Newly Diagnosed – Questions

[dana]

My 76 yr old father was diagnosed with MDS last week and I’m having a hard time understanding what we can expect. This is compounded by the fact that I am in a different country than him, and I am getting second hand information regarding his diagnosis. What I have been told is that he has a platelet count of 38 right now (which is the main concern), and that they are going to monitor his blood count, but will not treat it at this time. I was told that WBCs were fine and RBCs were normal also. At this point, he is unable to perform most everyday functions without assistance and his energy level is extremely low.

What questions should my family ask the doctor regarding his condition and the prognosis?

What kind of treatment do they provide for elderly people and what might we expect to come out of the treatment offered?

Most articles that I read regarding MDS make reference to cancer treatments. Is MDS a form of cancer?

From what I understand,for patients with MDS (particularly seniors), something like a common cold or flu is far more likely to escalate into an infection and is also more likely to escalate into something potentially fatal? Is this correct? If this is the case, how can I explain how serious this is to people, without scaring them or sounding like I am overreacting? I want my family to understand the severity of this without having them think he is going to die tomorrow.

I know it’s a lot of questions, but even if I only get one answered…it will help me a lot.

Thanks.

[eve]

first and of the upmost importance is that your dad be seen and treated by a hemotologist that is very familiar with mds – it is very hard to tell you what to expect with mds because everyone with this disease is so very different but if you have a knowledgeable doctor that you have faith in and can talk to most of your questions will be answered- mds is often referred to as a pre-cancer disease – people with mds usually have a hard time fighting infections because their white blood cells are usually compromised (i use the word usually often because as i said before everyone with this disease can react differently)

take a deep breath and gather all the information you can – knowledge is power – it is very frightening, but there have been some remarkable strides in treating mds in the last few years

good luck
eve

[Caroline]

My Dad was diagnosed with MDS almost 3 years ago. He lived a normal life for the whole time except that as time went on, he got more tired and had to rest more of the day. He is 79 years old. He had check ups with his Oncologist every 3 months and had blood tests done. The only treatment he received was Vitamin B-6, 100mg daily. Then this past summer the doctor did another Bone Marrow Biopsy and found that MDS has turned into CMML…Chronic Myelomonocytic Leukemia. MDS is a name given to a number of blood related disorders. Another name for it is Pre-Leukemia or Smouldering Leukemia. It is like a pile of damp leaves smouldering. One spark…such as an infection or flu, etc. and it can transition into full blown Leukemia. My neighbour is a microbiologist who works with blood disorders…he was the one who gave me that analogy to help me understand what MDS is.

The initial reason that Dad went to seek medical help 3 years ago was because he had a purple rash all over his body that would not go away and he had a cold which kept coming back every other week for almost 6 months. That was 3 years ago and Dad STILL has the same cold symptoms. He sniffles and coughs all the time. Rarely does he feel good.

When I wanted to make my family understand what was happening to their Opa, I printed off several pages of information from the internet and made a booklet. I gave it to my husband and each of my children and left them alone with it. I gave it a chance to sink in and also gave them a chance to formulate questions. Then we researched the rest together. Now we all understand about the same amount….which seems some days like nothing at all. This disease changes so quickly and so often that you never really know everything that you wish you knew. In my case, I always feel like I am not prepared enough to help Dad. Always one step behind. We live in Canada and my house is 3 blocks away from my parents so we see them everyday and talk on the phone several times. I take him to all of his doctor visits and I give him his Procrit injection every week. Those are the only 2 constants that I can rely on myself for. The rest is taken one day at a time.

You are doing the right thing by posting on this forum. These people will be a wealth of information for you. I don’t know what I would have done without them so far. Other people on here will be able to help you with formulating questions and with information regarding blood levels. I am still learning all of that myself. Dad’s hemoglobin is the only part of his blood which the doctor has been concerned about so far…or at least what he has discussed with me so I don’t know any more.

Good luck to you and your Dad. I think I know how you feel.

Caroline

[Neil]

Hi Dana,
Did the docs indicate which class of MDS your father has?
Platelet problems can be tricky and at times difficult to pin down. It does take a bit of time to determine if there is a trend.
The following is a copy of a message I sent to another Forum participant earlier this year. Hope it is helpful and prodides some questions for his doc. There is another message I will look for and put in another message if I can locate it in the archives. Might be redundant, but may have more info.

Platelet problems can be difficult to deal with, but there are some thoughts that might help.
He should be seeing a hematologist experienced in treating low platelets! This is very important! Make certain he has such a doc on his team.
The equipment used to measure platelets is accurate within 15,000 units on counts between 50,000 and 500,000. When counts get very low the accuracy is suspect. It takes a series of CBCs to finally get a feel for the actual level.
The presence of symptoms is very important! For example: My platelets have been in the 10,000 range for about 4-5 years. I do not present symptoms of low platelets. Does he have any bruising, bleeding or petechiae? Hopefully no.
When my counts get around 3000 – 5000, my doc has them counted manually. They have always come back at the 10,000 level.
I have had 2 platelet transfusions. One when I needed dental surgery and another when I had a hernia repair.
If platelet tx are necessary, make sure he gets irradiated platelets and they come from a single donor. A patient can receive a limited number of platelet tx till he becomes refractory to them and they do not work. Irradiation and single donor platelets will prevent downstream problems and extend the time tx will be effective.
At present there are no drugs that really grow platelets. Steroids like prednisone help some. My doc claims steroids provide an “artificial” boost. He said there are red and white cells along with platelets in ones tissues and the lining of ones veins and arteries. Steroids release these cells into the blood stream where they become counted. Question is for how long?
How is his Red cell count? If his hematocrit is below 37 there is a very small possibility Procrit might help. Procrit is used to boost red cell counts. In a very few cases and I am one of them it also tends to increase my white and platelet counts also—for a short time. I noticed an increase in WBC and platelets when I got a CBC between shots. This has been happening for 19 months. It could be worth discussing with his doc.
Have him stay away from power tools and drive very carefully.
I have been dealing with this for 8 years and have been very fortunate. Hope he can do as well.
Let us know if MDS is confirmed. If so I have some good info that can help to get up to speed with an understanding of what is happening to his marrow/cells
All of the above should be discussed with his doc to see if it applies in his situation

[Neil]

Hi Dana,
Back again with the other message.
Remember we are all different. May have more questions for your fathers doc.
This was sent to another Forum menber. Ignore the names of others

Have some points you may wish to discuss with Mikes hemo. It gets a little sticky, but you both should have a good grasp of a low platelet condition where there is no bleeding, bruising or petechiae.
If there are no symptoms, why get a platelet tx? At some point a patient will become refractory to plts. We want to delay that point as long as possible.
Some patients have problems with plt counts of 75,000. Others with counts of 10,000 get by without symptoms. Discussions with my hemo covered a couple points. One is the quality of plts. Typically the cells are cloning and the abnormal clones turn out a huge quantity of abnormal plts. They are identified, killed off and flushed. There are still some normal cells that produce normal plts. These are the ones that are identified and counted in a CBC. In my case the 10,000 normal plts are sufficient to handle my needs without symptoms.
Another point– There are plts in ones tissues that are not circulating in the blood stream. In the event of a trauma they go to work and help clotting. This is why when a patient goes on Prednisone or other steroids the plt count goes up—temporarily. The Pred releases the cells in the tissues and the patient sees a boost in plt count since they are now circulating. Question is: for how long.
The average body has about 5 liters of blood. Abour 2.25 liters consist of cells. The rest is plasma (93% water, 7% solids). Of the 2.25 liters of cells .037L are leukocytes, about a bartenders jigger full. About .0065L are platelets— a little over a teaspoonful. The rest are RBCs.
That small volume of NORMAL plts have a pretty big job to do.
I have had counts as low as 3000. No symptoms. The lab techs were in a panic. Get ready for a tx. But my doc reigns them in and asks for a slide. He them manually counts them and they always come out around 10,000.
The equipment used to count platelets is accurate to within 15,000 on counts between 50,000 and 500,000. When counts go low it takes a series of CBCs over time to become “comfortable” with the actual level. Every time they get a new lab tech and that person runs my sample there is a bit of panic. It takes a bit of time to calm them. I’m getting used to it.
When dx 81/2 yrs ago my count was 35,000. It slipped every 6 months till I hit the 10,000 point mid 2001.
Another anamoly. I went on Procrit in Nov 2003. Was on a weekly routine. At one point I had a CBC 3-4 days after my shot. RBC were up AND my WBC and Plt counts were also up. By the time the week was over they they were at “normal”. AM now on a 2 week Procrit interval. After a week all 3 lines peak and go back to “normal” at 14 days. My red counts have increased to an average of 3.6 and 11.9 at the 14 day point. Not only did Procrit boost my reds, it seems to have kicked my marrow into gear and helped WBC and plts. My hemo indicated there has been a very small number of patients where this occured. The Procrit customer service reps would not acknowledge this could happen and recorded my “complaint”.
When I was first dx and we got a handle on my plt condition my hemo said no more contact sports ( at 65?), watch out for any vision problems. Get an annual eye exam and get right in if there are any flashing lights in the corners of the eyes, any blood shot eyes, anything out of the norn. Drive very carefully! An accident could cause real problems. I also get my teeth cleaned every 3-4 months. Bleeding gums are common with low plts, . I wanted to be pro-active with dental hygene. It seems to work in my case. This is not true for all with low plts.
I carry a copy of my latest CBC and BMB results in the glove compartment.
Doc also prescribed Vitamin B6. Seems ther might be some benefit to plt production. I take a multi vitamin and vitamin C. Get all the exercise I can tolerate and all the rest I need. Follow a low carb, low fat diet.
Had to have some dental surgery a few yrs ago. Went in and got a six pack of plts at 11AM and had the surgery at 1PM. No problems.
Had a hernia repair last Oct. Got 2, 6 packs that got me up to 53,000. Had the surgery–no problem. My counts remained in the 30,000 range for almost 3 weeks before going back to 10,000.
At one point I was looking a Thalidomide. Was going to go to Rush Presbyterian in Chgo. When they saw my plt count they insisted I have a plt tx before getting a BMB. I refused and cancelled the appointment. Did not want what I consider an unnecessary tx. Never had a bleeding problem with any other BMB.
It takes some time to get over the apprehension. It takes a lot of effort to avoid panic when I get nicked and start to bleed. So far I have been able to handle them without going to the ER.
If Mike fits my mold, he might be able to avoid the Plt tx—as long as he does not have symptoms and his counts do not trend lower over time.
Might be worth a discussion with his hemo to evaluate his condition.
My classification is Refractory Anemia with Multilineage Dysplasia. A lot different than RAEB

[dana]

Thanks for the kind words and information. It gives me some direction, which I was definitely lacking before.

The hematologist did not mention what “class” he had, but it definitely is a question that we will ask. As far as I know, my dad hasn’t had problems with bleeding or bruising, but last time I saw him, I actually noticed some petechiae, but didn’t think too much of it. As for the other details, I’m not sure, but will certainly find out.

To be honest, my dad is as “stubborn as a mule” when it comes to aging. He denies that he’s getting old and refuses to stop driving. Fortunately, his hematologist is also referring him for geriatric assessment, and I think they will take his license away. He’s in complete denial that he is not well, so getting him to change his eating habits will be pretty challenging. His diet consists of high fat, starch and protein, so converting him to something like a low carb lifestyle will be a challenge…but I will try my best!

Thanks again…I will update the details as I get them.

Dana

[Caroline]

Dana.

My Dad is 79. Same story… He should NOT be driving. It is just a matter of time. He gets his Procrit needle every Thursday and is totally incompacitated with bone pain all day Friday and part of every Saturday. When I told the Dr. about it last week, Dad bawled me out right there and then. “NO NO NO…it is my Arthritis acting up. I do not have side effects from the shots.” He went out raking yesterday and nearly passed out from the strain but he tried to go out again thismorning. My Mom blocked the door so he couldn’t get by. He finally gave up and went to lay down. I think it is that ‘stubborn as a mule’ disposition that these men have that has kept them going strong for this long. They say that ‘mind over matter’ goes a long way. I keep hoping and praying that it does. If so, my Dad will live a long, long time.

Caroline

[Neil]

Hi Dana and Caroline,
I sympathize with the driving issue. — but think about the aging issue a bit. The “get up and go” attitude is a lot better than submiting to defeat!. They will learn to pace themselves with a bit of time—I hope.
Think of the alternative—sitting around looking beaten and saying “woe is me” is not good for you or them. Granted a happy medium is best for all, but give it time and try some gentle persuassion.
There are times I get stubborn too. 9Will admit it here,but not to my family)! I think I learned to pace myself —the hard way. It hurts and you learn much faster when pain is involved. Again, a little more time and gentle persuasion.

[Caroline]

You are absolutely right Neil. I admire that ‘get up and go’ attitude that Dad has. Without it he would not have gotten as far as he has with all of the negativities he has had in his life. I hate to see him going through this and being so stubborn but I can still see that spark of DAD in there. If he were to roll into a ball and stay there, he would not be living anymore. As long as he is feisty, I know that he is living and willing to keep fighting. Dad never has been a person to give up easily and he has always been independent. I never realized how much I admire him until these past few months.
His driving has become a bit eratic and I worry for him. I drive whenever we go out together. That was a huge milestone for him to hand over the steering wheel to his daughter.

Thanks,
Caroline

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