Hello, My name is Carol and I am 39 years old. Diagnosed with MDS about 1 week ago. When the doctor first called and explained the MDS he stated that all tests were pointing to 5QMinus, a very mild case and very treatable. He mentioned that he is very unfamiliar with MDS, especially in someone my age and that he would like to refer me to a specialist. I live in Louisville, KY to I am choosing to go to Vanderbilt in Tennessee where they seem to have a team of specialists in regards to MDS.
This past Friday, the doctor called me back and told me that the additional blood tests he was waiting for came back and it seems my MDS is more complex that what he originally thought. It took me a week to wrap my head around 5qminus and now I am spinning again. I do not know the type or any information and now Im beginning to not trust the doctor. I plan to get some more information this week but what do I do mentally till then? It seems to be consuming every thought.and I am unable to focus on anything else.
You posts have helped because they seem to be full of hope unlike on-line documentation.

Hi Carol-
I know exactly how you feel, I am 36 and I was diagnosed with MDS/MPN about six weeks ago. First, I want you to take a deep breath and do not read anything online that does not come from a reputable site such as The American Cancer Society, Leukemia and Lymphoma Society, The Mayo Clinic, etc. When I was diagnosed I was reading everything that I could find and some of it, actually a lot of it, is very scary. Remember that MDS is rare in young people so the statistics are based on 60+ group.I got a notebook and started writing down questions. I use that notebook to keep track of all blood work, side effects of medicine,blood transfusions, vocabulary, etc. I ask tons of questions all of the time. I also ask the same questions more than once, rephrasing anything the doctor says to make sure that I am fully understanding everything. My MDS was diagnosed following a bone marrow biopsy that was performed due to anemia that was not responding to treatment. I have refractory anemia with unilineage dysplasia.I am low risk to intermediate. My red cells are affected but not my white blood cells nor my platelets. I am transfusion dependent at the moment but I am taking Revlimid which is supposed to help bring up my red blood cell count. I would definitely suggest finding a new doctor. You want someone who is a specialist in MDS. I know all of this information is overwhelming but you will eventually feel comfortable in your mind. Once you get your type of MDS and other information you will feel more in control. I promise. Also, being so young, we are in a good place for a bone marrow transplant, the only cure for MDS. That is the goal for my doctor once I am stabilized and of course once a donor is found. I refuse to let this disease take control of my life. I live my life like always except I have more doctor's appointments! Carol, this board is a fabulous one. Everyone is so supportive and you will learn a lot.Stay strong, Jeanine xxoo

Just a quick update I commenced with Revlimid three days ago and Im glad to say Ive had no serious side effects. Im still experiencing a very dry mouth and last night I started to get cramps in my legs. On the first day my appetite was affected, but that seems to have resolved itself. Im still experiencing nausea, but hopefully over time that will dissipate. If thats all I have to deal with then Im doing ok.

Hi Carol, Welcome to the Leaky Boat Crew. Im sorry to hear that you have MDS, but unlike many diseases we have an option of having a Bone Marrow Transplant (BMT) or a Stem Cell Transplant(SCT) and this at least offers us (those healthy enough) a cure. I was diagnosed with 5q and have issues with both my white and red cell counts and now have blasts cells in my blood. Blood transfusions have improved my immediate health, but like Jeanine I am hoping that Revlimid will achieve remission. Being young, we have so many options and so I hope you feel encouraged that you will be able to manage and survive MDS. There are many people affected with MDS who live well beyond the statistics. The best advice I can give you is ensure that you have a MDS specialist looking after your case. Its so easy to write the words above after having MDS for nearly two years, but I do remember the emotional rollercoaster youre going to experience. Remember you have the right to feel all those emotions; the trick is to get back on your feet and live life well. My thoughts and prayers are with you and your family. Keep in contact. Ask us any questions and someone on this forum will always have a helpful answer.
Keep strong Carol

Rachael

Carol, welcome to our leaky boat crew. Jeanine & Rachael said it all, better than I could.

I'm confused on one point. Did you have a bone marrow biopsy? You definitely must see a specialist familiar with MDS. I was shocked to find out how many drug trials exist for this disease, so there's always hope that new ones will come along to help or cure, particularly for you young whippersnappers.

As Jules says, she wants to live life, so she's putting MDS on a back shelf. After you have done your research and get accustomed to the necessary management, you too will learn that life goes on, literally.

Personally, most of the time I feel just fine, but occasionally I crash big-time, as I did last nite. I'm still learning my limits!

Crew, I will be away for about 2 weeks. Support our newbies, everyone.

Thank you so much for your support and prayers. It really has been a emotional roller-coaster. I am changing doctors next week in hopes to get someone a bit more knowledgeagle and who can and will guide me in the right direction. My current doctor has not and does not feel comfortable starting any treatment so I am kinda in limbo till next week.

As you recall, when I went to see the specialist at Dana Farber, he could not definitively say I have MDS without bone marrow actually tested for MDS rather than just Multiple Myeloma.
It isn't the news my wife wanted to hear as she was hoping for a negative result, but the MDS specialist at Dana Farber wants me to come and see him again preceded by bloodwork for a possible transfusion, so I can conclude that my bone marrow confirms in his eyes that I am officially MDS. I felt like it all along - just no definitive proof. Of course I don't want a transfusion as long as Aranesp is working. Maybe she meant bloodwork in preparation for transplant?
Anyway, I am concentrating on getting important things done and ignoring distractions...
Meanwhile the injection point for the anesthetic from my cataract operation is just clearing of the black & blue and I just drove for the first time since the cataract operation. Yesterday morning I felt peppy and walked around, but I crashed from grogginess in the late afternoon.
Que Sera Sera...

Well, I got the HLA results from my little brother's test. My little brother is not a perfect match for me. He matched me 5 out of 6 and while the doctors would use my little brothers bone marrow if they really had to, they would prefer a 6 out of 6 match for the bone marrow transplant as my risk of developing severe gvhd would be less. I will now be entered into the national bone marrow registry to see if there is a perfect match. Please keep your fingers crossed.

Dear Jeanine,
I'm praying for the perfect match. Time is on your side. I pray they find your match long before you need it.

Sherry

Wow - Hi Everyone,

News from the Najera's....Lou hasn't been feeling well. He's been complaining of chest pains for 2-3 months...but hasn't followed up with his cardiologist...until today.

Today was the day of my organization's annual golf tournament. Before I left for the tournament...I asked him how he was feeling. He said not good, indicated he had a bad night. I left giving him instructions to get in to see his doctor and call me when he knew something.

Well, he called and said he was being admitted to the hospital. When I got there, they said his hemoglobin was 8.2 and he needed a transfusion. This is his first transfusion...and the cardiologist wanted his count much higher in case they needed to perform an angiogram.

He had an allergic reaction to the first unit of blood....got a high fever and got really short of breath. They gave him another unit and then he felt much better...and was asking for food. He hadn't eaten all day!

It's almost 10pm and I'm dead tired...off to bed (alone....yuck!).

More news as it becomes available. I hope everyone else is hanging in there! PS - the golf tournament was a huge success and concluded just before a huge thunderstorm! Whew.

Gayle & Lou Najera (Bend, Oregon)

Gayle and Lou hang in there. Just before 9/11 I had to helicoptered in to have three stenz put in. Seems the ole ticker didn't appreciate the Mckey D diet as much as I did LOL. Between that and meds have been fine ever since. As for the transfusions I've been ok so far in accepting them. The give me a shot of benedril to conteract any allergic reactions I might have and some tylenol for any fever. They always order me lunch so when I leave I'm all filled up and ready to go. I've had four (2 units each) now and will probably be headed for one again fairly soon. Will try to hold off until after chemo week next week so the high test will kick in just right for the grandkids coming up.

My hemoglobin is in the 8's most of the time. My doc seems to key on the HCT as much as anything and how I feel to determine when I need the transfusion. The hemoglobin got down into the 7's once and they were pumping me full of blood and chemo all in the same week.

I'ts all good. Get up each day and give that all that you have and sleep well so you can do it again the next day.

God Bless everyone and have a fantastic week.

Mike

Thanks Mike - this is really the reason we're strong supporters of this discussion group...everyone has different experiences and the shared knowledge really helps us to cope with the curve balls.

Lou got another unit of blood this morning...his cardiologist wanted to schedule him for a "stress" test to see how he's doing. The tentatively scheduled it for Thursday...but THEN they found blood in his stool sample and decided to keep him another night and schedule him for an endoscopy in the morning.

Another update tomorrow!

Gayle & Lou Najera

so I had labs today-4th week in a row without a transfusion! Hgb is holding at 8.9! I lost a point last week due to a mixture of coumadin and my monthly friend! It is so nice to stay steady. Thank you Revlimid...or maybe aranesp, either way, thank you! On the bone marrow front my HLA was run through the system and....3 perfect matches!!! Two of the donors have not gotten back to the coordinator but one potential donor will be cross matched on Monday and results should be in within two and half weeks! Please say a special prayer for me!!!

I was diagnosed with myelo fibrosis about a year and a half ago. I was anemic and my primary physician sent me to a hemotologist. I am under his care now. I had a very enlarged spleen and it was removed over a year ago. I am getting ready to begin the arenesp shots in about three weeks. I led a very active life but retired six years ago. Now my daily routine is about like those I have read here. Some energy upon awakening, less as the morning goes on, after lunch a nap and some duties, then by evening am exhausted to the point that my dinner dishes don't get washed until the next morning. About four months ago my bones became so painful that I sometimes cried. My hemotoligist put me on pain pills (lowdose at this time) and it changed my world. I seemed to gain more energy and my attitude was brightened. Apparently our bodies do not deal well with a lot of pain going on. My Dr is now talking to me about going on a type of chemo for this disease which must be taken at least five days straight each month. It supposedly prolongs life and gives better overall quality to it. Once one starts one must always continue. That is a lot to consider and at this point is very overwhelming to me. I wonder if anyone here has experienced this type of therapy.

Hi Patmatz

I was told three years ago that I have MDS. My doc put me on Dacogen which is chemo that I take on a similar regime to what your describing. Compared to so many out there on chemo I am blessed that the impact is comparitivley low. Mostly fatigue for a couple of weeks.

At the end of next week I will have had 85 infusions in total. I can't say that I enjoy going in but the staff and I get along great. The chemo rooms have access to wifi so I play some online games and take care of some email. Some centers have TV's as well though I don't know where your at, that's here in TX. Depending on my blood counts I get a transfusion every 3 weeks or so though this time I'm approaching 4 weeks and feel pretty good.

I was telling my wife just yesterday that I wasn't looking forward to the 5 days in a row for chemo next week but I am reminded how blessed I am to still be here to celebrate our 44th aniversary tomorrow. That wasn't a predicted thing a few years back so as much as it isn't fun the chemo for me is doing it's thing. My doc says he has an 85 year old lady patient that's been getting it for a long time.
The best I can tell you is that you go in, enjoy the company of those around you, go about the rest of your day (it only takes a couple of hours for me) and just work through the side effects for the first week or two.
I hope that helps. There will probably be some difference for you with what you have but I see folks all the time with some pretty serious stuff and treatments getting through it in positive forward looking attitudes that shows in how the live life.

God Bless and have a great weekend. Let us know how it all goes.

Mike

Since last I wrote I went on 9/10 for blood draws (1st stick failed) and Aranesp. My hemoglobin and 'Crit are edging up, but still low. The nurse asked whether I wanted the Aranesp slow or fast, which no one asked before, so I didn't know how to respond. She did it slow and it hurt like I had never felt before, so next time I'll have to ask for a fast injection. I went today for Zometa, and she couldn't get blood out of the first butterfly in the hand, which had never happened before. I saw my Hem-Onc in passing and he confirmed that he had been updated by the Dana Farber fellow on my results, but I won't get feedback until an appointment on my next Aranesp date, Sep 27. I'll see the Dana Farber people on Oct 5(have to draw blood at 6:45AM for a 7:45AM appointment). So I should finally get a classification and prognosis.