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Jack Allen
ParticipantNancy, your husband has a choice between 2 evils.
Your body makes more haemogloben when you smoke to compensate for the reduced oxygen you inhale.
He will drop at least 1.0 if he quits.
I was running perfectly at 12 for several years and decided to quit and fell to 9 in 2 months. Doctor said it was normal to lose 1.0.ParticipantHi Malissa,
I just read your note and it was nostalgic to me. I have RARS and went through much the same journey.
I lived in Toronto Canada and moved to Calgary Canada with my wife when I was 35. We built a wonderful life; did well on investments; were going to have good pensions and looked forward to a retirement with lots of travel, etc.
That world came crashing down when I was 52(2002) and diagnosed with RARS. When the doctor told me, he said “you had better get your affairs in order”.
At that time I guess it was extremely uncommon, perhaps not well diagnosed, but in any event I scoured the internet and it said 1 in a million would get MDS and 2% of those would be RARS. Doing the math that meant 1 in 50 million.
Canada’s population was less han 35 million at the time so you can imagine my dismay. My wife and I got our affairs in order. I never went back to work and we decided we had to tell all our friends and family in person not by telephone or email. Big roadtrip thousands of miles.
On our return I surprised everyone, including my doctor and was unchanged on my counts for several years.
At one review my doctor turned to my wife and said “at this rate he ight outlive us both”
After hearing that I dcided to make some lifestyle improvements. I quit smoking. I was down to 6 cigs a day for a long time anyway.
Well, upon doing that my hg dropped 10 points on my next visit. Doc said that would be expected; your body makes more red cells to compensate for reduced oxygen that smokers get.
However they continued to drop from a stating point of 130 to 90.
At 90 a I started to develop A-fib.
My first recommendation to readers. IF YOU ARE STABLE CHANGE NOTHING.
A transfusion was given and my A-fib disappeared. It was agreed the I would be kept at a baseline above 100.
In 2007 my wife convinced me to move back to Toronto to be closer to family and friends, although we had many close friends in Calgary. Thhe convincing point was that they may want to visit and none of them could afford to fly to Calgary.
So we moved back and I went to see the Canadian guru of MDS at Sunnybrook. He had connections he put me through,
all the meds. Darbypoetin, anaresp, valpoic acid, revlimid, Vidaza, maybe others I don’t even remember. The best one for me was Revlimid eventhough I suspect it destroyed my thyroid. One year perfect, next year dead. The next best was Vidaza but for me I would never do it again; not worth the pain.
On a further note, I went to Sunnybrook for a transfusion 1 day, a long drive for us, spent the morning, $25.00 for parking plus cafeteria lunch to go back to the transfusion lab at noon to start my transfusion (IV had been put in in the morning) only to find that my hg result was 86 and at that hospital their cutoff for transfusion
was an hg count of 85. They pulled th IV and sent my home.
I asked to be referred to another doctor closer to home and started to get my transfusions from Oshawa Hospital where my doctor overides the blood restrictions.
Ontario health care is rediculously stupid. I have had so many heart problems and operations and cardio conversions, echo cardiograms, etc, etc, just because they refused to keep my baseline at 100. They have spent millions on cardio care.
NOTE TO READERS; HOSPITALS AND BLOOD SERVICES HAVE DIFFERENT BASELINE RESTRICTIONS. FIND A DOCTOR WHO KNOWS THEM AND CAN GET YOU THE MOST BLOOD.
I am now 72 (20 years into it) way past my given best before date.
I have developed severe lung problems and am now on 7 by 24 home oxygen and connot make to stairs once I get into the 80s hg.
I have also moved to 2 bags of blood every week have come off Luspatercept in case it was a contibutor to my lung problems.
The end my be getting near, but I intend to stick around as long as I can. My teenaghe grandchildren all still like to see me and I still hope to see a great grandchild before I go.
NOTE; IT HELPS A LOT TO MAINTAIN GOALS FOR THE LONGER TERM AND SOMETHING YOU WANT TO DO TOMORROW.ParticipantHi Shiela,
Not sre but i think the main function you are looking for is the creation of neutrophils.for neulasta. one shot is good foe amonth
If so, ask your doctor ifneulasta would be appropriate. One shot is good for a monthParticipantI truly believe that the best medicine is a positive attitude.
I always think of something I really want to do tomorrow.ParticipantHi Paula,
I was on Revlimid 10mg for almost 2 years and it worked very well for about 18 months.
My neuts also went below 0.5 but I was given NeuLasta, one needle/month and my neuts stayed well above 1.0.
I have since seen some notes about side effects but I never had any that I know of, and hey in our world everything can have severe side effectsParticipantHi Paula,
I was on Revlimid 10mg for almost 2 years and it worked very well for about 18 months.
My neuts also went below 0.5 but I was given NeuLasta, one needle/month and my neuts stayed well above 1.0.
I have since seen some notes about side effects but I never had any that I know of, and hey in our world everything can have severe side effectsParticipantHi Mary,
I have tried most if not all of the drugs associated with red cell MDS.
Almost all of them had little if any side effects, but to be honest most didn’t do much for me.
The exceptions where Revlimid, which is in pill form and helped for about 18 months. The other was Vidaza. It was very painful and I wouldn’t wish it on anyone eventhough I endured it for over 2 years.
I have been transfusion dependent for 17 years now. Up to about 1.5 bags/ week now.
The higher you can maintain your counts the better. Use an Iron chelator to offset the Iron you get from transusions. A positive attitute and iron management and you can go a long time on transfusions.ParticipantMatt,
There are many versions of MDS and it will depend on which one he has and whether reds, whites or platelets are affected, or all of the above. Low grade is most likely only red cells.
I have ringed sideoblasts with only reds affected. They told me to get my affairs in order, then 3 months later suggested 5 years. That was 20 years ago.
When blood counts drop you start the get other ogran problems so my advice is,
1. get as much blood as possible.
2. get on an oral iron chelator (e.g generic version of exjade. I like the one made by sandoz the best)
3. Personal preference to try various drugs offered. None of them work for very long for most people, but some have had good success with red cell stimulants like exprex, procrit.etc. and more chemo like drugs like vidaza revlimid, and luspatercept. I got about 18 months transfusion free on revlimid (oral pills) but it seemed to kill my thyroid).
To summarize, itf there is little else wrong and only red affected, transfusions can carry you a long time.
Good luckParticipantI had excessive sweating, even during the day.
Turned out that the prolonged excess of iron had an extremely negative effect on my testes.
All cleared up with hormone replacement (i.e testosterone).
Simple blood test to check levels.ParticipantHi Dale,
I am 72 and also have many co-morbidities.
Stage 4 liver problem due to long term iron overload, heart failure, severe calcification of coronary arteries,
and now lung problems such that my O2 saturation is so low I need home oxygen.
However, I was diagosed more than 20 years ago and have been transfusion dependent for 17 or 18 years. Luckily for me, my MDS affected red cells only. I have tried many different drugs over the years including Vidaza. It also worked for me for about a year.
Revlimid worked for almost 2 years and actually gave me transfusion independence for most of that time. I am currently on Luspatercept. It is supposed to be the perfect drug for me, specifically for ringed sideoblasts. It is having minor improvement on my reds, but it has actually improved my white cells and my platelets to everyone’s surprise.
I am currently close to 1.5 bags of blood every week.
Do not give up !!!
As long as you and your husband keep a positive attitude, blood products should not be his demise. I have probably had at least 500 bags of blood with only 2 minor reactionsParticipantMary,
I have no idea why he started you at 5mg. I started at 10mg in May 2008 and it stopped working early Feb 2010, so 20 months later. Worked very well. I wish I knew why it stopped working. At the top end I hit 12.0.ParticipantCaroline,
Going down to 7.3 from 9.2 over 2 weeks is equivalent to 1 bag of blood every week.
I have been doing that for several years and see no reason to stop any time soon.
I have many other co morbdities including heart failure.
For the last several months my shortness of breath has become unbearable from lung problems and probably
clinical trial luspatercept and I am taking tests to determine if I qualify for O2 at home.
It sounds like your dad is either eady to throw in the towel or he has a lousy doctor.ParticipantHi Mary,
I was diagnosed with MDS RARS 20 years ago and have tried every drug offered for my version of MDS.
Revlimid worked the best (for about 2 years).
Early in the process my thyroid died completely so make sure you get your TSH tested regularly.
My other main side effect was a big drop in WBCs, especially neutrophils (down below.5) so I had to take neupogen, but switched to the once/month shot of NeuLasta which solved the problem.
Others seemed concerned about transfusion levels.
I get 1 or 2 bags every week. Getting to the point where I don’t make many useful RBCs of my own.
Unfortunately, im my opinion, we are slowly being killed by low transfusion levels.
When I lived in Calgary we discovered that I had heart arythmia when my count went under 100 (10.0 for you U.S. people), so my doctor ordered my blood to keep me over 100 and I had no problems.
My wife said we had to move back to family in 2006 so we went to Ontario where you could not get a transfusion at 85 or over.
Stupid , stupid , stupid. They saved 2 bags of blood and what happened; I went into heart failure. So it cost the health care system annual cardiologist vists, echo cardiograms, etc. I went for 3 cardiac ablation surguries which did not work. I also needed 2 stents put in and apparantly have severe calcification of my Aorta and coronary arteries.
The various health care segments seem to only look at their own costs not the overall costs and patient effect.ParticipantI was on neupogen self injection every other day while taking Revlimid.
My Dr. switched me to NeuLasta which is 1 shot/month.
This brought my neuts from, .5 to 2.5 and solved my problem for the full 2 years I was on Revlimid.ParticipantHi all,
I was diagnosed with MDS RARS,hemachromatosis and non alchohol steato-hepatitis in March of 2002. My ferratin levels got to 2500 due to substantial iron overload which caused my liver deterioration. I do not have Delq5.
I was told to get my affairs in order with the expectation of a sort life span. Obviously they we wrong since I am still here 20 years later, I am now 72.
As you can imagine I have tried virtually every drug and chemo offered to me.
One of them was Revlimid. I worked for me for about 2 years with 2 main side efeects.
1. It relatively quickly destroyed my thyroid gland. Fortunately they have pills to replace this function.
2. My WBCs, especially neutrophils went down very low. I had to take neupogen needles every day for some time and then Nulasta came along with a monthly shot. Easy peasy.
I am currently getting transfused one or 2 bags of blood a week
I was trying Luspatercept but its help was very minimal and my lungs are imflammed and damaged causing severe shortness of breath and very low O2 satuation.I and now being tested to see if I can qualify for home oxygen. -
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