[Kensyen]

So sorry to hear about your Dad, I still miss mine greatly. I went on today to actually see how things were going, I wish you and your family all the best.

Wendy

[Kensyen]

Sophia,

Duke university has a wonderful Neutropenic diet online. My father also went Neutropenic, hopefully they are dilligent with isolation.

[Kensyen]

My father had RARS and progressed to AML. We figure the time was after a transfusion he suddenly broke out in Petechiae, which are like blood blisters under the skin. Soon after this he was diagnosed the AML. I figure the doctors knew all along, but with my father’s weakening state he was not treated with Chemo. We discussed it and tried it for a week, but with everything else including 9 units of RBC in a day, we felt it was better not to do the Chemo. After talking to several doctors, it was in their opinion that it would only prolong his life by minimal weeks and the quality of life during treatments would significantly diminish the remaining life he had.
They were right.
My father passed away 3 months after diagnosis to AML.

[Kensyen]

Bill

I was reading your signature, congratulations on not having any transfusions for a year. I am so happy for you as I know how consuming and an annoyance those transfusions can be.

Wendy

[Kensyen]

3kids1dog

You certainly are not the only one that feels this uncertainty, your feelings are perfectly normal. Our lives were consumed with trips to Toronto from Kingston, Ontario, sometimes 3 times per week to seek treatment. Each time you hold your breath and hope for an improvement., soon our lives were all about blood counts, then later WBC, Platlets and Neutrophil. Honest to God, there comes a point that you actually realize you understand everything the doctors are telling you as you have scoured the internet for hours on end reading every ounce of material available. I went so far as to luckily contact the VP of Celgene.
This disease is about uncertainty as each week things can plateau and then change on a dime.
Good luck,

[Kensyen]

Jeanette

Regarding the doctors, my father saw 2 Hematologists, one was the Head of Hematology.
We didn’t receive any quality care until we got to a Centre of Excellence. I am amazed that these other “Hematologists” can even call themselves that, there is definately a two tier system when it comes to doctors; one that does the research, the other that may read the research the other doctor does. Guess which one we ended up with.

[Kensyen]

Hi Jack

As a private request tp a top researcher in Canada, I asked on behalf of our neighbour whom he would recommend for treatment with our neighbour’s disease. This person was being treated at another teaching hospital and was under the care of Head of Hematology, this doctor gave our neighbour 4-6 months to live. Upon my request to renowned researcher I was told to refer him to Dr. Donna Reece, she was top he her field and the top researcher for Stem Cell transplants and had some ground breaking results. Upon researching Dr.Reece, I found she indeed lectured world wide and is obviously highly resepected.
OUr neighbour whom is in his late 60’s was kept in isolation for over a month after receiving his transplant. I realize the statistics for stem cell, but when your alternative is zero, 30 percent seems better. Plus, if you have access to the best, that would be my choice.
In regards to my father, we went to many doctors, many that were content with maintaining his present state, it wasn’t until we went to Toronto that we received any satisfaction. I don’t know how many symposiums you have attended Jack, but sitting and listening to the presentations that were being given by these researchers from Toronto, Stong Memorial (Rochester), John Hopkins etc.. I was amazed and impressed by these researchers. What disgusted me, is all these Hematologists that treat this disease that are not in attendence, but would rather, if having the time would read what occured at these symopsiums.
During my father’s illness, I became acquainted from everyone from the local Hematologist to the V.P. of Celgene, it really gave me hope that there will be a cure for this disease and there are more opportunities for a quality of life then many are being offered.

[Kensyen]

Hi Jeanette

I certainly relate to your frustration. When my father was first diagnosed with MDS we proceeded immediately with a “game plan”, we were quickly told that “Mr.Talbot you are 73 years old, you have lived your life, just deal with the cards you have been dealt.” No Kidding.. nice bedside manner, this Doctor, who calls himself a Specialist should have had his medical licence revoked. We then went to Toronto, my father’s prospects instantly looked brighter, what was a dim forecast (18 months) turned into 7 years of life, with 6 being good quality.
After becoming heavily involved with MDS, I have learned through conferences that I attended there are 2 types of Doctors, ones that are researchers and others that MAY read what the others have reasearched., that is why I thought you should seek advice through Strong Cancer Center. These people are dedicated, they are not worried about HMO etc.. they genuinely are empassioned and want to help and find a cure, they do not consider themselves Specialists but rather researchers ( big difference, one wants to “maintain” the patient, the other wants to find a cure…). These people will guide your parents Physician through treatments if they cannot make it to a MDS doctor, they are up on the latest drugs etc..Many physicians would not have dealt with many if any people with MDS, your father needs specific care, in my opinion this would be the best way to obtain it.

[Kensyen]

Get your father into a Centre of Excellence. You may want your father’s physician to fax his particulars for review to Stong Memorial Cancer Centre in Rochester, NY, they are the top notch facility and the top researcher, Dr. John Bennett also sits on the board of Celgene ( Revlimid).
Thankfully Australia has an Orphan Drug Program, I wish Canada did, at least he is accessible to more drugs.

Good Luck,

Wendy

[Kensyen]

Hi Newleywedmds

My prayers are with you.

I would stronly suggest contacting Dr. Donna Reece at Princess Margaret Hospital in Toronto, Ontario Canada. I don’t know if she could do anything for you but it certainly would be my next step. She is the #1 person to see about stem cell transplants in the world, she is it.
My father passed away with MDS, our neighbour had a rare form of bone marrow deficiency and from a leading cancer centre was given 4-6 months to live. I told him to contact Dr. Reece, she reviewed his case and he went under the long and islolating process of a stem cell transplant, he is 100% now with no signs of the disease.
Just send an email stating your case and your husbands condition, it doesn’t cost anything and this woman is doing ground breaking research.

Wendy

[Kensyen]

Diane

When my father was at that stage I spent countless hours talking to specialists at Princess Margaret and Sunnybrook Hospitals in Toronto. I wanted an answer that I wanted to hear. My father came home from the hospital and was sitting at the dining table eating dinner, he was happy, talkative and watching television, that was Dec 23rd, the next day it was like a total turnaround, the night of Dec 24th he was taken back to hospital and then put on comfort measures on Dec 25th. I brought him home by private ambulance on the night of Dec 25th, he passed away the next morning. He was in pain and being given a light dosage of moriphine. I believe the pain was caused by the total collapse of his bone marrow production. His final death occured fast, it was not prolonged and it was dignified.
I wish you the best and truly feel that when your father passes it will be the same. At least this disease allows one that. When my Uncle passed of cancer that eventually affected his brain, he was not allowed that dignity, he was in/out consciousness and it was prolonged. I found with the bone marrow collapsing things progressed quickly. Within a week my father went from having less than 5% Blasts to having more than 80%. He was put on Chemo, but I was told by a very well respected specialist in Toronto that the Chemo at that stage may only prolong life by a week and the quality of life would be significantly diminished.
Best Wishes,
Wendy

[Kensyen]

Bianca

Have you tried Stong Cancer Centre in Rochester NY? The MDS lab is run by Dr. John Bennett, the #1 guy in research for MDS in the US, he also sits on the board of Celgene which is responsible for Revlimid. Dr. Bennett’s assistant is Phoebe, she is amazing., give her a call. These people are so empassioned with the disease, Phoebe helped me greatly with my father’s diagnosis with MDS.
These people are amazing and you will not be disappointed. I know all about the doctors with the heart of coal, trust me these guys are not and if it is too far for you to drive, they will refer you to someone that will help you.
If you are looking into Stem Cell transplants, I recommended our neighbour who also had a form of MDS go to Dr.Donna Reece, she is at Princess Margaret Hospital in Toronto, Ontario, Canada. She is the number one stem cell researcher, she saved our neighbour’s life. Check it out.
If you ever want to email me please do so at gofish@rideau.net

[Kensyen]

Diane

Reading this forum has brought back all the memories of my father and his fight with MDS. Towards the end of his life he was receiving up to 8 transfusions per day, I scoured the internet for hours looking for a solution, I became hypnotised with his platlet counts, his neurophil counts etc..My father was my hero, I was so close to him, thoughout his illness I was his advocate, I spent hundreds of hours trying to get Revlimid into Canada, I advocated to Celgene and became acquainted with its Vice President. At the end of my fathers life I knew I had done everything possible, but even at the end we were injecting Neuprogen to bring up is Neurtrophil count. What I appreciated about my fathers death is that he did not lose control of his mind, he was coherent until he fell into a deep sleep and passed away 3 hours later. I remember his long sleeps and his fight to want to stay awake.
I sincerely wish you all the best,

Wendy

[Kensyen]

Diane

All the best, I understand what you are going through, my father passed away Dec 26, 2006 with MDS. I know what it is like to grasp at straws, your love and support will be appreciated by him.

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