[Owen Maguire]

I regret not replying to` Heinz before now but a number of circumstances prevented it. The day after Xmas I came down with a severe cold and when I used the home test kit I was positive for my second bout of Covid. Not as severe as my last bout but much longer lasting. My daughter and son-in-law had flown here for Xmas and she stayed an extra 2 weeks and nursed me. I missed my next cycle of Inqovi. When I recovered I returned to visiting my wife in the long term care facility where she resides 3 days a week and while I mask up a respiratory infection started up and I succumbed to this but was not severe. Went back to Inqovi and my Oncologist decided that my 5th bone marrow should be done to see what was going on. Had the Bone Marrow and appointment with Oncologist today. Finally some good news.All of the Bone Marrow Cell Differential results were within normal range.. Some examples. Blasts 2% ; Plasma Cells 2%; Neutrophils and Bands 25%; Lymphocytes 9% Monocyte 2%. My CBC results Hem; Pl, WBC ,, etc continue to be well below normal at the end of the Inqovi cycle but they are recovering much faster than before. Tiredness sill a problem but I am forcing myself to ride 30 minutes 4 days a week on my stationary bike,although very slowly. We decided today I would continue on Inqovi.

[Owen Maguire]

Hi Heinz

Completed my 3rd cycle of Inqovi a couple of weeks ago. 3 pills on alternate days and 23 off. Similar drop In CBC but rise in all categories CBC over the next couple of weeks is much quicker than before. I get my blood taken every Friday morning and have results through App on my phone by the afternoon. Also am being monitored by nurses at Cancer Centre and get a phone call every few days wanting to know what if any side effects I am experiencing. Fatigue ( Much greater than with Vidaza is my reply) My Hematologist/Oncologist assures me based on her experience with other patients that we are heading in the right direction. Hope we get there soon.

[Owen Maguire]

I was diagnosed with MDS in Oct 2012. Watch & wait. Had surgery in May 2013 and Hm/Onc prescribed Antibodics. Don’t think they were given and ended up with massive infection which led to 2 transfusions which eventually got me back to watch and wait. 2015 Hem took a dive and placed on self injection with Eprex to bring Hem up . 2017 blood readings in WBC, Platelets, Hem all went down and placed on Vidaza 7 days and 21 off. Have been on Vidaza until Aug 2023 when stomach inje tion sites were not healing. Placed on Inqovi 5 days & 28 days off. All CBC readings went down drastically. Went to 3 pills alternate days and 28 off but blood readings look similar. Have appointment with Hem/Onc in 2 days and looking to go back to Vidaza. I live in Suburb of Calgary, Alberta Canada and know of various ways Vidaza is given in US. Here it is strictly in the stomach. Am not a fan of Inqovi but will let you know what is prescribed.

[Owen Maguire]

Hi Jimmy

They will not use port here and I believe most Cancer Centres in Canada. Asked about it a number of years ago. They are not backward and the new Calgary Cancer Centre that will open in 2024 will be the second largest and diversified in North America. I was at a presentation by the Canadian Aplastic Anemia and MDS Society last Sat and had a chance to speak with the head of MDS Transplant team. I had met her before and she backs up my Hem/Onc when she is away. Said that my name and file came before the Inqovi Review Committee and I met all the requirements for treatment with the oral drug. Is normal to have CBC Levels drop with this drug until proper dosage can be determined. Reassured me that this will happen fairly quickly but as I said previously a frustrating experience even though I had read about side effects before starting treatment.

[Owen Maguire]

Just saw your post Joe and don’t know if you made your decision so will share my experience in event it helps. I have been on Vidaza since Apr 2017. Am Trilineage ( low Hem,Platelets & WBC.) Was tiring easily, and could no longer do a very slow 3km walk. Thought Hem had taken a dive but Echocardiogram showed I had a blocked Aeortic Heart Valve. Heart Surgeon said at 84 years old they would do a TAVI. Catheter with replacement valve shoved through artery in groin up to old valve and shoved inside. Liaison with my Hem/Onc and first question to her what was my projected Life Span. She said 5 years. It was a go. Lots of blood crossmatching to prepare and more than normal monitoring after operation. In one day with operation. CBC done every 2 hours during the night and released the next afternoon after a final CBC. No transfusions necessary and my daughter flew from Vancouver to Calgary to be a caregiver for 2 weeks. Operation was a success and was back on Vidaza the next week. As an aside, in Aug this year my stomach was so sore from needlemarks that would not heal that I commenced treatment with Inqovi tablets. This has so far been a frustrating experience as there has been a significant drop in most areas of my CBC and my Hem/Onc is searching for a proper dosage of Inqovi. Should have a plan in place by next Tue.

[Owen Maguire]

Hi Matt
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

[Owen Maguire]

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.

[Owen Maguire]

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.

Owen

[Owen Maguire]

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.

[Owen Maguire]

Hi Amy,
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.

[Owen Maguire]

Hi Heinz

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?

[Owen Maguire]

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

[Owen Maguire]

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.

Owen

[Owen Maguire]

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.

Owen

[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

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