Starting my 62nd Cycle of Vidaza

[Owen Maguire]

Diagnosed with MDS Trilineage in Oct 2012 and Watch and wait till 2015. Hmg took a dive and self injected Epotine Alfa every 7 days. April 2017 started Vidaza 7days on 21 off. Relapse in Dec 2020 and Hmg down to 70. First and only 2 units of blood. 4th Bone Marrow 3% Blasts and all readings similar to previous Bone Marrows. Looked at iron level and found to be quite low and placed on double dosage of iron pills for 4 months and Hmg now up to 114. Stomach remains quite bruised from needles but still able to take two needles a day for 7 days. Platelets have been very gradually dropping and now at 91. Will turn 83 tomorrow and am walking 3kms. 3 times a week. Am prepared for time Bone Marrow will reject Vidaza but in meantime have developed a Bucket List of things I want to do and despite Covid am slowly emptying the jar. Was a Federal police officer for 38 years rising to senior position. For Birthday am getting my ears pierced wth gold studs and next day attending police Vets Coffee Group. Eagerly awaiting group reaction, but will fit in with a couple of Vets who used to be under cover drug operators. As you may have guessed I am doing a lot of things I was never able to do before and living my life ; while I still have one; to the fullest.

[Heinz]

Happy birthday to you, Maguire, wishing you all the best.
I am very much impressed about the 62 Vidaza cycles. That is quite encourraging to me, I am at 21 cycles right now and my platlets are already down to arround 60 to begin of therapy and arround 20 15 days later.
I am quite worried abaout that and wonder if and how there is a way to slow this downturn down. Do you have an advice?

[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, 6 months ago by Owen Maguire.

[Amy S.]

Thank you for posting your experience. It is very inspiring and encourages me to continue my fight against MDS. I was disgnosed high-risk in end of 2019. I am at my 23rd cycle of Vidaza. So far my blood counts are maintained to be normal and I believe I am in remission. I try not to think about my health problem most of the time but there are days that I am too scared and anxious to get out of bed. Your posting gave new insignt and very encouraging. After seeing you post, I started putting together my bucket list. Thanks again and happy birthday to you.

[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.

[Heinz]

Hi Owen,
what do you think about dose reduction?
After my last bone marrow puncture, the poor blood counts were attributed to toxic bone marrow damage, the Vidaza injections were reduced to 4 days after previously increasing the therapy break from 21 days to 28 days. Since there has been no visible recovery of the blood values to date, I am thinking about approaching the hematologist for a further reduction to 3 days of injections.
Since the European Medicines Agency (EMA) stipulates a dose reduction to 1/3 in case of worsening blood values, this should be ok. What do you think?

[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.

[Tricia]

Hang Strong …….. thank you for sharing this message. Sending love and prayers.

[Heinz]

Hi Owen,
yesterday’s control measurement after the 21st Vidaza cycle showed miserable values with Hb=7.0 and
platelets=25 x10³.
As a consequence, a blood transfusion is now due for the first time and the therapy will be changed from Vidaza-Mono to Vidaza-Combi with Venetoclax.
The bad Hb value was no longer a surprise, because I have become noticeably more short of breath and felt very weak directly after the 21st therapy.
So now a new stage begins and it will probably be uncomfortable, to put it kindly.
Please keep your fingers crossed.
Heinz

[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

[Heinz]

Hi Owen,
thank you for the link. At the moment I am psychologically stable and I hope it stays that way. If it changes, I will gladly make use of your recommendation.
You surely know the PubMed portal https://pubmed.ncbi.nlm.nih.gov/
For me it is a valuable source of information for all AML related questions.
Take care.
Heinz

[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.

[Heinz]

Hi Owen,
Your interest in the latest AML therapies is admirable.
In fact, there are some therapy approaches that give some hope. The CAR-T cell therapy is certainly one of them, but the adaptation to AML still causes some difficulties, the long term effect will hopefully be increased and the costs can hopefully be reduced.
There are also promising developments in targeted therapies for some gene mutations.
What about you, have mutations been detected in your case? In my case, only one DDX41 mutation was detected, but none that could be targeted.
So let’s continue to hope.
Heinz

[Owen Maguire]

Hello Heinz

I have been tied up on personal business for the last while and finallyam able to get on with other things. I have had 4 bone marrows done and must admit that the first and most recent Hem/Onc have not brought up mutations. I have now gone over the 4 reports and the most recent has a selection dealingwith mutations which is blank. Nevertheless I have a virtual appointment with my Oncologist next Tue before I start my next round of Vidaza and will delve further. Any further reports on how you are doing

[Heinz]

Hi Owen,
I received an RBC concentrate infusion in the meantime and it immediately reduced my shortness of breath.
Next Monday I will start the Vidaza-Venetoclax combination therapy if my blood values are not too bad. Am already very curious to see if they have deteriorated further.
From the Aza-VEN therapy I hope that it works at all, that the side effects remain manageable and that it remains effective for a long time. The main concern is how it will affect the already poor platelets and neutrophils. We will see and I will report back.
Best regards
Heinz

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

[Author]

Posts