New to MDS

[SandyB]

My husband of 38 years, is only 64, and has been tenatively diagnosed with MDS. His medical team has been trying to put a name to it since Aug. 1, 2005. It has been so frustrating and concerning.

I really would appreciate your experiences on the following.

1. Has anyone known of someone with a misdiagnosis of MDS?

2. Has anyone ever heard of a connection between Parvo Virus and MDS?

3. Has anyone been told that they have breakage of the #20 chromosome?

[Brenda P]

Hi, I’m relatively new to the forum as well, my dad was just diagnosed. Here’s answers, from your last question to first:

Lots of MDS people have breakage of the 20 chromosome, are there any other chromosomal abnormalities in your husband’s bone marrow? That would help with the diagnosis.

Anemia can be due to temporary factors, but if he has had low blood cell counts since August, then I would imagine that his bone marrow is not going to spontaneously start working again. Can you tell us more about his blood cell counts? What percent blasts are in his marrow, in his blood? Is he low/high on his RBC, WBC, and platelet counts?

I’ve never heard of an association wtih parvo, but the true cause of MDS is still hard to put a finger on. Some say it’s age related, or could be due to contact with benzene, or to smoking.

I wish you the best, and hope you stay on the board! Please see a center of excellence, you may be close to the Mayo clinic. You can search for a center of excellence from the home page of this site. It would be best to have your husband talk to experts in MDS because there’s a lot of new stuff developing in terms of treatments, and there are a lot of clinical trials that your husband may be eligible for. He also may be a candidate for a mini bone marrow transplant.

Please feel free to ask any more questions, I know it’s an overwhelming amount of info to go through.

[SandyB]

Brenda:

Thanks so much for your reply. I really appreciate it! I am so grateful to have found this forum, as I know of no one else with MDS.

I am going to give you more background and hopefully respond to your questions as well.

Mike, my husband had a kidney stone attack on the morning of Aug. 1, 2005. (He took an early retirement in May, 2995) During his emergency room treatment, they found that his blood counts were very low. The quest for cause began.

We do have a hemotologist here, and we travel to the Clarian Transplant Center in Indianapolis, In. which is actually the University of Indiana MDS Center of Excellence. Dr. Cripe and his associates are wonderful.

Our quest has been long. Mike underwent a total of 4 Bone Marrow Biopsies, and unfortunately, to this date, we do not have a clear slide for the pathologists to count blasts. (None of these were done at Clarian, but at our local hospital.)

They do intend on doing a new one in the near future at Indiana.

We have only received “guess” estimations on blasts ranging anywhere from 5 to 10 % in marrow and none in periperal. Since this is one of the, or the, hardest diagnosis to make, I still don’t feel totally sure that MDS is it.

I have done almost continuous research since MDS was mentioned to us. During that time I did find that there are those who think that Parvo Virus can imitate and have a causative effect similar to MDS. Therefore, I requested that an Antibody B19 Test, an IGM and IGMM Test be performed. They are going to do that in Mid March.

Mike also was on two medications that can cause pancytopenia. Triamterene and Zoloft.

His WBC is 1.5, RBC 2.60, Hgb 8.9, Plt 80 (had been running at 100 until this week). We still get blood tests every two weeks.

We have been told to take only a multivitamin and not to take any other herbs or supplements.

I have been reading where others are taking some additional supplements.

I have been a “Pit-Bull” Advocate for Mike and have spoken to other Dr.s about some of the questionable spots in this diagnosis.

Revlimid sounds exciting, but don’t know if this will be in Mikes future or not.

Sorry to ramble.

[sugarwhale]

Dear Sandy,
I can answer a FEW of your questions, but not all of them. First, welcome to the Forum! You’ll find a lot of answers here.
I have not personally known of anyone in whom MDS was misdiagnosed. However, MDS DOES resemble a few other diseases, so I would think this is possible. MDS often (but not always) affects people who have been cured of cancer and had chemo and/or radiation many years earlier. In my mom’s case, she had an overdose of radiation for breast cancer in the mid-1970s.
Revlimid, so far, is only available for MDS with -5q. Our doctor is trying to get my mom on revlimid. We are getting nowhere, however, because of the recent changes in the healthcare programs. The only way, so far, my mom can fill our doctor’s prescription, is by paying $7000 per month. I’m sure other members of the Forum will tell you that there ARE ways to avoid this, and that the price is only high because the research and distribution cost so much. In my opinion, that’s BALONEY! My mom DOES have good insurance and medicare, but the company always has an excuse. Revlimid will be in a lot of our futures, but it may take a while.
My mom takes Esiak caps–with our doctor’s blessing and approval. They are really, really helping!
Here is my advice to you, for whatever it’s worth: Learn all you can. Investigate alternative treatments, with your doctor’s help. You also might look back on the Forum and find valuable information from past posts.
Good luck to you!
~~~ Janet

[CarolineG]

Hi Sandy,

I have never heard of a connection between Parvo and MDS. In fact, I didn’t even know that humans can get Parvo Disease.

MDS and its related diseases are very difficult to pinpoint. There doesn’t seem to be a pattern that everyone follows. Our Oncologist likened each patient’s symptoms to a jigsaw puzzle.

My Dad (79) had been diagnosed with MDS for almost 3 years before it transitioned to CMML. He also has kidney failure now. That started to rear its ugly head the very same week that we got the BMB results which confirmed CMML last summer. Erythropoietin, which is the hormone (I think) that stimulates the bone marrow to produce Hgb is found in the Nephrons….which are in the kidneys. I have been told by all of Dad’s doctors that the 2 diseases can quite often go hand in hand. If the kidneys don’t work properly, the nephrons inside them are not working properly. If the nephrons are not working properly, the erythropoietin is not being manufactured properly. Dad’s very first symptoms of kidney failure were kidney stones. What we did not know was that he as probably had kidney problems for up to 15 years and never had any clue. That wasn’t detected until one of his doctors looked back over Dad’s entire past health history and pieced it all together. They now feel that Dad had the kidney problems first and his blood problems followed. He was also exposed to Benzene.

Dad also has been told not to take herbs of any kind at this time. It wasn’t so much for the MDS or the CMML. It was because of his kidney problems. It was explained in detail to me but I can’t remember enough to repeat it. It had to do with the nephron problems. Everything we ingest gets processed by either the liver or the kidneys. In our case, they have advised Dad not to add anything new to his kidneys which may tax them any harder. Maybe it is because of how fragile he already is and his kidneys can’t take any more stress…perhaps it is because of his age. I don’t know but I do know that they were adament that he stay away from anything which he has not taken in the past. I have read that alot of people on this forum have taken many herbs and supplements and have had great success. Again…jigsaw puzzle. The one thing that Dad changed in his life which has made a world of difference is WATER. He drinks 8 bottles of filtered water a day.

Keep reading this forum, asking questions and doing research. You certainly came to the right place.

Best Wishes,
Caroline

[Neil]

Hi Sandy,
Answers to your questions
1. yes
2. No
3. Yes
Dr Cripe has a very good reputation. Would be confidant he will come up with some options.
It is a bit unusual for a misdiagnosis of MDS—BUT he may not fit exactly into one of the usual classifications. There are some MDS patients who have been unclassified. I was for several years till The World Health Organization came up with Refractory Cytopenia with Multilineage Dysplasia.
It is a broad classification that has some patients with a poor prognosis and others with a good prognosis. Depends upon the counts and how they trend over time.
A 20q- usually has a good prognosis. Is this what he has? Not sure how you define “breakage”. A 20q- is a deletion of the long arm for example.
As a rule the patient has low RBC, HGB,WBC but not so low that transfusions are necessary. Often they respond to Procrit. Their neutraphils are pretty good even though WBC is low. They seem to handle infections. Platelets are generally pretty low, but they seem to have enough normal platelets to get by without symptoms of low platelets.
Energy fades at the end of the day. Otherwise the patient leads a pretty normal life and looks to be healthy.
Does any of this fit?
As a rule a BMB pretty well defines the issues that indicate a patient has MDS.
Have there been any changes in the cells from one BMB to another? If so would be looking for the reason for the changes. If not—–
In my case my megakaryocytes increased over the years in an effort to produce more platelets. Not much else has changed over 9 years.
Hope this is of some help and stimulates some questions for his docs.

[SandyB]

Hi Neil,

Thanks so much for your response. As far as I know, the missing 20 arm is the only abnormality that Mike has. What you said sounds encouraging.

As I mentioned the BMB slide is not clear to the pathologists and we have had only “guesstamations” on the blast numbers. (Somewhere between 5% and 10%.) Not being sure of this makes me very uncomfortable. I understand that a 5% Blast Count is considered normal in some people.

They are going to do another one a little down the road. Right now it has been just watch and see.

It sounds like you are doing well. That’s great.

[SandyB]

Hi Caroline:

Thanks for your reply. Humans do get Parvo Virus. In children it is known as “Fifths Disease” or “Slap Cheek Disease.”

My 6 year old niece had it about a year ago, and Mike and I were both exposed. I broke out in a rash, but Mike had no reaction. That was during the time that his blood counts started to fall. I checked with the University of Chicago and they said that the residual effects of Parvo Virus can stay in the blood stream and produce the same effects on the blood as MDS.

If you would like more information, look on the Internet. In the search area put in Parvo Virus + MDS.

Mike is going to have the Antibody B19 Test and the IGM or IGGM test in March. We will be very anxious to get those results.

There have be cases where someone was diagnosed with MDS, and it turned out to be Parvo Virus.

[SandyB]

Sugarwhale:

Thanks for your reply and information on Revlimid. I can’t believe the cost. Our Dr. has contacted our Insurance Company with the recommendation of Revlimid for Mike in the future, but no response so far.

This is a very “gray area” disease it would seem, and I guess a lot of us have constant on-going questions. Thanks for your help.

[Billy’s Dad]

Hello Sandy B.

Welcome to the World of MDS. I’m sorry you have to be here………..BUT,

You are truly in the “Right Place” for answers. Don’t be afraid to ask for help, it flow’s freely here.

Be Well, my best to you and Yours.

Bill

Billy’s Page

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