Hi everyone,
Sorry so long for a message from me but not a lot to say. Chris, I am so glad you gave us an update...I think we were all worried about you. I just got word from a friend that I met at MD Anderson in Texas that he is no longer in remission with his MDS. I was on a clinical trial for oral Vidaza and have been on this chemo since last April. He and I started the same clinical trial at the same time, he went into remission and I never have. He seemed to be doing so good but then called me today where he just had another BMT and his blasts had gone up to 16%. His next step is to have his sister typed for a stem cell transplant. I am so bummed about him that I just had to share. I have the MDS/CMML and thought I was always a lot worse off than him, so now I am really bummed. Actually, my hubby and I are in Florida and St. Pete Beach so I'm bummed but tanned....:). I just keep waiting for the ball to drop and I'm on the downward slope. I still only have the problem with low hemoglobin and my white cells and platelets are okay so far. I don't know about you all, but I think this lousy weather has a lot to do with it. I feel so much better here in Florida with the sun shining and the beach out back. I hope to get back with you all. I do care about all of you and know that we are all in this together. We have to keep our chins up and keep the good sense of humor. Chris...you keep us laughing. Keep it up.
Susan

So relieved to hear from you, Chris. I was debating making a long-distance call to the mother country.

Interesting that you've been having digestive problems. So have I, & your symptoms were the same as mine. The pain got to me one day, so I decided to double my reflux meds & go on a bland diet. Made cream of potato soup & tapioca pudding for my dinners. Had poached eggs on dry toast for breakfast. Mild cheese & saltines for lunch. I'm pleased to say that it worked, & I feel much better. Sure didn't lose any weight, tho.

I'm happy about your weight loss, but 6 lb in a week? Sounds excessive to me. But I suppose your sore throat makes eating difficult.

I'm laughing! At this point, which is the better financial deal--paying points or going to school? As H would say, bugger all!

Lou's latest blood test results revealed:
WBC = 2.5 (L)
RBC = 2.59 (L)
Hemaglobin = 9.6 (L)
HCT = 28.2 (L)
Neutropenia = 1.2 (L)
Lymphopenia = 1.0 (L)
Platelets = 220 (normal range) :)

Lou has low red and white blood counts...darn darn darn. We're still looking forward to our trip to Hawaii in late April.

Chris - glad to hear from you...you crazy Brit!

Gayle & Lou

Hello, my name is Debbie and I live in Queensland Australia. I have been diagnosed with MDS RA. I don't know much more than this at the moment. When my haemotologist told me this, there were still a test pending. I'm off to see him 10MAR. There is still a lot I am learning about MDS. I don't know what I know. Is that weird?? I think I have been anaemic for many years and I was once told I had "funny shaped haemoglobin". Nothing was ever followed up about it. My understanding is that even if I knew years ago, nothing could have been done anyway.
So here I am, learning a lot and probably trying to forget a lot!! I 'm not ready for this shit!!

Susan...It is lovely to have your contributions again, you are after all an old tiker in this column, and I hope you will now be regular, and keep Birdmom and Gayle in order.

Went on my driving course today. All good basic stuff, like good signalling, and keep to speed limits, but frankly I was very bored and caught a quick nap in one session. Did not tell them that this is all part of MDS/AML etc etc.

Gayle, with Lou's Hemoglobin level as high as it is, and his platelets normal, I reckon you 'll have the old man around for many years to come. You cannot even decide to nick him with a blade or piece of sharp paper, as he will unlike me, heal. Good for you Lou, you are safe.!

Off the Scotland tomorrow Thursady, but just heard the airport is closed. So we may be in for a hellish day.

Will report when I am back.
Love to all
Chris.

Welcome to you, Debbie. My husband was born in Melbourne, so I speak Aussie. (Just kidding.)

I laughed--ready for "this shit" or not, here we are. I agree, it probably wouldn't have done much good to have been diagnosed sooner. There's a lot of information on the net, but the trick is to understand the sort of lifestyle we can expect to have as time passes.

I don't know how old you are, but MDS basically hits most people who are already seniors or close to it. Are we tired because of MDS, or are we simply experiencing aging bodies? Every time something happens to me, I ask the hema/oncol--is this from MDS? Most of the time he says no. But what does he know, he doesn't have it, lol!

I'll never forget my first Dr. He said, "There's nothing you can eat, drink, or do that will change the course of this disease." In some ways I disagree, especially regarding the will to live, but it takes the onus off doing what I want.

Gayle, most of Lou's counts are similar to mine. His WBC is much lower (mine is 3.9), but my RBC is lower (2.53).

Susan, we wondered what happened to you. I'm so sorry to hear about your friend, & I can see how it would bum you out badly. Like you, it helps to be in sunshine. I think we all got pretty depressed this winter, but here in central California, the first wildflowers are blooming. Spring always perks me up. For Debbie, of course, it's autumn.

Back again. I am 48years old and my heamo did mention that it is quite unusual for a woman of my age to be diagnosed with MDS. I feel tired a bit, but I'm not sure if tit has something to do with living where I do. At the moment we are experiencing days not below 30c and fairly high humidity....around 70-80%. My haemo also said to me that there is nothing I could take, drink etc that could help me. He also said purple carrot juice is making a comeback and to save my money. I suppose I will have a few more questions for him when I see him next. I have to have a full blood count done before hand. I really want to go overseas to travel, (my 19yo is living in the UK at the moment) and I dont know what I am going to experience when I am deteriorating if you get what I mean. At present I am working as a teacher aide 5 days a week and I try to ride my pushbike to work at least 3 of those days. Its a 9km trip one way. Thats probably enough for now :)

Oh, Birdmom, I am a Melbourne-ite too! I come from the eastern suburbs. Where is your husband from?

I forgot, Chris, that you had to go to Scotland. Wish we would hear from our young Scot again. Maybe we're too elderly & crotchety for him...

Debbie, Humphrey was born in Melbourne Hospital, but lived in a small town called Tynong. Do you know it? As a boy, he attended St Kilda's. He's only been back once, but we loved the trip. It just wasn't long enough. Both his parents were born in England; his mum emigrated at age 3 and his dad at 18.

He has family in Victoria, although we're down to a couple of aunts and a bunch of cousins now.

I'll be away for a few days also, leaving tomorrow for Sacramento, back Monday evening. It will be a pleasure trip, but I'm already worrying about keeping up with my girlfriend, who's 3 years older. I fade badly at night.

Welcome Debbie - it's good to have you with us. I hope you will become a regular. It's nice to have pros like Chris and Birdmom here to ask and answer your many questions.

By looking at your photo, you appear to be young so I'm curious if you're a candidate for a bone marrow transplant to help get your blood back into a more normal range.

If I don't ask, I know Birdmom will....did you get any test results you can share...such as hemoglobin? It will help others to offer their 2 cents.

I look forward to hearing more from you when you again feel like chatting.

Gayle (and Lou) :)

PS - Chris...thanks for your post. I read it to Lou and I think he feels a bit better....(I've got to shake him up a bit)

Well, the only blood tests I have are from last December from which the biopsy was ordered. They are:
Hb 101
RCC 2.9
Hct 0.30
MCV 103
MCH 35
Plats 263
WCC 4.3
Neuts 2.1
Lymphs 1.7
Monos0.3
Eos 0.17
Basos 0.04
Retics 46

Hope that makes sense!
I have another blood count done prior to my next appointment.

The first question after the biopsy results were in was "do you have any siblings that you talk to?" I do have an older brother that lives on pretty heavy duty painkillers due to a truck accident he had 20 odd years ago.
As I think I am mild, the Dr said that I am not bad enough yet for any treatment. Does that make sense? So I will see what happens at my next visit to him and I will keep you all posted. :)

Debbie,

Your list with my current #s for comparison

Hb 101--don't know what this is? Or is this HGB 10.1? 9.7
RCC 2.9--is this RBC (red blood cells)? 2.53
Hct 0.30--mine is expressed in % 29.1 (range 37.7-47.9)
MCV 103--115.1
MCH 35--38.3
Plats 263--279
WCC 4.3--is this WBC (white blood cells)? 3.9
Neuts 2.1--1.7
Lymphs 1.7--1.4
Monos0.3--0.4
Eos 0.17--0.4
Basos 0.04--0.0
Retics 46--???

Your paperwork should show you the normal range for each of these figures. My Drs won't treat until HGB falls below 10, so that may be the number to watch for yourself. Aranesp, their drug of choice, I get every 3 weeks. It's very expensive, & with hard times, it could be that Medicare will stop paying for it. Doesn't much matter, it doesn't cure anything, just makes you feel better. Eventually it stops working anyway.

Good question--are you eligible for transplant? You are probably young enough.

I was most interested in the fact that you were asked about siblings. Why? For support, or other reasons?

My first thought was he asked so he could see for a future transplant. My husband thought that it was to see like if he had MDS as hubby thought it may be genetic.

Dr did give me an info book and one thig I found, well sort of interesting was the mention of petroleum products. I used to pump petrol way back when I was 17 for a couple of years. I do recall vividly the day that 62c worth of petrol squirted in my face!! I dont know if that has anything to do with me having MDS?

I would think that your doctor would be asking about siblings for a possible transplant but not sure. It has been told to me that MDS is not genetic, but I have heard of more than once that there is another family who has MDS also. I was told Benzine could be a possible cause for MDS but I know of noone that has MDS that has worked with Benzine. I don't think they know for sure what causes MDS or leukemia, but that's my own opinion. Are you comfortable with your hematologist and his knowledge of MDS? If not, I would definitely find another hemotologist who specializes in MDS wherever it might be. Facebook has an MDS site that you might want to visit. You are young enough to want the very best advice from the very best. I travel 1,000 miles a month for the best, but I also have a hemotologist close that I also use for blood work, etc. Good luck to you and keep us posted on your health. We are all in the same boat....:)

Hello again folks
Just when you thought I had disappeared...I'm back!
Birdmom..old and crotchety..don't you mean wise and welcoming!

I have been laid up for a few days with food poisoning. My own fault as couldn't resist some shellfish even though I know I am supposed to eat a cleaner diet. Still lesson learned and in looking for an upside I suppose a couple of days in bed must have been good for me in terms of energy levels.

The weather is pretty horrible in Scotland just now so Chris I hope you have wrapped up nice and warm and that your journey was ok. The snow only makes the mountains look more beautiful so maybe your timing was perfect.

I have my most recent set of blood results so I thought I would share. I am lucky in that although the results fluctuate they don't seem to be deteriorating as quickly as they thought they would at first.
They are: -

Haemoglobin 15.2 (normal range 13.5-18.0)
Platelets 119 (normal range 150-450)
White Blood Count 3.6 (normal range(4-11)
Neutrophile 1.0 (normal range 2.0-8.0)
Lymphocyte 2.2 (normal range 0.8-4.4)
Monocyte 0.3 (normal range 0-0.8)
Eosinophil 0.1 (normal range 0-0.3)
Basophil 0.0 (normal range 0-0.3)
Red Blood Count 4.62 (normal range 4.5-6.5)
Haematocrit 0.431 (normal range 0.42-0.54)
MCV 93.3 (normal range 80-100)
MCH 32.9 (normal range (27-32)
MCHC 35.3 (normal range 30.0-36.0)

This is a lot better than when first diagnosed and seems to have been because I was repeatedly suffering viral attacks and then this lead to post viral fatigue and ultimately chronic fatigue syndrome (all of which affected my blood counts) something which I am sure we have all experienced. It has therefore taken a couple of years for this to settle to the point that they could get a more realistic view of my blood counts.

Debbie welcome, the information contained on this forum is amazing and if you can ever find the time I would recommend reading as many of the 300+ replies on here as possible. It really helped me.

When I was diagnosed the Dr had a similar conversation with me about siblings (I have a brother and a sister) and it seems that this was just part of gathering initial information so that he had a full picture of what the options would be should things head south, in fact he even offered to have them tested to see if they were a match even though a transplant is not a sensible option at this time.

He recently gave me a copy of a study into MDS in the under 50s (google Myelodysplastic syndromes in patients younger then age 50 and journal of oncology) which suggests that for those in the low risk and intermediate 1 categories (I am intermediate 1)then the longer that a transplant can be put off the better. It would appear that if they had a crystal ball then the best time to transplant is right before MDS transforms to AML as this then leads to the longest post transplant survival time.

I asked my Specialist to speak to one of the national experts and this conversation seems to have really helped give him an insight into the likely progression of the illness. So I would recommend that you ensure that your Dr at least has a conversation with someone who specialises in MDS. My most recent BMB indicates that there are more defective cells than a year ago and although this may have concerned my Dr, he discussed this with one of the MDS experts and this satisfied him that it is to be expected and that no action is needed yet.

I have been diagnosed two years now and although energy levels are not what they once were, I am still leading a fairly normal life. The biggest thing I have learned is to avoid post viral fatigue at all costs. So I have learned to really take it easy in the weeks following any illness or viral attack. Without this I was finding that I felt fine until it was too late and I had done too much and I would then feel really exhausted and horribly nauseous for weeks and weeks.

In addition and above all it is about staying positive! I am convinced that a positive mind makes the body stronger and as you will see from our friends on this site you must be determined not to let MDS win!

As an aside my oncology unit offers complimentary therapy and I found reflexology really helps when I am suffering Post Viral Fatigue so I would recommend exploring all options to see what might help.

Anyway must go as after 64 hours without keeping food down I am going to try some soup...wish me luck!

Best wishes to all

Ally