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June 5, 2022 at 10:06 pm in reply to: New to MDS, any answers/stories greatly appreciated #58256
Like you have been hearing everyone seems to be different with this disease. Here is some good news. I am 83 and was diagnosed trilineage ( Hem, WBC and Platelets) in 2012. On watch and wait until 2015 when went on Epotin ALPHA (Eprex) to stabilize low Hem in 2015. In 2017 was put on Vidaza 7 days on 145 ML dosage needles in stomach and then 21 days off before repeat. Have just finished 70th cycle. Recently diagnosed with Aortic Stenosis, plugged Aeortic valve and recommended for replacement valve. Heart Surgeon contacted my Oncologist to determine my life expectancy and she did data and now says 5 1/2 years. No sense putting in new valve for someone who will die in a year or 2. I am now going through a series of tests to determine my suitability for (TAVR) Aortic Valve replacement and everything has been positive so far.
Your grandmother is now low risk , so support her to your fullest and do everything to keep her spirits up. Most important start doing information gathering as much as possible on MDS beginning with this Web Site so that you are keeping abreast of the latest research and treatment that is going on. Finally if your grandmother is near one of the centre’s of excellence consider getting a referral for a second opinion.
My Hopes and Prayers go out to you and your Grandmother
I have just completed my 66th cycle of Vidaza. 7 days 165 Ml each day and then 21 days off. I am trilineage ( Hem, platelets and WBC). I have had 4 Bone Marrows. ( Blasts 4%, 6% 3% 3% ). I am 83 and while I have not enough endurance to play golf anymore , I can walk 3 kms 3 times a week. My stomach is permanently bruised and it takes a week for the pain in the stomach to recede. There are times that I want to end the cycle , but there are still a number of things I want to do before I throw in the towel. While Vidaza hasn’t been able to take me to remission, it is allowing me to have a decent quality of life.
I started this thread on Oct 26,2021, mainly to let readers know that there were people with MDS on Vidaza who fortunately were having their life extended long term and were taking advantage of this time to do things that they had been thinking about but never got around to doing. As an aside, I have just finished writing the future Obituaries for my wife and myself. While this might appear morbid, I found it very therapeutic as my mind searched over events that had occurred which formed who I am and despite misteps along the way,I could still look in the mirror and be pleased with what I saw. Most important of all it reinforced all of the love I have for my wife, who is in care with Dementia,and the sacrifices she made as we moved 12 times across Canada for my career. Any thoughts that I might have had of slacking off on my fight against MDS have been thrown aside as she needs my full support as long as I can give it to her. To Heinz and Amy I will continue to monitor any reports you put out on how you are progressing with your own fight and know that you will always be in my thoughts and prayers.
Hi Heinz and Amy
You are correct Heinz about interpretation of the values. You just move the decimal point. In Canada normal Hem is 137 – 180 (g/L) WBC is 4.0-6.0 (10E9/L)
Platelets 150-400 (10E9/L). Had my virtual appointment with the Fellow as she is called. I already had seen that my blood results were pretty much the same as last month so thought I would have my appointment with her rather than my Oncologist. As I said before they are quite happy with how I am holding my own. She returned to increasing the period between me injecting the Epotine Alfa and went into great detail about the possibility of blood clots and stroke. I let her finish , but as thorough as she had been in going over my history she had missed the fact that I have been on a blood thinner since 2012 because of A Fib. Amy I again raised the question of both using a port for Vidaza Injections and also going to the pill. The Fellow and my Oncologist had a discussion about this after my appointment last month and basically the decision was I have got to where I am with the present routine with basically a decent quality of life so let’s not tempt fate by changing the routine. I could not think of any rebuttal. As for you Heinz a bit of good news with the platelets so I will keep my fingers crossed as you move on to the next stage.
As I said in my last message to Heinz my original Hem/Onc who was involved in the original tests of Vidaza was emphatic that Vidaza be administered in the stomach. My present Hem/Onc feels the same way and I know that all persons receiving Vidaza at the Clinic I do, receive it by needle in the stomach. As far as any change in the cycle is concerned they look at how MDS applies to me. I am trilineage ( low Hem, WBC and Platelets). Just got my blood results for my Hem/Onc appointment tomorrow. Hem 115 WBC 1.7 Pla 95. I can already say that my treatment team will be happy , Give me a pep talk to keep on going and see you next month. The only change that took place about 6 months ago was a change in my self injecting of Epotine Alfa from every 7 days to 10 days as my Hem rose up to 124 and they were concerned it could quickly rise above normal limits. It has held at 115 for the last 3 months. I quite often feel like a juggler trying to keep my 3 difficenties
balanced without knocking one out of rotation.
It appears that both of us have been using a similar routine with Evening Primrose. It is only in the past year that the brusing began remaining and has now become permanent. I spoke to my Oncologist about this about 6 months ago and her answer was that over time the stomach area has difficulty recovering totally from consistent irritation. I noted that a number of people in the U.S, have a port inserted and get the drug interveinisly. I brought this up with my first Oncologist who was a living legend in the Blood cancer field and had been fully involved in the Aza trials. The answer was a definite no as his belief was the best results were obtained by injection in the stomach. As far as I can determine in Canada a port is not used. As far as the oral Aza is concerned I understand it may have been used on a trial basis at the Tom Baker Cancer Centre in Calgary but has not been utilized at the Satelite Cancer Centres where I am treated 50 miles away. I believe that they are seeing me as somewhat of a guini pig because most people do not get to the point where I am with Aza Injections. Any further info on what is happening with yourself?
I will be on my 64 th cycle over the holiday season. My schedule is Dec 29,30,31 Jan 4,5,6,7.. Also I get my needles at a satellite Cancer Centre 50 miles from the Tom Baker Cancer Hospital in Calgary and the centre is closed on the weekend. I pick up these 2 days on the Mon and Tue. Have had no promblems or ill effects
Sorry Heinz and Amy for being delinquent in keeping up with comment to your posts.My wife who has Demetia resides in a beautiful large Assisted Living up to full Care Facility. I am a member of the Care Giver and Residents Council and have been involved in setting up displays on 6 floors for the Holiday Season. I then spent most of my time with Maggie decorating her room with a small tree and ornaments that were special to her. She knows who I am ,but can not remember that her room is decorated so each time we come back to her room it is a new adventure.
I am sorry to hear there were no positive results to your treatment Heinz but in view of Amy’s comments am hoping for better results as you progress. I will download the article thread you sent to Amy when I am finished here. For me I finished cycle 63 last week and my schedule for cycle 64 is quite disjointed over the holiday season. The bruises on my stomach seem to be permanent now but the soreness continues to disappears after a week. Only thing new is the night sweats that I had when I was diagnosed and have been gone for a number of years have returned with abundance . Take care both of you and know that my thoughts and prayers are with you.
Had my virtual appointment on Tue. My Hem/Onc who is on the lead transplant team was not available so appointment was with what in my day we called a Resident , but is now called a fellow ( I think short for fellowship) They work for 4 months with the top Oncologists before they are fully certified. I have had this happen a few times before when there has been no change in my blood work and nothing looks pressing. Actually It is refreshing as the fellow goes into great depth on your condition ( I do not have mutations), and did an update on the International scoring system ( I am on the border of low/Intermediate risk). She was also amazed that I was starting 63 Vidaza Cycle. Only disagreement we had was her suggesting we cut back my self injecting E Potin Alfa from every 10 days to every 15 days. Told her Dr Savoie and myself had discussed this and agreed with 10 days as Hgl was 115 and I was able to walk 3 kms without discomfort. Talked to her regarding similar treatment you are on. She said Dr.Savoie has two patient on this treatment but nothing further. Keep me up to date on how you are progressing.
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
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.
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 .
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.
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.
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 8 months ago by Owen Maguire.