Dad W/ Mds Started Immune Gammagloblin

[BURT]

My dad is 71 yrs old. In june 09 he was diagnosis with chemically induced MDS from having chemo and radiation treatment from stage 4 tonge cancer. In 02 he survived a triple A rupture,bowl resectioning, and his gull blatter was removed. He lost his spline in 90. We tried the revlimid for MDS, but he suffered a silent heart attack. They put a stent in his heart in sept 09. Went on vidaza but ended up in the hospital twice from it. He's now recieving platelets every 6 hours and red blood every twelve to twenty four hours. His last platelet count is at three. They gave him 1 dose of retuxin and he got alot worse. As in bleeding from the lungs, stomach and just basically down hill. He now is recieving immune gammaglobbin every 12 hours, and aminocaproic acid drip for 24 hours. Also on limnezodid premix every 12 hours. He also has lost his appetite and cannot eat, so therefore they are giving him albumin human drip, regular doses of magnesium, pottasium and other nutritions.

WE ARE DESPERATE FOR HELP!!!! ANYONE HAVE ANY SUGGESTIONS?

Thank you to anyone and everyone who has posted. This site has gaven us faith and hope. GOD BLESS

[Neil Cuadra]

Burt,

I'm very sorry to hear of the medical problems your dad has had and of the MDS diagnosis last year. He's been through the ringer and your family along with him.

Assuming your father lives near you, is he being treated at the Medical College of Wisconsin or at one of the major centers in Chicago? It sounds like his doctors are familiar with MDS, but still that's the very first question I have. Every MDS case is a little bit different and your father's history makes him all the more unique. Determining the best treatment choice is often a matter of balancing trade-offs because each medicine or procedure can introduce risks. So the expertise of the doctors is very important.

How long ago was the tongue cancer treatment?

Your father's other health problems and surgeries and the fact that it's chemically induced MDS aren't factors in his favor but he's got a few things going for him: expert doctors in your area, a lot more accumulated experience and knowledge about MDS than in years past, and especially your presence and attention. The fact that you are keeping track of his condition and treatments, and seeking information and advice, shows how much you are a part of his team. He's very lucky to have you doing this and I hope he realizes it and that it comforts him. Make sure you, your father, and/or others in your family are able to talk to his doctors regularly to ask and understand what they are doing and why.

It may be hard to be optimistic in a crisis but I think that whatever optimism you can muster and share will be worth its weight in gold.

[BURT]

Thankyou for your replie and conserns Neil. My father was treated for thoat cancer two years ago. I also am concerned were he is being treated,Its a local healthcenter named Aurora Health Care in Kenosha Wisconsin.They have been great but may not have the knowledge and latest treatments a big city like Chicago or Millwalkee [MDS] speacialists may have. He cannot keep his plattlet count up and is very weak.Thankyou Neil, I hope to here from you

[BURT]

The kids don't realise that the local hospital is affilaed with the Vince Lombardi cancer center and is part of the Aurora St. Lukes medical center of Milwaukee. We were told of his tongue cancer on feb 14, 2007. He started his treatments on March 26, 2007. He received 3 cycspla.tin treatments over 6 weeks with 40 treatments of radiation. After each chemo treatment he would spend 2 weeks in the hospital. He would get out in time for the next treatment. We were told that without the treatments he had only a year,but with the treatments he could live a long time. We felt like we didn't have a choice if we wanted him to be with us for longer then a year. (It's been 3). We were never told that MDS was possable sideaffect. I don't leave the hospital. I want to be here to be able to ask each dr. questions. He has a team of dr's. we have his MD. and the oncology-hematology, kidney, heart, g i, and the urology Dr's are here everyday starting at 6am and the last dr is here by 8pm. We are looking for any kind of help and info that we can get. The Dr's want us to sign up for hospice bridge program. I am afraid to.

[Neil Cuadra]

Burt,

Is your dad able to express his wishes regarding treatment? The doctors could be talking about a hospice bridge program because they don't think he's at the point of hospice care but have a concern for his quality of life. Full hospice care usually means that only supportive care is given, but hospice bridge programs can offer continued treatment outside of a noisy and uncomfortable hospital, if that's your family's preference. If you think the doctors are giving up on your dad, I'd ask them that directly. I found this Journal of Clinical Oncology article about bridge hospice care to be very informative. The article is 9 years old so the statistics may be out-of-date but I think it has useful descriptions and explanations.

You could seek a second opinion if you think it would be worthwhile, to confirm what you've been told, to identify any other options, or to give you more confidence in what's being done for your dad. In any case, if it comes down to a choice between aggressive treatment, less-aggressive treatment, and supportive care only, the decision is very personal and can't really be made by anyone but your family, in consultation with the doctors. I hope you have other family members around to share the decision-making burden.

Some suggestions:

If you haven't already done so, contact the Aplastic Anemia & MDS International Foundation to get information about MDS. They can link you to resources, send you publications about MDS, get you answers, and help in other ways.

Make sure that there's one physician in charge of your dad's overall care, someone who knows the concerns of each doctor on the team. Maybe it's your dad's primary MD or his oncologist-hematologist. The specialists should not be treating him independently and you should be able to talk to the doctor in charge without having to track down every specialist individually when they visit your dad or get new test results.

If you'd like to know more details about your dad's diagnosis and condition, ask the doctors for copies of his medical information, such as your dad's MDS subtype, IPSS score, daily blood counts, and other information that will let you better understand the doctors' basis for recommendations. If you want to learn more of the medical lingo you are hearing, other forum members can probably help. We're patients and caregivers but in helping ourselves we each learn to "talk the talk."

Don't forget to take a walk outside, ask other family members to help you keep an eye on your dad, or make appointments with doctors so you don't have to wait and wonder when they might come by. I know from experience that a caregiver can get so focused that he forgets to take a deep breath now and then and to get enough rest. Some patients even appreciate a break now and then from the almost-constant attention they get. Maintaining your own well-being will help your dad.

[BURT]

My father just finished 5 days of Ammune Globulin and steroids .They have givin him many units of plattlets also. His count was 78 yesterday,lastnight it was 61 , and today its at 31. His plattlets are still dopping like a rock. It does not look good . I dont think the doctors are going to do much more. Once again I thankyou for all your help. This forum and the people on here are awesome and reading others WAR STORIES,INFO,and HOPE have been very helpful,thankyou.