control the gout until after the decision is made on the general course of treatment is made, I guess that is OK as I am not supposed to be in public places (concern for infection, flu, etc).
Yesterday, Friday Oct. 29th we had our first meeting with a Naturapath which we found from reviewing many resumes and specialties of practice which were posted online. I will post details and identification later in therapy, however our initial 1 hour and 15 minute interview was entirely without charge.
Interesting comments that came out of this interview included:
1. Probable cause was damage to DNA/chromeosome by herbicides and pecticides that I have handled throughout my farming activity.
2. Prognosis is "good"
3. Diet/nutrition is extreamely important.
4. Integrated therapy is totally possible. That means conventional treatment and alternative treatment may co-exist. More on this later.
5. Although not specifically stated, it is my understanding that starting from position where my body has not been decimated by "chemo" is a definite advantage.
Coming from this meeting I was encouraged. To know that there are alternatives and those alternatives may be quite effective was settleing time. A definite decision as to the specific course of treatment will not be determined until after my meeting with the VA oncologist/hemotoligist on November 5th.
To complicate the issue, I was taken off a prescription to control gout with the onset of this condition, you guessed it, I have gout. That has me anchored pretty well and would actually feel pretty good if it were not for the gout. Doctors do not want to make a decision on medication to control the gout until after the decision is made on the general course of treatment is made, I guess that is OK as I am not supposed to be in public places (concern for infection, flu, etc).
Thursday, October 29, 2009
An interesting turn of life events
Well, interesting turn of life...... I (Joel) have been diagnosed with a blood disorder condition call MDS the old name is "pre-leukemia", a preliminary report from a BMB (bone marrow biopsy) has confirmed that I am borderline AML (Acute myelogenous leukemia).
Myelodysplastic syndromes are bone marrow stem cell disorders resulting in disorderly and ineffective hematopoiesis (blood production) manifested by irreversible quantitative and qualitative defects in hematopoietic (blood-forming) cells. In a majority of cases, the course of disease is chronic with gradually worsening cytopenias due to progressive bone marrow failure. Approximately one-third of patients with MDS progress to AML within months to a few years.The usual progression of this diesease is into something called AML (see below)Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needsI am currently borderline AML, additional evaluation of the bone marrow biopsy will indicate what type or risk factor the MDS is currently in and a prognosis cannot be made until that type is determined, nor can recommended treatment be determined until those tests are in, but will probably include chemotherapy.
The hematologist/oncologist is transferring me to another doctor who specializes in this treatment. I will go and have additional lab work done tomorrow to determine the stability of the MDS and the need for additional transfusions. They have cautioned me about doing anything that may injure myself or be in places where I may pick up an infection.My concern is not death, I see that as a great adventure, but so many "loose ends" and things I want to do. I feel good and do not do well "doing nothing".
Will try to keep this blog up to date as a tool to let everyone who is interested know what is going on and also a resource for others who may be navigating the same waters.
Myelodysplastic syndromes are bone marrow stem cell disorders resulting in disorderly and ineffective hematopoiesis (blood production) manifested by irreversible quantitative and qualitative defects in hematopoietic (blood-forming) cells. In a majority of cases, the course of disease is chronic with gradually worsening cytopenias due to progressive bone marrow failure. Approximately one-third of patients with MDS progress to AML within months to a few years.The usual progression of this diesease is into something called AML (see below)Acute myelogenous leukemia (AML) is a fast-growing cancer of the blood and bone marrow. In AML, the bone marrow makes many unformed cells called blasts. Blasts normally develop into white blood cells that fight infection. However, the blasts are abnormal in AML. They do not develop and cannot fight infections. The bone marrow may also make abnormal red blood cells and platelets. The number of abnormal cells (or leukemia cells) grows quickly. They crowd out the normal red blood cells, white blood cells and platelets the body needsI am currently borderline AML, additional evaluation of the bone marrow biopsy will indicate what type or risk factor the MDS is currently in and a prognosis cannot be made until that type is determined, nor can recommended treatment be determined until those tests are in, but will probably include chemotherapy.
The hematologist/oncologist is transferring me to another doctor who specializes in this treatment. I will go and have additional lab work done tomorrow to determine the stability of the MDS and the need for additional transfusions. They have cautioned me about doing anything that may injure myself or be in places where I may pick up an infection.My concern is not death, I see that as a great adventure, but so many "loose ends" and things I want to do. I feel good and do not do well "doing nothing".
Will try to keep this blog up to date as a tool to let everyone who is interested know what is going on and also a resource for others who may be navigating the same waters.
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