Hi All, Sandra, glad to hear you got out and went to your yoga and support group. I've read that about the Aransep when it starts working you might have aching in your joints or muscles, so lets hope that is what it is!

I've been working on a picture collage project for my Mom's bday. We're getting excited. 10 days until the wedding; 9 days until Mom's big birthday party. We have cousins coming in from Minnesota and Wisconsin to see her and one is even coming this weekend, a week early because she couldn't make the party.

We finally have some fall weather here in Texas, less than 90 degrees, ha ha! I've been enjoying some motorcycle rides.

Mom did chemo last week and as usual, the numbers got knocked down, so blood and platelets on Monday. She's off to the State Fair today, so hoping she's having a good day. (They took a wheel chair along, just in case.) She was feeling kinda weak yesterday. Following up with Dr. tomorrow. I have yet to see her since my trip.

Becky Jean, can they give you meds for the iron overload, or can you not take those? What ship were you on? I want to do the Venice and Greece trip someday! My daughter is going to the Greek isles in 2 weeks for her honeymoon. Hoping the chaos over there doesn't cause trouble for her; she bought insurance just in case.

Mike, thanks for your continuous positive attitude and words of encouragement. That is disappointing to hear the newest cure won't work for MDS. Did anyone get to watch the recent webinar? I missed it, darn.

Elaine, sorry to hear about your friend. Time does fly so we have to enjoy every moment. I saw my grandsons on Saturday and enjoyed some time at the putt putt. Can't wait to see them in their tuxes next week! All my kids, husband, etc. will be in tuxes, picture op! for sure.

Have a good weekend everyone! Cindi

Cindi: How fun to work on a collage for Mom's BD. I know it will bring fond memories for her.

A honeymoon to the Greek Islands sounds fantastic. Hopefully they can bypass all the problems. We flew in and out of Venice. I'll email you at a later date regarding our ship and before and after events in Venice.

I am taking EXJADE to control the iron overload but so many side effects,at present only $12.00 copay,if the changes Obama is proposing goes thru we will pay $675. a month to start increasing to $1,575. a month. Glad we have had some fun trips for memories.

Have a great weekend everyone and stay well.

Dear Friends, FYI....Just want you all to know that I went to my hematologist today and he wants me to get another opinion and sending me to University of Michigan, it is in the state I live in. I was glad that he suggested this. He still thinks I am swaying toward luekema. My hgb was 9.7 and I received another aresnep injection today. I got an appointment this Thursday which is just a few hrs. away and will be a day trip and my husband can take me. Oh! I asked what my blast was and he said 10 %...at 15 % is luekema. He did say I can have a flu and pneumonia vacination. I will do that when I get back. I have been running a temperature the last few nights and he also ran some more blood work to see if I have anything from the blood I received. Also put me on an antibiotic. Things will be okay...the unknown is not okay. Just go from step to step. Love you all and thanks for being here. Sandra

Dearest Sandra: I'm sorry to read your latest news, and I do think it's good to get another opinion. My only question at this time is when was your last BM biopsy. My memory is not as good as it should be...Are you on Vidaza? I'd like to ask all of our crew to kinda give a brief review of your illness in your journal on the sideline... that gives us a better understanding of where you are in this journey. Hang in there dear friend. Hugs! BJ

Dear BJ, Thank you for reply...my last BMB was in August and they said that I didn't have leukema, but I have some symptoms now. No I am not on vidaza, just the arenesp injection. Thanks I need to keep my jounal from the being to now. Especially that things are changing. I really appreciate your support. SG

HI Sandra,

I'm glad your getting another opinion. When they diagnosed me off of a BMB I had 23% blasts but the oncologist realized from my history, even though that is above the 20% leukimia criteria that I had MDS. My blood counts have been steady but with some dropping over the past three years. Last week my WBC was at 1.3 so we put off chemo for a week and this week it was back up to 2.0. That's pretty normal for me. I had a blood transfuion the week before so all the red cell counts were good.

The oncologist gaveme a flu shot last week. All of us are different but from my experience I'd say what your describe that there's a ton of hope that your in better shape than things like leukimia. I'll keep you in my prayers. Your right about the unknown but you can't let that control your days. Every day the we find out things we didn't know about so go with what's going on today and enjoy the heck out of it. BTW I too on occasions had evening fevers with night sweats but havn't for a few weeks. I've had some side effects that I thought might be related to the blood i was getting but they said it goes through so many tests and for me it's run through radiation before I get it so it's more likely we pick stuff up at the doc's or the hospitals we go into than the blood.

God Bless my friend and let us know how things go.

Mike

Mike, Thanks again, I did write a brief history about me in my journal as Becky suggested. I am going to yoga again today..that gives me energy. Thursday will be here quickly. My husband is very supportive and I have to be carefull not to overload him as I know he worries and doesn't express things like I do. I did look up AML...is that what you have? You are right...one day at a time Lord. Hugs to you and Becky

Peace...Sandra

Sandra a couple of things

I still have MDS. I forget what the call the stage listing but am considered at stage 3 which is I think called high risk intermediate. Stage 4 is just high risk then if it goes further it goes into the leukimia. Three years ago I started at stage 2 so keep hope and faith. This week makes 115 chemo treatments so even though this stuff is pure junk, like the commercial says there is no expiration date stamped on us

Next, about your husband. That is up to you two on how you share. My wife went the last year or so silently worrying even though I had always told her to ask me or my docs any questions she had. I had told her about progressing to stage 3 but guess she didn't understand what I meant. In the past few weeks she has done more research, asked lots more questions and is at more peace of mind in how she deals with it. We all know we're but a cold or flu germ from being in serious trouble but if we go about things right we have lots of hope for a longer life than doom and gloom would give.

God Bless and live with hope.

Mike

Hi everyone!
It has been a long time since I've written anything but I have been reading about all of you daily.
I am doing very well-exceptional actually. I recently had my 3rd BMB and my results have come back absolutely normal! There is absolutely no sign of MDS or MPN (I had both).
A little over a year ago I presented in the ER extremely fatigued and short of breath and pain in my chest (I thought I was having a heart attack) I was very tan as it was summer so at first look I looked great (although I had noticed that my gums were gray in color and my lips were very pale but I seriously thought maybe this was something that happened as one got older!) but as soon as the labs came back showing my HGB at 5.5 and my HCT at 15.3 the ER doctors took another look at me and ta-da, all the signs of anemia were there-white palms, feet, and fingernails, white under my tongue, pale gums and lips, etc.. I was given three units that night and released with an HGB of 10! I felt great, five days later I was back down to 6. I had a bone marrow biopsy and it revealed intermediate MDS affecting only my red blood line. The BMB also showed that I had MPN (extreme fibrosis of the bone marrow). My cellularity was 100% (at 36, my cellularity should be 50-60%) A search immediately went out for a transplant donor and I was started on Revlimid in the hopes that it would prolong the time between transfusions as I was receiving a lot of blood at this point. I started the Revlimid on September 2nd and my need for transfusions was gone. I stayed at HGB 8 for a bit then it started to slowly go up until I was deemed in remission in February with an HGB of 14.5. My BMB in February revealed that my cellularity had reduced to 70% from 100%! My HGB has continued to be 14.5 . No problems with my WBC or Platelets. I am still on Revlimid. I have another BMB scheduled in March and if it comes back as normal the doctors may try to take me off Revlimid to see if I remain in remission. My doctors are over the moon. This type of recovery is very rare especially seeing as I was not doing very well at the beginning. My doctors are also amazed that I even had MDS as I am a bit young for it but as we all know there is a master plan out there that does not always fit into statistics! All I can do is continue being me and taking each day as it comes. It all seems too good to be true but the results are all there in black and white for me. Sooooo.... :)

Oops, I forgot to add that my cellularity has come down to 55% now, right within the normal range!

Jeannie: That is great news. I'm so happy for you.

Blood work today continues to drop. Still feeling decent from the 2 units of blood a month ago so was surprised that HGB was 9.1 and rec'd an Aranesp shot.

Enjoying every minute as I know come November I'll start the Vidaza regiment.

Sandra, let us know how it goes on Thursday, Stay well.
As Mike said in an earlier message we live with hope.

Hi Everyone - it's been for ever since I've written but I've been keeping up on most of your posts. My husband of 33 years passed away in January from complications of a weak heart and Myelodysplasia. He was 73.

I've thrown caution to the wind....and have met a special guy. We've traveled together to Hawaii and have even attended two car shows this summer. We've won two trophies and hope to attend more shows next summer.

Weather in Central Oregon has turned from summer to late fall almost overnight. So long light clothes and sandals, hello Sorrels and winter clothes.

I'm madly in love and hope you all can find the strength to live each and every day like it's your last. Don't put anything off until tomorrow if you really want to do it.

Keep up the positive comments and support each other fully. You all are now official members of the Leaky Boat Crew. Your mission is to enjoy the cruise!

Sincerely - Gayle Najera

#1538 Mike...you do have the encouraging words. I will just have to wait until my husband wants to talk. He is supportive and I love him dearly. You are an inspiration and I will hold on to hope. Thanks..Sandra

Becky Jean .... I know how you feel with a hgb of 9. 7 and said "oh, that is good for me" Will let you all know when I get back...I do not have a laptop, so will have to wait until I get hope.
SG

Gayle, I am knew since August and this is a great site. Happy to hear that you have moved on and that you are happy. Always great to hear good news. Sandra