Comments on: Signs and Symptoms

By: Theresa

Theresa — Sat, 10 Dec 2011 15:18:44 +0000

My 71 year old husband was diagnosed with MDS in March 2011 after a stroke in February. He also has myeleoproliferative neoplasms and signs of myeleofibrosis. He was originally on Thalomid 50 mg per day, which was lowered to every other day after a second more severe stroke in July 2011. The doctors attributed the stroke to the low hemoglobin count. As there was no improvement with Thalomid, he was switched to Revlimid 10 mg per day about a 1 1/2 months ago. There does not seem to be any improvement and due to the side effects, the doctor has now lowered it to every other day. He has required blood transfusions (2 units of red blood cells) every two weeks since April,and he has had 2 platelet transfusions as well. I notice that he is even more tired and very short of breath lately, even when his hemoglobin is not so low as to require a transfusion. He is also become confused, his short term memory has been severely affected and he is having more difficulty walking. Sometimes he complains of pains in his lower legs. He has developed a cough in the last few days as well. Are these signs of end stage MDS? What can I expect as he gets closer to the end and is there an estimate of how long patients generally live when treatment is not effective?

By: Susan

Susan — Thu, 21 Jul 2011 04:46:30 +0000

Thank you. I didn’t mention in my prior message that she has 5q syndrome as well with all chromosomes showing abnormalties. Mom has chosen to forego all treatment and is on hospice. She was much happier and relieved at making this decision last week. She got pneumonia and is bedridden. She is expected to pass this coming weekend.

By: Beacon Staff

Beacon Staff — Tue, 12 Jul 2011 23:19:14 +0000

Dear Susan, Dr. Mikkael Sekeres from the Cleveland Clinic said the following: "This is a difficult questions to answer. It sounds like, given that frequency of transfusion of blood products, this person’s mother has an advanced form of MDS. It is impossible to say how long she will live, but we probably are not talking on the order of years. People at the end stage of MDS usually are not in pain, but do have episodes of bleeding, infections, and often are quite fatigued. It would be reasonable to consider hospice in such people, but I cannot give that type of advice to someone I haven’t met before."

By: Susan

Susan — Sat, 09 Jul 2011 20:15:48 +0000

My mother is 73 and is getting 5 units of platelets and 2 – 3 units of blood per week. Her body is covered in very large black bruises. She is so very weak all of the time. She is blind in one eye due to a burst vessel in there (2nd time first time was repaired before MDS RAEB-1 diagnosis haveing a 1.2 year median life expectency. She is on Revlimid since May with no apparent improvement. She was only diagnosed May 11, 2011. She just found a black spot on he tongue this am.
Is this end stage MDS?
What has been the experience of end stages for others?
Are we looking at days or weeks?
With almost daily transfusions will the Dr pull the plug on this?

By: Beacon Staff

Beacon Staff — Tue, 14 Jun 2011 13:37:21 +0000

Dear wmmc,

As you probably suspected, the best way to diagnose MDS is via bone marrow biopsy.

MCV stands for mean corpuscular volume and shows the size of the red blood cells. MCH stands for mean corpuscular hemoglobin and shows the amount of hemoglobin in an average red blood cell. These numbers help in the diagnosis of different types of anemia.

You may want to ask for copies of your blood tests to see if any of your blood cell counts are low. If they are, we recommend that you see a hematologist.

We would like to point out that anemia may be a sign for many different diseases, not only MDS.

By: Beacon Staff

Beacon Staff — Tue, 14 Jun 2011 13:18:33 +0000

Dear Margie,

We are very sorry to hear that your father does not seem to be responding to treatment any more (refractory is another word for that).

You may want to read MDS Mitch’s blog MDS Mitch’s blog. It’s just an example of what happened to one person, but we thought you may find it helpful.

You may also want to consider arranging for hospice for your father to make the coming weeks as comfortable as possible for him.

By: wmmc

wmmc — Mon, 13 Jun 2011 13:01:46 +0000

My father has MDS and we used to share the same doctor. I have had irregular results in my blood work for sometime now with the MCH and MCV. They have always been on the high side. The doctor said “it was too much of a coincidence to be a coincidence” but has now left his practice. I have asked a couple other doctors about it and noone seems to be concerned with it at all. This was the same response they had when my ALT and AGT? were elevated. They were not concerned at all. I watched the numbers climb without any response from my health careproviders. I learned later I had something wrong with my liver.
Is there a way to diagnose or preferably rule out MDS without a bone marrow biopsy? and what would high levels of MCH and MCV be indicative of?

By: Margie

Margie — Mon, 13 Jun 2011 12:48:10 +0000

My father was diagnosed in 2004 with MDS. At the time, he was having “black outs” and was anemic. His blood transfussions began roughly every 3 months apart and have progressed to weekly and biweekly needs. He has been hospitalized for infections and GI bleeds. He has really gone down hill this past 6 months and we thought we were going to lose him on several occassions. It amazes me how he can hang on for as long as he has. His doctor now says he is “refractory” – (nonresponsive(?)) and the end is immennent. The information I am about to give you was given to me by my sibling (his caretaker). I was told that his doctor said he had about 2 weeks max. The end will be ugly and painful. He will start having headaches and the pains will move along his back and into other areas of his body. His bone marrow will start to “explode” and the pain would be so severe that he would go into seizures. I will be heading down to be with them in the morning, but I am finding it very hard to accept this ending. It just doesn’t sound plausible and I sometimes think my sibling may be a bit over dramatic. Can anyone verify this scenerio as plausible?

By: Beacon Staff

Beacon Staff — Mon, 14 Jun 2010 21:55:57 +0000

Hi Kathy,

Dr. David Steensma from the Dana-Farber Cancer Institute said:

“While the cause of MDS is unknown in most cases, there is suspicion that exposure to certain chemicals that can damage DNA and injure bone marrow cells may contribute to development of the disease. This is a controversial area, however. It is well recognized that exposure to toxic hydrocarbons such as benzene and certain industrial solvents can cause bone marrow failure. However, many patients who work in factories or other settings where they are at risk for such exposures never get MDS or other blood problems, so there must be other factors involved. Ongoing epidemiological and genetic studies may help answer some of the important questions about how MDS develops.

I am not certain what caused the sense of fullness in your father’s upper right abdomen. This symptom suggests enlargement of the liver, which is uncommon in MDS. Some patients with MDS who have received many red blood transfusions will develop deposits of iron in the liver, which can contribute to liver enlargement.”

By: kathy

kathy — Tue, 01 Jun 2010 01:32:07 +0000

My father died in 2005 of MDS. He worked in an auto factory…could chemicals have contributed to this disease? Also, he complained of a fullness in his upper right abdomen for a couple years before he was diagnosed. His cancer doctor told him that that was common with patients suffering from MDS. I see nothing on any web sites about that now but 5 years ago it was mentioned as a symptom. Can you comment please on these two things? Thank you