My Husband Has MDS

[Lillian]

Hello
My husband (Randy)was diganosed with MDS, RAEB type 2 IN Dec. 2001 Blast cells were at 11. He was 58 when diganosed.
Up until Oct. 2006, all either doctor he seen just checked blood labs, or did bone marrow biops. See you in 6 months.. Finaly found a Hemotologist that did more than just watch.. He started in Oct. 2006 on VIdaza. After 6 months they had to stop treatments.. Randy became chemo resistant. Next they tried. Trioxide (Arsenic) After 4 months they had to stop due to causing longation of heart beats. Next they tried Decitabine.. Again Randy became chemo restistant. Also with new bone marrow biop.. he now has deletion to chromosome 11q.
Now Randy has been given Revlimid. Started Monday.. March3, 2008.

To say I am worried about this newest Chemo..(Revlimid) IS beyond thinking.
Randy has had Heart disease for years. Quad bipass surgery in 1997. Aorta/ Illiac Anresyum graft bipass Oct. 2001. He has had 6 major strokes. He also has hypertention.
I have researched and read everything I can on any treatment Randy is put on. This one scares me.. Chance of heart attact. blood clots Ect..

With Conjestive Heart disease Already.. his risk are doubled..
Randy has never had to have blood transfusions. Which I have heard is one miracle we have had for him...

Right now I wait to see what happens with this new treatment. Praying it works. From what his doctor says this is about the only thing left to try.
Randy says if this one doesnt put him into remission than he is not going to try anything else..Should the doctor come up with something new.

For each of you with a Love one going threw MDS. For those of you who have MDS. MY Prayers are with each of you.
I am happy that I finaly found a place on the internet that has actualy postings for MDS.
I have searched via internet for chat rooms for MDS none around.
Don't go by prognosis you may read or are told. Randy has been here 6 yrs and prognosis for his form of MDS is 10 to 12 months.
Thank You all for listening.. I will be watching post and sharing as I can with you..
Lillian

[Ruth Cuadra]

Lillian,

Welcome to Marrowforums. It sounds like you and Randy have enough experience with medical issues to run a forum of your own! It is amazing that with all Randy has been through, he's never needed transfusions. There are several people on this list who have posted about their experiences with Revlimid. I hope you'll let us know how it goes for Randy.

You are right that people shouldn't necessarily believe the prognoses that may come with an MDS diagnosis. Many people live for years with a good quality of life and the new treatments that have become available in the last few years are extending the lives of patients even further.

Regards,
Ruth Cuadra

[Lillian]

Thank you Ruth;
It hasn't been easy on Randy, with all he has gone threw. Yet he is one gutsy guy.. As all are that deal with these diseases..
I'll keep a post on whatever progress he makes.. Just the waiting is the hardest. To see if the Revlimid works.

Keeping Postive, is the one thing we have going..
Thank you.
Soft Smiles.

Lillian

[bbsturm]

Lillian,
My husband has mds since July, 2003. All his counts are usually very low; he is transfusion dependent for prbc's and platelets. When his b/p is elevated, his frequent nosebleeds are more profuse. I monitor his b/p several times a day with a wrist sphygmomanometer to make certain he is getting enough medication to keep his hypertention under control.
If your husband has hypertention, you might consider doing the same, (possibly) to help prevent another stroke...of course, discuss this with his doctors to get their approval and so that they can be involved. All the best, bety

[Lillian]

Hi bb,
Thank you for reply.
I keep close watch on Randy's blood presure. It is taken morning noon and night. His doctors so far have not found a combination of BP med's that truely contoll his BP. I am always watching for signs. If I think it is up I do another check beyond the normal three daily. Extra meds if needed.
Randy has so far avoided having blood transfusions. Which I might add has also baffeled his doctors. I have found him a new heart doctor. This one seems to know what he is doing.. Is going to adjust his meds. Also wants a Neuro called in.. We see him next week.. Doctor said some people are just prone to TIA's. I do my all to get him to a ER when i see a stroke going on.. As we only have a three hour window to stop the worse damage.. (I know your aware of this)

My Prayers go out for you and your husband. Please know that your a speical person and I pray for extra strength for you as caregiver.
Thanks
Lillian

[bbsturm]

Lillian,
It sounds like you are doing all the right things. I hope you are able to ward off the TIAs, etc.
Thank you for your prayers and good wishes. I have been sending you the same! Thank you for your response. All the best, bety

[Lillian]

Thank you for the Prayers;
I have had you and your husband in mine as well..
It isn't easy girl, yet we get threw the days, weeks, months and pray years..
Hope you and your hubby are having a good day.
Randys blood preasure has been running normal last couple days. Hopefully adjustments to meds is finaly doing the job..
Blessing, Prayers and Love your way.
Lillian

[Lillian]

This Morning Randy (my husband) has decided to stop all futher treatment for MDS.
As a Caregiver and Wife. I have to stand by his decision..We talked a bit than, I went off had a good cry. Said a Prayer and returned with a smile for him. AS I told him threw the last 16 months of treatments.. It is your body, I will support you in all decisions you make..
I have no idea, how fast this disease will progress now after treatment.
I do know I will do my all to help him threw the new battle ahead.
I don't know how fast MDS, CML and CLL progress.. I doubt that doctors do either.. Its like wait and see type of thing..
Will continue to read other peoples stories here. And continue to give support where I can..
I have all who live with bone marrow diseases in my prayers..
Thank You
Lillian

[Ruth Cuadra]

Dear Lillian,

I admire your willingness to stand by Randy in this very difficult decision. Although today's treatments offer a lot of promise to patients with MDS, each person has to be able to decide what is right for them. We'll keep you both in our thoughts in the coming days and weeks and hope that you find much comfort in each other's company.

Regards,
Ruth

[Birgitta-A]

Dear Lillian,
Randy is very brave when he decides to stop treatmen! He has really tried all drugs for MDS. I am so afraid of the adverse effects of the drugs that I have chosen to wait - I think good quality of life is more important than a long life.
Hugs
Birgitta
68 yo, MDS Interm-1 dx May 2006, transfusion dependent, Desferal 4 days every 6th week with transfusion, Neupogen 2 injections/week

[Lillian]

Birgitta;
I will keep you in my prayers.
In all of the research, I have done, via internet. I wish Randy would have avoided treatments and stayed with managed care. He has never had to have transfusions. Blast cells at the time treatment was started was 12%
I have to wonder if perhaps the doctor, started treatments to soon. Blast cells at last bone marrow biop was 7%. A new finding added was deletion of 11q Adding CLL to the MDS and CML.
Hon if you can keep from having chemo, I pray you can for a long time to come.
God Bless Dear One'
Loving Hugs

Lillian

[Birgitta-A]

Hi Lillian
Thank you very much indeed for your kind answer – it was the best I ever got ! You know I belong to five support groups and post often.

The researchers at one of the best hospitals in the world – MD Anderson Cancer Center – write that it is important to treat MDS early: “Based on these, we are currently developing a new classification system for patients with lower risk disease. To do this we studied close to 900 patients referred to our center over the last 25 years with low or intermediate-1 MDS (by the IPSS score) that had not received therapy. The first important observation was that 10% of patients eventually transformed to AML. This indicates the need to treat patients with lower-risk MDS.”

http://www.mdanderson.org/publicatio...=displayfull#1

Randy has got exactly the drugs that they use at this world famous clinic. All patients are different – I have not had more than 0.2 % blast cells but had HGB 7.0 at dx. When the new drugs for low platelets are approved I will perhaps try Vidaza and Zolinza if I my platelets first respond to therapy with for example Eltrombopag/Promacta/Revolade.

I am old enough to remember all the children that were born without arms and legs due to the Swedish drug Thalidomide (that now has a “daughter” Revlimid). I am aware of that many patients with MDS have a very good effect during many years with Revlimid but dare not try that drug.
Hugs
Birgitta-A
68 yo, transfusion dependent, Desferal, Neupogen, last platelet count 48

[Lillian]

Dearest Birgitta-A;

Once again thank your for your reply.
Randy, is off today for a infusion for his bones. Right now I don't know what the name of the meds is. However the nurse is writing a couple down for me.
Isn't it sad that the chemo's to treat MDS can also do damage to the bones.
I have to agree with you on your choice of Cheno theraphy. The Revlimid, is a little weard. Randys eyes burn horrable at times. The doctor, called the companty.. Come to find out.. as a person sweats, this med come threw the pours.. Also threw the tear ducts. I know that the others most likely can be the same was. Yet the Revlimid, is really something..
I checked the site out that your send in your last posting. Thank You.
I am trying to find a connection of what may have triggered MDS in Randy.
Threw the years. Randy has had a number of test for heart, strokes, ect. MRI's Tredmills, CT Scans. Well the whole testing thing.. Each time they used the contrast dyes.. (Radiation) When I called the MDS Foundation with my wondering mind. The lady told me they just don't know yet. I questioned, that if this is possable why hasn't it been researched futher to hopefully keep others from getting MDS or other bone marror problems.
If his is in relation to the contrast dyes. Than he is not De Nova. He is Secondary..
Perhaps your doctor could put the word out and in your beautyful country. More research can be done on the contrast dyes.. I have started the ball here. At least i Pray I have been listened to. There has to be a safer, "Contast Dye" that can be used..
Again I have you in my prayers. In My Heart.. As I do all who have to fight this battle.
I am only a caregiver. No Dr. Yet my mind turns searching for something to grab a hold of to give reason, for why MDS runs to rampid.
I have a disabled son that from time to time has the contrast dyes.. Thankfully its only been a couple of times. Now I feel I have to say No when it is suggested. I am his voice. So I think I have the right to say yes or no.
I wish there was a daily chat room to relate to people with MDS. I chat in the yahoo cancer room. However it is rare hearing of someone with MDS.
God Be with you
With Love and Hugs
Lillian

[Birgitta-A]

Dear Lillian,
As far as I understand most people with MDS don´t know how they have got the disease. There are probably many explanations.

When I got my dx I had never been ill before and had not had any examinations. Perhaps some virus infection without much other symptoms has changed my stem cells in the bone marrow. I thank God because I have had a good life with a wonderful family and an interesting job .

I miss my grandchildren very much and they miss me - I am so afraid of infections that we only meet when we are sure of that they don´t have any infections .

Aug 2007 I got sepsis after a tonsillitis and since then my WBC count has been very low. I have to take Neupogen injections 2/week but I don´t trust the WBC:s I get from Neupogen because they can be immature and perhaps not fight of infections as well as WBC:s should do.

Hopefully Randy has good effect of the infusion for his bones! I am sure your strong support helps him to fight the battle.
Hugs
Birgitta-A

[Lillian]

Hello Birgitt-A
I am happy that you have a lovely family standing by you.
I sure understand about missing the grand children.. Randy and I have 26 grand children and 5 great grands. Missing all the family really.. We have two sons still at home.. Scares me if one of us gets a cold.. All our kids know if they even think they have been exposed to anything.. Please stay away.
Randy is getting Aredia Infusions. His blood labs today were really great.
Just a tiny hight on the WBC 10.8 just point 3 over the norm..RBC is a whisper low. 3.54 HGB is right on the mark really 12.1 Plat's have dropped from 380. to 285. But still running in normal range.
I think i may have upset his Hemotologist. Goodness he is a sweet man. However, Randy told the staff, I am putting out to about every major Hospital my wondering question. Could the MDS have been triggered by the contrast dyes? He is also sadden that Randy has decided to stop chemo.
Yet he does respect the mans right to choice.. It is after all his body.
I told Randy about you. He says hi.. And he will add you to his prayer.
Randy said maybe when the Good Lord calls him home. What the Medical findings on him may help find some answers on MDS. He has donated his remains to the Indiana Medical School in our fine state of Indiana. He has made this decision before he found out he had MDS. He said when he talked it over with me. I have so many medical problems. Maybe someone else can have a life saved with what the find. As always I back his decision. Now he ask that his doctor or I request that they look real good at his bone marrow and bones. He says now they have more to learn..
Some days he starts joking around about what them kids and he puts it, in medical school will be shocked when they start looking around.
He has a wonderful primary doc.. For many years.. Flat out told Randy. " You look good on paper, but you are a walking dead man that just refuses to lay down." We cried when Dr. O had to retire at the age of 75.
Anyhow just wanted to give you an update.. All is going fairly well it seems.
Keep the faith.
Love and Hugs
Lillian

[Birgitta-A]

Dear Lillian,
How wonderful to have 26 grand children!

I read about Aredia. As far as I understand many patients with MDS - for example me - have very hard bones (osteosclerosis) due to the disease. That symptom makes bone marrow tests difficult. Several members of this forum have the same experience as I have - we need fit young doctors when they should take a bone marrow test.

Randys blood labs are really very good . Hope they will stay that way!

Plaese tell Randy that I pray for him and wish him all the best!

You and Randy are thinking of us all when he have asked the doctors to examine his bone marrow and perhaps learn something from him.
Hugs
Birgitta-A

[Suzanne]

Originally Posted by Lillian

Don't go by prognosis you may read or are told. Randy has been here 6 yrs and prognosis for his form of MDS is 10 to 12 months.
Thank You all for listening.. I will be watching post and sharing as I can with you..
Lillian

Lillian
I am so glad I read this!! It is so disturbing to say the least when you are searching for information on MDS and all you see is horrid prognosis. This is nice to be able to look back on and not focus on prognosis. Thank you!

[Lillian]

Suzanne;
Your very welcome. I am happy I could help give you a bit of hope.
Be Well Be Blessed.
Lillian

[Lillian]

Hi;
Its been awhile since I have logged on. Its not been a easy couple weeks..
Randy thought he would give, Revlimid another go.. Well after 2 weeks.. He had a heart attact.. His pulse dropped to 51.. Bp was 110/57. He had no chest pains at all. Just a jaw pain. I took him to ER. His heart doc.. Flat told him no more chemo at all. It is doing to much damage to his heart. So he is foresure off all treatments. Blood labs are looking great for the most part, at the moment.. Heart Doc. told Randy he has perhaps about 6 months.. I looked him right in the eye.. (not easy for be being only 4' 11" tall LOL ) anyhow. I told him his name is not DR. God, so there fore he can't give a time frame.. Not with all the odds that Randy has beat so far..
My concern right now is his loss of appitite.. He is eating very little.. I make all his favorit foods. To encourage him.. I have bought Ensure and Ice Cream. To make him shakes..
I sent off an e-mail to MDS Foundation, Also Randys Hemotologist.. And several major medical training hospitals.
We always thought that the possable cause for Randy, getting MDS was, "benzene" threw his work.. I kept having a nagging thought pop into my head. As Randy was a welder for 37 yrs.. Researching via Cyber space.. I found something that blew my mind.. Randy has had numberious MRI's and CT scan with dye.. Benzene, is in the contrast dyes they use.. Here is a web site about contrast dyes. ( http://www.emedicine.com/radio/topic864.htm )
I contacted the hospitals hes had his testing done.. I told them of my findings.. They are going to look into things. I did suggest that they try and find something to use that does not have any benzene in it..
Randy has to have a Punch Biop done to see if there are any traces showing yet..
God if the contrast dyes are a possable link.. Than more people are at risk.
We have a disabled son that has to have MRI's and Heart caths done from time to time.. I refuse to let them use anymore dyes on him. His Neuro and Primary doctors have it in him records. SO they know not to ever order any test with contrast..
I don't know if this is a link to Randy's MDS. However if they are pumping such a dangerious chemical into peoples blood streams. And causing MDS or other blood disorders than it needs to stop..Changes for MRI's and CT's needs to be made ASAP..
God BLess Angels Keep..
Lillian

[usaf1125]

MDS is not a cancer, it does not spread, it affects the auto immune sytem,you are at risk for infection. I have had MDS for 7 years, I inject 40,000 of procrit once a week. on average I get 2 units of packed red blood cells evert 2 weeks. I take 1 Exjade daily to get rid ofthe iron overload due to the transfusions. After 4 years the ferritin dropped to 2385. It does take a while. The only advice I can give, is don't worry, worry will not make anything go away. Live your life to the fullest, if you want to do something, do it, live for today. tomorrow may never come. Above all don't worry It won't change anything. Enjoy your family, your friends, your enemys. Make sure that your last day on earth was happy. Put your faith in your doctor andif you have one, in your relegion, but don't worry it will only tear you to pieces, and wont change a singel thing

[Jenecles]

hI I'm Jenecles and my husband Chris has MDS since 2008, He has had ATG administered in 2008 and now he is on Cyclosporine. His counts are going down and he needs blood trasnfusions every month. We are going through a tough time. Any suggestions?

[usaf1125]

I'm now 79, have had MDS since 2003. I don't think about it to much, worrying won't change anything. I know it's hard having the threat of cancer hanging over your head. I did a lot of worrying early on, but then I realized all I was doing was causing my self a lot of grief. I don't pay attention to any of my labs except for the Crt and the Ferritin levels. I get blood ever 2 weeks and the Crt leve determines whether I get 2 or 3 units. My Ferritin level floats between 2800 and 3000. I will admit that I am concerned with the Ferritin level, due to my heart condition. I have had 273 units of blood. I inject 40,000 ML of Procrit once a week, I take 500 MG of EXJADE daily ro get rid of the iron overload. I know it is difficult, but come to terms with it, the only thing you can do, is make sure your doctor is the right one for you, take your medication and hope. Please don't let it become the 500 pound Gorilla in your life. I think that the best advice I can give you, is enjoy today, don't put anything off untill tomorrow ,do it today. Good luck I hope every thing works out for you, stay positive.

[Neil Cuadra]

I like your attitude, usaf1125. Stay strong and keeping doing what you like to do!

[usaf1125]

There's nothing else to do, you can't let it weight on you, life is to precious to waste it on worry. I see your wife has AA and MDS, I know what thats like, my wife had breast cancer come back in June after 33 years. Enjoy what we have had and what we will have. I work on the AA theory, one day at a time. I hope everything works out for you and your wife.

Leo

[Von Hamrick]

Is anyone else watching the clinical trials in Japan using vitamin K2 on MDS? You cam Google "MDS and vit K2" and it will give them to you. We need to get some trials like that started in the U. S. These studies are finding Vit K2 to be promising.