The will to live.. when you have MDS

[txnmomma]

HI. I posted a while back regarding my father. He is 57 and was dx’ed with MDS a few yrs ago. To make a long story short, he is in ICU right now b/c of an ear infection that turned to mastoiditis. He has has DVT’s so he is coumadin. My mother talked to my husband tonight while I was with my father in the ER. She told his husband. My father is at times wants to die and wants to sleep the day and night away with pain meds just to not deal with the pain and the symptoms of MDS.

He has a host of other medical problems. Degenerative discs in the back, DVT,etc.. so he is always on pain meds for something and right now is just “tired” of it all.

My family is a close knit family. I dont know what to do about my father. I dont know to help him change his thinking and get on top of the problem instead of letting the problem control him. I want him to get proactive with this disease. I myself cant find a cure, but I sure as heck will/can do everything I need to do to help him and others fight this disease. I dont want to see him “waste away” persay. But I dont know what to do.

I thought along with my mother and husband, that maybe he needs to find a hobby or do something to keep his mind off of the problems and his health. Something to help him mentally.

I am not one to come out and say thing openly, to a forum of strangers, but I guess basically, I need support in order to support him. I need some ideas on what to do. I need to somehow change his thinking so he can have the WANT and the WILL and the DESIRE to live. I know of many many people with MDS who have lived and are living long yrs and I see people that dont let MDS get them down.

HELP!!

thank you for letting me “air” out my feelings.

[Kathryn]

Wendy, I just sent you a note….

Big hugs to you,

Kathryn

[jfensterer]

Wendy-
My Mom has had MDS since March of 2005. She is a non-responder to Revlimed & we are currently looking into options other than Exjade to lower her iron & another med to get the bone marrow working better. I really never write on this, except to get info.

But, I do understand how you feel, I wake up every morning wondering what the day will hold for my Mom. I love her more than I am able to show & I wish I could take this dreadful disease away from her. My prayers are with you & I understand how you feel.
God Bless

[gemloyear]

Hi Wendy, I’m so sorry to hear about your Dad. A strange thing happened to me yesterday,I was going thru some old PM’s and came across one from your Dad thanking me for some advice that I gave him way back in Jul.2005. This made me think that we had not heard from you in awhile and that I should contact you to see how your Dad is. Did he take disability as he mentioned? If you check page #28 you will see that everyone advised him to hang in there and continue doing what he loved.After he kicks that infection in the butt perhaps he could go back to doing something in his field. Is there a support group at the hospital or in the oncology dept. that he could participate in? There is also a need for people to help with children’s support groups. He said he loved his work so that might be just the thing for him, in reaching out to others he would be helping himself.
I realize ear infections are one of the most painful there are, hopefully the Dr. will be able to clear it up soon.
It’s not easy to keep their hopes and spirits up,I pray that you will find a way.
God Bless,Ellie

[pigduck]

Hello Wendy… we share the same name and our dad is also roughly the same age … of course yours is younger than mine a year…

I don’t know what advice I can offer… to be honest, my dad can be quite negative … in fact last week he said he won’t be able to go through with the chemo… which devastated us obviously to hear such words… but this week when the results came back and my dad was dx-ed with AML, sure he was upset the day he found out but the next day he seemed at peace and prepared and I’m sure he’s frightened but you gotta do what you gotta do to live…

As for my dad, he’s also quite stubborn… so i’m sure in the coming weeks a lot more emotions will be seen but right now, we’re all trying to be positive and realistic too… which i think is a good thing for us…

Anyway, as for activities to keep him busy, if he’s so down now it’ll be difficult to get him to do anything… I think you gotta be upbeat around him – show him you love him and he matters the world to you and your family… once he sees hope there… it might help… and try not to show you’re upset that he’s upset… it’s worse… hahaha…

maybe you can play board games with him… watch movies together…

I’ll be thinking and praying for … hope to hear good news…

[Caroline]

Hi Wendy.

My Dad gets down in the dumps sometimes too. He takes on an ‘I don’t care’ attitude. We find that when he is alone at home with Mom for days at a time, he eats less and less, goes out less and generally lays down alot. Mom does everything she can to get him interested in eating and doing things but she has little luck. So, my family drops in sporadically alot…usually at mealtime. Sometimes all 5 of us storm in. Sometimes only 1 or 2 of us. It varies. I know that it is a bit of a pain in the neck for them to get company at mealtime or coffee break time but it never fails… when one of us is there at the table with Dad, he goes back for seconds…and sometimes even thirds. My husband pointed it out to him once and Dad said that since he is busy talking about new things with us, he feels hungrier and doesn’t concentrate so much on the full tummy that the disease has given him since he got sick 4 years ago.

He goes for frequent walks and we live a few blocks away from him. Quite often he stops by here to sit and rest a bit before he heads back down the hill. I always have things that he enjoys eating baked and put in the freezer. As soon as he drops by, I take something out and put it in the microwave and make coffee. He always leaves here very jovial and ready to fight some more. In our case, Dad loves the extra company while eating to break up his monotony.

We also got him to go back to his bowling league. He bowls once a week and comes home so tired that he has to spend the rest of the day laying down. But, it builds up his morale and he gets to see familiar faces and talk to people.

We tried to get him to join Tai-Chi at the Senior’s Centre but he drew the line there. So, Mom and I go instead and give him a lesson when we get home. I am 20 years younger than the youngest person in our class but it is fun. He has fun making fun of us.

Right now we are looking to sell both houses and buy a small farm. That’ll keep him busy helping us out with light chores. We can keep him busy and he’ll always have company. I’m sure if he knows how much we NEED his help, he will continue trying to fight.

Hope this helps.

Blessings,

Caroline

[Neil]

Have been reading the messges on this thread and have a couple thoughts to offer.

There is a pretty wide difference in perspective between the outlook of a patient and a caregiver. Let me provide my perspective as a patient and hopefully other patients will jump in and fill the gaps I have left.

It is pretty difficult during the first few months after an MDS DX. A patient is pretty shaken, primarily because of not knowing anything about this disease and their doc usually provides a fairly gloomy prognosis (particularly if that doc is not well educated in MDS).

It is extremely important the patient is treated by a doc experienced in treating MDS patients. Particularly the classification the patient has!
It is also important that the doc explains the significance of the risk level involved. There is a huge difference between those of us with RA and RARS versus those with the RAEB types. There is also a wide variation between those with low risk RCMD and high risk RCMD. There is even a good prognosis with RAEB patients who have been able to keep their blasts stable or better yet lower them.

As time passes and the patient learns more and more about his/her particular situation, they tend to become more comfortable with their future and with the possibilities of a successful treatment. Again this is where an experienced doc enters the picture. Some of us will respond to growth factors, Procrit, Aranesp, Neupogen, Neulasta etc, But they should know about the purpose of the drug and the likelihood of a response. Those with low red counts may have to rely upon TX. There are many out there who have survived for many years on TX and lead productive lives.

The other newer drugs ( Revlimid,Dacogen) will help many others. There are more drugs on the horizon that will likely help even more.

BMTs and SCTs particularly those using cord blood are getting better and better responses. Gene therapy will probably provde the answer at some time in the future.

There are some distinct possibilities that drugs may help a number of us. BUT drugs are not always the answer. Many of us can get by with no treatment at all for a period of time. Why take a drug that you know is going to make you feel worse than you do now? As a rule growth factors do not have side effects if taken properly but sometimes patients start on them prematurely.

Listen to your docs. Most of us become frightened and want to jump into a program that has more downsides than upsides AT THIS TIME. There may be a time in the future for a more aggressive treatment.

Keep in touch with the patients primary doc. They should have periodic exams to make sure the effects of the MDS are not having an effect on other parts of the body, particularly during the colder months. Have a annual eye exam. Be pro-active about dental care. Keep your teeth/gums healthy. Don’t let dental problems develop.

Keep the patient as active as possible! Get them involved in as many activities as possible. Some sports such as bowling, golf,basic exercise, coaching kids all keep one active and productive. Volunteer work at Senior Community Centers is a good way to pass ones time productively.
A little over a year ago I became concerned about how Medicare Part D was going to impact my situation. Figured I had to learn more aboput it. I went to classes on health insurance issues and how they impact seniors and got certified as a Health Insurance Counselor for seniors. Keeps me pretty busy.

I took up Qi-Gong. This really helps my mental attitude. Get as much exercise as I can tolerate.
Also have a group of vitamins and supplements that seem to support my particular situation. Took many supplements over the years that did not help, but that is not to say they might not help others. Its a trial and error situation that reguires frequent CBCs to know whst is happening.

A patient needs frequent CBCs to be aware of any trends that may be developing. I chart my counts on an Excel spreadsheet and then graph them. Really easy to spot a trend and respond to it. I have them charted back to 1999. And then set up another chart to compare my counts for June of each year. Some pretty revealing info.
It might not be convenient to travel all the way to your doc for a CBC every other week, but your doc can order a CBC at a lab that may be close by. That lab provides you with the results and faxes them on to your doc. I found a lab about 10 minutes away that did this for a extended time, till I went on Procrit. It helped me develop an understanding of my situation and was a big help in preparing me for what is coming next.

Reading all I could find about MDS is another means of helping one deal with the disease. Keeping up with current advancements and current thinking on how to best keep my cells under control has made it much easier to live with this disease.

Are there scary events? You bet, but knowledge of your particular circumstances makes it easier to deal with. I have had some bleeding episodes that might have developed into a problem, but a bit of calm and practcal treatment avoided a severe issue. My counts have taken some strange dips that tend to frighten one, but there were no symptoms accompanying them. A bit of watchful waitng paid off when they went bact to their “normal” levels the next time.

There is quite a bit one can do to become as comfortable as possible with a life with MDS.
Make sure you have an experienced doc. Get close to your doc and listen to what he/she has to say. Ask questions! Educate yourself on your class of MDS and keep up to date on all of the treatment advancements.

The AA/MDS International Foundation has a Conference every year where patients and docs get togeather. The docs speak on the newest thoughts on various aspects of the disease and answer questions.Patients have the opportunity to meet and exchange experiences, thoughts and to develop some great friendships. It is well worth while attending a few of them.

Think about it.

[SLStrout]

All I can say, Neil, is “wow.” What an informative and beautiful essay.

[J.claire]

Dear Neil, You have summed it all up perfectly. I really can’t presume to add to the knowledge you have with all the years you have dealt with mds, but I thought of two things: One is, to stay informed you can go to google and sign up for a daily google alert. I put the word “myelodysplastic” in it and any time that word appears in the news I get an email about it. Most of them I just delete, but I like it. My second thing: try to get outside and breathe fresh air and let the sun shine on you (if available) once a day. It was -13 degrees this morning and it still felt good. So that’s my two cents. Thanks again, Neil. I’m going to print out what you said and tape it to my kitchen cabinets.

[campbell]

Neil……….. Your reply was great. I am going to print and give to my husband. Thanks, Campbell

[Alice S]

Neil, thanks that is exactly what we went through since Dec 2004. My mom is now perhaps even healthier than before the onset of the MDS. She believes that she will live a long time and stay healthy and that she will do it as naturally as possible – and that is exactly what she is doing.
She started Eprex (procrit) in November, her counts fell badly and she felt awful but she hung in there and added CoQ10 and Goji berries to her supplemnts – and she does not take buckets full, just B6 and B12 (she produces none) and some multivitamins and now her white and platelet count rose very slightly, but they rose by themselves for the first time, the red count went down but not as much as it usually would have. So with the docs approval she is increasing the Q10 and Goji berry supplemets and continuing with the Eprex. She has also decided against Chemo and a BMT as her chances of survival are dismal. BUT she feels better and on Tuesday 23/1 she went for a blood transfusion straight from her garden,which she was pottering around in since 6H30!
Thanks to everyone else around here tooooo!
Alice

[txnmomma]

Thank you everyone who responded!! It has surely HELPED ALOT!!! More than you all think.

My father was in the hosp over the weekend. From last wednesday til today. He was taken to the ER and then admitted to ICU. He had a severe ear infection that lead to mastoiditis [bone infection behind the ear]. On top of that, he had a head injury. He banged his head really hard in the bathroom, thus causing a internal bleeding on the brain. He knew enough to know that projectile vomiting after a head injury can be potentially dangerous. He has DVT’s and is on coumadin.

So.. on top of the ear/bone infection and his head injury, he wasnt doing good at all last week. The head injury caused him to have a light stroke. He is doing much better today and the bone infection around the ear is better. The bleeding on the his brain has stopped and the fluid from the head trauma is decreasing. I was a worried little basket case thru the weekend.

Thank you ALL for the kinds words and support. It has definitely help and showed my another view point for a being a care-giver.

Neil, what you posted was well said. Something to think about from your point of view. THANK YOU VERY MUCH!

I think back to when I posted here more often, I think I need to continue. The support is just amazing and its something I miss.

Gotta go check on my kiddos right now.. More later!!

[Ani]

Hi There,

Now I realise this will sound “dumb”….I would like to email Neil’s reply to a friend whose husband has just been diagnosed with MDS but am uncertain just how to go about it, I have
Windows 98 and would appreciate some advice, or even how to print just his reply. As I say, dumb!!
Thanks a lot,
Ani

[Neil]

Hi Ani,
Highlight the piece you wish to forward. Assuming you have Internet explorer, click on file, click on send, select send by emai and enter the address and click send; Or copy the selection to a WORD file and send it from there.

[Stephanie]

Hello Wendy, Your father is fairly young at 57 to have MDS. He is stil young enough to have hobbies, desires, dreams. I am a young 40 and have had MDS since 2000. Neil gave some great advice, I spent approx. 200 days out of the 1st 2 yrs diagnosed with MDS on my back attached to a “charlie pole” in a hospital. It is severly depressing, the entire process of it all. Neil hit it on the head when he spoke of an experienced dr. This is key. And one that will talk to you! I had the hardest time, though I was going to the BEST Cancer Center in the country my Dr. would not inform me of what was going on! So I requested a new dr. They told me they all worked as a team and I could not have a new dr. However, the dr. in the transplantation department is completely the opposite and fills me in on everything! (tho I have no donor match found to date) I also have since complained about my physican so things are better there. But this is a key factor! Secondly, I decided I was doing myself, husband, children or the Kingdom of God absolutely NO good laying in bed every day! I also have ruptured discs in my back (I was going in for back surgery when I found out my platlets were 11,000+ other stuff) So I have since pulled myself up by the boot straps and re-opened my retail flooring store (which I had to close when diagnosed) from 1-2003 to the close of books 06′ we have grown to a muti million dollar corporation!
It has absolutely nothing to do with me! I am here to do work unto God! This is what your father needs to realize. We are here but for a fleeting moment in time. It seems as though he has just gotten caught up in the day to day affairs of getting medical treatment. What I did is; I only go to MD Anderson hospital when I absolutely have to for appointments. I run down to my local filling station-Northwest Cancer Center for my blood transfusions. Then I spread my appointments as far out as I can.
My step-mother was diagnosed a year and a half ago with MDS, there are a lot more studies going on for her age and she barely got in one under the wire and went into remission immediately. However, she came right out of remission. She is now undergoing a stem cell transplant. Please keep Glenda in your prayers!
I have to get tx monthly to every 6 wks-Procrit + I have been on the nuelasta shots and they have had me on steroids for my platlets for 5 years.
I can wait a pretty long time before getting a tx! I am terrified of iron chelation! I DO NOT want that! So I’ve trained my body to with stand a lot! + the new energy drinks work good for an occasional pick me up. My dr. says as long as I drink them in moderation it is ok!
What did your dad enjoy doing before this dreaded disease? I would try and get him interested in his hobbies. The things he enjoies doing. He is human and has hopes and dreams, fears and weakness just like us all. This is very scary stuff. Watching someone go through it is scary but if I was to be honest with you and with myself the feelings of dealing with the pain, weight gain, and just the day to day knowing that I might not have a normal life span is a lot to take. It takes time and a lot of constant prayer!

[Author]

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