MDS is a bone marrow failure disorder
MDS is a blood cancer
Learn More >

Welcome to the MDS Patient Message Board Post New Thread

Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 17 total)
  • Author
    Posts
  • in reply to: MDS DELETION 5 VIDAZA #50086
    Owen Maguire
    Participant

    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.

    in reply to: Did anyone get better after diagnosis? #49918
    Owen Maguire
    Participant

    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.?

    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.

Viewing 15 posts - 1 through 15 (of 17 total)

Login

Login

Search Forums

Review answers to commonly asked questions or get answers to your questions from an MDS expert