Scared

[lost]

hi...I,m new at this..Just really scared. My husband was diagosis with myelodysplastic...on the 22th. of dec. ...merry xmas..we cryed all through xmas..the doctor said he has two years or less...there,s nothing they can do ...he,s 57 year,s old ..he,s to young to die...

[Lisa V]

I think we all know how you're feeling, lost. I was in a state of shock for months after my husband was diagnosed with SAA, and I did a lot of crying. Then I decided to get as involved as I could in his treatment and find out as much as possible about his condition so that I wouldn't feel so helpless. It has really helped me to cope, and I believe it has helped him too because he relies on me to help make treatment decisions and I've found out so much from other patients on forums like this one. Even his doctor includes me as part of the team (up to a point) because there's so much they don't know. With rare diseases like these it's so important to educate yourself and become proactive!

Is your husband's doctor well-versed in MDS? I'm wondering why they have given him such a grim prognosis. What category of MDS does he have, and are there chromosomal abnormalities? I'm not saying the doctor is necessarily wrong, but it just depends on what it is they're looking at. There are many types of MDS and some are more benign than others. There are also medications and treatments that are helpful with some of them but not others, so if it were me I'd want to find out why they're saying 2 years and nothing they can do. Get a second opinion if necessary. Even the most seasoned oncologist usually hasn't seen a lot of AA or MDS cases, so it's good for them (or you) to consult with someone who has, before issuing a blanket verdict like that.

Hang in there!

[lost]

I,m not quite sure why there saying it like that...He has 4 brothers 2 of them are a match for him...but they say they want to wait , to see how fast the diseases is going. They said why make you sick now , we,ll wait , Thats why I,m scared.. why don,t they do something now.I,ll never give up hope...and will check with the doctors and get more answers....Thank you I,m feeling stronger now that I have someone who's going through the same things....
god bless...

[choijk]

Hi,

Please try not to be scared and try to remain calm. I know how you feel though. Although my dad was diagnosed in January 2007, I didn't find out about my dad's condition until a month ago, in March. The first 2 to almost 3 weeks, I was a mess; I couldn't stop crying and kept fretting over what I've read on the Internet. But I continued to trek through and research as much as I can. It's been roughly about a month since I've learned of my dad's condition, and I just take it day by day. Fortunately for me, I am currently not working so I do have the leisure to stay on the Internet all day and research. The most important thing I've learned thus far is, not to believe in those statistics! Medicine and new research is constantly evolving and a lot of the material on the Internet is outdated.

Since I've found out about my dad's condition, I have been his main caretaker. As a caretaker, I also watch his nutrition and juice him vegetables or fruit juices about once to twice a day. The only day I don't juice him are on Sundays when both my parents and I attend church and I am able to sort of not think about my dad's condiiton. Other than that, I've read that juicing organic drinks can help. Who knows, so far it isn't helping but I figure, it wouldn't hurt. It would only help him. My dad is also taking CoQ10 (vitamin) and Cod Liver Oil. I ran these both past our hematologist and he gave us the approval saying that it wouldn't hurt him. Again, doesn't seem like it's working yet, but worth a shot.

But before going into these, what type of MDS does your dad have? There are certain questions that I would ask the doctor:

1) What type of MDS? and the reason your hematologist believes your husband fits into that type of MDS
2) What's his IPSS score? Low? Intermediate-1? Intermediate-2? High?
3) Any excess blasts?
4) Any abnormal chromsomes?
5) What are the treatment plans?
6) Which blood lines are affected? Red ? White? Platelets?

I hope this can be of help. I hope the 2 year prognosis statstical rate the doctor gave you doesn't bog you down any futher. Although the doctor has a medical background, it is up to the man upstairs who determines that. I've came across many people within the last month who were either diagnosed with MDS or AA or other types of cancers where their doctor has been wrong and they've outlived the statistics and they are doing well.

Please in the meanwhile, continue to learn as much as you can. It will help when you go into the doctor's office that you are able to understand some of the medical lingo. Another advice: continue to read through past posts on this forum, I think they may answer some of your questions!

I hope this was of help. Just remember, you are not alone and there are many families who are faced with MDS and they are doing well. Please let me know if I can be of any help.

Best wishes,
June

[lost]

hank you soooo much , this does help . I,m feeling more in control...and ready to start asking questions...thanks again..and I will keep reading...
god bless you all....

[lost]

maybe you can help me understand..how to understand how to read his blood counts...cell counts..wbc..10.4
hgp..115.L
hct-0.343L
rbc-3.98L
platelets--plt-39,c.......mp4-11.4

leukcyte-counts
neutrophils-6.7....lymphogtes-2.7....monocyteso-0.7..eosinophils-0.2
basophils...0.1


Thats the stuff I don,t understand...thanks for your help ...and I,m praying for everyone..god bless

[choijk]

Hi Lost,

I'm not an expert in interpreting these blood counts but I'll give it a shot. If anyone differs, please join and correct me =)

To give you a short answer, it appears that all 3 stem lines of your husband's is affected: the red blood cells (rbc), white blood cells (wbc), and platelets. The red blood cells look like they are probably the ones that are most holding up, however, they are below the normal mark.

I am looking at the chart given by our hospital and it says that the normal is the following:

hgb -14-18
hct - 42-52%
rbc - 4.7-6.1

platelets: 130-400

Neutrophils: 42-75
lymphocytes: 20-51
monocytes: 1-12
eosinophils: 0-10

As you can see, your husband's counts are below the normal range, especially his platelets and his white blood cells. Although I don't know his overall white blood cell count, the neutrophils, lymphocytes, mono's, and eosinophils are all subcategories of the white blood cells.

His hgb (hemoglobin) isn't too bad, but it is below the normal range mark. I found that our doctor usually looks at the hgb. For instance, my dad's rbc are affected the most and his hgb is around a 9 after he is transfused with 2 pints of blood and falls anywhere to the 6's. When he drops to the 6's my dad is ordered a blood transfusion to bring him back up. He is getting blood transfusions about every 3-4 weeks at this time. However, your husband's rbc is holding up right now and hopefully will continue to do so so you have one less thing to worry about.

As for bringing up the platelets, I heard that juicing pineapples and black seasame seeds to help. I don't know, but thought it may be worth a shot.

As for low wbc, I'm sure you read that when a patient's wbc are low, they are more prone to infections. Some of the tips I've read throughout my research is for those with low wbc, to wash their hands and to avoid crowded areas because of germs and other infections. It seems that from the subsets of the wbc, the doctor usually makes sure that the neutrophils are good. Your husband's is a 6.7 so it is low.

Please try not to be scared but I know it is hard not to be when everyday you learn something new or come across something that you don't understand. After awhile, you will be equipped with a good background of knowledge that you will start to feel more comfortable. I think I began to feel like that about 2 weeks after some research. Please feel free to post more or you are more than welcome to private message me and I will try to help as much as possible because I remember when I was in that situation and someone very special was kind enough to take me under their wings and to share what they knew with me. I would love to pass on the favor....

Stay strong and remain positive. =) God has a plan for all of us. Someone once said that we are all part of a "family" and I agree. Don't worry, we are all in this together to fight this ugly battle. You and your husband are in my thoughts...

[lost]

You are such a big help...it is hard when you don,t understand..I have so many new questions now for the doctor...thanks so much for helping me understand ....I,ll let you no what they say...feeling stronger...

[choijk]

Hi Lost,

I am so happy that I can be of help, even if it is minimal. It really makes my day! I don't know which hospital you are treating with or what the protocols are at that hospital, but at the hospital my dad treats at, the patient or the caretakers are allowed to leave a message for the doctor and the doctor calls us back within 24 hours. If your husband's appointment is far along the way, you may want to try to contact him and get at least those questions above answered. I think those are probably the basic questions to ask, especially what type of MDS he has. Once that is figured out, I think you will be able to get a better feel for his condition and will be able to focus on the type of treatment that is geared towards for your husband's type of MDS.

As for my dad, his bone marrow biopsy showed that he is MDS/MPD. Within the MDS category, he is RCMD which is refractory cytopenia with multilineage dysplasia under the WHO classification which means that more than 1 of his stem lines are affected. (Under the FAB, he would be considered RA). For my dad, his rbc's are definetly affected and his wbc are showing left shifts (?? don't really know what that means) and his platelets are looking funky. However, fortunately for us, his wbc and platelets remain in the normal range. Under both FAB and WHO classifications, he is considered a low-risk MDS because he has no abnormal chromosomes nor any excess blasts. You should definetly find out whether or not your husband has any abnormal chromsomes. It appears that patients with a 5q deletion (type of chromsome abnormality) tend to have better responses to some drugs out there such as Vidaza or Remlivid. Plus, the statistics for life expectancy are better for those with a 5q deletion. But who's following the statistics anyway.

But as for the MPD, which is a myeloproliferative disease, he is considered a secondary MF (myelofibrosis). The reason he is classified as MPD is because although his wbc are in the normal range, his monocytes tend to be a little higher than normal. My dad's monocytes tend to range anywhere from 13-15%.

Everyone's MDS may be slightly different from someone else's and thus find that it is probably the most difficult and frustrating part of this disease. What may work for one may not work for another. But one of the best advice I was given is that knowledge is the best weapon against this disease. The more you learn the better equipped you will be. I think it is very important that you learn from your hematologist what type of MDS that your husband has.

That reminds me, I hope that your husband is treating with a hematologist who has some background in MDS. If not, you can go on the mds-foundation.org and look for a Center of Excellence in your local area. Although my father doesn't treat at a Center of Excellence, his hematologist came from the City of Hope , which is considered a Center of Excellence in CA, so it gives me a peace of mind.

Hope that helps. I will continue to hold you in my thoughts.

[Lisa V]

Lost-

Just based on what little you've told us, I can already see that you're not getting the whole story from the doctors. First they say he's only got a couple of years and there's nothing they can do, and then you mention that that his siblings have been tested and two of his brothers are a match, but that they want to wait and not do a transplant now.

If he has 2 good sibling matches then it's not true that there is nothing they can do. The fact that they want to wait sounds like it means that they think it may not be necessary, which is also positive. If he were really out of options they would probably be talking up a BMT right now.

I understand your frustration with waiting, but let me tell you that a transplant is not something to be taken lightly. It is a long, difficult and risky process, particularly for anyone over 40. Not something you want to rush into if there are other options. That's just my opinion. My husband is 54 and we would do a BMT only as a last resort. Our doctor says that they can still do them for MDS patients into their 60s if their overall health is otherwise good, but that is something that would have to be evaluated by an experienced transplant doctor. Some questions you might want to ask are if their reasons for wanting to wait are based on concerns about his health and ability to withstand the procedure, or is it more that they think there's a chance he can live a normal life without it. If it's the second one, then that's good news.

As to reading the CBCs, our lab gives some slightly different figures than June's for normal range:

WBC (white blood count): 4.8-10.8
RBC (red blood count): 4.15-6.10
Hgb (hemoglobin): 12.5-18.0
Hct (hematocrit): 37.5-52.0
Plt (platelets): 130-440
ANC (absolute neutrophil count): 1.8-7.5

Our doctor (and it seems like the doctors of most other people here) just focuses on certain of those readings: Hgb, WBC, ANC and Plt are the most important ones to know for these diseases.

So going by what you've said, his WBC of 10.4 is in the high normal range, as are his neutrophils at 6.7. No worries there, unless he has excess blasts (young blood cells that don't mature properly), which should be on your list of things to ask them about.

It can be a bit confusing sometimes because different labs seem to put the decimal point in different places. I'm assuming your lab's Hgb 115 is equivalent to our lab's 11.5 (otherwise he'd have been dead long ago! ). That's is a bit below normal, but still a liveable count. There are many people here who get by just fine at that level and lower. They generally like to give RB transfusions if it drops below 8.0, but that can vary from person to person. Hemoglobin is what carries oxygen, so low Hgb might make him feel a bit tired, but most people don't feel symptoms or have problems at 11.5.

Platelets at 39, again, below normal but not dangerously low. There are people here that have adjusted to Plt counts of 10 or less with no problems as long as they are careful to avoid injury. They usually transfuse Plts below 10, but again, that's an individual thing. What they look at is at what point do you develop bruising or bleeding issues, since platelets are what help the blood to clot and stop bleeding. Anything above 50 is generally considered "safe", and he's not quite there, so he should avoid the type of activities that could easily lead to injury, but not worry about normal physical activity.

Counts do fluctuate from week to week, but generally speaking, those are not dangerous counts, and the body has a remarkable ability to adapt itself to lower than normal counts, just ask anyone here. If he can maintain counts like that indefinitely and if nothing else is going wrong (those are big "ifs"), then he should be able to live a normal life without further treatment. Two things that can affect his ability to do that are if he has any chromosome abnormalities and if he has excess blasts, so those are things you want to find out. The first one can lower his life expectancy (a lot will depend on which one it is) and the second could be an indication that his MDS is moving towards leukemia. Both of those things could be reasons to consider a transplant, but if he's stable I wouldn't push it. If you can find out what category of MDS he has there may be others here who share that diagnosis and who can tell you more about what that means.

I'm sure I have oversimplified a lot of things here. I am not a medical professional, and I don't know as much about the different types of MDS as some of the others, but I hope this will at least help to put things into perspective for you, and give you an idea of what kinds of things you need to find out.

[Neece]

Originally Posted by lost

hi...I,m new at this..Just really scared. My husband was diagosis with myelodysplastic...on the 22th. of dec. ...merry xmas..we cryed all through xmas..the doctor said he has two years or less...there,s nothing they can do ...he,s 57 year,s old ..he,s to young to die...

Well to start off - each person is unique and so is their disease. There isn't a definitive prognosis of time for MDS survival. I am upset that your doctor put it to you in that matter. However we have all been there and received those statistics. So that being said, you need to find a doctor who has treated many MDS patients and is an expert in the field and with a Center of Excellence. Let us know your location and hopefully someone can refer you to someone they are seeing. There are options, treatments and even a BMT , so hold on and let's explore some options . Try to stay calm, it's not the death sentence they once thought it to be. To make you feel better, I am stable and doing well with MDS for officially 8 years now,unofficially in my mind for 9 years. It was my 40th birthday gift. So hang in there, - good luck and keep asking your questions, there are a lot of good people here to help you through it. Remember no question is silly or minimal in this forum.
Neece - diagnosed MDS RA 1999 and doing great!

[Steve Kessler]

Hi Lost,

You've gotten a lot of good advice, so I won't try to duplicate it. I see by your profile that you are Canadian. You don't say from where, but it may be worth mentioning that there are two Centers of Excellence in Canada, both in Toronto:

Toronto Sunnybrook Regional
Cancer Centre
Toronto, Ontario, Canada
Richard A. Wells, MD

University of Toronto
Hospital for Sick Children
Toronto, Ontario, Canada
Yigal Dror, MD

It would probably be worthwhile to check with those facilities to see if they have names of physicians who are expert in your area. Other posts have done speculation as to your husband's profile, but we could use more info. You could also call the MDS Foundation directly, info on their web site mds-foundation.org to get a referral to a good doctor in your area.

I don't know if they force you into a round hole like a square peg in Canada, but even so, a squeeky wheel can often get some grease. Also, there are excellent trials all over the world if you can't get satisfaction otherwise.

Transplants get increasingly risky over age 40 even though the local facility here in Seattle does them up to age 70, but you should really be in good physical shape otherwise and have a perfect match at age 57 if you are considering one. If his brothers are perfect matches, that is really great. Survival can be gotten with less than perfect matches, but graft versus host disease can be a real bummer.

Keep us posted and good luck!

[lost]

Well this is sooo hard to understand...I do ask the questions..but I don,t understand anything.we are in ottawa ont. the doctors there seem to be great...they said my husband bloodcounts are stable...but his plagetts are very low...and his blast are 5/10 I think he said...I really hate this...I wish it would all go away..but thanks you guys

[Neil Cuadra]

lost,

You can ask for a copy of any of your husband's test results, as you did with his Complete Blood Count test last week. Then we should be able to help you interpret any results that the doctor didn't explain.

If you haven't already done so, you should contact the Aplastic Anemia and Myelodysplasia Association of Canada (AAMAC). They can give you and your husband additional information and support. They educate patients and their families, help them find resources, sponsor research, and support medical professionals as well.

The AAMAC has four provincial chapters (British Columbia, Alberta, Ontario, Atlantic), which hold regional meetings one or more times per year and provide support year-round. You could contact the chapter closest to you.