It's wonderful to add you, Mary, and you too, Valleygal, to our little discussion group.

There's nothing wrong with eavesdropping, but it's worth the price of admission just to banter with Chris!

Mary, I'm sorry that your husband won't talk to you about the disease, but you have us. I figure that you go with him to the Dr appointments? In time, maybe you can break the wall of silence. And thanks for the prayers.

Valleygal, I see that you live in Sanger. Small world--I live in Coarsegold, and go to Cancer Care Center in Fresno. Where does your husband go for treatments?

Gayle, I didn't realize that Lou had such a terrible handicap. Doesn't type??? Woohoo.

Chris is right. None of us will die from MDS. Make you feel better? Wellllll, not exactly. My WBC isn't too bad yet, but my latest case of bronchitis is still with me 6 weeks later. For my lottery, I guess I'd have to choose "lungs," thank you very much for the suggestion, Chris.

I visit the vampire next Monday, so we shall see how the latest Aranesp shot is working. By the way, Valleygal, 12 is the cutoff point for Aranesp shots (at least for Medicare).

Now, Chris, about your prodigal daughter (I never liked the biblical story). Can't say I blame you for feeling the way you do. I hope that if you do get together before your trip, you have a deep-down discussion about how it feels to be ignored for 7 years. Sounds like honesty would be vital before healing your relationship. I'm very happy that your other "kids" have made up for this one.

Do I feel safe way over here on the Pacific coast, Christopher? Shoot, no. You've already won my heart. Of course, my husband doesn't know that!

Hello all,
Thanks to all of you for making me feel welcomed and feel much better. Chris, you do have a way with words and also such a good attitude. And Heaven will be a wonderful place, much better than here on earth. Thanks to all of you for the encouraging words. I think ya'll(that is Southern for you all) are the only ones that really understand. Birdmom, if I could choose for Jim(husband)I would choose heart in his sleep. He has worked all his life and that is truly what he loves to do. When he was a child on the farm, then Navy in WWII, then building houses for 55 years. Yes he just quite building homes last year. He is so blessed to have worked until 87.
Gayle and Lou, I too have just semi retired so that I can do more with Jim. It is great not to rush now. Just enjoy life.
Birdmom, thanks for starting this and please keep posting all of you. That is how I can know how others are dealing with MDS.
Chris, have a good trip and listen to your lovely wife. But I know that you do.
Love to all,
Mary in Alabama

Just a quickie, to Mary in Alabama, and all the Eavesdroppers.

Glad to hear that y'all live in the South. I used to live in Houston Texas USA, but its a long time ago. I must let you in to a little secret. I think anyone in the South of the USA, deserves everything they get, and the rest of the world should jump on you all hard. Fancy eating Grits.....we use Grits to stop vehicles sliding around on Icy and Snow covered roads..... AND YOU EAT THEM.??? Who said the USA was the greatest country in the world.??? They sure haven't analized your eating habits!!! Could there be a connection between MDS and Grits.??? I ate them once, only once, and only a spoonful, and I have MDS. They sure must be very very toxic. Please please help me.
Love from the Old Brit
Christopher.

Chris,Birdmom, Gayle and Lou and all,
I hate to hear you don't like grits. You see, people not in the south eat grits with sugar and milk. And that is not the best way, Lots of butter, salt and pepper is the way to enjoy them. If there is a connection between grits and MDS, the whole southern USA would be sick with it. Talk to you all for listening.
Mary

Hello there!! Great news! My husbands numbers were up so no Aranesp shot this time.
And Birdmom, my husband does go to the same Cancer Care Ctr. that you go to.In the 2 months I had been reading the posts and him going to the Cancer Care..I was hoping we would run into you as I have an idea what you look like.Maybe one day we will have the pleasure of meeting you!
Chris, how I enjoy your zest for life!!!My husband has so many things going on with his health it is hard to say which is bothering him more. Sometimes I think maybe the Dr. sees the condition my husband is in so he tries not getting him to discouraged. About 2 years ago he had a subdural hematoma which they operated on and anything that could go wrong did go wrong.We were mighty lucky he is alive but it did leave some deficits. But you all make me feel so encouraged!! And I am learning so much! Thanks! I appreciate all you share! And to chat with othere who truly understand is a total blessing!!
Mary I think it is so wonderful that your husband could do something he truly loved until the age of 87!
Chris, I hope you have a blast on your trip!
Chat at you later!

Dear Eavesdroppers et al,

I am sure you are all fasinated as to my Agenda for the coming week. Monday I have a family of Ukrainians, who want to get their son or 16 into another school. Ukrainians are very difficult. I have never ever been close to Ukrainians. Perhaps that is because no Ukrainian female has ever suggested going to bed with me. Most Ukrainians are just after the money.! My wife doesn't think I should pay them, and I am sure that my services are worth far more than they pay me.

Thursday is Vampire Day. Thanks Birdmom for the new name, which we must stick to, as it is so much easier to spell that Haematoloogister, or whatever the leeches like to call themselves. Vampire is good. Congratulations Birdmom.

Friday is borrowing day, when I am due for a full two units of blood from someone who I do not know, but who has kindly contributed half a litre of blood so I cam contimue being difficult, irrascible and contentious. Thanks Fred, or Matilda, or whatever you are called. I am sure the Eavesdroppers appreciate that they really want me to be full of irreverent and irrelevant banter, so let us all drink a toast to Fred or Matilda, Eustace or Horatio, or is it Jack and Jill who went up the hill to fetch a pail of water, Jack fell down and broke his crown and Jill had a real humdinger of a life as a widow.
Then I shall start packing.
Have a good week-end, y'all, and even Birdmom if she is not hibernating in the Mountains.
V-gal, next time you are in the Cancer Care Centre, just ask for Sharon Bird, they must know her, and her commanding presence, and you'll probably get 100 good brownie points by association with her. If you want to recognise her, just look out for a Mountain Eagle, or an Albatross, regrettably with a touch of Bronchitis. Give her a kiss from me.!
Christopher.

Chris wrote: 'Grits.??? I ate them once, only once, and only a spoonful, and I have MDS. They sure must be very very toxic. Please please help me.'

Help YOU??? What about me? I only ate a forkful one time, with butter, salt, & pepper!. I had no idea they caused MDS; I thought it was a simple matter of regurgitation. (Sorry, Mary!)

Valleygal, I'll be at the CCC Monday afternoon, so we'll miss each other. Congrats to your husband for keeping his count high enough not to need the Aranesp. I'm always curious which way mine will go, as the shots are still new to me.

Hello everyone! Looks like there has been a lot of activity since I last checked or "eavsdropped"! It's good to see that you are still entertaining this little group Chris! Keep it going!

Good for Lou and his count! :-)

To update you on my Mom and maybe get some advice: Mom has had a bad reaction to the Revlimid. She broke out in blisters on her arms and legs. When she told me that she had these blisters, I told her that I read that is a sever reaction and that her doctor she be told ASAP. Well, that was on a Friday night so she called her oncologist Saturday morning and couldn't reach him so tried the "so called nurse on call" and couldn't reach her either. A pharmacist told her to stop taking it until Monday which she did. She saw the doctor on monday and he said that obviously she is not going to tolerate it. So now wants to wait a month and try Arenesp. We have convinced Mom to go to Cleveland Clinic. I'm not happy with the doctor. He has seemed distracted and uncaring. He saw her at an appoitment and she asked him a question and he said he would have to look into it, because he didn't have her chart with him. How do you see a patient for a scheduled appointment and not have their chart with you? Is it just me, or does that seem strange to anyone else?

Anyway, her records are being faxed to Cleveland Clinic and they will call once they recieve them. I regret that we did not do that in the first place.

I feel like I'm still in a bit of denial or just confused. I read everything I can on this. Sometimes I read that people who have MDS will live for many years, 10 or more years even! Then Chris mentioned he was diagnosed only 15 months ago and has advanced to leukemia. I feel like I'm on a rollercoaster.

Cheryl

Hi everyone,
I was diagnosed in March 09 with MDS. I have some old posts on here but when it went stagnant for a while, I was off for a while. My daughter hooked me up to this support group. I went to MD Anderson in Houston, Tx, for a 2nd opinion and have been coming here since last March. At MD Anderson, I was then diagnosed with a subtype of MDS of CMML (leukemia). I was put on a chemical research trial of oral Vidaza which has been a God send. I take 8 pills a day for 7 days. My main problem has been low red blood count and high monocytes which distinguishes me with the CMML. My counts have been a roller coaster and I knew I was not getting the right chemo and told last month I would be taken off the clinical trial. My doctor told me it could take 7 months for the chemo would start working but I was still very discouraged. We have been flying to and from Texas from central Illinois twice a month since March. Two weeks ago, my monocytes had gone down some but not enough as they were still too high and my hemoglobin had gone down to 8..5. I was so discouraged. My clinical trial was ending and it was to be discussed on Nov. 17 what my treatment for the future would be after i had another bone marrow aspiration and blood work. I saw my hemo doctor on the 17th and my counts are now almost perfect!!!!! My blasts are 3%, my homoglobin had gone up to 9.5 and my moncytes were 6%. I am staying on the same clinical research trial of oral Vidaza and life is good again!!! Don't give up hope no matter how discouraged you get. At any time, you might get the amazing news I just received. I am 60 years old and way too young for this disease but as we all know, sometimes we are thrown a curve ball. I am so glad to see you all giving support to each other and am glad to be back in the conversations. Has anyone else been blesses with the CMML diagnosis along with MDS? I even retired a couple months ago. It's great to hear from you all and to share information.

Please do not judge me on my posts.....:). I just reread what i wrote and realized all the typos I made. I actually verbalize better in person and am very good at writing. I just need to slow down and proofread before I hit "send".

Susan,

Good to hear from you again. Keep in touch.

Thanks for pointing out to everyone, that when you get MDS, the ability to spell and write good grammar seems to fly out of the window. I thought that in my case it was totally me going gaga, but now that you mention it, I can relax, cos it isn't my fault its the Fault of the Vampires and and Pharmacists for not giving us the right doses. So let us all celebrate. IT is THEIR fault, we are all perfect. Yippee!
Christopher.

Cheryl, sure sounds like a good idea to switch Drs. Your mom's reaction to Revlimid was a scary time, I'm sure.

As you've probably read, I have experience with only one drug--Aranesp. I had no reaction to it at all.

I don't agree that you are in denial, considering how much you research this disease. As to life spans, perhaps it depends on how far along each person is when it's diagnosed. I was told that mine was in an early stage. Chris apparently was either much farther along or belongs to a crummy subgroup. My group? 7-10 yrs. So each year, I start counting all over again, lol! I think that's the way Chris does it, too. How else is he going to be able to take care of all of us lovelorn ladies?

Susan, I knew nothing about CMML, so I looked it up, & still know nothing! Maybe you can educate the rest of us.

Valleygal, what Dr do you see at CCC? I now have Dr Pad.

Yes, a toast to Fred/Matilda etc.!

Birdmom,

Yes, you are right. Not denial, just confusion I guess! Mom was also told that hers was caught early, so I need to keep that in mind. I think sometimes I just start to panic about things and forget that she is probably lucky that it was diagnosed early. Thank you, your post really did calm me a little. I'm anxious to see what Cleveland Clinic has to say. I hope my Mom feels more positive after her visit there. I think she seemed a little down after the whole Revlimid thing. I mean, she feels good physically right now, but I think she feels as though she took a 3 steps forward and 2 steps back, if that makes any sense? Anyway, I will let you all know what happens with Cleveland Clinic.
Take care, and you all have a wonderful Thanksgiving if I don't talk to you before then!

Cheryl

Of course Birdmom is right. I do belong to a very crummy sub-group, cost one of my apparent problems, but I cannot see it, is that I have three Chromosome 8's. This is apprently unusual, and can cause things like deformed limbs and downs syndrome babies, tho I have seen no evidence of either in my offspring.
I was never offered Aranesp, or Revlimid, only Hydroxycarbamide, also known as Hydroxyurea, which seem to be having, subject to frequent adjustments in the dosage, and steading effect of the downward slide. Anyway I feel absolutely fine, apart from the desire to fall asleep and also lots of ulcers in my mouth which last about 48 hours and then go. I also take some stuff to stop me gettong gout, and also an anti-fungal syrup, which is not unpleasant. It beggars belief in the minds of most if I have to tell them that I have medical problems, cos I am just as outrageous, happy, pleasant as always.

Today my son wrote to me from Australia, and since his visit here has been Googling around, and found out that my Great Grandfather was born in Vancouver, so I am one eighth Canadian. Should I celebrate, or down a bottle of Vodka to drown my sorrows. You folks over there must know a lot more about Canadians than I do. But I will bet youall one thing, I bet they don't eat grits.

Cheryl, each & every one of us experiences those two steps forward & one back as our blood tests go up & down. I saw the vampire this afternoon, & my counts are not bad, just down a bit. Had another Aranesp shot & I'm good to go till just before Xmas.

So far I don't have to take anything else. I would like to get the H1N1 vaccine, but it's not yet available to us seniors. Hopefully, having the Asian flu in the 50s will give me some immunity to this strain (that's the word being spread). Just goes to show what a national health plan would be like when we can't even get this flu vaccine out.

Three chromosome 8s, eh? Well, we knew you were special, Chris. I tried to google that, but gave up quickly. Waaaaay beyond my little brain.

Part Canuck? That may redeem you, having a forebear from BC. I feel certain that they don't eat grits. Once, when I traveled thru, tho, their eggs were white (even the yolks). Gave me a turn.

Where does your son live in Aussie-Land? H was born in Melbourne, but lived in a small town called Tynong until he emigrated to the states with his parents.