My recent diagnosis

[Lizy]

It’s been a year of ups and down as finally after eliminating all possbilities of B12 and/or iron def. that my doctor has diagnosed me with MDS. I’m 43 years old and a mother of three boys, ages 10, 8 and 6. My head is finally out of the sand, and I’m going to seek a second opinion. My current doctor basically has said that all we can do is support the bone marrow with the iron, monthly B12 shots and Folbic pills (Folic Acid) since my red blood cells are the ones affected right now (they are slightly larger than normal). I feel like a sitting duck. Every three months I hold my breath before I go for another CBC…is this going to be the month? Anyway I presently reside in Texas and have the choices going to three Centers of Excellence. Has anyone been to one of these Texas centers, and can give me some insight. My family and I have plans to move to Colorado, God willing, this summer. I’m debating if this should happen. I need more answers. I appreciate this Forum, and will look to it your responses.

[celebrations]

Dear Lizy, what kind of subtype do you have ?
Do you know already about your eventual cytogenetic abnormity ? How many blasts do you have in your bone marrow ? And what’s your risk score ?
These are the questions I would ask my hemo and/or the physicians in the center of exellence, where so ever…It is very much important that you trust your docs.
Well, I am 50, mother of two boys with MDS-RARS and a trisomy 8….I have been knowing it for two months olnly, so I am very much conscious of your “sitting duck feeling”.
I don’t get any medicine so far, but I am afraid there’s soon going to be transfusions for my red blood cells keep going down!
My best wishes are with you, contact me if you want to, I am from Germany.
CELEBRATIONS

[Zoe]

Lizzy,

I don’t know about Texas or Colorado, but I would really encourage you to get to a center of excellence. I know the hemotologist who first diagnosed me put me on iron because there was no iron in the marrow. However, the clinic I now go to took me off it, saying that the lack of marrow iron was the result of the MDS somehow, and that taking iron wasn’t helping me at all.

If I were you, in addition to the questions Celebrations posed, I would also want to know what my hemoglobin and hematocrit are, how my platelets and whites are doing also.

Are your blood counts stable? Before I started Aranesp I was getting blood work every month, and going to the clinic every 3 months, even with stable counts. When I started a downward trend and began the Aranesp, I went to blood work every 2 weeks. Waiting 3 months for lab work seems like a long time to me. Maybe others have a different perspective.

Zoe

[Carl]

M.D.Anderson in Houston is a Center Of Excellence for MDS and I went there for a second opinion back when I was first diagnosed. They are really patient friendly but very busy in the Cancer Center that you will actually go to. I would definately recommmend that you go there but plan on it taking at least two days. Also, if you want to have sedation for a required bone marrow biopsy while you are there you need to make prior arrangements, otherwise it will be with only local anesthesia.

Good luck.

[patti]

Lizy,

It sounds like you are not currently requiring transfusions? If this is correct then there are several things I would recommend. It sounds like you might be in the very very early stages if all they are seeing is larger then normal red blood cells. If you are not requiring transfusions then by all means, a watch and wait is the best scenario. However, and this is a big however, I would immediately begin working on a very healthy diet. I would encourage you to read the book, The Maker’s Diet and check out the Gerson clinic in Texas (I think it’s Texas). You’ll find them online. Juicing daily will go a long way towards nourishing and healing your body as much as you can. I really believe that if you do those three things you will go a long way towards warding off progression of this disease.

Also, it would be worth a second opinion from MD Anderson. They *may* push all kinds of treatment “options” which I wouldn’t encourage. Or they may give you a “watch and wait” protocol. But, it is important that you have the correct diagnosis and I think having them second your current doc (or not) is important.

Taking iron at this stage is unlikely to help unless you’re low in iron. And if you are low, iron pills are not what you need. They are only 10% absorbable by the body. You can get a liquid iron called Floradix that is very absorbable and has some other herbs with it to also help absorption.

Take care, and read, read, read. Everything that you can.

All the best,

patti

[paml]

Lizy,
Are you taking an iron supplement? If you are you will want to find out what your iron stores are. Many patients with mds have high iron stores and don’t require, or are in an iron overload situation. This is true for some patients even though they are not tranfusion dependent. In the case of Procrit users iron stores are necessary for its effectiveness.

Best Regards,
Pam L.

[jga_socal]

If you were diagnosed with mds with a real low red blood count (hemoglobin level), you probably were well underway to iron overload at the time of dx. It takes some time, maybe years, to get to the point where you know something is wrong and get that blood test that shows anemia. During all those month or years with your low hgb count, the iron in your body had fewer hemoglobins to bind, so it would have gone into ferritin stores, raising your iron counts. Look at it this way, normal blood contains around .5 grams of iron per pint. The avg person with 16 pints is thus carrying 8 grams in their hemoglobin. If your HGB count was first found at 50% of normal (15) that means 4 grams of iron had no hemoglobin with which to bind, so it was socked away your Ferritin stores, starting to cause trouble.
When you get transfusions you add 1 gram of iron per 2 pints. That adds up very fast.
Insist on a serum Ferritin test as soon as possible! Until you know how your body is going to deal with excess iron, cut down on high iron foods and vitamins.
Regarding MD Anderson, I believe that is one of the highest ranked transplant COE in the country.
Regarding info. Make sure you go to http://www.marrow.org and order lots of free materials. I dont know who pays for this but the material is top notch and explains so many things about marrow diseases, transplant options and centers. A quick link to the page where you can order your free material is HERE
Be sure to get “Choosing a Transplant Center: A Patient’s Guide”. This large spiral bound book has ‘outcome’ statistics from all the centers in the country. You can shop around. Other materials include a financial checklist to help you determine how to afford a sct.
Marrow.org is one of the websites run by the National Marrow Donor Program (nmdp), the outfit that maintains the database of volunteer stem cell donors. If and when you decide to get a sct, the nmdp will search their database, and others, for your perfect match. 🙂

[seekay]

Dear Lizy,

Not to scare you, but have you considered or are you aware that parts (perhaps all?) of Colorado have (has) very high levels of uranium ore, because of the geography of that state. Radon exposure, for example, is a big issue in places like Telluride. I would always consider the environmental implications of one’s present location and the proposed one as well.

[sugarwhale]

Dear Lizy,
I can’t help you to decide between Texas and Colorado. But I can tell you that our New Mexico Center of Excellence (The Univ. of NM Cancer Research and Treatment Center) is OUTSTANDING. We love our doctor! He has saved my mom’s life. You didn’t say WHERE in Colorado you might be moving to, but Albuquerque is only 4 hours from the border. Every case of MDS is different. My best advice to you is to arm yourself with knowledge. And, yes, try to go to a Center of Excellence.
~~~ Janet

[choijk]

Hi, I’ve read on various websites and forums that patients with MDS is best advised to treat at a Center of Excellence. I live in Los Angeles and my parents have insurance through Kaiser, where my dad is currently being treated at this time. I really love our current doctor as he is really compassionate and is really taking the time to answer all of my (billion) questions I take in every time we see him without showing any signs of irritation or impatience. I noticed the difference between our current hematologist and the past one my dad was treating under. My dad’s past hematologist was probably a nice guy but I didn’t feel comfortable with him and I felt as though he really wasn’t giving us his 100% and he was always in a rush to get us out, so we changed treating physicians. Our current hematologist came from the City of Hope in Duarte but I havent been able to ask about his past experiences w/ patients with MDS. But my question is…. what are your thoughts of not treating at a Center of Excellence? I want to make sure we have the best doctor out there to treat my dad so we can make informed decisions ourselves to decide which treatment we should proceed with next. Thank you in advance for all your advice!

[Lizy]

June,

Since I was recently diagnosed and only going to a Center of Excellence tomorrow, I wouldn’t really have an answer for you until next week. However, I can say that I feel blessed that in the Center of Excellences there are Specialist who treat for ONLY MDS, whereas a hematologist works with different diagnosis. I just feel at this time, I will be getting the most cutting edge information since Centers of Excellences are “RESEARCH” driven. I’ll try to remember to respond next week on my experience.

Lizy

[chuckk333]

Lizzy,
Where do you live? It is helpful to know about your dx ann the date you age and other information that can be in your profile.

Chuck

[Lizy]

Chuck,

I’m still at the stage of truly finding out my actual counts, initials (for a lack of a better term), etc. I have been told that I have Macrocytic Anemia which can then result into MDS. My doctor took about 9 months of trying everything before he finally dx me with mild MDS. I am now going to MDAnderson in Houston tomorrow to get the “full” picture, and I can then post it on my member information. I can tell you that I’m 44 years old with no symptoms. I currently am taking an iron supplement and B12 shots months to help support the bone marrow. I know at this point I’m blessed to be at possbily the most early stages of this, so it can be monitored. I presently live in San Antonio, TX. We hope, God willing to move to Evergreen, CO in mid June. I’m a bit concerned about the altitude affecting my anemia and another posting member who mention uranium. I plan to discuss this with the doctor at the MDAnderson.

[Zoe]

June,

I actually don’t go to a Center of Excellence. My health care providers are at a large cancer clinic associated with a university. They treat many MDS patients. The CNP just did a national presentation on MDS for nurses. I feel comfortable with them right now. I did not feel comfortable with the local hematologist however. At the very least, you want someone who is familiar with MDS, has treated a fair number of MDS patients, and someone you feel comfortable with.

Zoe

[Patsi]

Hi Lizy,
I had your same symptoms for years. I wish someone had recommended a bone marrow biopsy sooner. As soon as my new oncologist/hemotologist did a biopsy I was diagnosed with MDS 5q deletion in December 2005, and less than a month later the FDA approved Revlimid. I am in the Rev Assist program and have not had to have any blood transfusions. I am one of the fortunate ones and at this point taking 5mg Revlimid every other day. Although there have been times that my WBC’s and Platelets have been low, currently all my levels are in the “normal” range. My sister died of leukemia, which presented first as MDS 10 years ago. New medications and DNA research etc. has come a long way in 10 years. Take care.
Patsi

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