Platelets

[Mark Simpson]

Platelets have gone down to 75000, were always between 114,000 to 117,000. Neutrophils are at .06. Originally I was told I had 2 years to live. With Vidaza another 2 years to live. Total 4 years. I have low grade leukemia.

[Sherry Pratt]

Mark, please email me. Pratt8075@gmail.com. Use subject platelets

[Mark Simpson]

Are you taking vidaza as well. Not sure when I will get my first injections. Had my colon removed in March 14th 2017. Just got reversed on October 17th, 2017. In a lot of pain. Constantly getting Urinary Tract Infections.

[JAH]

Mark, when I was diagnosed back in 2007, my oncologist told me I had 2 years to live & I am still here! I took Revlimid for years & that stopped being effective so I now have Vidaza IV for 7 dyas every 28 days. I guess what I am saying is that even doctors can be wrong! Hang in there & keep positive.

[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]

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.

[Allan Romriell]

Owen,
Just wondering what variation of MDS you have. I was officially diagnosed with MDS-RS after BMB in late june 2017. Routine blood work in april showed platelets were 75 and other counts somewhat low also. AT my last apt in mid October platelets back at 150+ and only hemoglobin a little low at around 12. This is with no treatment on watch and wait. This is one strange disease, seems to be all over the map with everyone. I am glad your treatment is working well for you right now, I hope when mine progresses to treatment phase that the drugs will work for me. All the best to you.

[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

[Cecile Huston]

I just finished my 6th Vidaza cycle and also today had my 2nd bone marrow biopsy so do not have the results for some time form that, my statement here is that when I started vidaza and was injected in the stomach or arm, my skin could not take that, peeled and itched something terrible, I am also in a clinical trial so my Dr. checked and we are able to use my port for vidaza as well so no more injection problems, just a thought if you can do that. My counts so far are not real high or not real low, so keeping me alive and that is enough for me. I am able to do most anything I want at 75 but takes me longer as I don’t have the energy I had before. I will not even consider a bone marrow transplant at my age.

[David Spicer]

The forum Owen mentioned is at forums.marrowforums.org and it has sections for various diseases.

[Allan Romriell]

Thank you all for the information, it is encouraging to hear from others who at having some success in fighting this disease.

[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.

[Cecile Huston]

Owen, I like you feel I am lucky compared to some of the other MDS patients, my MDS was caused by having breast cancer in 2000 and having radiation and chemo, but non the less just a life changing, I had 2 bone marrow biopsies before we started treatment in June, I am so thankful my oncologist found they could use my port since the injections were so painful. Here in Ks we get a winter as well, I don’t look forward to driving to KC 10 times a month for treatment in the winter but have to do it, they told me if I stop treatment I would maybe have 2 yrs. I am not ready to do that, my cardiologist told me he has a patient that has been on vidiza for 10 yrs and still alive so there is hope, I do have hope as well that the clinical trial chemo will make a difference so maybe this last BMB I just had will have better results, hang in there, one day at a time.

[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

[michell Day]

Hello everyone my Mom was diagnosed with Acute myeloid leukemia going on six years ago when she was 80 years old. The doctor told her she was too old for a bone marrow transplant it would probably kill her due to having her immune system zapped. So they started treating her with Vidza and lo and behold it went into remission and she was left with MDS The doctors have continued to treat her with Vidaza once a month for 5 days in a row. Mom has done exceptionally well she still drives wherever she likes and even mows grass. The side effects have been brain fog severe constipation headaches and joint pain. Recently her platelets have starting dropping the doctor said the vidaza is starting to fail.For now we are not doing anything different until her count goes below 50,000. I am hoping some of the rescue drugs will fix this situation but we want know more until we go to UAB to see a specialist. There is hope there is always hope for all of you. Just a side note her hair has not fallen out and she has thrown up maybe twice in almost 6 years.

• This reply was modified 6 years, 4 months ago by michell Day.
• This reply was modified 6 years, 4 months ago by michell Day.

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