Susan would you mind if I private message you?

birdmom the dr didn't suggest to stop this visit. she did tell me she does not think he has gone into aml but more than likely he will pass from the fatigue or a bleed. he has the medication to keep him from that. I know he is growing really tired and weak now. I think if somehow I end up with this in my later years like he did I am just going to refuse anything that would keep prolonging me like this. too hard on the family. that sounds selfish of me. I am sorry if it did.

No question, I think that would be my decision as well. Though, David said for many years he would NEVER endure this kind of existence. Now I see that he is terrified, not of dying, but losing his independence. Though it was diagnosed last May, in retrospect, it probably started 5 years ago when walking became a chore. We have crossed the line to leukemia and the latest suggestions were revlimid and hydrea. Any experiences with either would be welcome.

Hi everyone,
It has been awhile since I last wrote anything but I have been reading. I am doing very well. My hgb is still normal @ 13.1, wbc is 4.56,platelets 280. My anc is 2.78. My latest BMB came back with significant improvements such improvements that my transplant has been put off until some later unknown date. I have an unrelated donor who is a complete 10 out of 10 match and my next BMB is in six months. So, there I am in a nutshell!
Birdmom, I wish I could have seen your dance! I bet you were fabulous.
Marybell- I have been taking Revlimid since September. When I started taking it my hgb was going between 5 and 8. I was completely transfusion dependent. The medicine began working for me immediatly. I have experienced very few side effects- bone pain (Tylenol works) very dry skin (good bye beautiful skin :)) sometimes diarrhea but for the most part no problems. I feel fortunate. My age, 37, might be, most likely is, the reason for my success. If you have any questions write me, I will answer anything. To everyone else, you are all in my prayers. Healthy health to all!

Jeanine-Just love happy success stories. Best wishes for continued and long lasting great results.

Hi Jeanine

It's great to hear that you've responded so well to Revlimid. I started taking Revlimid again after six weeks off, so far I just feel a little tired. Last week I had my blood test taken and it seems my new normal (without being affected by Revlimid) is now hgb 14.5, WBC 7.73, ANC 4.43. My platelets still haven't come back to what they were ( before taking Revlimid. I'm now taking 10mg for 21 days, then 5mg for seven days. I'll probably be on Revlimid for another six months then will (god willing) will be stable for a few years without any medication or medical interventions.

Maryabell, I would definitely give Revlimid a go. It takes a few months to work, but after four months I feel relieved that it worked.

Keep safe everyone.

Rachael

Posh...email me at sue-baker@hotmail.com. I will then give you my phone number and you call me if you'd rather, but i do not mind you at all sending me a private message. Whichever is easier for you. We will be leaving for MD Anderson on Monday for my appt. Believe it or not, my husband was diagnosed about 3 weeks ago for prostate cancer so he is also going to be treated at MD Anderson. His appt. is April 7. Between my appt. and his, we are going to spend 6 days at South Padre beach in Texas, so we all is okay with us. I am confident he caught his cancer early enough for a total cure.

oh hon! we all just can't seem to catch a break can we? I will email you. thank you so much for taking time for me.

Susan, a double whammy! But yes, prostate cancer is more curable these days. My own husband chose cryosurgery about 10 years ago, & is cancer-free today. His father died of it, but lasted to 87, not bad. He had radiation & other stuff to prolong his life. The older the man, the better his chances of survival. It goes like wildfire in younger men in their 30s & 40s.

I hope there's no spring break kids for your visit to South Padre. We love it there, but not then.

Jeanine, it makes my heart sing to hear that you are doing so well on Revlimid.

Mary, you're at a scary crossroads right now, but there is help & support here for you from the crew who have or are going thru the same thing, like Jeanine & Rachael.

Mike, are you still okay?

Posh, the end of life for most MDSers appears to be what your Dr said about your dad--not the disease but the effects. Frankly, I don't see much difference. It's like saying people die from heart failure. Well, duh!

I guess I'm cranky. Between being more tired than usual & the awful weather, when I thought we were into spring, not to mention my cough of 7 weeks duration, I'm not too perky. But I think I'm improving, so I will stop whining now.

Birdmom...i forgot about spring break!!! We might have some wild stories to tell after this trip. I know what you mean about the weather. We had 72 for a high last week and today it was 38. It will warm up after we leave for Texas, I am sure. Then we'll worry about what all we should be doing back here. I'm sure though it will be here when we get home. I also have a grandson that will help out if needed. It sure does dampen the spirit though after a long, hard winter like a lot of us have had. Is your hemoglobin down Birdmom? My energy is coming back now a little slower than usual but it's almost 7:00 and I havent had a nap yet....:)
Thats a positive thing.
To all of you, keep a positive attitude. There are times when it gets tough and we get down but we have to keep our head up and keep hoping that the cure is around the corner. I sure have my priorities in order now and know what the important things in life are. I hear people talk about their weight, their wrinkles, their dissapointment in so many things and I think, gosh I wish that's all I had to worry about. At one time, that was me also. We are all one diagnosis away from knowing the true meaning of life.

RIP Geraldine Ferraro. I just found out she passed away this morning from some type of blood cancer. This stuff knows no boundries.

Yes, Posh, she had multiple myeloma, the paper says. She was diagnosed in 1998 after feeling more tired than usual (sound familiar?). Many of our current drugs were not yet approved by the FDA at that point. I'd say she beat the odds in terms of life span by a long shot.

I think we will hear more & more about MDS in future, not because it's more prevalent but because it's better diagnosed.

oh ok. I had not seen that in any reports I did not know that is a blood cancer though. wow! so many! I think you are right hon. I pray for a cure!

had a really difficult chat with Dad this evening. I hung up crying. I have sat with enough dying people to know when they say they don't have much longer to listen to them. He is feeling useless and worthless. He told me he is getting ready to leave soon. :(

That is so hard...........I have been hearing the useless, worthless, sack of potatoes stuff for a few months. Some days I handle it well, others very sad and sometimes angry. I expect if my ability to function was diminishng and out of my control I would feel the same. A real challenge to keep the spirits up. David is 85 and we have had 43 years together. I would not wish this on anyone. I am very encouraged by those who keep their chin up and find some joy in each waking moment......

Hey there Posh,

You know we all are right here with you. I remember 2 yrs before my Mom passed away she told me my job was to keep her smiling, nothing else. We had a few serious moments but not many LOL. It was tough. 2 days before she left us we had a long talk in the hospital about all kinds of things that had me thinking she was all of a sudden understanding, which I think she was for most of it, then it ended with incoherent stuff. She fought something similar to what I have and many here have and showed em that 3-6 months was over 2 years.

It's between your Dad and the Lord and they will figure it all out. That's two pretty clever guys you know. 43 years of memories is a huge blessing and as we have talked about having the time to spend together so much lately.

You hang in there, keep His light shining out in front of you, and as my good friend used to say "Everything will be just right".

God Bless my friend,
Mike