[Owen Maguire]

Hi Heinz
When I was first diagosed I went to pubmed often. Over the years I have gravitated to other sources that concentrate on recent developments in the treatment of MDS. I am at an age where much of what I read is in it’s infancy but it gets me excited to think of the cure that will be available to those who come after me.I read everything I can about the development of Car T cell therapy as I have come to believe that as of now this is where a cure will come from. Last week I watched a presentation on the research on car t cells being done at the University of Montreal and the tremendous early results they are having. Unfortunately the cost factor to any large scale devlopment of the process is prohibitive at this time.

[Owen Maguire]

OK Heinz;

Not good news at all;

So as you say on to a new stage of the battle. While I can certainly keeping my fingers crossed for you I want to share something that has helped me particularly when I wake up in the middle of the night and start thinking about either my wife’s condition or my own. About a year ago I received a gift subscription, of a website called Calm.. It deals with everything such as anxiety, not sleeping, body pain etc. I went for some time without really opening it. Finally one night when I was not sleeping I opened up the site and read a little about it and decided it would not work for me. I finally went back to it and started with the not sleeping sessions. and for some time now I find that it works a good part of the time. The same with the anxiety sessions and body pain. It is not perfect but I certainly do receive relief a good portion of the time. Most importantly my mind and body feels much more able to deal with day to day situations. Calm.com offers a free trial period and you might want to look into it.

You are in my thoughts every day, and I am willing you on .

Owen

[Owen Maguire]

Hi Heinz.

First of all I am not a Hematologist or Oncologist so can only do what you already seem to be doing, and that is to go to a search engine on your computer and type in Toxic Bone Marrow with Vidaza treatment for MDS”. I did this just mow with google and there were one or two articles that I quickly saw that mentioned bone marrow failure. In my case when I have some area that I want to discuss with my Hem/Onc I do the reading from what I am sure are reliable sources. I jot down on paper what I think are the main points that I feel apply to my case and ask for her opinion. Some times if is a recent artice she has not seen it and gets back to me and on one occasion she did some checking with the research author. Once again you seem to have done some of this. When I had my first appointment with an Hem/Onc he was a gruff man in his 60’s who was noted as being tops in his field and had been involved in the Vidaza trials. He told me that my disease was probably going to kill me as I was trilineage, but his and my job was to keep me going with a good quality of life as long as possible. He retired a couple of years ago and my new doctor is much more subtle. However last week in my appointment I questioned her about how long Vidaza could last for me with 62 doses coming up. She said there was no indication that Vidaza was starting to fail, but that research showed that the bone marrow eventually would reject Vidaza.Her last words were ” Lets cross that bridge if we get there ” Meanwhile you strike me as someone who is not prepared to give up without a good fight. Lets keep in touch. The least I can do is offer support and cheer you on.

[Owen Maguire]

Hi Amy;
Thank-you for your kind words , and most importantly I hope that you are in remission. There certainly are cases where this has happened. Like yourself when I was first diagnosed with MDS, I was somewhat frightened of the unknown. I only had limited time with my Hematologist appointment so received limited information. I went online and discovered as much info as I could and also found a number of sites through the MDS foundation website that filled in much of the blanks. I was retired, but was sitting on two Provincial (State) Boards, so this took up about 2 to 3 days a week and then my wife showed the first signs of dementia. I now had something major to worry about beside myself. Over the next few years as Maggie’s condition worsened, I concentrated more and more on her well being and then two years ago she entered a wonderful Care Facility with many programs to help her. I suddenly began thinking about my own well being. I was alone and my only child lived 800 miles away and Covid was roaring
with me now being isolated. One night when I could not sleep and was thinking about a multitude of things I remembered a movie where Morgan Freeman was told he was dying and decided to do all the things he had wanted to do. It clicked with me and the next morning I began my bucket list. I talk to my daughter on the phone most evenings as she is driving home from work and told her what I was doing and she said I suppose you will get your ears pierced. It was a standing joke that I had made when we sat behind two fellows with pierced ears at a football game. My next item is to try and regain contact with many people who were special to us as we were transferred 12 times across Canada. I want them to know that despite loosing contact with them they were not lost in our thoughts. I hope that you find the same relief that I have as you start acting on your bucket list.

[Owen Maguire]

Hi Heinz
My experience with platelets is that they jump all over the place from month to month. I keep a record of my monthly blood results from the time I started Vidaza.In 2017 high was 150-low 79. 2018 -158 -104. 2019 -138-103. 2020- 143-86.
2021-119-75. You can see there has been a gradual decrease over the years and I have been over the 100 level just once this year. I also have Afib and take a blood thinner but Hem/Onc tells me this has little to do with platelet levels. The only way to deal with extreme low platelets, I am told is a blood platelet transfusion and that is a very short term solution. I also feel that exercise makes a difference in overall blood readings. I got lazy with Covid isolation and when I finally got going again it was amazing how much better I felt. Also I live in Canada so if the result numbers I gave you are different from yours, just move the decimal point until they make sense

• This reply was modified 2 years, 5 months ago by Owen Maguire.

[Owen Maguire]

OK Alene I was diagnosed with MDS ( Trilineage) in 2012. No transfusions. Watch and Wait until 2015. Hgl took a dive and placed on Epotine Alfa and Hgl came up but not to normal level. In 2017 WBC AND PLATELETS took a dive and started Vidaza in April 2017. Today I completed my 37 cycle. Other than lack of stamina and sore stomach for about a week after injections I am doing well. I am now 81 and my wife is at home but progressing through stages of dementia. She was a brilliant woman who shared her career with taking care of myself and daughter. Now I am doing my besto take care of her at home and deal with my illness. I am told by my Oncologist And Chemo Nurses that I am a poster patient for Vidaza. It took 4 cycles of Vidaza to show any positive results. Blasts were 4% when diagnosed, went up to 6% and were 3% January 2018. I usually have a couple of days after my Vidaza Injections when I am really down and have made lots of dinners frozen for this period. It seems that everyone reacts differently to Vidaza. I was a person who played golf 5 days a week but for lack of stamina had to pack it in in 2018. Still walk 3 kms 3 times a week but at a slow pace. I hope that this info helps you out in making your decision.

[Owen Maguire]

Hi Diane;
I have just completed my 36 cycle on Vidaza and am trilineage with all readings below normal but manageable without transfusions. I have been been having trouble sleeping and have a couple of friends who had a doctor prescribe CBD oil with supposedly good results. At my Dec appointment with my oncologist I told her of my sleeping problem and proposed solution. She advised no problem without THC and consequently visited my family doctor who wrote out a prescription for medical CBD oil from Aurora.com and am awaiting delivery. I live just outside Calgary AB and have been re-reading yours posts relative to you CBD usage. Do you have any further advice regarding dosage and usage etc.?

[Owen Maguire]

Pam: I complete my 34 cycle on Vidaza tomorrow. I am Trilineage and had 4% blasts when diagnosed in 2012. Was on W & W until 2015 when Hgl. dipped and placed on 40,000 units Epotine Alfa (Eprex) self injected each week. This stabilized Hgl but below normal level. Blasts rose to 6% in Jan 2917 and started Vidaza. Saw a slight dip in all areas for 3 months then all 3 areas began to rise. Over last 2 and half years platelets have been in low normal range but have a tendency to jump all over the place. WBC continue to remain lower than normal except when I need antibiotics for chronic sinus infection and then approach low normal. My original Oncologist retired and my new one was shocked I was still on Eprex with Vidaza. My Hgl had been rising and in 2 month period was just below low normal. Her concern was that the Eprex with Vidaza would cause the Hgl to take a drastic rise. We reach3d a c
ompromise and I now inject Eprex every other week. My Hgl hs dropped about 10 points. My most recent blasts were 3%.

[Owen Maguire]

I will start my 28 Vidaza cycle next week. 7 days on 21 off. I am trilineage – Hgl, WBC and Platelets below normal. I take Anti Nausea pill half hour before injections and have never experienced nausea. Have never had a transfusion but self inject 40,000 units of Epotin Alfa to increase RBC, once a week. After a year off, am back playing golf twice a week using electric golf cart. Tried playing the week I received injections and was quite tired at end of round so am taking that week off. Starting the night before my first Vidaza injections and continuing every day that week I take a laxative to prevent constipation from Anti Nausea pill. My stomach is sore at some of the injection sites for about a week after the last injection. I also have been subject to morning diarrhea the week after treatment but this is not ongoing. When not golfing I walk 3 kms three times a week. My biggest complaint is tiring much faster, after doing a semi strenuous task. If I sit down and rest as soon as the body acts out I am back to normal in 10 to 15 minutes. I am 80 years old and my wife of 81 is having memory issues so I do most of the cooking and household tasks . I was diagnosed with MDS in late 2012 and between aging and Vidaza I know that I digress a bit each year. Most important I am not going down from this disease without a damn good fight.

[Owen Maguire]

Gailb I can personally relate to the circumstances you describe. I live in a community south of the Tom Baker Cancer in Calgary Alberta. There is a first rate sattelite Chemo Centre at our local hospital of the Tom Baker Centre. It is closed on the weekend and I have to drive to Calgary (1 1/2 hours ) on the weekend. My Hemotologist/Oncologist was involved in the original Vidaza trials and believes the dosage should not be interrupted. There are 4 other Vidaza patients at my Centre and their Oncologists let them miss the weekend and make it up on the Monday and Tuesday. I am just finishing my 27 Vidaza Cycle and am Trilineage although have never needed a transfusion. I am told I am a poster person for Vidaza even though my Hmgl, WBC and Platelets continuously remain below normal range.

[Owen Maguire]

Pat ,like you the reference shown for normal in my CBC readings is different than normally shown here. I am Trilineage so note that normal numbers Hmgl,WBC and Platelets are much smaller than shown here. The reason for the difference lies with the units of measure utilized. In my case the WBC normal range is shown as 4.0 – 11.0 (10E9/ Litres). As you noted in your post the normal range mostly shown on this site is measured in MM.
I am in the middle of my 27 cycle of Viaza at age 81 with no transfusions. Occasionally my Platelets slide into the normal range and my Hmgl and WBC bounce up and down but never get to,the normal range. I walk about 3 kms 3 times a week but had to give up golfing last year. I live in a suburb of Calgary ! Alberta and am lucky to have a sattelite Chemo Centre of the Calgary Tom Baker Cancer Centre at our local hospital. I’m told by my Hematologist/Oncologist that the Litre Unit of measure is mostly used in Canada and the UK.

[Owen Maguire]

I was placed on Epotine-alpha in 2015 when my Hemoglobin took a dive. I have MDS Trilineage and was diagnosed in 2012. Up to that time I was on watch and wait. I am on “Eprex (Canada) 40,000 units which I self inject once a week. It has held the Hemoglobin up since that time but is still below accepted standards. Because of WBC falling in April 2015 I was placed on Vidaza and am presently in the middle of my 23 7/21 day cycle. There was a lot of discussion about stopping Eprex when I started Vidaza but it was decided to stay the course and my Hemaglobin has stayed about the same level. I have personally suffered no side effects from Eprex. With Vidaza my Platelets have moved to normal range on a few occasions and WBC gone up but still much lower than normal. Have never required a transfusion to date.

[Owen Maguire]

Gerry
When I was diagnosed with low risk Trilineage MDS in 2012 I specificaly asked my Hemotologist/Oncologist what this meant. His immediate reply was that my Hgl , WBC and Platelets were below normal limits and Blasts were 4% which were slightly above normal.At that time I was low risk to proceed to Leukemia. I was on Watch and Wait until 2015 when my Hg took a dive and I began self injecting Epotine Alfa (Eprex) 40,000 units once a week. This has brought the Hg up to a consistent mid 125 ( Ref – 137-180 ) I was reclassified as Low Moderate MDS. In Jan 2017 my WBC and Platelets fell and in April I commenced Vidaza 7 on and 21 off. My last blood results in early July 2018 were Hg 124, Platelets 121 ( Ref 150-400) and WBC 2.2 (Ref 4.0-11.0) My Blasts which had been 6% a year previously are now 3%. My classification remains at low moderate MDS. Each month when I have my appointment with my Oncologist the Nurses tell me I am doing great on Vidaza. The Oncologist says he is Cautiously Optimistic and I have never needed a transfusion. From my perspective if MDS is stated in the clasification you have MDS and Low, Moderate and High relates to the likelihood of progressing to full Leukemia.

[Owen Maguire]

I am 79 with Multilineage MDS and have been injecting 40,000 units EPO (EPREX) once a week for 2 and a half years. My Hgl has gone from 111 to between 150 and 124 the last 3 months. Because of a fall in my WBC (1.6) I was placed on Vidaza ( 7 days on and 21 off) I start my 11th cycle this coming week and while my platelet, WBC neutrophils and RBC readings are not in the acceptable range they have all improved significantly. My Oncologist is ” Guardedly optamistic ” like a number of people on this forum I get tired more easily than before and a lot of times I forget to pace myself and suffer for it. I LOVE golf but even with driving in my cart I can not keep up with my normal group so am calling it quits this year and will increase my walking program. I have trouble with swelling and lumps on my stomach at injection sites but my Oncologist believes best results are acheived by direct injection and wants me to continue this way. All in all I do not feel that I an going downhill.

[Owen Maguire]

I am 79 with Multilineage MDS and have been injecting 40,000 units EPO (EPREX) once a week for 2 and a half years. My Hgl has gone from 110 to between 150 and 124 the last 3 months. Because of a fall in Wa

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