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Viewing 15 posts - 1 through 15 (of 15 total)
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  • in reply to: How long did it take for Vidaza to work for you? #49364
    Owen Maguire
    Participant

    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%.

    in reply to: Can you function on days you get Vidaza.. #46611
    Owen Maguire
    Participant

    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.

    in reply to: Vidaza protocol #46553
    Owen Maguire
    Participant

    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.

    in reply to: Blood test results #46548
    Owen Maguire
    Participant

    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.

    in reply to: EPO Injections #44807
    Owen Maguire
    Participant

    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.

    in reply to: my father has low grade mds what should i do? #36966
    Owen Maguire
    Participant

    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.

    in reply to: MDS and Procrit #34856
    Owen Maguire
    Participant

    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.

    in reply to: MDS and Procrit #34855
    Owen Maguire
    Participant

    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

    in reply to: Platelets #34581
    Owen Maguire
    Participant

    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

    in reply to: Platelets #34573
    Owen Maguire
    Participant

    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.

    in reply to: Platelets #34565
    Owen Maguire
    Participant

    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

    in reply to: Platelets #34476
    Owen Maguire
    Participant

    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.

    in reply to: Platelets #34475
    Owen Maguire
    Participant

    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.

    in reply to: optimizing timing of eprex (epoetin) injections #34473
    Owen Maguire
    Participant

    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.

    in reply to: New Vidaza Patient #32124
    Owen Maguire
    Participant

    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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