Please keep in mind when I first started writing this I had no knowledge of Multiple Myeloma. I never even heard of it.

         It was the flu again so I thought six days in bed with a fever. Felt really bad but I will get better I always do. My wife by day three was telling me I need to see a doctor. Day seven my hip started hurting like never before I thought well I need to get out of bed and work it out but it only got worst. Little did I know that my bone marrow was at 60 % bad and I had tumors or holes in hip and femur the size of quarters.
Couldn’t sleep I would get up with cobs of blood in my mouth from my gums bleeding. Day 7, 8,9,10 I was pressured by family to go to dr. The E>R ran some test and came back and told my wife and I that I was a very sick man. My platelet were at 10,000 normal is 250,000 – 450,000 they ran a C T Scan they were afraid of the brain bleeding.
White and red cells extremely low, hemoglobin 7 were 13-15 is normal 8 and below requires a blood transfusion. They told me I needed a blood transfusion and platelets or I am going to die. Received five units of blood and one unit of platelet.
I was diagnosed with stage 3 Multiple Myeloma on 2/4/09 with less than a year to live. Was admitted in Adrian MI. Bixby hospital for 7 days.
I can follow my doctor’s orders of radiation, chemotherapy and even bone marrow transplant and maybe live 2 or 3 years with no immune system for awhile. Well that doesn’t leave me with a whole lot of choices now does it? I’ve never heard of multiple myeloma, so I started researching, and every where I look, same out come 1 year without treatment, 2-3 years with treatment. I know some people live longer because I have spoken with several living 5 yrs ., 7 yrs. And even 10 years. And I know I have been Carrying  this around with me for a lot longer than 3 years so treatment sounded like a death sentence to me.  And my first dr. was so vague in his answers to me I was scared and didn’t know what to do. But the national cancer institute states Life expectancies are 1 to 3 years after diagnoses and treatment. What’s happening to all those people after diagnoses? They die in 1 to 3 years. So I asked myself this question if I was diagnosed 3 years ago would I be dead now; because I’ve been fighting this dam thing for 10 years of my life and never knew it. I hate to think that first time that, feeling weak and fatigued which was most of the time, or when my ribs, back, and hip would hurt, that I didn’t run to the doctor so he could diagnose me and start treatment.
or when I cut myself and the blood wouldn’t stop, and all those nose bleeds the rashes, hives and eczema for the last 5 yrs. it was like the body was trying to protect the liver and kidneys by using the biggest organ in our body the skin, mostly the hands and feet would blister and secrete fluid, this was most of the time it is horrible. I am self employed I could have never held down a full time job. I worked when I could and rested when I needed to.
I would just rest; eat fruits and vegetables, and juice fruit and vegetables. This therapy makes sense to me, I need my immune system and I want to live more than 3 dam years. So for now I have stopped all medications and I’m using the Gerson therapy. Feeling better and stronger each day, don’t get me wrong I am still weak and easily fatigued; I have a long way to go. I love life and this speed bump isn’t part of my plan. 3/13/09

Ps more to come later.

So the Gerson Therapy I could have paid 10 grand and went to Mexico to there clinic
Or like we did bought there books , guides and hand book.
Was juicing 13 drinks a day. 1 every hour. supplements and special diet. Giving my self muscle and iv shots.
B12 and liver extract mixed in one shot .2 cc B12 and 3.0 cc liver extract in large muscle. Laetrile, Amygdaline or B17 are the three names that are given they contain cyanide so its like a natural form of chemo and I would inject in my vein 3 cc then take a hot bath to raise body temp. Once a day. I was feeling very weak of 6 weeks of this so I went to dr. to get blood work my hemoglobin was really low 8,  so I need to go straight to Herrick hosp in Tecumseh MI. and receive 3 units of blood. but the Gerson case worker they put me in contact with told my not to get a transfusion but to go on oxygen therapy. I cried at that moment because I realized I am all alone with this disease because you and I both know breathing all the oxygen in the world isn’t going to raise your hemoglobin. Your red blood count that carries the oxygen to you vital organs. This advice would have killed me.
That’s what your plasma cells in your healthy bone marrow does. So I got three units of blood and continued with the diet that was costing me about 300 a week every thing was organic. Then four week later I got sick really sick. 4/26/09 and my family was watching me die at home and all the while my oldest son and nephew were looking for answers because this wasn’t working. My nephew and I realized there wasn’t much information about multiple myeloma. So my nephew Andy said Uncle Darryl I am going to build a web site just on multiple myeloma and a chat program so you can ask Questions and get answers from all over the world. I could chat with others that have multiple  myeloma. This has been a great resource. My oldest son Mitchell was looking for Doctors in the Field of MM being a rare cancer 1% of all cancers.  Andrzej Jozef Jakubowiak, M.D., Ph.D.

My son made a great choice in doctors and his staff I am pleased with his decision. Was admitted in the University of Michigan Hospital Ann Arbor for a week with low blood pressure and high fever I really thought I wasn’t coming home this time? It really scared me. At that point I decided to stop Gerson therapy and start chemo treatment.

5\27\09 started Chemotherapy at U of M in a Clinical trial RVDD ( Rivlimid, Valcade, dexamethasone and doxil )

8/18/09 started 5 cycle we were going to do only 4 cycle then a BMT
But my insurance well this is another matter and before I start slinging MUD
I will just say I hope it all works out.

More to come soon real soon.

              So here is what happened, my insurance would not cover the BMT at U OF M.

They sent me downtown Detroit to Karmanos institute. Right from the start I didn’t like being there. We my wife and I met with the doctor he knew little about my background.

But he already had in his mind a course of treatment. I would ask him what about that I am high risk with a deleted 13 chromosome and translocation (4:14) .

               Every thing I read about say 2 or more high risk factors showed no real improvement and these patents should consider another course of treatment.A BMT will not benifitt them in most cases, cant achieve a full remission.  I have two doctors telling me to do the transplant my hemo dr. j wants to do a Autologous (using patient’s own cells)  and this new doctor want’s to do a  Allogeneic stem cell transplantation witch uses a Donors stem cells and much more risky. And after any transplant you will need a lot of support physically as well as mentally Both my brother and sister are matches. Now here a sit crying not knowing what to do its my choice. Do the autologous or the allogeneic or just keep doing chemo.

             Told the doctor I had to think about this. We received good news the insurance will cover the transplant at U of M. I decided to do the auto transplant so they started me on drugs that I take at home in a shot form giving my self injections.   

Twice a day for a week. it pulls the stem cells from the bone  marrow and it to the blood stream so they can collect the stem cell to give to me at a later date.

              Most people have no side effects I had most of them it was miserable I was sick with nausea felt like bad flue, bones would just hurt they said it should take one to 4 treatments to collect cells. I would go in the morning lay in a bed hocked up to this big separator machine the blood goes in then is separated and returned to you thru a IV port one going out one coming in. The third port for medications and other fluids. They need 3 parts per million for a transport they take 6, enough for two transplants. You can get all 6 on the first day not me. They call you every morning with your results mine was 1.3 or something so you keep going back till you get enough (6).well after 3 days and only collecting 4.something we stopped 4.something would be enough for two transplants. Day 2 they doubled my dose day 3 I had to go into the hospital to get a newer drug one shot cost like 4000 dollars this drug made me sick from the minute they administered it.

Tired,, more to come some Darryl

Ps am I being too wordy is wordy a word?