New to Forum

[josey63]

First of all I am really glad I found this forum. Diagnosed with MDS in 2006, doctors feel it is the result of me having AA as a teenager, I am a grandmother now. My biggest problem is a low platlet count 15, which makes me unable to take most of the new drugs out for MDS. I am on Danazol which is suppo0se to help my platlet, hasn't yet and procrit weekly. I get transfusions about every 3 months and platlets if I need any type of surgery like placing the port I have for blood draws and transfusions. Also I am on antidepressents though I doubt I am alone on that. I have 2 sons, 2 grandsons and a sister, but poor family support. So I guess I am looking for some here with people who understan what I am going through. Josey

[Mike Conlon]

Hi Josie 63: What a shock to go 49 yrs. and end up with MDS. There just seems to be an infinite variety of MDS and I am sure no expert. I am sure there is a good reason not to start you on one of the new drugs. However, if you are looking for a second opinion you could try Oregon Cancer Center, Oregon Health & Science University in Portland which is 83 miles from Corvallis. They are rated as an MDS Center of Excellence. My wife has been with me every step and every visit, treatment, bad day, etc. since the beginning. I am humbled by her devotion. Depression. I began seeing a pyschologist in about the third month, in the fifth month we had a devastating family tragedy. I saw her(psy) on a regular basis for about a year. It helps to have an outside party to talk to. I try and evaluate how much good this did me and I know it was some help but the main thing I come back to is the fact she had great legs. Oh well at my age we are allowed to wander. This forum is a great place to get ideas and converse with people with the same problems. Hold firm, ask questions without end and don't take easy answers. Get the information you deserve.

[josey63]

Thanks for the reply Mike, when I had AA they knew very little about it and I had experimental treatment. After a few years most of my counts were in the low normal range except for my platlet count which has never been over 50, so I have just been real careful , no skydiving, most of my life. I have been told I was lucky to be able to have children, most AA patients can't. The reason I can't take most of the MDS meds is due to the fact that they decrease your platlet count and since mine is only 10 now they can't take the risk, if they get those up I could try some of the MDS drugs. I do have a perfect match in my sister for a stem cell transplant, they use a mini-transplant on someone my age. Unfortunately, I am on Medicare and can't afford to pay my share of cost for a transplant, and even though my sister is retired she will not be my caregiver and I have no one who will be. So a transplant is out of the question. From all that I have read the survival rate for more than 1 year for someone my age is about 5%. I do have a doctor at OHSU who is following me along with my doctor here. I just keep positive that the drug research will come up with a new drug. Again thanks for the reply, my family takes all of this lightly, they won't even get flu shots. Josey63

[Ruth Cuadra]

Hi, Josey63.

Welcome to Marrowforums. We're glad you found us, but, of course, sorry you have to be here. I know people who've had aplastic anemia or MDS for many, many years--but no one with a diagnosis as old as your original one. Do you remember any of the details of the treatment you had back in 1957?

If you haven't already done so, you should contact the Aplastic Anemia & MDS International Foundation and ask for their basic information packet about MDS. It will help bring you up to date about the subtypes of MDS, risk levels and prognosis, treatment options, clinical trials, and dealing with emotional issues.

Please be very careful about interpreting any survival statistics you may read on the Internet or elsewhere. Every MDS is patient is different. You are not the same as any person in any of the studies where those statistics are reported. Since MDS is a rare disease, studies are often done with a small number of patients or over a long period of time. The treatments that are available today are much better than they were only 2 or 3 years ago, which makes older statistics even less meaningful. Don't believe anyone who says you have only 5% chance of surviving one year. It's just not true. Good supportive care and an appropriate treatment plan can help ensure your quality of life for many years to come.

Regards,
Ruth

[josey63]

Hi Ruth,

Thank you for the information about the Aplastic Anemia & MDS Foundation, I requested information from them today and am looking forward to reading it. I realized after posting yesterday that I sounded like a negative, whinny, self pitying person. I am not really that way, have just had a bad week with my family. I have talked via email with several people who have had stem cell transplants and are doing real well, so I know the statistics especially on older people with mini-transplants are still being formed. When I had the Aplastic Anemia they treated me with mega doses of prednisone and testosterone and weekly transfusions of whole blood right out of the person in the next room. The mega doses of steroids were suppose to shock my system into producing blood again. After 3 years of that my counts except for my platlets were in the low normal range and that was considered as good as it was going to ever get. I had to learn to live with a low platlet count and be careful with what I did. Up until all my counts started dropping and I was diagnosed with MDS I had only needed platlet transfusions when I had a surgery. I am sure the information I am going to get will help me understand what MDS is all about. Thanks agian for the information, and I hope everyone in this forum will forgive me for being so negative in my last post. Joanne

[Mike Conlon]

Hi Josey63: I don't think you were whiny or self pitying. This is tough stuff to deal with. Go to the link for Asplastic Anemia & MDS International Foundation which Ruth gave you. In the middle of the page hit the link to Online Learning Center then on left, search by topic and then hit MDS. Take the third one down, MDS: current thinking, very good. A couple of the others also looked good. Along with the booklet I think these videos will answer a lot of your questions. Keep positive and know that each evening when I go to bed I'll remember you in my prayers.

[josey63]

Thank you Mike, I will do as you suggested, after all knowledge is power. Joanne

[Vernette]

Hi Josey63, Mike, Ruth . . . . and anyone else out there with any Bone Marrow Disease - just want you all to know that you are all on my prayer list. Probably won't help you much - but know SOMEBODY out here thinks of you every day with very warm regards. Vernette (MDS)

[helen c.]

when my husband was dx. jan.08 i thought it was a death sentance and was very depressed. but i started reading everything i could find about mds and found that there all kinds of mds and a lot of the information is old news. there are a lot of new treatments and this is the best place for information if u ask a question they will answer and if they dont know they will finds out for you. william is my husbands name we have been married 47 years i fully expect to celebrate my 50th anniversary and many more with him. hang in there you are not alone helen

[Mike Conlon]

Vernette: I disagree with your thought that being on your prayer list might not count for much. Prayer helps in many ways. A person of faith finds that prayer brings a sense of calm in troubled times. Prayer has helped me many times. To be dx with MDS at 69 is quite daunting for anyone. I prayed for help, and I prayed not to be seperated from my love of almost 50 years. I am now in total remission. Coincidence? Thank you for your thoughts and prayers.

[Mike Conlon]

We had the same reactions which you experienced when diagnosed. The more I visit the forum the more convinced I become that there is a great deal of help available. I am particularly hopeful now that there is a great deal of effort being directed toward combining drugs such as Dacogen with other drugs in an effort to achieve even better outcomes. When is your 50th? Possibly we can celebrate together.

[josey63]

I'm with Mike, I appreciate all the prayers and good wishes I can get. I learned this week that Medicare has cut back on how much they pay on Procrit, so now I have to pay a % on each shot. I get about 2 shots a month which I am now not going to be able to pay for. So I guess I will just have to wait until my count gets down low enough for a transfusion, my doctor lets me decide when I want one. I got into an arguement with my daughter in law about whether or not you can donate blood to a particular individual, she says no, I say yes. Does anyone out there know. She took it as an affront when I asked her to donate blood to me. As I have said before I do not have good family support, she gives blood to the Red Cross every month , so its not that she is against giving blood. How do I find out more about this? Joanne

[Mike Conlon]

Hi Joanne: First off I believe you can have blood donated specifically for your use. I am sure other more current opinions will surface. Here I am watching Pitt beat Villanova and you are confirming my worst fears when you say you won't be able to afford your procrit because of a new co-pay. I am an advance worrier, and ever since I heard about the administration wanting to reform Medicare I have started to worry about the burden which will be dumped on the patient. It would appear the changes have already begun in your case. On Monday I will begin my next week of treatment. On Friday I will recieve a shot of Neulasta. The shot is $6,893. Medicare pays $2,174.15 and Hillman eats the rest. If I have a 5 or 10% co-pay this will be a gigantic hit to our budget. This is particularly true if there are other changes in the payment scale. What if I have to pay a % on the Dacogen which is $3,150 per day for 5 days every 8 weeks. This could turn out to be a case where the wealthiest get the best care and everyone else will have to decide what part of their treatment they will do without. Definitely something to be concerned about.

[Margie]

Hi Joanne,
The blood bank that supplies my blood says that blood can be donated to a specified person; however there are some stipulations. You can find out the name and probably the telephone number for your blood bank from whoever gives your transfusions. Someone at the blood bank can answer your question with specifics for your situation.

MDS for 6 years. Now transfusion dependent. Low counts in all three lines. Age 69

[Neil Cuadra]

Blood donations for a particular patient are called directed donations. They differ from regular blood donations in two ways:

1. The blood goes to the patient you specify if possible. If they end up not needing it during some number of subsequent weeks, or if your blood type and their blood types turn out not to match, the blood will be given to someone else rather than go to waste.
   
   
2. You can make make directed donations more frequently than you otherwise could, by special arrangement. The normal interval for blood donations is 56 days, but with approval of the doctors, and sometimes with a physical exam, you can donate more often if the donation is directed.

Both of these policies may differ from one blood donation center to the next, so you do want to check ahead of time, as Margie says.

When Ruth was undergoing her transplant, her brother organized a blood and platelet drive and 34 friends and relatives made directed donations of blood or platelets. 15 of the units eventually went to Ruth, and the remaining 19 went to other patients who needed them.

[josey63]

Hi Mike, Like you I am a worrier, since I am finacially challenged, and in looking at the Medicare &You booklet for 2009 there seems to be a percentage coinsurance on cancer drugs and even if given in the doctors office, I am going to call Medicare and try to figure this out. I have Medicare and a Mediare Supplement insurance that includes Medicare D for drugs, hopefully any changes will not affect your treatment or others with limited incomes. And thanks to everyone who confirmed my opinion on giving blood to a specific person, I thought you were able to, will contact local blood bank to find out how. Take care Joanne

[Donna E]

Originally Posted by josey63

First of all I am really glad I found this forum. Diagnosed with MDS in 2006, doctors feel it is the result of me having AA as a teenager, I am a grandmother now. My biggest problem is a low platlet count 15, which makes me unable to take most of the new drugs out for MDS. I am on Danazol which is suppo0se to help my platlet, hasn't yet and procrit weekly. I get transfusions about every 3 months and platlets if I need any type of surgery like placing the port I have for blood draws and transfusions. Also I am on antidepressents though I doubt I am alone on that. I have 2 sons, 2 grandsons and a sister, but poor family support. So I guess I am looking for some here with people who understan what I am going through. Josey

Dear Josey,
My father has MDS and has been fighting for so many years. He is very fortunate that he has my mom. I was just there today and realized I need to help her at least on Sundays as she has so much to do. Do your sons or sister live close by? I will pray that your family comes to your aide. I know what courage it takes for MDS patients to live with this illness and I hope that you gain strength from this forum. I have. My Dad took Procrit and Neupogen for years to treat MDS. Hold onto hope and know that there are people out here who care . . .
Love,
Donna

[Chirley]

Hi, I wouldn't worry too much about the insurance thing at the moment. They might do what we do here in Australia. All public hospital treatment is free with free inpatient medication. There is a co payment for discharge medication but it is only nominal.

I have private insurance as well as the public insurance (compulsory for all tax payers and taken out of our pay before we receive it, it's only 1.5%) With the private insurance I get admission to a private hospital with no extra payments, all my doctors fees paid for and all in hospital medications. There is a co payment for discharge and outpatient medications but the government pays for most of it and the insurance kicks in with another portion. There is usually a charge for things like xrays and scans but again the government and the insurance pay for the vast majority of it.

If there is a large out of pocket expense for the year, the government has a safety net. If you have to pay more than $1,500 (I think) of your own money out in a year on medical expenses, the government will pay the rest of the cost for the rest of the year.

We don't appear to have the problems with insurance companies like you do. I have never heard of an insurance company refusing to pay for certain tests or medications. If the doctor thinks they're necessary, then, they are covered.

Yes, we are a high tax country but we do get value for that money, in my opinion. It means that street kids/adults get the best medical treatment available at no cost and if the director of a large company chooses to also use that same public hospital, then, it's free for them too. You can't get fairer than that. On the other hand, if you earn more money and can afford to have private insurance, it's something you should do to support society.

Of course the private hospitals are a bit more upmarket and offer things like wine with dinner and a better menu and food. If you need non urgent surgery, you can get it quicker in a private hospital but emergency treatment is probably a lot better in a public hospital due to the massive government funding and provision of state of the art technology and equipment.

Most people who require emergency admission, go to the public hospital ED, are assessed, investigated, diagnosed and then, if they have private insurance are transferred to a private hospital by private car or ambulance, if that's what they choose to do. A lot of people with private insurance, choose to be treated in the public hospital as a private patient, which means they have the right to choose their own doctor but everything else is the same as the public patients.

Our system has it's faults and most people complain about it all the time, but, I don't think they know how well off we are. State of the art medical treatment and free or almost free, and available to everyone.

Pardon the length of my ramble, but, someone needs to defend the way our health care system works and I don't think it can be done much fairer than they way we are doing it now.

I'm hoping your new president can make your health system more accessible for the people who need it most. It sounds very expensive.

Chirley

I forgot to mention, if you see a doctor in his office, the government pays for all or some of the doctors visit, depending on how much the doctor charges and if you are on a government pension. A lot of doctors don't charge anything to the patient, they send the account to the goverment and accept what the government gives back to them. This happens for almost all pensioners and for a lot of other ordinary working people.

[josey63]

Chirley, it sounds like you have a great health care system in Australia, where they really take care of their people. Wish we had that here. I have already received a bill for a portion of my Epogen shot, it was $146.00 and there are still 3 more I havn't received a bill for yet.
Donna, my son lives in the same town I do, my sister lives 1 and 1/2 hours from me and she is retired. I keep thinking maybe they are not taking this seriously which is why they are not supportive, hate to think what has to happen to make them take it seriously.
Everyone with MDS, there is a great lecture on the AAMDSIF site under online learning center by Dr. Mikkael Sekeres titled MDS current thinking on disease, diagnosis, and treatment that really helps to explain MDS. I found it very informative, I even printed a copy to take to my doctors with me so I could remember the questions I wanted to ask him. Check it out. Joanne