Hello all! New and with no info

[LZM]

Hello,

I was just diagnosed with MDS on Thursday. I can’t find any "accurate" information as all I find is on older patients (I am 32yrs) and I have been told that I need more tests to see what category will they place me. They just said that in "my case" they think the best treatment will be a transplant.

I am not looking that much either, I have to keep my sanity for my kids.

Here I am in hopes to get information and high hopes.

I hope I can understand

[bobweinberg]

Dear LMZ, you have come to the right place. The MDS Foundation and its website has lots to offer. Look at the book "100 Questions and Answers About MDS." It can be found by pulling down the Patient and Caregivers menu on the home page. You can also talk with Audrey Hassan, who is the Foundation’s Patient Liason and will be able to refer you to an MDS Center of Excellence. Phone within the US: 1-800-MDS-0839 and outside the US only: 1-609-298-1035.

If you have any specific questions, please bring them up in this forum, there are a lot of knowledgeable people who subscribe to it. Also, you can email me privately at weinbergr@pepperlaw.com. I was diagnosed at age 48 (relatively young) 13 years ago and have learned a lot about the disease from the patient’s standpoint.

Bob

[LZM]

Thank you so much for all the info. I am right now waiting for Thursday 7/7 I will be admitted to get more tests done and see the results.

[Andy R]

By tests, do you mean blood tests or are you referring to a bone marrow biopsy?

We know it is hard but please try to keep a positive outlook and remain as active as possible.

MDS definitely sucks the energy out of you and, at least in my case, causes joint pain but exercise will help.

This is a long road but MDS is beatable!

Do you mind my asking how old you are?

We wish you the best of luck.

[Andy R]

Hi LMZ,

You are right, there isnt a lot out there for younger people afflicted with MDS.

I’m 44 and it took a lot of digging plus some very helpful doctors to get to the bottom of things.

Typically an older patient cannot tolerate the chemo and transplant process so they are usually made comfortable via transfusions and medication. This is more a management of the problem than an outright cure.

A transplant is the way to go to beat this long term.

If you havent had it already, your doctor will likely have you do a bone marrow biopsy to get samples for further analysis. It hurts like hell but it is necessary.

Once done, you will start the match/typing process. If you have siblings, they will be supplied kits to do cheek swabs. Great if they are matches to you but chances are around 40% that they will be.

If siblings are not matches, your typing will be compared on the marrow database.

Odds are, a match will be found there but success depends largely on your demographics.

My match was found in Europe.

While waiting for a match to be found, you will likely see your doctor every couple weeks for blood draws to monitor your red/white/platelet levels.

Ideally, you will be relatively stable with only a slight decline over time but MDS can turn on you quick so they need to be watchful.

[LZM]

Hi Andy,

Thanks for all your help, ohhh and those joint pains I have had it for the longest and only blamed it on busy woman with busy life and 3 kids.

I am turning 33 this month. I have been anemic since I can remember always getting worst during pregnancies and since last november I started to feel out of breath if I took a shower so I visited my Dr thinking it would be my asthma and when she ran blood tests my hg was on 5.3 so I had a hospital stay and blood transfusion and since then an Oncologist has taken over my care.

They also performed a blood test and that was the test that indicated that they should look into MDS since the 20q was "deformed". After that a 1st Bone Marrow but it suggested MDS but "inconclusive", so the Dr. says that 2 test have kind of concluded the same so she will treat MDS in hopes a 2nd biopsy comes with actual diagnosis. The last tests I spoke about in my previous post were a 2nd bone marrow biopsy and blood tests. They injected me with procrit and ferlecit and my hg went up to 9,I was jumping for joy and escaped a hospital stay. And yes, I have to visit the Dr. every other week to monitor platelet levels and others.

My biggest concern is that I live in Puerto Rico and for what I can grasp is that they are stunned by my age and some tests that came back saying that my iron intake is 0.0, my iron level is that of an old person and platelets are some days up and other days way down. I feel like they don’t know what to do with me or my case.

I will be taking my trip with husband and kids to Disney next week and when I return, I have scheduled an "off the record" second opinion. From there I will decide and see if I should relocate.

[ramey2148]

Sorry to hear about your recent finddings. I was 32 last summer when my MDS turned to AML. They had to search for a donor and found one from Isreal. I am German, Italian, and Irish so go figure. Getting th transplant is the only option for cure. Make sure you have a good support group for you and yourr children because it will be a while before you will be able to tend to them. Remember to keep a positive attitude and pray to thee good Lord. Wheen this happpens to you you will go thhrough questionong your faith, to why me, to what did I do, and alll of that is normal. Just keep up the fight. One thing I always do is set goals for the future (see kids go to prom, graduate, start a family) so you remember why you are fighting.
Good Luck,
Bob

[LZM]

Thanks Bob,

I went thru a round of IV’s (Ferlecit & Procrit) everything was looking good and now we are back again at weekly visits. My Dr. doesn’t think I need a transplant "yet". She thinks that is just a lazy bone marrow….the wait and the not knowing is very stressful.

Thank you again.

[lindajo]

I was 30 when I was diagnosed. I am now 51. Although I have a sister that is a perfect match they have postponed a BMt until there is no other options. This is because of the risks associated with BMT. Many times even if it cures the MDS you can end up with other life threating disabilities. Wait and see can be a very long time. It has worked for me.

[Mary4Mike]

Linda,
You have got to be one of the rare ones that stays stable without treatment. If you don’t mind me asking, how often do you have labs done, BMBs, and doctor visits? Do your doctors just look at you in amazement? What does your HGB usually run? And lastly, what supplements do you take? I think it is wonderful you can live with this without treatment…..and then to have a sister that is a perfect match is the icing on the cake. If my questions are too personal, of course, you don’t have to answer. It is just that I am intrigued by your unusual situation.

Mary

[bobweinberg]

Linda, if she has not already done so, your sister should have a bone marrow extraction taken and frozen.

[lindajo]

I haven’t always been stable. The first 10-12 years was largely a roller coaster ride. My Hmg is usually in the 9.5 to 10.5 range. My hematocrit runs generally from 30 to 33. If I get below 30 my Hmg drops pretty fast and I generally need a transfusion. My white cells are almost always 2.4 and my red cells around 3. My platelets are low normal, never been out of acceptable range.

I have labs done according to were my Hmg and Hematocrit are. Never longer than 6-8 weeks apart.

I get b-12 shots which help tremendously. I used to take a ton of supplements. Now I have it down to b-complex vitamin, folic acid and calcium with D3. If I don’t eat enough fish I will take an Omega 3 vitamin. I tried Procrit and it didn’t help at all. Holding off on other options because I can. I don’t fit into a neat category so I don’t qualify for trials generally.

I have BMB whenever I go to a Center of Excellence or get evaluated for a trial. I donated my marrow for research at Cleveland Clinic. One of these days I need to trek back there and give them some more.
Wait and watch means I have half a life. I used to be convinced if they would just give me a transplant I would be healty again. I like to ignore all the realities of the side effect for BMT’s Statistics have improved so much over the years but it still should be only if you have to procedure.

[HughHC]

I first went to Johns Hopkins 11 years ago for my annual physical. Previously I had seen local MD’s nut never told of any abnormalities with blood. The first year at JH my CBC reflected below normal counts. The next year I had the CBC done again in PA and my counts were normal supposedly. The problem was that the lab technician was hungover and I suspect mixed up my blood with another patient or some such goof-up.

Every year since then my counts have been below normal but within a small range. I have had the bone marrow and biopsy which confirmed MDS. I am told that I have remained in low risk group.

I am 75 and other than joint pain ( last year had Total Knee Replacement) and fatigue seem fairly normal. I do have endurance problems but some of that has to be age related. I exercise regularly (cardio and weight bearing) in an effort to beat the fatigue but not really successful.

I currently live in DE but relocating to SW FL due to unavailability of suitable services for my challenged daughter. I plan to contact Moffit after relo but hesitant about rushing into it given the frequency of visits that many of you report. Currently I see my hemo once a year and supplement that visit with a local CBC here in DE. Since my count is reasonably stable I do not see need for frequent visits.

After reading many of the posts here I feel very fortunate that I am in the low risk category. I know at my age I am getting closer to the check out stage and while I do not look forward to dying I also know that it is inevitable. Where, how and when it will happen is the unknown. I cannot worry about it but do cherish each day as they come.

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