[Owen Maguire]

Mark

This was your question on the forum and as quite often happens a number of us jump in to try and help you and get caught up in our own concerns and yes our own fears. At the same time I hope we have given you some insight into what many of your peers are going through. If nothingb else i hope we have given you some insight into how diverse this disease and it’s treatment actually is

[Owen Maguire]

Cecile;

It would appear that our Vidaza Treatment program is very similar. I had my first Bone Marrow when I was diagnosed with MDS. The second ; when my WBC fell and I started Vidaza and my last after my 6th Vidaza cycle. The only major regression from the last Bone Marrow was that my Blasts increased from 4% to 6%. As my Oncologist said my glass was either half full or half empty depending on how I wanted to look at it. I previously inquired about using a port for the Vidaza treatment but my Oncologist believes that the best results are achieved through direct injection. Just picked up my latest blood results and this time my Hg went up to 125 and RBC to 3.1 the highest they have been since treatment began. At the same time I believe that the Eprex I inject once a week plays a significant part in this. The Neutrophils took a slide but they seem to go up and down. I just turned 79 and to date have not had to have a blood transfusion . Like you I am able to do the day to day things without difficulty, it just takes longer. The biggest change in my life is that I am no longer able to get Out of Country Medical insurance to leave the cold and snow we have in Calgary, Alberta, Canada and go to California for 3 months like we did for the last 15 years. Then when I read some of the posts on this forum I give my head a shake and think to myself just how lucky I am compared to so many others.

[Owen Maguire]

Hi Allan;

I was originally diagnosed as MDS-RCMD in 2012 at my annual medical and other than being somewhat fatigued I did quite well. For example I had to use a golf cart for golfing where I had always walked before. As an aside I was also found to have A Fib and placed on Pradaxa a blood anti-coagulant to prevent stroke. I played golf 4 times a week until my Hg. took the dive in 2015 and once I went on the weekly injection of Eprex 40,000 units the Hg stabilized between 115- 118 and I was able to golf an average of 3 times a week, but would be quite tired for a day or two at the end of the week. During all this time I would get continual sores on my tongue and inside my mouth. I used a prescribed antibiotic dental paste on the sores which was quite effective. When my WBC went down and it was decided I would go on Vidaza after about the 2nd cycle I noticed a real decline in mouth sores. I tried to play golf with my usual group of 12, but as a spare, because I found that I got tired during the week I got my needles and was quite sore in some spots on my stomach where needles were give which lasted until the end of the next week. As I have stated I have had some good results with Vidaza but at the same time I tire fairly easily in doing normal things around the house and also when this happens I have a tendency to sweat profusely. On the good side my weight has remained constant at just over 200 lbs ( 6′ 1″) and all who know me say I look quite healthy. I have my monthly appointment with my hematologist/ oncologist tomorrow and had my blood work taken last Thursday. Start my 9th Vidaza Cycle on Nov 27. I will drop into the Chemo unit where I get my treatment today and get the blood results in order that I will be prepared to ask any questions I might have tomorrow when I see the Oncologist. He has also sent my file onto the Clinical Trials Unit to see if I am suitable for anything that might come up and hopefully will get some feedback. Lastly if you do not already know the Marrows Forum is also a good place to get information.

Best of Luck

Owen

[Owen Maguire]

Mark I was diagnosed with MDS in fall of 2012. Originally on Watch & Wait . Placed on Eprex self injected when Hg fell in 2015 and started Vidaza in April 2017 when WBC was at 1.6. Have now completed 8 cycles. My Oncologist refuses to give me a prognosis on my life span because of so many variables.For example in April 2017 my platelet count was 79 and 2 weeks ago was 150 (very low range of normal) In April 2017 my Neutrophils were 0.3 and 2 weeks ago were 1.1 My WBC was 1.6 last April and 2.1 2 weeks ago. Still not good but better. In between April and 2 weeks ago there have been ups and downs but with Vidaza a lot more ups than downs. I have been lucky in not having had any transfusions,and am doing my best to concentrate on getting the best out of the present,before Vidaza stops working and I have to deal with the future.

[Owen Maguire]

Mark I was diagnosed with MDS in fall of 2012. Originally on Watch & Wait . Placed on Eprex self injected when Hg fell in 2015 and started Vidaza in April 2017 when WBC was at 1.6. Have now completed 8 cycles. My Oncologist refuses to give me a prognosis on my life span because of so many variables.For example in April 2017 my platelet count was 79 and 2 weeks ago was 150 (very low range of normal) In April 2017 my Neutrophils were 0.3 and 2 weeks ago were 1.1 My WBC was 1.6 last April and 2.1 2 weeks ago. Still not good but better. In between April and 2 weeks ago there have been ups and downs but with Vidaza a lot more ups a than downs. I have been lucky in not having had any transfusions,and am doing my best to concentrate on getting the best out of the present,before Vidaza stops working and I have to deal with the future.

[Owen Maguire]

I am 79 year old male who was diagnosed with MDS in the fall of 2012. After being on watch and wait my Hg fell to 87 in fall of 2015 and I was placed on Eprex 40,000 units I inject once a week. My Hg rose almost immediately and has ranged between 115 and 118 last week. I have never had problem with high Hg. I have just completed cycle 8 with Vidaza and my main problem continues with low WBC (2.1) last CBC. Also just completed 4th Bone Marrow and blasts up from 4 to 6 percent. I have never had a blood transfusion.Best news was that my platelets went up from 105 to 150 last CBC. You don’t say how many units of Eprex your mother takes but you might have a good point in reducing the dose.

[Owen Maguire]

I was diagnosed with MDS during my annual medical in the fall of 2012. ( Funny thing I was diagnosed with A-Fib at the same time). I was 73 years of age and until then I was the picture of health; golfed 5 days a week and went to the gym to work out every second day and did a lot of contract work. I was put on a watch and wait program,, but in a few months had to ride in a golf cart to play as I began to get tired easily. In the fall of 2015 my Hemoglobin took a dive and I was placed on E-Prex 40,000 units once a week which I inject myself. This has had a positive effect and my last count was 117. My white count while not normal was not considered dangerous at the time. Three months ago at my usual appointment with my Hematologist/Oncologist I found that my white count had really fallen and consequently I was placed on the Vidaza program of 7 days on and 21 off. I completed my first 7 days this morning. The Vidaza program at the Peter Lougheed Hospital in Calgary Alberta, Canada is co-ordinated by a Pharmacist attached to the Hematology Department. She has been a lifesaver as she went over the program in depth prior to my starting and is available by phone or email to answer any questions. She also acts as a bridge between myself and my Oncologist to make sure things go smoothly. As many of you will confirm trying to get hold of your Oncologist can be difficult at times. I live in a medium size centre outside of Calgary, and there is a regional Provincial Cancer Center at our hospital. This centre has just recently had a two and a half million dollar up grade and it looks like I will be able to continue my Vidaza treatment here subject to my Oncologist giving the go ahead on my visit in three weeks. So far the only side effects I have experienced have been sourness at the injection sites; relieved by evening primrose oil, some mild constipation relieved by a laxative (The pharmacist has suggested I start the laxative two days before I start my next treatment and lastly yesterday I was extremely tired after the injections. There was a problem with some crystallization of the Vidazda in one of the syringes and a number of attempts took place before the injection was successful. I hope that the program will buy me a few more years of life.

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