My father was diagnosed with mds today
 

Hello everyone, I am absolutely devastated, I don't even know what to do with myself, I wish I was even half the man my father is because of how strong he is. He was diagnosed with mds today and starts chemo on Monday. He has no symptoms really, they gave him a blood transfusion 2 weeks ago and has been feeling good, he is 55 and very athletic. I've been a wreck all day since I got home and he is in absolutely great spirits, I won't let him see me get emotional but I've been sitting at my house alone for 6 hours just wrecked and thinking what to do next. I've read stories of people living for decades with this condition and countless bad news articles as well, I'm just trying to find one people to talk to that can relate to this, I don't know anybody I can talk to but this forum that I found online

Pcebrerojr,

I too experienced the shock of having a loved one diagnosed with MDS. In my case, it was my wife. I wish nobody else ever had to go through it, and I'm sorry for your anguish. Take heart that your dad's athleticism gives him an advantage over most patients. He's actually young for an MDS patient, and that helps with the prognosis too.

Your father may be putting up a brave front for the family's benefit, or he may just be the kind of guy who feels confident he can beat this disease. Part of that may be because he's able to do something, namely beginning treatment.

If you're like me, feeling helpless compounds the fright of learning about such a serious diagnosis. So it's worth knowing that there is a lot you can do. Here are some actions you can take:

If you're both in the same city, be there for your father. Visit as much as you can. Even the most stoic patients are very likely to benefit from the family around them. Just being there is a great form of support, and a comfort to everyone involved. If you're not in the same area, stay in touch however you usually do: phone calls, videochats, text messages, etc.

Chances are that nobody in the family knew much about MDS before you got this terrible news. It's very important to find out more about this disease. Concentrate on understanding the basic problem with bone marrow and blood cells, and learning about the treatment choices. It's much less important to try to guess how he ended up with MDS; they usually can't tell.

Request the MDS information packet from the Aplastic Anemia & MDS International Foundation. You can do that here. Read about MDS here and here and here. It won't all soak in at first, but keep it for reference and you'll soon learn the basics. Then help explain MDS to other family members.

MDS is not a disease you inherit or can catch from someone else, so make sure that nobody gets the idea that they should stay away from your father "to be safe".

Make sure your father's doctor has plenty of experience with MDS. His MDS treatment shouldn't be directed by the family physician. If he's in Los Angeles like you are, there are great centers with MDS experience: UCLA, USC, Cedars-Sinai Medical Center, and the City of Hope.

Consider yourself to be part of your father's team. If you can go to appointments and treatments with him, and he doesn't mind, you'll both benefit. If he needs blood transfusions, consider rounding up some donors among friends and family.

Help your father prepare a list of questions for the doctor before appointments. Whoever goes to appointments with your father has the important role to take notes and to make sure the questions on the list are answered.

Somebody in the family should be the "spokesperson" who others can call for news updates. It can be the patient, but often it's a close family member who doesn't mind keeping everyone else up to date. That could be you.

Let other Marrowforums members help you, and keep us up to date on your father's (and your) progress.

Every family has its own dynamics, so I'm telling you tips that work for most people. Play it by ear, and don't be shy about asking for help and leaning on each other.

Hi Pcebrerojr,

I am very sorry to hear about your Dad.

Do you know what type of MDS he has? What is his bone marrow cellularity? Do you know what type of treatment he is starting on Monday?

Pcebrerojr,

So sorry to hear about your dad. Neil made a lot of good suggestions.

I am just 2 years older than your dad and was just diagnosed in April. I didn't have any symptoms either, I had just gone in to have a blood test done because I wanted to check my cholesterol levels when they found my white blood cell count was low. It was a shock to find out later that I had MDS.

I have found so many members of this forum to be knowledgeable and supportive.

Tracey

Pcebrerojr
 

Prayers for your dad & you. I was 59 when I was told I had MDS. I agree with Neil. You need a good Dr. that knows about MDS and it really helps if someone can go with him to Dr. appointments and take notes on all the information he will get and ask questions. This site will help a lot to get answers to any questions you have.

Thank you all for your kind word, I am still soaking all this in I believe that I will be the spokesperson for our family, I just need to gather up my strength. I don't have his exact numbers but I will be getting on top of that soon, I have to request all that info from my parents. Yesterday was the first day I met his doctor so that's when I started to get all the info but it's been just tuff and I'm trying to man up asap to take care of a this with him. Neil he has kaiser and doctor did mention city of hope, he actually gave him the option of whether he wanted chemo or just stay monitoring, but my father chose chemo and doctor agreed. Tracey I'm still learning about this but it's hard when there are so many negative things u can find online as well. Vicki thank you I am going to with him this Monday my mother and I usually go with him. Hopeful I don't know know any of that yet I'll update everyone as soon as I get it together. Thank you all my prayers are with all of you as well

And what freaked me out the most is the life expectancy but I understand that everyone is different. The doctor really just told me some people like for less or more that 5 years, and I read that online to. But with that said I've read of people living for years or decades with this thing. And that's what's to scary to me but I'm just sinking it in day 2 of finding out and he is in great spirits. He believes he's had it for years but just never was detected.

I'm sorry for the diagnosis. It feels like a kick in the stomach only worse. It is important to learn everything you can about the diagnosis. That will more accurately determine the prognosis. Some people do live for years with MDS, some only months. There are many different kinds of MDS. It just depends on his numbers. You will find that numbers take on a whole new significance for the family.

We have Kaiser too and I am getting my Stem Cell transplant at City of Hope in about 3 weeks. My MDS had advanced rapidly from nothing in my first bone marrow biopsy to intermediate in the second, so I am having the transplant done. Yes, go with your father to his appt. It is very difficult to remember everything the dr. says. My husband has always gone with me to the hematologist appts and I am always glad he did.

I am so sorry to hear of the diagnosis for your dad. I hope that all goes well with his treatments beginning!! I know it is a blow to you and your family. When they show you the "facts" and the prognosis of someone with this disease It is a punch in the gut!! I also have MDS/refractory anemia w/ ringed sideroblasts. I am so far in the "good" category. I have only known about this for 2 1/2 months so it's all very new to me too and I am lucky that at this point I only have the RBCs to deal with. But it has hit me like a sledgehammer!! I have had three transfusions in 2 1/2 months. I have a lot of questions too and hope that by being on this forum that I can talk to others who can give advice and encouragement. My doctor started me on Aranesp injections and I will receive my 4th on the 28th of this month. My RBCs continue to drop though even with the injections. He told me that we should know in 12 weeks if the injections are working, so we will know perhaps on the 28th. He has suggested that we might try Vidaza next and then we will be looking at the Stem cell transplant if that doesn't work or maybe even if it does help. Not sure about that yet. Will pray for your dad that he will respond well to whatever treatment they decide to start him on, and for you, as you help him and your mom deal with all the information.

Welcome to the MDS community. Please attend the medical appointment with your father as traceyn11 recommended. I also suggest recording the conversation so you can listen later. Doctors deliver bad news multiple times daily and they aren't emotionally invested. Key information will be communicated quickly and you may miss it. The situation may sound worse the first time you hear it. The recording allows you to revisit the conversation and pickup the facts.

This is a complex disease with 1-2 known potential cures, Stem Cell Transplant (SCT) and Chemotherapy. Both involve options are high risk.

Good suggestions Steve. I believe the only "cure" is from the stem cell transplant. The chemotherapy can help prolong life, but I haven't heard it being a cure.

Thank you all for your kinds words, so my Dad is still receiving care at kaiser this week he received dacogen for an hour each day. They put him on another medication tomorrow called neupogen for 7 days starting tomorrow. I continue to pray for everyone in this forum

He is also a high risk patient but he's in great spirits

Glad to hear he is in good spirits! I still receive my care at Kaiser. I had my 2 rounds of Vidaza at Kaiser in Irvine and all my drs. are there too. I have only seen my transplant dr. at the City of Hope twice. He is actually affiliated with Kaiser, but Kaiser does their transplants at City of Hope. I will have my pre transplant chemo done in house at City of Hope before my transplant and will stay at City of Hope until I am released, then go back there for follow up appts.

Prayers are with you all will go well!