New Member Welcome

[rdavidp]

Originally Posted by triumphe64

Speaking of Dachshunds: I was in Santa Monica last week and I saw a guy walking a piebald dachshund. I had never heard of such a thing. He told me people stop their cars to talk to him about it.

Hehe...we are the family of "non-standard" color dachshunds. We have two piebalds and a brindle.

[surabhi]

Thank you for welcoming to the site. My mother is a MDS RAEB II patient and i'm on this site to seek some help and information that might help her. I have posted a thread explaining it in detail and hoping for someone to respond with any answers.

All the help is much appreciated.

Many thanks
Bharti

[Treemonkey]

Hi I am a 47 year old white male who was just diagnosed with MDS-REAB-2 last week. My wc is 3.6 my platlets are 65. The Cancer Doctor is sending me to Hershey Medical Center in Hershey PA on Monday April 9, 2012. I of course am nervous and don't really know what to expect. Could anyone give me an idea of questions to ask the Dr. when I go and what to expect I would really appreciate it.

[Neil Cuadra]

Hi Treemonkey. The Aplastic Anemia & MDS International Foundation has a page of tips about your doctor visit, along with suggested questions.

[brniii]

Hello All! I was diagnosed with AA today and happy to have found this site to research all the questions I have....didn't really ask a lot at the doctor's office today....the name was still sinking in let alone all he was trying to tell me....

[PatyV]

Hello, my name is Patricia and I'm a 45 year old, Mexican female suffering from Myelodysplastic Syndrome. I would like to meet people who also have this syndrome and be able to talk and ask them about this condition. I am currently being treated both in my town's regional hospital and at KU Research Hospital with Vidaza. Hopefully I'll be able to meet some people who can help me.

Paty

[Christi R]

Hi
We are trying to connect my teenage daughter with other teens with AA.

[ssdavi71416]

Hello

On facebook there is a website named "prayers for Ashley Jade" she is a teen I think 14 yrs. She was diagnosed in dec 2011 and I believe she lives in Central Florida. Best wishes for you and your daughter.

Scott 51 yrs SAA 3/2012 ATG and Cyclosporine. Seeing improvements every week. plate 23, Neut 1.1 and Hem 8.1 RBC tx about once a month

[Christi R]

Thank you so much! That is exactly what we are looking for.

[triumphe64]

Also try www.AAMDS.org . They have a peer support network and can probably find a match.

[Christi R]

Thank you! I'll check it out.

[hopeful_AAgirl]

Hi! I'm karen claire and I'm 24 yrs. old.

I've been an Aplastic anemia patient for a long time. Aplastic anemia was ruled out to be my medical diagnosis last 2006 and I started multiple blood transfusions even before that which was in the year 2000. My platelet count ranges from 12-24 but now rarely goes up to 24 and only reaches 18. I still receive monthly blood transfusions - when it is necessary.

We went from doctor to doctor and now we are meeting a new doctor since we were discouraged at how our former doctor met us during my check-ups and the hospital we was in wasn't that good compared to the new hospital we're going to.

I had Cyclosporin and Exjade for treatment but had stopped. I got tired of drinking the meds for the past years so I eventually stopped and didn't tell my doctor about it but now, I told my new doctor of it. She told me to do work-ups and stop cyclosporin for now.

I'm not sure what the next thing to do is because I want to stop being dependent with my parents. They're getting old and I still have two siblings who are going to school - an elementary and one in college. I have a boyfriend right now who is still studying. My parents are even against him because they don't trust him that he could take care of me. I'll stop studying again but will continue with distance learning due to my situation and I'm planning to start an online business.

I'm not sure how to be with my parents and continue going out with my boyfriend who exerts efforts to make me feel loved and cared for as he could. I'm not sure how to start a business with my parents around interfering with how I'll manage and decide for things.

Of course, I know they just care and are overprotective of me because of my illness but I feel suffocated most of the times. I don't know what to do.

[Bambam]

Hello, I was recently diagnosed with MDS Refractory Anemia. This came as a huge shock to me and one which I am still finding difficult to believe as I struggle to learn the language and implications of this disease.
After the bone marrow biopsy, I was informed that chromosome testing would take 4-6 weeks. When I rang my Hematologist after 7 weeks, she checked with the Labs and was told it would take 2-3 MONTHS. Does anybody have a similar experience and if so, why would it take so long after I was told a far shorter timeframe? Thank you for your thoughts.

[Bambam]

Originally Posted by PatyV

Hello, my name is Patricia and I'm a 45 year old, Mexican female suffering from Myelodysplastic Syndrome. I would like to meet people who also have this syndrome and be able to talk and ask them about this condition. I am currently being treated both in my town's regional hospital and at KU Research Hospital with Vidaza. Hopefully I'll be able to meet some people who can help me.

Paty

Hello Patricia. I too have this syndrome and although I am new to this, would be glad to be your cyber buddy when I can.

[Neil Cuadra]

Originally Posted by BrendaF

Hello, I was recently diagnosed with MDS Refractory Anemia. This came as a huge shock to me and one which I am still finding difficult to believe as I struggle to learn the language and implications of this disease.

Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada, and ask all the questions you want.

After the bone marrow biopsy, I was informed that chromosome testing would take 4-6 weeks. When I rang my Hematologist after 7 weeks, she checked with the Labs and was told it would take 2-3 MONTHS. Does anybody have a similar experience and if so, why would it take so long after I was told a far shorter timeframe? Thank you for your thoughts.

There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon.

[Neil Cuadra]

Originally Posted by hopeful_AAgirl

Hi! I'm karen claire...

Hi Karen.

Unlike many of the patients we meet here, you are already a long-term survivor despite being young.

Did one doctor say that you have aplastic anemia and another doctor say that you don't? Do you ever have trouble with your white count or just with your platelets and red blood cell count? Have you had a bone marrow biopsy? If so what did the results show?

I hope you find a doctor who will work with you and with whom you feel very comfortable. I'm sure you've heard that you must always tell your doctor about medicine you are taking or not taking, because otherwise they can't give you the appropriate advice. You want a doctor you can be totally honest with. Your doctor can test your iron levels to know whether or not you need to go back to a drug like Exjade. If you need it, take it. If you don't, that's fine, and you'll just need to be tested now and then to see if your iron levels go up again.

From your comments about your parents I think you are a normal 24-year-old. I don't know a lot about the lives of young adults in the Philippines but parents are mostly the same everywhere. Some parents are overprotective of their children as they go through their teens and twenties, and they have to learn to let go. When a child has a disease like aplastic anemia, parents have an even stronger impulse to protect them. But keep in mind that they want what's best for you, and since they've lived longer they've learned things that they can teach you. You can each learn from each other and should respect each other.

You might tell your parents that they don't have to worry about whether or not your boyfriend can take care of you because YOU can take care of yourself. Then you can prove it by telling them what you plan to do about your aplastic anemia: which doctor you are going to work with, what your latest test results mean, how you will decide on the next treatment to use, and so on. Teach your boyfriend about aplastic anemia so he can be part of your team too, and so he can talk about it with your family. Meanwhile, continue to plan your future, whether it's school or a startup business, and talk about that with your family too. If you are confident about managing yourself and about what you want for your future then I think your parents will start believing in it too!

[Bambam]

Originally Posted by Neil Cuadra

Most of us went through the same period of shock and realized that only by learning what was happening to us could we help do anything about it. Like you, my wife was diagnosed with MDS/RA. We were frightened at how serious a disease MDS can be, and only slightly relieved that MDS/RA is at the less-risky end of the MDS scale. Gather all the information you can, including from the Aplastic Anemia & Myelodysplasia Association of Canada, and ask all the questions you want.

Thank you for this. Those are my feelings exactly.

There's a certain amount of time needed to process and analyze the biopsy, so waiting a week or 2 isn't unusual, but the long delays you've been told about sound more like procedural delays. It sounds like your hematologist isn't part of a major treatment center and has to contract out the lab work, or maybe she can get it done only on a monthly cycle. Even then, I can't imagine what could take 3 months. If your hematologist is associated with a treatment center, you might try asking an administrator there about it instead of asking the doctor, or ask to be put in touch with the lab directly. It's awful for them to leave you hanging in the balance for so long, especially if your other lab results indicate that you should begin treatment soon.

My Hematologist is an Assistant Clinical Professor and Clinical Hematologist at Vancouver General Hospital, a large and reputable teaching facility associated with University of BC. Upon your advice, I have today called and asked to know what is the reason for the delay and also whether I can be referred to the MDS Clinic at VGH. I hope I don't offend my Hematologist but it seems there is a well respected Specialist, Dr Tom Neville, in the same unit.
I think my lab results are bad and I have some other troubling symptoms - itchy scalp with pimples in the hair, thinning hair, mild headaches at the top/back of my head, fatigue. However, when I see the lab results of others here, perhaps mine suggest low priority. I have also lost a lot of weight and despite now eating normally, am staying at the low weight - oh if I could have lost that weight before MDSRA!
The Hematologist thinks something else may be going on besides the MDS as she doesn't link those symptoms to the syndrome. I hope not.
Thank you again for your thoughts - it helps to know one is not alone with the scary thoughts that come to mind now and then.

[Cam]

My name is Cam I am a 39 year old father of two recently diagnosed with MDS. I am lucky in that I live near Jacksonville Florida and can go to the Mayo clinic for treatment. This was found by a fluke when I had a physical in July (my wife made me). Since then I have spent more time in a Doctors office than I have in my first 39 years... I am going to whip this so I can see my two kids graduate HS. Thanks for providing a forum to hear from others.

[Ruth Cuadra]

Hi, Cam.

When I was first diagnosed I could have made the following statement. Notice any similarities?

My name is Ruth I am a 41 year old mother of two recently diagnosed with MDS. I am lucky in that I live near Los Angeles California and can go to the City of Hope clinic for treatment. This was found by a fluke when I had a physical. Since then I have spent more time in a Doctors office than I have in my first 41 years... I am going to whip this so I can see my two kids graduate HS.

Now here's an update: I did whip MDS, my husband and I saw our two kids graduate high school, and then saw them graduate college and start their careers. I'm working full time, finished my Master degree's in 2011, and enjoy seeing where life takes me. I hope you have equal success.

Regards,
Ruth

[Sfdcoach]

Hi I'm the parent of a 3 y/o boy who has been diagnosed with AA in march of 2012 unfortunately this isn't his only diagnosis. He is also diagnosed PDD-NOS which lies on the Autism spectrum. He has 2 possibly 3 other medical issues as well I am in search of another similar case. I have been looking for another family like ours to compare notes and find help in suggestions on how and where to proceed on our way to a now suggested BMT. Please if anyone has any information contact me I'm starting to think my son is the only case with a child on the spectrum with AA.
Thank you. -T

[Chirley]

Hi T, welcome to the forum.

May I ask if your son has any chromosomal abnormalities? Sometimes a number of different syndromes/diseases can be linked to a particular chromosome problem?

Regards

Chirley

[Sfdcoach]

Hi Chirley as per our last biopsy on 1/15/13 no chromo abnormalities or mds. I cannot find another toddler with both diagnosis at this time. We are currently trying to configure our next move before we head to a bmt. We feel all of his other diagnosis need to be throughly investigated. His ATG treatment was now 9 months ago. Being that we have had issues with medical facilities being able to accommodate with a spectrum understanding we are looking for a proper facility.

[triumphe64]

Originally Posted by Sfdcoach

Hi Chirley as per our last biopsy on 1/15/13 no chromo abnormalities or mds. I cannot find another toddler with both diagnosis at this time. We are currently trying to configure our next move before we head to a bmt. We feel all of his other diagnosis need to be throughly investigated. His ATG treatment was now 9 months ago. Being that we have had issues with medical facilities being able to accommodate with a spectrum understanding we are looking for a proper facility.

Have you contacted the NIH? They like rare cases.

[Sfdcoach]

Please tell me what is NIH? This is the first I'm hearing of it unfortunately.
I looked it up, thank you. I will give them a call tomorrow to see if I can find some help there.

[Sally C]

Sfdcoach,
NIH - National Institutes of Health in Bethesda, Md. has a huge beautiful stone building that is just for children and their families. They seem to treat many children as well as adults. A wonderful, hopeful, healing place that is on the cutting edge.
I wish you and your son well.
God Bless,
Sally