New Member Welcome

[triumphe64]

Originally Posted by 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

If you get in, treatment is free.

[triumphe64]

Have you talked to Leigh Clark at AAMDS?

She knows all the resources.
Call (800) 747-2820 press option 1 or email help@aamds.org
or clark@aamds.org

[CGJones]

Hi, I just found this site via google. I so look forward to "talking" with others @ my mother's diagnosis/prognosis.

[AngstyMcJoe]

Hello! I just found this site last night while cruising the 'nets trying to find *somebody* else that has AA. I was just diagnosed sAA last month, and am awaiting BMT. Looking forward to reading everyone's stories and advice with dealing with bone marrow failure.

[triumphe64]

AngstyMcJoe,

Also check out www.AAMDS.org.

Call them, and they can help you find others to talk to.

[shelby]

I have read many stories on this fourm looking for answers, and trying to wrap my head around the situation my son is facing. In spring of 2012 my 17 yr old son was dx with PNH. This was a shock to my husband and I, because eversince he was 6 yrs old we were told he had a platelet defect that just needed to watched the BMB did not show any cancer. We thought he was doing fine, and for 10 yrs he was, other than some bloody nose and bruising.
Than one day he said he did not feel good and, oh by the way mom my urine is really dark I think I just need to drink more water. Ok, so I did what any mom would do and took him to see his DR. ASAP.
He was anemic, and had black urine, so off to his hemog who said she thinks he might have pnh. He had a second bmb and a flow test to confirm the Dr. PNH theory. During the drive home from the BMB test the Dr. called and said it is PNH and prolly always has been. His flow analysis showed 55% confirmed by the NIH at our second evaluation. Our family was test and he has a HLA matched sister, and was started on soliris in August. He was given the menn vacc but in Nov. got it any way. He pulled through, do to getting him to the hospital as soon as he got a fever. He takes a mulivitamin with iron and foliac acid and now daily penicillian. We are still looking at BMT for him but just not ready.
I feel thankfull that I came across this forum and now just wanted to join and see if I can help anyone like me and my son.

[Bhutt]

Thanks for having me

[Peachy]

Hello and thank you.... I have been looking for a site where folks share their experiences, trials and successes. We have been researching MDS for a year and unfortunately I did not find this site until yesterday. Thanks for all you do.

[chalky.1]

Im a newbie trying to find my way with my Dads prognosis.

[Nina B.]

Hi everyone,
I'm 23 and was diagnosed with MDS in January this year - since then, things went on really fast and I'm only now adjusting to it somehow and getting myself better informed. and it's high time: a bone marrow transplantation is planned already for August. Currently, I'm quite bothered with the possibility of being infertile after the chemo - any experiences/tips/whatever on that?

[Neil Cuadra]

Originally Posted by Nina B.

Hi everyone,
I'm 23 and was diagnosed with MDS in January this year - since then, things went on really fast and I'm only now adjusting to it somehow and getting myself better informed. and it's high time: a bone marrow transplantation is planned already for August. Currently, I'm quite bothered with the possibility of being infertile after the chemo - any experiences/tips/whatever on that?

Hi and welcome, Nina. I hope we can help you get your bearings.

Regarding fertility, go to the search page and search on the word fertility. You'll find several good discussions on the topic. The bottom line is that you have to talk to a fertility specialist about your options now (the sooner the better) and not after a transplant when it might be too late.

[William c]

I am a 30 year cancer survivor. I was diagnosed with lymphoma cancer on April 7TH 1983 at the age of 36 years old. I was married with two small sons.
I started chemo right away. We were able to remiss the disease in about 8 months of chemo.
The lymphoma returned in 1989 and we went after it with chemo and radiation. We were able to remiss it again.
in 2005 the docs. told me I had prostrate cancer. We decided to have it frozen (but I asked to leave the right side, where the sensual nerves were, alone, mistake). It flared up again the next year and I had to go to MD Anderson to have it radically removed. The 8 hour operation almost killed me, but I survived. The cancer was detected outside the prostrate the next spring and we did hormone treatment and it now remains under control.
Last spring I started having symptoms of breathlessness and it was diagnosed as degenerative heart failure. The heart was only beating at 20% of normal and it could not remove the fluid. We had 3 stents put in and went on oral meds. They have worked to date and the heart is now beating at 40%. This was caused by all the chemo ad radiation.
I have now been told I have MDS and have been through a bunch of chemos and now I am taking an oral pill, Revlimid 5 mg and the side effects are killing me with muscle and bone pain.
How is that for a new guy saying hello?
I know I am only still here by the grace of God and do not know how much longer I can fight.
I just thought someone might be interested in knowing how tough we can be with good family, friends, docs., and the Great Physician.
William c

[Sally C]

You have been very strong and brave for all these years, William. And as you already know, the Great Physician is always with you.
God Bless,
Sally

[William c]

Thanks Sally C,
I will keep on fighting until its time to go home. I have ordered some Shark liver oil pills and some Blood tonic pills as per my nutritionists suggestion.
Has anyone used these before? and what has been the results thus far?
William c

[Bill A]

My name is Susan and I am writing for my husband Bill A. Bill was diagnosed with MDS in 2010. This doctors believe in Bill's case the MDS is caused by an autoimmune dysfunction. He also suffers from skin lesions which have been diagnosed as pyoderma gangrenosum. In February Bill's MDS became more aggressive with 10% - 15% blasts. He was put on Vidaza with many complications and transfusions. After two treatments, he is just beginning to feel better and counts are slowly improving. Has anyone experienced good results with Vidaza?
Our thoughts and prayers go out to anyone who has this dreadful disease.

[Whizbang]

Welcome Susan (Bill A),

Many have reported success with Vidaza, and yes, it can be hard on you at first, depending on your age and health... I'm young, and the first round of Dacogen (very similar to Vidaza), kicked my butt (WBC's and Neutrophil), but helped in all my other blood counts... I have to wait until next week for my second round because of infections / cold I got due to the Dacogen and low WBC's...

I will say that I was hesitant to do the chemo at first, but the results have been great...

Good luck to you and Bill, I'm very close to you guys in OldBridge NJ...

Originally Posted by Bill A

My name is Susan and I am writing for my husband Bill A. Bill was diagnosed with MDS in 2010. This doctors believe in Bill's case the MDS is caused by an autoimmune dysfunction. He also suffers from skin lesions which have been diagnosed as pyoderma gangrenosum. In February Bill's MDS became more aggressive with 10% - 15% blasts. He was put on Vidaza with many complications and transfusions. After two treatments, he is just beginning to feel better and counts are slowly improving. Has anyone experienced good results with Vidaza?
Our thoughts and prayers go out to anyone who has this dreadful disease.

[barlows69]

Hi. My husband was just diagnosed 4 days ago with MDS. He was in the hospital for 5 days because it was discovered during a followup visit with his GP that he was anemic with a count of 13 on the Hematocrit. The doctor said that was the lowest he had ever seen and husband was borderline going into shock. So had to call 911 and rush him to the hospital for 6 pints of blood and platelets. Friday night he was released and has his first doctor's apt this afternoon. We were wondering what to expect. The specialist said he may have to have another transfusion tonight.

[Neil Cuadra]

Hi barlows69,

Nobody wants to learn that they have MDS, but you've already had one bit of good fortune: having that blood count test and getting to the hospital in time for transfusions. At this point your husband will need CBC (complete blood count) tests regularly so he can get transfusions if his counts get too low and before it's a crisis. Transfusions may not be a long-term solution, but they get you past the crisis so you and the doctors you can gather more information and decide what needs to be done.

If he didn't already, your husband will probably undergo a bone marrow biopsy and aspiration, to find out what's going on in his bone marrow. That will tell you some numbers, like the "blast count" (a measure of immature blood cells in the bone marrow) and should let the specialist determine his MDS "subtype".

That information, and his age and overall health condition, will determine which types of treatments are to be considered.

Meanwhile, you'll want to learn what you can about MDS. It can be rather confusing at first, but as patients and caregivers we can actually learn quite a few details without being physicians ourselves. You can ask questions here at Marrowforums and you can read about MDS with information from either or both of these two great sources:

1. The Aplastic Anemia & MDS International Foundation's educational packet (a free package you request).
   
   
2. The MDS Foundation's Bone Marrow Book (a large PDF file you download).

You'll want your husband to be treated by an MDS specialist rather than a hematologist who hasn't worked with MDS patients. There are specialists at Oregon Health & Science University.

You want to learn enough about MDS that you'll be able to understand what the doctor says about his situation, and to have back-and-forth discussions with the doctors about your husband's care and treatment. Although you and your husband could simply let the doctor make all the decisions, I think that patients do much better when they participate more directly in their own care and understand the choices and tradeoffs.

Think of the most important questions you have and write them down before appointments. Then you can go over them with the doctor. It's good to take notes, perhaps carrying a notebook around with you, since it's otherwise hard to keep track of what you're told and what you want to remember. I suggest asking for copies of your husband's CBC test results each time his counts are measured, so you can observe if they are going up or down week to week and which counts are of concern. If you're good with spreadsheets, keep track that way.

Let your whole family know what's going on so they can be part of your research and support team. We're on your team too!

[Kathy S]

Happy to find such a caring informative group. Thank you for being there.

[Caregive]

Just found this site today. Been doing research all year. Don't know why I didn't find you all here. We have asked for a second opinion and have an appt in December. I look forward to checking here for info as time goes on.

[Phil Page]

Diagnosed with severe AA Jan 2014. Physical therapist in Baton Rouge, Louisiana. In treatment at NIH in Eltrombopag trial. You can follow my story at http://www.bonemarinara.com, which has a lighthearted view of my journey!

[sbk007]

Good to see you haven't lost your sense of humor through all this.
Hope all goes well, and your galloping home soon.

[Sally C]

Hi Phil,
Greetings from fellow LSU fans, Baton Rouge food fans, Promacta patient* and spouse. I can't write much now but want to encourage you to read my posts under "Clinical Trials" to read about the wonderful results my husband has had with Promacta.
You couldn't be in better hands at NIH. We've been going there since March, 2009. My husband has been transfusion independent for about 2 1/2 years now after over 125 blood/platelet transfusions. He has MDS - was their first Promacta MDS patient. He has been off the drug since July, 2012 and is currently on no MDS meds at all.
We wish you the best. Geaux Phil and Geaux Tigers!!!
God Bless,
Sally
*From Shreveport, La.

[onlyforthenight]

Hello! I am new to this site. I was diagnosed with AA in 2009 and treated with ATG and cyclosporine. It took seven months to recover and I lived a normal life, transfusion free, for four years. The AA returned in 2013 and I repeated ATG and cyclosporine. Unfortunately it hasn't worked this time. I am now on track for a BMT.

I'm curious to know your thoughts on the eltrombopag (promacta) clinical trial at NIH. I want the BMT, as it is a proven treatment method, whereas the clinical trial is still in experimental phases. I know promacta has worked for many patients, but in all candor, I'm ready to be done with this phase of my life and do not want to wait any longer. I feel that I'm making the best decision for myself, as confirmed by my doctor at UCLA, but I just want to know your thoughts.

Thanks!

---Chrissy

[triumphe64]

Originally Posted by onlyforthenight

Hello! I am new to this site. I was diagnosed with AA in 2009 and treated with ATG and cyclosporine. It took seven months to recover and I lived a normal life, transfusion free, for four years. The AA returned in 2013 and I repeated ATG and cyclosporine. Unfortunately it hasn't worked this time. I am now on track for a BMT.

I'm curious to know your thoughts on the eltrombopag (promacta) clinical trial at NIH. I want the BMT, as it is a proven treatment method, whereas the clinical trial is still in experimental phases. I know promacta has worked for many patients, but in all candor, I'm ready to be done with this phase of my life and do not want to wait any longer. I feel that I'm making the best decision for myself, as confirmed by my doctor at UCLA, but I just want to know your thoughts.

Thanks!

---Chrissy

Phil Page who has posted here has a blog. Here is the blog. He is on that trial.

http://www.bonemarinara.com/

You can send him a PM from this site.