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Our Journey With MDS: Gathering Knowledge

26 Comments By
Published: Nov 1, 2013 2:57 pm

As I mentioned in my first column, my husband Michael and I live in a small country town in rural New South Wales, Australia. There is a small medical center in our town, but the closest location for specialist medical care is a two-hour drive away in Canberra, which is where Michael’s hematologist is located.

Since Michael’s diagnosis with myelodysplastic syndromes (MDS) in June 2012, we have been asked to come for a review appointment every three months. Michael has blood tests a week before every appointment so that any changes can be tracked. When we reach a point that more advanced care for his MDS is needed, we will have to travel five hours to Sydney or eight hours to Melbourne, depending on where we choose to access that care.

In the first few days, weeks, and then months following Michael’s MDS diagnosis, I spent every spare moment searching the Internet, hoping that I would find information about this disease called MDS. I have spent hours with his test results in front of me, searching for and trying to understand words like neutrophils, macrothrombocytes, myeloblasts, poikilocytes, megakaryocytes, refractory cytopenia, multilineage dysplasia, and 5q long-arm deletion.

I needed to know what all these words meant. In those early days, it was like learning a new language. I needed to understand, because I wanted to care for Michael. And to do that effectively, I felt that I needed to be able to ask Michael’s hematologist questions about his disease.

I have learned quite a lot about the disease in the 12 months since his diagnosis. In fact, reading through his prior blood test results, I noticed that his red and white blood cells were low and that macrocytic anemia was mentioned more than a year before his MDS diagnosis.

Gaining knowledge about MDS was very important to me right after Michael’s diagnosis. However, after a while, I started to feel that I was just re-reading information that I had already absorbed and understood.

I don’t know if other people have come to the same realization, but for me, the constant searching for information stopped being a good thing and started to impact me emotionally.

Specifically, constantly reading about statistics and possible outcomes became quite depressing for me. I found myself only focusing on the negatives and not being the positive person that I had told Michael we both should be.

So I made the decision to stop researching and just concentrate on keeping him healthy.

Another thing that is hard for me about the early stages of MDS is the wait and watch approach. I’m the sort of person who needs things to be fixed. Just waiting is frustrating to me, and I have expressed this frustration to Michael’s hematologist. At the same time, I do understand that, as long as we are not doing anything, it means that the disease is not progressing. I have come to realize that wanting something to be done is counterproductive.

I am learning to be patient and to adopt the wait and watch attitude that is expected of me. Having said that, I still spend time reading about clinical trials and drug therapies, but I am trying not to be obsessed with the disease.

To end this column on a positive note: One thing that has helped us enormously since Michael’s MDS diagnosis is reading about other people’s positive outcomes in The MDS Beacon. We both feel the positive energy from other people’s survival stories.

Dinah writes a column for The MDS Beacon that describes the perspective of the family and loved ones of those who have been diagnosed with MDS. Her husband Michael was diagnosed with MDS in 2012 at the age of 55.

If you are interested in writing a regular column for The MDS Beacon, please contact the Beacon team at .

Photo of Dinah Fischer (right) and her husband Michael (left).
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26 Comments »

  • Pam said:

    Hi Dinah,

    Michael was a year younger than I was when diagnosed nearly 14 years ago. Like you I searched the Internet but I suspect it was less of a learning curve as I have a degree in biochemistry so at least the vocabulary was more familiar. My husband has always felt I focus too much on the disease and knowing what is available but I feel it empowers me to a certain extent. Like you and thanks to organisations such as the MDS Beacon I no longer search the net as frequently as I used to do.

    It must be hard having to travel to Canberra to see the haematologist and the thought of 5 or 8 hours for a treatment or consultation in Sydney or Melbourne is daunting. There are similar situations here in Canada but, luckily, we live in a city where treatment is available if needed.

    It’s great to see more and more patient stories and from four different countries.

    Best wishes to you both,
    Pam

  • Lora said:

    Hello Dinah,

    I was diagnosed with MDS in March of 2010 and had a stem cell transplant in December of 2010.

    Sometimes reading all that stuff can get to you! My husband did a lot of reading when we were going through treatments and such. I was thankful because he was able to ask questions that I would never even thought of asking.

    My husband and I traveled to Dana Farber in Boston, Massachusetts for my treatment. We live about an hour north in New Hampshire. Aggrevating as it was with traffic, I’d do it all over again in Boston if it ever comes back or something else surfaces. Finding good treatment is worth any drive.

    Hang in there. I’ll have my 3rd birthday on December 2 this year! Three years since my transplant. I am working part time, enjoying my life with my husband and 2 sons and feeling great!!

    Lora

  • Kathy deOgburn said:

    Dear Lora, my husband is to have a BMT the end of Nov. He has early stage MDS. He had a auto BMT 10 years ago for NHL has been going great. They say he has treatment related MDS. My question to you is how are you doing , are you back doing things you were doing before? I’m still questioning people that have the wait and see attitude, because it isn’t going away.

  • Dinah (author) said:

    Hello Pam

    Thank you so much for your response to my latest column. Yes the distance we have to travel makes life a little difficult but on the other hand we live in a very picturesque location and really do enjoy our life style. It’s so heartening to hear of stories like yours and others who contribute to the Beacon. I’m always so moved by other peoples acts of kindness and support. It helps a lot when you are feeling isolated. Australia does not have any where near the types of resources that are available in other countries so the internet has been very valuable for me and having found the Beacon especially so. Apart from the Leukemia Foundation we don’t have a specific MDS society/organization. Fortunately Michaels Hematologist is excellent. regards dinah

  • Dinah (author) said:

    Hello Lora

    Thank you for your lovely letter following my latest column. I’m so pleased to hear that you are doing well 3 years post your stem cell transplant. Other peoples stories are inspiring and offer much needed hope for the future. I have my 58th birthday on the 3rd December so will think of you celebrating your third (post transplant) birthday on the 2nd. regards and best wishes dinah

  • Bergit said:

    Dear Dinah,

    I actually agree to everyting you say about too much involvement in the disease being contraproductive, when you struggle to cope with it.

    BUT just published an article in a German newspaper with the title:
    “Well-educated and well-informed patients do live longer”

    I guess you have to find a balance between the two positions. Please don’t stop to get informed as much as possible!

  • Raha said:

    Hi everyone! All the way from Sweden here!

    My mom was diagnosed MDS 5 years ago, she has something called the q5 syndrome. Is it familiar to you guys?

    I want to know if her diseace is dangerous, her doctor says she’s in a low risk of developing leukemia but I’ve read otherwise on the Internet! Because if that’s the case I would like her to do a transplant.

    She’s 60 years and I’m only 23 I can’t imagine losing her without even knowing what I can do for her?

    Please help me out.

    Hope you guys are all having a good day

  • Dinah (author) said:

    Hello Bergit

    Thank you for your comment re my latest column. I’m sorry to have taken so long to respond but I have just completed a five day art course and didn’t find time to do anything much other than the usual house hold chores. Yes you are right when it comes to being well educated about illness. I think that it is very easy to “fall through the cracks”, particularly in Australia if you do not take charge of your own health care. This can only be achieved by gaining knowledge and understanding everything you can about your own (or in our case, a loved ones)particular disease.

    regards
    dinah

  • Dinah (author) said:

    Hello Raha

    I’m sorry to hear about your mum. My husband has 5q MDS and his Hematologist tells us that if you are unfortunate enough to get MDS then it is the best version to have. Don’t be too alarmed by every thing that you read. Find a good Dr and have faith in the treatment they recommend for your mum. Take care of your self and your mum, good luck, dinah

  • Dixie said:

    Thank you for writing this, Dinah..

    I am 58yr old female, diagnosed 10/31/13. Happy Halloween, you have cancer.

    But luckily, my health is excellent and I have 6 siblings that were all tested over Thanksgiving so the chances are good for a match.. which will be done at Ochsner Hospital in New Orleans.

    But I just wanted to say, I’ve pretty much quit with “outsome” research. I’ve reading non-stop since Halloween and I’m done. I can discuss my disease intelligently, I’m familiar with most of the terminology, and I’m over-saturated.

    Like you, it was impacting me emotionally and I was getting preoccupied with outcome results. So I’m stopping the research, for now anyway, and trusting that my wonderful doctors and my amazing family will help me get thru this Stem Cell transplant and I’ll be able to move on..

    I’m so glad I found this site. .and again, thank you for your article.

    Dixie

  • Dinah (author) said:

    Hello Dixie

    Thank you for your lovely note about my column. I’m sorry to hear about your recent diagnosis. It is very difficult in the beginning but as time goes on you do stop being consumed by the disease and just get back to getting on with life. This is an excellent site and you will find lots of medical as well as personal information about MDS. In Australia we are not as lucky as those living elsewhere in that we really only have the Leukemia Foundation to go to for information about MDS so for us it has been very important searching for other sources of information. I hope one of your six brothers and sisters is a match for you, Good luck, keep in touch, Dinah

  • Rosemary said:

    Dinah,
    Hi! I have 5q- MDS and my oncologist told me it was the best kind to have, an less likely to go to AML than other versions. I was 72 when diagnosed, so too old for a bone marrow transplant, but I was started on Revlimid in October 2009 and have been on it ever since. Not needed a blood transfusion since October 2009, and have quite enough energy for someone my age. Is your husband going to have a bone marrow transplant, or are they starting him on Revlimid, which gives good results for people with the 5q- condition?
    Good luck on your joint journey. Rosemary

  • Dinah (author) said:

    Hi Rosemary

    Thank you for your letter. Michael is not scheduled to have a bone marrow transplant at this stage. In Australia it seems that BMT is a last resort treatment. He will start blood transfusions soon and Revlimid. I’m glad you are doing well and thank you for your best wishes.
    regards and best wishes for the up coming festive season.Dinah

  • Raha said:

    Hey Dinah!

    Thank you for answering! I just saw your comment.

    Is your husband taking any other medication?

    How long has he had the disease and what does he eat besides the medication he takes!?

    My mom is good for now, but her HB is getting lower, her doctor switch the medication for a lower dose but it didn’t help at all, so now they are back on Revlimid for 21 days and off it for 7 days, like birth control! Has your husband has any similar experience?

    Alot of questions, hope you get some time to answer!

    Kind regards, Raha

  • Jane said:

    Hi Rosemary and Raha,

    I was diagnosed with 5q-delete MDS a little less than two weeks ago. Diagnosed after referral to hematologist because I have been anemic for some time.

    My hemoglobin was at 8 at that time and will be going for a blood test tomorrow. The plan is that after a few transfusions they will put me on Revlimid.

    I just turned 66 today and still find myself rather ‘too calm’. I don’t think it’s really sunk in yet. I’d love to have some recommendations for what I need to know?

    The other thing I’d like to know is what exactly is it like to live with MDS? How do you feel? I am already experiencing fatigue, which I also assumed was just be a busy grandmother taking care of her two 4 & 8 year olds and my semi chronic anemia. There really isn’t anywhere the discusses that side of the coin.

    Thanking you all in advance,
    (I live in Portland, Oregon, USA)

  • Raha said:

    Hi Jane!

    Sorry to hear that! Although you should be happy that it isn’t any other type of MDS, at least it’s what my mom hears.

    Anyways, I know my mom is doing fine, but sometimes she’s upset and sometimes she’s happy.

    I’ve heard that its not always that you get acute leukemia from this type of MDS? I’m not sure but the chances are low? Correct me if I’m wrong! I’ve also heard and read about improvements for researchers for this type of MDS, and that they will find better and new medication! So hang in there! I would recommend you to take vitamins for your health! And try to live your life to the fullest! I’m 23 years old, I quit school to take care of my mom. I always make her some fresh orange juice and carrot juice and try to make her smile every day! Try to be with people who you love the most!

    I hope you the best, and I don’t know if you want to but if you do, I could leave you my phone number, and I’ll answer whatever you want to know. I wish someone would do it for me and my mom, so know I can be able to do it for you :)

    Best wishes

  • Jane said:

    Thank you Raha! I would love to have your phone number. You sound like a wonderful son. Best wishes to you and your, too.

  • Raha said:

    Sure its 0046 707969125 i live in Sweden, think its 8 or 9 difference from New York, I don’t know were in the states u live but call whenever you want :)

  • Tracey said:

    Today at my specialist appointment I was told my blood tested positive for MDS, I needed to get in to see my family doctor, and that my iron is very low and needed supplements. I am still confused what all this is and really have no idea what’s going on. All I the know is I am going to see a blood specialist and get a bone marrow biopsy. That’s what I was told today. No one answered me in simple language I could understand. I searched the Internet and am scared to death. I am 48 years old.

  • MDS Beacon Staff said:

    Hello Tracey – It is perfectly understandable that the news you’ve received from your doctor is causing you such concern.

    But please don’t jump to any conclusions until you’ve had a chance to undergo additional testing to determine exactly what you have. Also, if it looks like you have MDS, please try to see an MDS specialist at a major cancer center, to make absolutely certain you have MDS, and to determine how best to treat it.

    MDS is a rare disease so it is best diagnosed and treated by a physician who specializes in it.

    If you let us know where you are located, we can point you to a couple of cancer centers close to you with MDS specialists.

    In the meantime, if you want to learn more about MDS, please review the materials in the resources section of The Beacon,

    http://www.mdsbeacon.com/resources/

    and you also may want to read some of the articles written by the Beacon’s patient columnists,

    http://www.mdsbeacon.com/tag/patient-column/

    Good luck to you!

  • Tracey said:

    Ok, I was told my test was neither positive or negative, but a yes. What does this mean? I found out from my doctor yesterday. Today they called and said not positive or negative; the test is a yes!

    I am located in Ontario. My town is Brantford.

  • MDS Beacon Staff said:

    Thanks for the update, Tracey.

    Unfortunately, it is difficult for us to tell what your diagnosis is based on what you were told. We would recommend that you meet with your doctor and have them explain to you very carefully what they think your diagnosis is.

    If it turns out that the diagnosis could be MDS, then one center you should consider going to for a consultation is the Odette Cancer Center in Toronto. Dr. Rena Buckstein, an MDS expert, is on staff there.

  • Tracey said:

    Thank you so much for getting back to me. I will definitely contact her in this regard. Nobody seems to give me more answer to my question. I asked my specialist whom is only three visits new if I could have a copy of the blood test results in to which he replied no and to go see my family doctor asap. I asked him to explain his findings where he instructed me to go to my family physician as he knows me bwtter and should come from him and copies were being forwarded to him. My doctor saw me the same day and said he is only a family physician and was not familiar with this test it was not a usual test but would phone Hamilton and find out exactly what the test meant and get a hold of a blood specialist and also set up a bone marrow biopsy.

    Today Hamilton pain clinic phoned and said that my test did not say positive or negative and it said Yes! (whatever this means), then asked for a copy of my results to be sent to me and again said I needed to see my doctor as soon as I can to go over results. I am left in limbo … and scared!

  • Ric said:

    Hi Tracey: In Ontario you need a referral from your GP to see an MDS specialist who will perform a BMB and obtain a cytogenetic report from a pathologist. You can have this done at Hamilton’s Juravinski Cancer Centre. Within a few weeks you’ll know what the diagnosis is.

    When I was given my confirmation of low-risk MDS by my specialist, median survival with del 5q was 54 months. So I’ve passed that mark (July 2013) and am still getting along OK, albeit with regular PRBC transfusions. YMMV but for me, a Hgb under 70g/L makes QOL difficult. I’m not 100 per cent sure, but a similar diagnosis as mine today has a higher median survival of 60 months.

    So before your next doc appointment try to have a relative or friend go with you – with a pen & paper – to ask your questions and take down info the doc gives to you. Good luck and let us know how it goes.

  • MDS Beacon Staff said:

    Thanks so much, Ric, for sharing your perspective and experience. I’m sure there are other readers besides Tracey who will appreciate the information you’ve passed along.

  • Tracey said:

    Ric,

    Thank you so much for that information. God bless you and thank you for taking the time to write to me.

    I am happy to hear that you have passed the 54 months and I pray you continue to bypass this time frame. You have given me a new insight and hope!

    Thank you,
    Tracey

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