New Member Welcome

[triumphe64]

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]

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...

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.:confused:

[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:
The Aplastic Anemia & MDS International Foundation's educational packet (https://www.aamds.org/patients/educational-materials) (a free package you request).


The MDS Foundation's Bone Marrow Book (http://www.mds-foundation.org/wp-content/uploads/2011/10/BoneMarrowBook.pdf) (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 (http://www.ohsu.edu/xd/health/services/cancer/index.cfm).

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]

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.

[anslia]

Hi,

Discovered this forum and have been browsing the information/stories, while awaiting a diagnosis on my father. Dependent on diagnosis, I may not be here long - however, I am thankful for finding this forum, and a community of support.

Sincerely,
Anslia

[bailie]

What is your father's situation that is leading to a diagnosis?

[anslia]

If I am posting this in the wrong place...I apologize.

My father's age: 75


My dad was hospitalized 7 Mar. His Hgb was 8.7, and after a colonoscopy, was advised that low Hgb was due to a small polyp. On 10 Mar he underwent his first blood transfusion, and was discharged 11 Mar w/Hgb 8.8. The hematologist contacted said that he would see my father in his office.

18 Mar. Hematologist said that Dad is to begin receiving IV-iron treatment.
His lab results from that appt were: WBC 1.8; RBC 3.6; Hgb 11.8; Hct 33.9; MCV 94.2; MCH 33; MCHC 34.9; RDW 16.1; PLT 215; MPV 7.1; Gran# 0.6; Lymph# 1.2; Mono# 0; Gran% 30.6; Lymph% 67.4; Mono% 2.

An iron study was also done: Iron 171; UIBC 97; TIBC 268; %Saturation 64; Ferritin 618.3

In addition...an Erythropoieten Serum: 116


25 Mar IV Iron given. Told that the "anemia direct result of polyp".

27 Mar Hospital. Transfusion. Hgb 8 (Do not have any other CBC figures)

8 Apr IV Iron given. Pathology from polyp = all good.

14 Apr Hospital by ambulance. Hgb 7.8 Transfusion given.
15 Apr Transfusion given. Cat scans clear. Discharged and scheduled for a bone marrow biopsy as "It is something with the bone marrow".

22 Apr BMB done "Should not need another transfusion for at least 2 weeks". Results will be in 7+ days. CBC:
WBC 1.7; RDW 16.4
RBC 2.8 PLT 263
Hgb 8.9 MPV 6.9
Hct 25.3 Gran# 0.4
MCV 91.9 Lymph# 1.2
MCH 32 Mono# 0.1
MCHC 35 Gran% 23.1
Lymph% 73.5
Mono% 3.4

29 Mar Transfusion
WBC 1.9 MPV 7
RBC 2.6 Gran# 0.3
Hgb 8.1 Lymph# 1.5
Hct 23.9 Mono# 0.1
MCV 93.6 Gran% 15
MCH 32 Lymph% 81.10
MCHC 34 Mono% 3.90
RDW 17.5
PLT 308

1 May Bone Marrow results- inconclusive/not a good sample. Undergoes another bone marrow biopsy.

5 May Hospital - transfusion. (I will have a CBC this evening...but Hgb was 8.2)

We are supposed to receive results from bone marrow biopsy on Weds.

I apologize that this is so long.

Sincerely,
Anslia

[bailie]

I wish your Dad the best possible diagnosis. Naturally no one on this forum can make any kind of diagnosis. It would be a guess. Hopefully they will get a good indication from the biopsy. I am surprised that they didn't do a biopsy sooner. I had two BMB within a week when my similar numbers showed up on a CBC.

[anslia]

I do not expect a diagnosis from this board, and I apologize if I gave that impression. It is just the frustration of knowing something is wrong...and by following the numbers....seeing that whatever it is appears to be quite aggressive.

In addition...I will admit that it bothers me that the hematologist is not actively monitoring my father. "Call the office and make an appointment if you think he needs to be seen."

I will also add...that I am not with my parents yet. They live a few states away - and I am actively preparing for an extended visit at this time. And until a few weeks ago - they were not asking for copies of any lab work, etc.

Anyway, thank you very much for taking the time to respond to me.

Sincerely,
Anslia

[Lilithe]

Hi! I'm Lilithe. 44 years old. Just diagnosed today with PNH. Was tentatively diagnosed with MDS 8 years ago, but nothing definitive, so I walked away from the bulk of the medical world and tried to heal myself with diet addressing what I thought was the cause. But now I can see the problems I have had most of my life were symptoms and not causative. So good to have a sound diagnosis so that I can stop struggling to deal with it on my own and head in a direction that may help me get my life back. Just had a BMB today, so a wee bit sore, but grateful to not feel so in the dark. Thanks for this forum! Oddly enough, I found it because I have been binge watching "House" for the last few weeks (not much energy for anything else!!) and was curious if they had ever mentioned PNH in an episode - led me here! Kismet... :cool:

[Neil Cuadra]

Lilithe,

Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.

You must have run across the PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.

[triumphe64]

Lilithe,

Good luck getting a handle on your illness and what you can do about it. I hope you'll be able to consult a PNH specialist.

You must have run across the PNH mentioned on "House" TV show thread. There were a surprising number of "House" episodes that touched on bone marrow failure. Maybe my family is just attuned to notice them because it's a medical area we're familiar with, but AA, MDS, and PNH seemed to have just the right combination of mysterious symptoms, terminology, and diagnostic challenges to suit the writers of that show.

There was one with a bicycle rider who turned out to have PRCA. He also had MG. At the end of the show, they removed his thymus gland. Problem solved. In the real world less than one person in the world gets this combination in any year. I love(d) House.

[julielucas]

Hey y'all! This is Julie, my husband Jeff was recently dx with MDS. Wish I could tell you what subtype etc but no one has told us yet. I'll try to find the correct forum to give all the details. Just wanted to introduce myself and tell you that I'm sure glad this forum exists!

[Carole L]

Hi Everyone,
Am a 58 yr old woman recently diagnosed with MDS-refractory cytopenia with multilineage dysplasia less than 2% blasts. IPSS-R 4 - intermediate risk. Still in shock, researching like crazy and emotionally on a roller coaster ride.

Have been offered Viadaza to start as first line, with BMT as follow up- no thanks. Such high risks involved in BMT -not sure I could commit.

Am curious to know if anyone has been to Angeles Hospital in Tijuana, Mexico or any other alternative health clinic. If so, what sort of results have folks had.

Thanks
Carole

[Hopeful]

Hi Everyone,
Am a 58 yr old woman recently diagnosed with MDS-refractory cytopenia with multilineage dysplasia less than 2% blasts. IPSS-R 4 - intermediate risk. Still in shock, researching like crazy and emotionally on a roller coaster ride.

Have been offered Viadaza to start as first line, with BMT as follow up- no thanks. Such high risks involved in BMT -not sure I could commit.

Am curious to know if anyone has been to Angeles Hospital in Tijuana, Mexico or any other alternative health clinic. If so, what sort of results have folks had.

Thanks
Carole


Hi Carole,

If you are in the LA area, I would recommend Dr Paquette for a second opinion. Do you have any cytogenetic abnormalities?

[bailie]

Carole L,

You said, "Have been offered Viadaza to start as first line, with BMT as follow up- no thanks."

Vidaza is generally offered primarily to high risk patients. I had Vidaza for eight months without any side effects. I don't think I would have made it for eight months without the Vidaza. I never had any transfusions or anything other than the Vidaza during that time.

You seem to have made the decision early on not to try to extend your life. I realize that it is a very difficult and personal decision. I wish you the very best.

[mausmish]

Carole,

My story was very similar to yours, diagnosed at age 56 and not wanting to pursue treatments that could reduce my quality of life for the little time I had remaining. I changed my mind and first decided to try Vidaza. I was lucky - a very quick, positive effect with no ill side effects. My counts returned to normal, and I looked and felt great. Months later, I started reconsidering the bone marrow transplant and visited several hospitals for consultations. All agreed that the Vidaza might work for years or might stop working anytime. The only chance at a cure was transplant. It was an agonizing decision but I decided to go for it. I had an unrelated matched donor. That was four years ago, and I am doing well with no evidence of disease at my last checkup in December. My husband and I chronicled our past 4 years in our blog, http://www.mausmarrow.com.

Only you can make the decision that's right for you. I wish you all the best.

Karen

[Carole L]

Thanks everyone for your comments. I must apologize for my harsh reaction re refusal of treatments although I think most of you will understand the ''shock" of it all.

I am now leaning toward a course of Vidaza as have had a chance to read people's experiences together with a little more research. As always time softens ones reactions. Short term discomfort from side effects that may yield less transfusions is of course of HUGE benefit.

Am awaiting treatment plan option details from Angeles hospital in Tijuana as believe that a non invasive approach can yield as good or better results for me. Saying that however, I am also a realist and realize the drug option may be the best route.

Thanks for the words and stories of hope re bone marrow transplant. Of course never say never.

With many thanks
Carole

[Cheryl C]

Hi Carole - I also have MDS RCMD and my blast levels are similar to yours (not exactly sure at present as it's nearly 12 months since my last biopsy). I understand your reservations about rushing to conventional medicine for treatment. When my blast count reduced without treatment to 2% I decided not to embark on any conventional medicine options until absolutely necessary and 3 years later I'm still stable. In that time I've learned a lot, especially from this forum, and now if my condition seriously deteriorated I think I would probably have the confidence to seriously consider SCT or some other form of conventional therapy.

My biggest problem by far is white cells and neutrophils. I can manage my infection vulnerability reasonably well with diet and natural remedies along with the 4-weekly gamma globulin infusions. I feel well most of the time. However I gather you have a problem with your red cells. My impression is that this is harder to treat by natural means. I'm interested to know whether you have evidence that the Angeles hospital has had success with patients who suffer from the same issues that you have, and what types of treatment they offer?

[Carole L]

Hi Cheryl,

I received news today from the Angeles hospital that they would not accept me as a patient. The reason is they honestly don't feel that their program of immunotherapy would help. Dr. Perez was clear, there is no cure for MDS and it is difficult to find the right treatment. Sad, but happy they were so honest with me.

So....onward to am not sure right now. Heading for a second transfusion early next week and then a meeting with my haematologist. Have a few more questions re Vidaza and then based on that info will make a decision whether to move ahead with the drug.

In the meantime, am going to order some Shark Liver Oil for overall health & well being but also see from former posts tis potentially good for increasing platelets perhaps?!

Am going to be moving into juicing and wheatgrass shots also as my digestive system seems to suffer as my haemoglobin drops. Strange.

Still coming to terms with MDS in my body and my life. Yoga and meditation are my pillars at the moment, but the most important is the love of my partner and sweet family and friends.

Happy for any comments or suggestions from folk on this forum.

Cheers Carole

Diagnosed Dec. 2014 MDS-RCMD Less than 2% blasts
No drugs as yet - stable. :)

[bailie]

Carole L,
Very tough decisions. I think the earlier a person decides the course of action the better. MDS seems to wait for no one. If a person decides to extend their life, it is very important to do so in optimum health. MDS seems to thrive on any weakness. It is a sobering disease. The only chance for extending life at your stage will probably be Vidaza then stem cell transplant, but that is for your Drs. to advise. Many, perhaps most, of us have been where you are in this decision making process. There is no wrong decision because it is so personal. Vidaza would be the least of my worries.
I wish you the best.

[Hopeful]

Hi Carole,

The reason why I asked if you had any cytogenetic abnormalities in a previous post was because ATG can also be an option for some people with MDS-RCMD and no cytogenetic abnormalities or increased blasts. If this applies to you, I will try and dig up a presentation that talks more about this.

[Carole L]

Thanks for your post Hopeful. I do not have the cytogenic report at the moment and my haematologist is away till next week. I do believe however, that he has given me the only options available for my specific MDS. But thanks for the info and I will inquire next week when I see him.

This morning after reviewing the BMB report, I understand at a deeper level what is happening in my body from the medical and scientific viewpoint.

Making plans now to rent a suite for a couple of months in Vancouver as that is where the Vidaza treatment will take place. We live about 3 hours away, (2 by ferry), so for the first 2 cycles will stay close to the hospital. Am blessed as a good portion of my family and sweet friends live in Vancouver so will have lots of support as well as my life partner beside me.

C

[bailie]

Carole L,

The Vidaza treatment is very simple generally. The only part that takes time is that they won't start mixing (it is a two part process) it until they see you. I got my shots (two each day for seven days) in my stomach. That sounded awful when they first talked about it, but they didn't seem to be a problem and they very seldom caused any pain. I did have to map out my stomach so they could get the seven days. The shots need to be an inch from the previous shots. I took an anti-nausea pill about an hour before the shots. The anti-nausea pills will almost always cause constipation. Be very aware and prepared. The actual getting the Vidaza takes about five minutes or less.

I lived a totally normal life for the eight months (seven days of shots, 21 days off) I was getting Vidaza. I was usually golfing 18 holes (walking six miles) the same day as the shots. The worst that I felt was a sunburn feeling in the location of the shots. It wasn't enough to lose sleep and a couple of Tylenol always made it easier/not noticeable. Naturally it is different for everyone, but generally the Vidaza is well tolerated.

Your blood counts will dip at about the second or third round of Vidaza and then should get better. My counts were all close to normal by the fifth round.

Will you be able to get the shots in your local area after the first two rounds? That is something to check on.

I wish you the best.

[dsandrock91]

Hello my name is Dalesa and I was just recently diagnosed with aplastic anemia. I got diagnosed in September of 2014. At the present moment I am not receiving any treatments except monthly check of my blood cell levels.
I am only 23 and I feel like since I was diagnosed my life has stopped. I constantly worry about my numbers dropping that I am getting to the point I am afraid to live. I have goals of wanting to be a preschool teacher and starting a family but now I fear that I won't be able to because I never know when my numbers will drop or if I will get sick. When I got diagnosed I kept asking myself why me god, why now. I am young and should just be starting to live yet I feel I can't . Its hard for me to deal with it, I have no idea how to cope and live with AA.
When I got diagnosed the doctor told me this is what it seems like I have; guess I don't quite fit all of the criteria but fit most of it. It was hard for the doctors to figure out what was/is wrong with me because I didn't show all the common and well known signs/symptoms.
My family doesn't understand what going on or how to help me. When I get my levels checked and they drop slightly I feel like I'm the only one worried about them dropping, according to the doctor and medical staff they are stabilizing but to me they seem extreamly low and I worry about it. My boyfriend wants to try and understand and be there for me but its hard for me to explain how scared I truly feel all the time. Hoping for support and tips on how to deal with the fact that I have aplastic anemia and how to try and go back to living a semi normal life of a young adult.

[saddaughter]

Hello everyone,
My loving, wonderful, kind hearted, young father is critical in the ICU right now. Back story: My dad never gets sick or goes to doctor, this is his first hospital stay. He started feeling not well 3 months ago and thought a bad sinus infection. Was put on antibiotics with no relief. Then he developed a swelling of his anal area and decided to go to ER.
ER tried to lance swelling and said no pus. His blood work showed low platelets(105), low hemoglobin (9.4) and high wbc (19).
They did a blood smear which showed blasts in his blood. He then had a bone marrow biopsy which showed <5% blasts but irregular shaped WBC and some large platelets.
Plan was to start outpatient tx for MDS once infection clears. PROBLEM now is that his WBC keep going up. His rectal swelling turned purple and the rectal doctor thought a pocket of pus hiding and turning necrotic. He rushed to the OR and they found that it was just cellulitis with hemmorrhagic swelling on top. THe wound tested for gram positive cocci which I believe he's already been on antibiotics for.
My concern is that his WBC are not working right and are we missing something. How can he start treating the MDS asap if he has an infection. WBC today 26, platelets 97,
hg 8.4. Fever. Feels ok though.
ANY INSIGHT PLEASE PLEASE TELL ME, MY FAMILY IS SRUGGLING SO MUCH:confused::confused::confused::confused::confused::confused:

[Neil Cuadra]

saddaughter,

MDS can't be treated or cured promptly. It's a longer term effort.

That's why the first goal is to stabilize and patient and reduce the immediate dangers from symptoms or other conditions. As they treat your father's infection, they may want to give him blood and platelet transfusions to deal with the low HGB and low platelets, or drugs that can increase these counts even through they don't fight the underlying cause. Infections produce a higher than normal white count, so you probably can't judge how a bone marrow problem is affecting his white cells, but you'll want to keep an eye on his white count as they get his infection under control.

You're doing the right thing by asking questions and learning what you can, even though forum members here are almost all patients and caregivers, not physicians. Many of us have had similar experiences and know what you're going through.

Don't let doctors brush off your questions. Make sure they explain what's going on, what treatments and tests they are using or recommending (and why), and what other choices there are, as you deal both with the immediate crisis and the longer-term treatment plan.

Feel free to start new forum threads here with the questions that come up, and to let us know how it goes.

[LesB]

Hi I'm a SAA / PNH patient diagnosed with SAA in 1994 (no determined cause) then diagnosed with PNH via flow cytometry test in 2008 following a 2nd and larger PE. I had a PE earlier in 1996 but PNH was HAM tested and not flow cytometry tested for till 2008 following the 2nd larger PE.Currently treated & controlled with Cyclosporine for the AA & Warfarin for the PNH. My condition is stable.

[Smiles]

Hi my name is Sue. Diagnosed 10 months ago with MDS. Presently I have not received any treatment and suffer with severe anemia. Presently I work a 4 day which means I sleep and work only. When I'm not working I have more energy to spend time to socialize with my family. I am realizing what quality of life means to me and I'm suprised what matters most. I too was thinking of going to Dr Perez and I appreciate the earlier post regarding this. I'm working with my chi, meditating, juicing and a few other things. Are they working? Who knows I'm just glad I can do something for myself than the alternatives.
I have been living the wait and see game. Which has presented many life lessons. I have researched the drugs blood transfusions and transplant along with the respective side effects and balancing my quality of life baffling. Perhaps med is the way to go for some but I'm not sold.
Oh no this was suppose to be my introduction?? One last thing ...any edmontonians here? Please let me know. I am trying to find the support group here and the Canadian branch of Mds association is well ....let's leave that.
Happy August and thanks for listening.
Sue

[Neil Cuadra]

Sue,

I'm sorry that anemia is limiting your life this way, but I'm glad to know that you are doing your best to take care of yourself, and that you are studying your options. Which kinds of treatment to consider or when to stick with "watch and wait" is ultimately a personal decision. Doctors can offer recommendations (for example, they may favor watch and wait in low risk cases and drug treatments in high risk cases), but anyone diagnosed with MDS owes it to themselves to learn about their treatment choices, and the tradeoffs involved, so they make the right decision for themselves.

Feel free to ask questions here. For example, many patients here have received blood and platelet transfusions, so if you are interested in their experiences they can share what they know about the pros and cons.

I know there are at least a few Marrowforums members in Edmonton, including NoreenH, Symon, Lamilu, djross, Chris A, and smarchesin, although only a couple of them have been active in the forums recently. Have you checked with the Aplastic Anemia & Myelodysplasia Association of Canada (http://www.aamac.ca) about finding other people in Edmonton?

[Meri T.]

I'm very new here. Every year I have my check-up, last year 2015 was fine, but this year, as of Saturday I found out that all my blood counts are very low.
WBC 2.8, RBC 3.46, Platelets 78.

I read David's story, and I think I won't be in the 10 year + gradually falling range, since it only took me a year to crash from WBC 7 down to 2.8

I had my first BMB on Monday, and the results will be next Monday.

However, I'm living in Tokyo at the moment, does anyone know of a support forum like this here?
Add to that my iron levels are quite high 173 (normal range 80-120) iron combine levels very low 136 (normal range 195-273). Is that something that goes with Pancytopenia? The doctors over here don't really explain much, and I'm so new to this. Would really appreciate some of your experiences.

I just want to say I'm so glad to find this forum and read about all your stories. It gives me hope that I am not alone.

[Banerism]

My name is Aamir.

Just found this site today and decided to join. I'm a survivor of Aplastic Anaemia, diagnosed in 2004 at age 11. I made a full recovery the following year after a successful bone marrow transplant and a brief struggle with GVHD. Eleven years later and I'm completely fine at the age of 23(except for having been diagnosed with glaucoma in 2014).

Thanks for creating and maintaining this wonderful forum.

[bailie]

Aamir, welcome to the forum! Congratulations on your successes. I am sure there can be others in the future who will want to hear your details of how you handled this disease. It is always a learning experience for everyone no matter their stage.

[Neil Cuadra]

Hi Aamir. Thanks for joining.

It's nice to hear a success story like yours and I hope you continue to stay in good health.

Can you tell us a bit more about your treatment experience? For example, who was your bone marrow donor? Which type of GVHD did you have, and how long did it last? Do they think the glaucoma is related to your treatment all those years ago?

During your treatment did you have to miss a lot of time at school, and how did that affect your education and friendships?

This type of information can be helpful to other people who face AA at a similar age, and to their parents.

[Ralph F]

Hello, I'm a new member, and I'm hoping to chat with veterans who served in Mannheim, Germany who feel they were exposed to toxic chemicals which have effected their lives years later. I served, and was stationed at Taylor Barracks from 1967-1970. I now have leukemia, and feel it is a result from my exposure to toxic chemicals.
I'm looking forward to hearing from you.

Thank you,
Ralph F

[bailie]

Welcome Ralph, you might have better luck catching someone with a similar situation if you scroll down on the "forums" page to "Insurance, Finances, Disability, Veterans Benefits". There are a few veterans our age who have posted there, including myself. I was in Vietnam about the same time you were in Germany.

Your exposure could have contributed to your leukemia. The difficult part of what you are asking is that you would really need to document your exposure. For me it was being able to say Vietnam-agent orange-stem cell transplant and acute myeloid leukemia in the same sentence.

Can you tell us more about your situation?

[Eve]

Just wanted to say Hi , I became a member today. I was searching web for some answers and hopefully help when I came across this forum which I found to be very informative and everyone really seemed eager to help each other which I just found to be fantastic , so here I am 😊 Im anemic and stay sooooo exhausted and doesn't take much to be out of breath feeling dizzy & lightheaded . I've been dealing with a lot of nausea and very sore bones & joints I sweat from my head profusely but stay so cold to the touch and very pale with dark circles on eyes. I've been seeing a hematologist for @ 2 months now and been given iron infusions for 6 weeks due to pills not helping . I'm concerned however that treatment wasn't enough due to my feeling worse & more fatigued now 😴I go back for follow up on Monday 1/30/17 for CBC diff , ferritin ,iron & iron binding Tibc etc! My labs on 11/7/16 & 11 /21/16 : WBC (9.2) 15.0 RBC 4.98 HGB (11.4 ) 12.5 MCV (77.1) 78.1 Mch (25.4) 25.1 RDW (15.8) 15.7 mpv (6.9) Mono# 0.9 ANC 11.5 iron sat % 9.7 B12 1027 I take b12 injections prob why b12 hi ... My # s aren't so bad But I feel horrible any suggestions could it be more than anemia ?? mDS? help sick and tired of being sick and tired 😕

[Neil Cuadra]

Hi Eve.

Has anyone in your family had health issues like yours? I'm asking because some forms of anemia are familial.

Also, have you been given a specific diagnosis?

[Eve]

Neil , Thanks for your response/help to the best of my knowledge no one else in the family has ever had similar issues or even close 😕 as far as dx : Anemia, unspecified I also have hormone growth def ( adrenal/ pituary problem) endocrine issues & nurological & muscular & gastric and emotional and more 😕 Literally seeing a neuro to a podiatrist and every specialist in between they tell me I'm a tough / unique case 😕 I feel like I'm being passed from specialist to specialist given meds for this & that and just continuing to feel worse and like no one understands !!! Hoping for real answers this Monday at Hematologist which of course I'm praying for good results too but an explanation also if that makes any sense 😊 .....!

[Neil Cuadra]

Eve,

It's no fun being a "unique case," because it means that the doctors have less information from other patient histories to rely on.

My wife was a unique case too. The one benefit was that it led her hematologist to review her case regularly with the hospital's entire hematology team, and we benefited from their combined experience.

I think it'll help to encourage the doctors who are treating related health issues to talk to each other. If you agree, I suggest that you make sure that they know that you favor the idea.

[Eve]

Neil, Yes I definitely Agree and will be talking to my hematologist and other specialists who seem to be on board thank the Lord!! Thanks again I go Mon to the Hematologist And I will be having a pill endoscopy on Wednesday so hopefully by end of next week or following week I'll have some answers ??..:confused:😜 Have a good weekend 😀

[triumphe64]

Neil, Yes I definitely Agree and will be talking to my hematologist and other specialists who seem to be on board thank the Lord!! Thanks again I go Mon to the Hematologist And I will be having a pill endoscopy on Wednesday so hopefully by end of next week or following week I'll have some answers ??..:confused:😜 Have a good weekend 😀

Have you had a bone marrow biopsy?

[catherinemus]

Thank you for the warm welcome, it helps to know you aren't alone, in fact others are facing more challenges than myself which makes me feel humble.
I was diagnosed with ITP in 2014 having just finished with radiation for a lumpectomy. (to date I am clear in my mammograms yay). Diagnosed July 2016 with Aplastic Anemia. Underwent IVIG, Rituxan, ATG Horse, Cyclosporine and Eltrombopag. Nothing worked, platelets have been less than 10 since June 2016, Neutrophils 0.4. Right now living on Cyclosporine and weekly transfusions. 3rd Bone Marrow Biopsy completed - awaiting results. Second one indicated empty bone marrow with no megakaryocytes which create platelets.

Dr. Richard Wells of Sunnybrook is sending me to the Transplant Team at Princess Margaret in Toronto - waiting for the call. Would appreciate hearing from anyone who has gone through a BMT using an external donor. I don't have enough stem cells for them to farm.

Thanks for listening.

[bailie]

Welcome to the forum. I had a stem cell transplant about 30 months ago. My stem cells were donated from a 20 year-old male from Germany. Be sure to ask as many questions as you need.

[Eve]

Have you had a bone marrow biopsy?

I've never had a bone marrow biopsy. Levels did come up after 6 iron infusions given (iv) Hemstologists wants me to follow up in 3 mos to re check levels.. I'm very glad iron levels are now in normal range ( saturation of iron still on lower end ) but The syptomps of the anemia have worsened along with the bone & miscle & joint pain , headaches etc ; maybe all of these things r due to my other conditions ..? Really at a loss... maybe capsule endorsed done will help too...?

[triumphe64]

Eve,
Have they tested your reticulocyte count?

[Eve]

Eve,
Have they tested your reticulocyte count?

I don't believe so triumphe64 , ???? You seem to really know your stuff 😊 Any advice is most welcome and much appreciated I won't be seeing my hematologist again until March ...

[triumphe64]

Both the Bone marrow biopsy result and retic count would indicate a bone marrow failure disease.

[Eve]

Both the Bone marrow biopsy result and retic count would indicate a bone marrow failure disease.

😳 I certainly hope that's not the case .... but definitely something to be discussed with doc !!! The iron infusions did help with bringing my iron levels up & in the normal range saturation level in lower end of normal range but Praise God levels r up!! Just wish I could say that I was feeling better and more energized 🤕🤒😷😴 body aches & bone / joint& muscle pin and aches along with headaches seemed to wanna linger 😢 Just not sure if other contributing gastro& neuro rheumatoid issues are all to blame or with having the anemia along with other questionable CBC counts there's more going on??? Thanks again triumphe64 😊👍

[Shelly]

Dear friends,
My 9 year old son has been diagnosed with Aplastic Anemia. As per the doctors, a Bone Marrow Transplant is the best option for him.(We are being suggested CMC Vellore as the best place in India for getting a BMT done). ATG response rate may not be good in India, where I am from. Can you please share anything that you consider useful for me and my little boy.
Many thanks.

[Neil Cuadra]

Shelly,

According to articles like this one (http://www.haematologica.org/content/99/12/1784), factors that favor a bone marrow transplant include severe aplastic anemia, age under 10, and a matched donor, particularly a matched sibling. The statistics show great success for transplants in these children.

ATG is nearly as successful, and may be recommended as first-line treatment for less severe aplastic anemia or when a donor isn't available. What leads you to say that the ATG response rate isn't good?

You might it useful to refer to Table 1 in this landmark article (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3418715/), which covers both adults and children.

[Rebecca K]

Just a note to say hello as a new member. My mother was diagnosed about a year ago with MDS. So our mission and goal like many others here is to find out as much as we can in order to fight this disorder and condition. It is not very easy to read between the lines with what medical information is available. It is almost as if you should have a degree in medicine to even know what you are reading. Current doctor is wanting to have her start on the Vidaza, however not sure that is the right decision. She has been on procrit and that has seemed to help white, red cell count. Any feed back on the Vidaza or similar drug therapy would be appreciated. Thanks....Steve

Steve: My doctor had me go on Vidaza prior to a SCT to lower my percentage of blasts because, according to her, this promotes better outcomes. After 4 rounds, my blasts did indeed reduce to below 5% and I went forward with the transplant. The hardest thing about Vidaza for me was my skin reaction at the site of injections-- very painful. But you can ask for IV injections instead. Best of luck. Rebecca K

[bailie]

Welcome Rebecca, I also had Vidaza prior to transplant. How is the transplant going for you?

[GoodDay5150]

Hi Jane August and welcome. There is a lot of great info and real world experiences here in respect to blood diseases. Many are from me!

Mario

[cary]

I just found out about this site and joined. I am a Viet Nam Vet 69-70 and was diagnosed with MDS in November 2017. I have been taking Vidazza (7 days at a time) since December and just finished my 4th month with 8 more to go.
I was not stationed anywhere near Agent Orange that I knew of so all this comes as a surprise to me.
cary epes

[Rarity]

Hi Cary,

I don't have anything to share regarding Vidaza and sorry you have this too. It most certainly is shocking to hear especially because it's something you haven't heard of. I was glad to find this site as well and find it very helpful when we first had the diagnosis and now. I'm sure you will learn a lot reading through this site.

Wishing you all the best and thank you for serving.

Rarity

[Leigh Clark]

Hi Cary,

If you would like to get connected with other veterans, contact AAMDSIF, help@aamds.org or call 800-747-2820 x140.

Best wishes to you.

Leigh

[Tereze]

I am newly-diagnosed with highest-risk MDS brought on by chemotherapy. Starting vidaza on Monday, but it doesn’t make much sense to me, as most of what I’ve read about vidaza suggests it is effective for a limited time, perhaps 2 years. At that time a transplant would be my only option. I’m 72. It seems to me it might be wiser to have the transplant as soon as possible.

I had pretty much made up my mind to ask my doctor about this... but I’ve just read details about the procedure, and it truly sounds... appalling. With ongoing risks; as if one is never really out of the woods. Yet without it I doubt I can live 2 years. I have a rich, lively life and a 3-year old granddaughter I want to see grow up! I keep returning to the thought that the transplant is really my only choice. I’m not ready to say, ‘ok, two more years, that’s it.’ And if I wait I’ll just be - older, and sicker!

But the transplant sounds - well, terrifying.

I’d be grateful to hear from folks who’ve had transplants, or anyone who wants to weigh in!

Thanks everyone...
Tereze

[Hopeful]

Hi Tereze,

I haven't had personal experience with Vidaza, but from what I have heard and seen, Vidaza can be an effective pre-treatment regimen for transplant. It also has been used successfully as part of some post-transplant regimens (for example, Robin Roberts who also had secondary MDS).

The one caution with Vidaza is that if you start it, you should be prepared to stick it out for at least 6 cycles before determining whether it has worked. If you stop sooner, it seems like things could go downhill faster.

Responders to Vidaza seem to have a pretty full life while it is working. Plus there is always the potential that new treatments/regimens will be discovered in the meantime - especially with the rapid evolvement of genomics.

Enjoy your granddaughter!

[Su H]

Hello!

I'm Su in Florida. I have been diagnosed with AA. Right now, the doctor is just watching the levels. They quit dropping, finally. My white blood count was 3.7 (4-10-range)at my last visit. Hemoglobin - 9.1(12-16-range). Platelets - 23(150-200-range). Doc indicates treatment, drugs, will likely begin in a couple of months.

I don't really understand! He said my bone marrow was functioning at 1%. Obviously, I don't feel good, but, I don't know what to think! The first doctor, the one who discovered this, was adamant that I start treatment right away. However, the transplant specialist I was sent to is taking a slower approach.
I have too much I want to do and learn! My family is raised and I live by myself. I'm very happy with my arrangement! Now, this!

I'll be reading other folks' posts. I just don't really know what to do or think about this. I've not ever been ill like this before.

Thank you!

[Hopeful]

Hello Su,

Welcome to the forum! You may want to start a brand new post to get more visibility to your questions.

Did you doctors do a BMB and many other tests to rule out other possible causes for your low counts?

If your ANC is normal and you are not transfusion dependent, most doctors will watch-and-wait for moderate AA. However, there have been many studies for SAA that show the time between diagnosis and treatment is absolutely critical for response. I don't think the same studies on the timeliness of treatment have been done for MAA, unfortunately.

If you first doctor is adamant about starting treatment right away, take note! If your immune system is attacking your marrow, you need to stop the attack quickly to prevent further damage.

Typically the transplant doctors are less interested in IST. So, if you are confused by the different doctor responses, get an urgent appointment with another non-transplant AA specialist.

Good luck!

[Su H]

Thank you, @Hopeful! I think I will post a new thread. Right now, I am so confused, like, discombobulated! I am freaked out - still!

Thank you for responding to my post, though! I have had two BMB's. I'll continue in a dedicated post.

[brien27]

I was diagnosed last year with Myelofibrosis and subsequently has a bone marrow transplant, from which I am recovering now. I am writing an ongoing journal on Medium.com detailing my experiences in the hospital and beyond.

They are, so far (free links):

https://medium.com/@brienlee27/bone-marrow-transplants-arent-fun-e4bd6615d4eb?source=friends_link&sk=448573fc60803a26c298188519f8fce2

https://medium.com/@brienlee27/deciding-whether-a-bone-marrow-transfer-was-worth-it-for-me-4d5a6738c07?source=friends_link&sk=8aa7ac670a6e1bc7d65b043dc77a1dd6

https://medium.com/@brienlee27/complications-the-story-of-my-heart-3a1cfb305c27?
source=friends_link&sk=34ea04f791b1d331b7c7766a4e4fd39c (https://medium.com/@brienlee27/complications-the-story-of-my-heart-3a1cfb305c27?source=friends_link&sk=34ea04f791b1d331b7c7766a4e4fd39c)

You may have to sign in with a new free account to Medium, and if you do, please subscribe to me (the author, @brienlee27)

Thank you!

[Neil Cuadra]

Thanks, Brien. Your blog is not only very readable and personal, but it has good information for others facing transplants.

Your description of the low microbial diet was wonderful. It reminds me of when my wife was on that diet and we learned how to be careful, and how to put up with a lot of canned food, which is naturally safe from the canning process. Even years later, back on a normal diet, we still have the habits we learned about food safety.

[Matthew42]

I wish you the best recovery, Brien. You are amazing!:). Your story is incredible.

My mother is 70 and has aplastic anemia. Her treatment has yet to work. If things don't improve by the end of summer (to get off blood transfusions), she is going to get a 10-day Campath infusion. If that fails, we can do rabbit-atg.

At any rate, her current hematologist says that she is too old for a bone marrow transplant, but I've read of people older than her who have had one with success.

Please take good care of yourself.

Love and peace.