Hi,
I was just diangosed in June with early MDS. I'm 57. Different people I've talked to say that it is a form of Cancer... Is it?

Also, am I being delusional thinking that I can keep at this even keel for a while?

I'm not being treated at this time, it's just a wait and see situation. Is there anyone out there with MDS who is in a wait and see situation, same as me? If so, how long have you been in a wait and see situation.
Thanks,
Deb

Hi! I was diagnosed with early MDS last July and most likely had it for quite a while. I am not being treated and hope it's going to be for a long time.
Yes, it is a form of cancer, due to the mutation/s occurring in the bone marrow. My best advice? Stop reading articles on the net, because you'd freak out!
It is indeed a serious disease, but could grow very very slowly. And perhaps in a few years we'll get some serious treatments and perhaps even a cure.
NO MORE INTERNET READING ABOUT THIS TOPIC!!!!!!!!

Best

Hi,
I was diagnosed with mds about 12 days ago. Finding this group is somewhat enlightening as it seems difficult to initially obtain much info from your doctor.

I firstly read through all 800 odd messages over the past two days and was sorry to read that Chris had died. I think I recall that he had the same type of mds that I seem to have ,RAEB11.

If any one is interested to hear then I will post my experiences so far as others' experiences seem to be the ones helpful to each individual

Regards
Dave

Hi,
Deb....what made you go to the doctor and be diagnosed with MDS? Do you have low hemoglobin, white blood cells or platelets? I am low risk MDS and currently in remission. Remission came after a little over a year of being treated with Vidaza (chemo). Do you have to have transfusions? Even though I am in remission, I have had a transfusion about every 3 months. I never was put on a "wait and see" status. I immediately went to MD Anderson in Houston, Tx. from Illinois where I started treatment.
bagleyviola....You are so right about the internet. I was SOOOOO depressed when I would do a search on the internet for MDS. They are so outdated and research has come so far.
Dave....it was so sad to hear about Chris's death, but I think we all knew from his symptoms that it could happen. He fought to the end and lived life to the fullest while he could. I think we all miss him and his journals on here. I would like to hear about your experience with MDS. I have MDS with a subtype of CMML. Lucky me huh? This is a wonderful place to visit to get support and information from so many others who are going through the same things you all are. I was diagnosed in April, 2009. I am 61 years old. I have two sisters who are currently being tested for a bone marrow match for me if/when I will have to have one. That's another topic altogether.
Good luck to all of you. We support each other here and I would like to welcome you.

Deb and Dave,

I would love to hear your experiences with MDS and what your dr's are recommending. I just recently joined this group and the caregivers group. My father was diagnosed with MDS in 2007 but, probably has had it since 2004.
It really helps me to read everyone's posts and know my dad and family are not alone in our experiences. We do not know anyone else with this disease and have never heard of it until 3 years ago.
The positive from this is that it has brought my family even closer than we already were. I spend as much time as I can with my dad (and family) and thank God for everyday we have together.

I wish you the best of luck and good health.
Julie

Welcome, Deb & Dave,

I too was on a wait & see status for several months, perhaps a year, after diagnosis. My first Dr said that he would do nothing until my hemoglobin fell below 10 (12 is the bottom normal limit).

Once that happened, I went on Aranesp. At first, I think I had a shot once every 4 weeks, then every 3, and now max-dose shots every 2 weeks. My HGB has climbed up to 10.8 as of my last visit, but no telling how long this state of affairs will last. My RBC & WBC are low, but platelets are normal. With others, platelets are quite low, so each MDS variation has its own set of problems. Chemo has not entered the picture for me, but transfusions have been mentioned.

I feel good most of the time, but like everyone else I have my days of having little stamina and being very tired. I bruise easily, and have lately had problems with cramping.

I'm the type of person who prefers to research, so I have used the net to find answers to my MDS questions. As with any subject, you have to pay attention to where the information comes from, and compare "facts" from various sources. After a while, I've had enough and go back to living my life!

Just a note folks, I ended up in the hospital this weekend as a precaution because of a fever (the level I was working off of 100.2, unknown to me had changed to 100.5. I had gone in simply because our thermometers had started acting funny and were in that range. We went in and the took the "just in case" route and kept me in here for two days pumping me full of antibiotics, blood xfusion, etc. My mistake for not waiting to verify the temp after a period of time.

The reason I'm writing is to offer to each of you to ask questions, do research and talk frequently with your oncologist so your informed. I've been at this junk for 2.5 years and have learned quite a bit. I had specifiec that any oncology related treatment along with faxes of the reports be cleared with him. The staff doctor came around yesterday and said he was going to give me dupaprin (I think that's how to spell it) to inspire the bone marrow to produce more white cells. I told him I would not allow it without it beind cleared by the oncologist which made him mad and he took himself off the case. I called the oncologist and bottom line (which we had already talked about something similar) was that he was very emphatic that they don't give any level of the med and told me to refuse it. The reason is that they do use for the white cell treatment but it also inspires added prodcution of blasts which we all know are bad things. The potential damage could have been significant and possibly not reversable..

I just pass this along to offer to all of you to be an informed patient, especially with what we have. Ask lots of questions, do research and if a doctor wants to do something make sure first you understand all of the reasoning then if your even a bit unsure get another opinion from your oncologist, etc.

My fever had been gone by the time we got to the room and never came back that was my fault. But be sure of all the other stuff going on.

Have a great weekend my friends. Just waiting for them to cut me loose and get out of here.

God Bless,

Mike

Hello again,
I hope this diatribe doesn't go on too long and bore you all but think ,maybe wrongly, that it is all pertinent to the present situation.

I was a fairly healthy 64 year old until mid December 2009. The only problems I seem to have had were breathlessness walking up hills over the past 2/3 years (which I put down to having been a heavy smoker all my life, I knew it was bad but I enjoyed it) and I started feeling bloated (I put this down to drinking a couple of pints of beer when we went to the pub so I started to drink Gin & Tonic instead). This didn't have any effect on the bloating. I have only ever weighed around 140lbs, so being bloated didn't feel good.

In mid December 2009 I had what is called a TIA (mini stroke) which required investigation at the hospital, so I gave up smoking to improve my chances. Towards the end of January 2010 I went into hospital for a Carotid Endarterectomy , that's when they operate to clear the blockage out of your carotid artery to help prevent a major stroke. Immediately after the operation in hospital I bloated more but lower down in my abdomen. It was as taut as a drum and extremely worrying, I hoped that the cure would be a needle in the abdomen to let out the gas, as they do to a bloated sheep or whatever. Anything to get rid of the discomfort. They did nothing and when I checked back with the consultant a few weeks after for his check-up I asked again why nothing was done and no answers were given, he said they din't know the reason for the bloat, that's why nothing was done.

Nowadays as they only keep you in hospital for a couple of days I think you tend not to realise how major these operations are so I think I tried to get back to normal too quickly. In mid March I began to feel worn out after a trip down our garden (it's a 100 yards long) as for doing any gardening that became impossible. Eventually I went to see my doctor, had a blood test which showed I was anaemic with a haemoglobin count of about 6,9. That night I had a 2 unit blood transfusion and felt better. More investigations followed, an endoscopy to see where I was bleeding from, it showed nothing but they afterwards said there may have been a slight bleed in the duodenum, for which I was put on Omeprazole. It turned out that I was not iron deficient anaemic so I eventually stopped taking the Omeprazole which made me feel completely but non specifically
unwell. As the doctors couldn't see the reason for my problems I was sent to a Haemotologist and after various tests proved nothing I had a Bone Marrow Biopsy three weeks ago and was then told that I had MDS .

Needless to say we had never heard of this so didn't know what questions to ask the specialist other than for him to reply that it used to be called Preleukemia and that there was about a 15% of it becoming leukemia. Obviously this was worrying but we thought it could possibly be cured or halted nowadays. It wasn't until we arrived home and googled MDS that we knew what it meant. He also hadn't said what type it was. It took a number of irate phone calls to his secretary to get the type (it's RAEB II) and to find out my current Haemoglobin count; it is 12.1 so I'm not constantly tired at the moment. Maybe they don't tell you immediately to stop you worrying but you can always find excuses for their actions. I returned to my GP to renew my prescription, I take Rampiril and Amlodopine ( for High Blood Pressure) Simvastatin for cholesterol and Aspirin to thin the blood and he confirmed that the treatment for the MDS is watch & wait at the moment. He also gave me a copy of his letter from the Haemaologist which further says that it is very likely to to turn into acute leukaemia in the next few weeks and months. Which would require active chemotherapy.

I was also on Clopidogrel tablets for anti clotting after the carotid operation this together with taking Ibuprofen for pain relief we were think was possibly causing internal bleeding (hence the anaemia).

I am sorry for the length of this post but before I had the diagnosis because I felt so weak I thought that something had switched off after the TIA. I'm half of this opinion. Has anyone else had such thoughts?

Hi All

Welcome Deb & Dave to the Leaky Boat Crew. Im so sorry to hear that youre been diagnosed with MDS. I was diagnosed with Del 5q in October 08, and was on a wait and watch program for about eighteen months. Two months ago I started with blood transfusions. Last week I was hospitalised as I had severe nausea & dizzy spells for about five days. I understand your frustration Mikeyti, as my usual Haematologist was away and I was seen by two other doctors that I did not know. My Hb was at 93 (which usually isnt so bad for me) but for some reason my body was really not coping. Neither Doctor could explain it....the only thing they could suggest it that I had a virus. I was transfused with two bags of blood and felt better, but not necessarily 100%. In the next couple of weeks the doctors are going to hook me up to a heart monitor and will do a scan of my heart. They are concerned that the MDS is having some detrimental effect on my heart. After I have my BMB I will be start using Revlimid, hopefully Ill get a break from all of the above.

I suppose the reason Im writing is to say (even for those who are on a wait and watch program / or are considered low risk) be careful of your health as this MDS can have other ramifications, like affecting other parts of our body.

Gayle & Lou
Happy Anniversary! I hope you had a wonderful trip to Las Vegas.

Best wishes to you all.
Rachael

Yea they convinced me to stay another night at least and are continuing the antibiotics. It turns out that they WBC had gone up to .9, RBC to 8.2 but the hct had dropped to 15.9% leaving and anc of 143 which is way low and high risk for infection so here I sit LOL.

You all have a great day tomorrow.

Mike

Mike, I hope you start feeling better soon and your blood counts go up. What are they giving you to boost your WBC count?

Julie

Thanks Julie. There's a couple of problems. It the neutorphiles being so low - those determine the ability of the WBC to fight infection. I just got copy of today's report and they are still down so the anc will be in the low 140's. That's going to have to get up between 300-500 min before they will want to let me go. In the meantime everyone but my wife has to wear a mask, sometimes a gown, santize their hands etc. no washed veggies for now so they are taking all the precautions to keep infection out.

As for the WBC booster drub, I think it was neupoprin ??sp??, the staff doc wanted to use it but my blasts are at 22% and this drug causes the bone marrow to produce more blasts too which the doc said no way. That is why I cautioned everyone to get to know as much as you can so you can participate in decisions and protect yourself as well.

Mike

Mike, what you wrote is very important to all of us. As Dave, our new crew member, pointed out, we don't always get proper info because our doctors aren't expert in MDS, so it's important to protect ourselves with as much knowledge as we can gain.

Apparently every one of us wonders what symptoms or illnesses have to do with MDS and which are from other causes, as in the case of the TIA. My own oncologist usually answers in the negative when I ask him about a particular problem, but I don't take his word for it even then. How can I know how good he is? What depth of knowledge he really has? Going to MD Anderson or other such places is out of the question for me.

Mike, better to be safe than sorry. An infection could do you in.

Dave, do you still have bloat? That is worrisome if so. I hope that letter about leukemia is way off-base.

Rachael, I hadn't yet heard of effects on the heart from MDS. I sure hope that's not the case.

Thank you everyone for your advice and stories. I am in such an early stage that I have no defined type at this time. The only reason I found out that I had a problem was when my g.p. told me that my platelets and WBC were low. So she sent me to a hemotologist. I was watched by the hemo for about a year and my platelets remained at about the same level (100,000), then the hemo suggested a bone marrow biopsy. That's when I got the diagnosis. At this point in time, I have no transfusions, no drugs... just waiting for things to deteriorate. My next step is to get a 2d opinion. I live in Iowa... any suggestions where to go? I'm close to the Mayo Clinic so that's where I thought I'd go.
Take care everyone! Deb

Hi All,

Thankyou Birdmom,Rachael,Susan and Julie for your thoughts.
With regard to the Bloating stomach , it's not as bad as it was, mainly perhaps because I eat less and take care not to pile my plate high, although I've never been a big eater probably because of the smoking. I certainly started snacking more after I gave up the cigs. Often I snacked excessively on things I craved, because of the anaemia, like Marmite sandwiches (not sure whether you have this in the USA but the Australians call it Vegimite) . It's a salty tasting yeast based spread, you either like it or you don't there seems to be no half ways. Another thing I used to crave was the ice in the Gin & Tonic, it's strange but that seems quite common with anaemia also

I never felt better than I do at the moment in general. However I am easily tired but even so can manage to walk perhaps a couple of miles when we go on an outing or shopping.

When I had my last Haemoglobin count when it was 12.1 my liver, kidney and light chains (I've not quite got my head round what those are) were all OK , I wait to see what the next readings are in about 3 weeks time.

Birdmom, how interested are you with your birding ? I have a small collection of tropical birds at home. We've also been to Florida, Costa Rica, The Gambia, Kenya and Europe looking for birds and animals. We also go for the sunshine.They have always been a passion of mine and I have renewed my interest since my three children left home.I'd be interested tohear of your exploits.

Regards
Dave