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CLTann 05-24-2006 06:28 PM

maryanne,


My heart goes out to you and I will pray for your recovery. I am at a loss on what treatment you can undergo to get rid of the leukemia. Since leukemia is a system wide lesion, the treatment must be for the whole body, I suppose. Keep up with your fighting spirit and be brave.

Ann

sherri 05-24-2006 07:02 PM

You are stronger than this,
 
Dear MaryAnne,

You are in my thoughts and prayer. We all love you and know with your strong will and courage you will win this battle again.

Love and hugs,

sassy 05-24-2006 07:20 PM

Keeping you in my thoughts and prayers, Maryanne. "Be of good courage for He is your guide."


Sassy
________
Property For Sale Pattaya Thailand

Kim in CA 05-24-2006 07:34 PM

Maryann,


This is just the worst news. I am truly sorry you have this on top of everything else you have been through. Just know I'm thinking of you and will keep you in my prayers. Do try to keep us posted.

Love, Kim in CA

lindaw 05-25-2006 01:43 AM

Dear maryAnne

you have our prayers, support and anything else you need. I am so sorry you have to go through this - you have been so supportive to others in our time of need.We are all here for you now.

love
linda

helenh 05-25-2006 03:10 AM

Dear Maryann

Stay strong and positive in the knowledge that all your friends on this site will always be here to listen and support you through the good and the bad times. My thoughts and prayers are with you and your loved ones.

Kindest regards

Helen

Sheila 05-25-2006 04:53 AM

Maryanne
Your news is overwhelming, but not overpowering....put on the gloves for another round...you have come to far with so many other obtacles to let this stand in your way...you are young and have the spirit in you...fight hard, we need you and you children need you....you will be in my prayers daily that this will setback will be dealt with promptlt and effeciently...keep strong Maryanne, and if you feel down or overwhelmed, remember the love and energy on this board surrounding you. Sending love and a big hug.

madubois63 05-25-2006 05:41 AM

THANK YOU everyone for the OVERWHELMING love and support. I am passed the shock and in to AMAZON mode. I will be reading EVERYTHING and seeing my new leukemia specialist doctor (I don't know if there is a name for it yet - new lingo to learn - sigh) on Tuesday loaded with questions, concerns and attitude...I will keep you posted and will have a friend post when I can't. Thank you again!!!!

Cathya 05-25-2006 06:25 AM

Maryann;

Here are some sites I found....hope they help. God bless.
For other organizations that offer information and resources, see Organizations That Can Help: A Searchable Directory.

Cathy

RobinP 05-25-2006 06:28 AM

OH, I am so........sorry to hear of your new diagnosis. I am glad you posted so we can all join in to encourage you. Keeping you in prayers...

MJo 05-25-2006 06:33 AM

I am sending you prayers and strong wishes for recovery. Two of my cousins had childhood leukemia (they are fine now) , so I wasn't happy to read that leuk could be side effect of chemo. I am amazed at the fighting spirit of women on this board and in my weekly support group. We are all soldiers here. MJo

Olivia 05-25-2006 07:08 AM

Spoke with my friend
 
Spoke with my friend who went through the exact same thing - she said she'd be happy to talk to you. Let me know.

Olivia

Shell 05-25-2006 12:50 PM

Maryann-

I was so sorry to read your initial post, and please know you are in our thoughts and prayers - and I can't wait to hear of some good news for you, so you'll have that signature with the swirls around it, which always brings me a smile when I see your posts...

hang in there...

shell

Becky 05-25-2006 02:09 PM

Dear Maryann


My girlfriend (who helped me through the beginning process as she got bc 2.5 yrs before me) got AML just after I was diagnosed. At the time (since I was just having my surgery and really didn't know anything yet) she told me it was that lightning struck twice but later admitted it was because of chemo (and that the cytoxan is the likely culprit). She is 18 months from her last treatment for AML and is doing wonderfully. She is also doing well on the bc front as well (she was only ER/PR+ ).

I am sure she would talk to you and if you would like, privately email me and I will get her your phone number so she can call you. She got treatment from Dr. Fazi Bari at Morristown General (Carol Simon Cancer Center) in Morristown, NJ.

My thoughts and prayers are with you.

Kindest regards,

Becky

eric 05-25-2006 05:24 PM

Marriane, I'm sooo sorry that you have to face this new challenge. It never seems fear. As you can see from all these posts, the one thing that you will not have to worry about is the love, support and prayers that will be heading your way. I hope your new road to recovery is as quick and easy as possible.
Eric

Patty H 05-25-2006 05:38 PM

I know that I have had that concern too. I have been on chemo 8 times and I have had radiation 4 times now.I'm so sorry to hear your news. You are in my thoughts and prayers. Please keep us updated. Patty H

Cynthia 05-25-2006 05:45 PM

Maryann,

I join all of the rest of our friends in wishing you strength and confidence as you battle back against this latest blow. Please know that we are all here rooting you on.

Hugs,
Cynthia

emmasmom 05-25-2006 07:37 PM

Maryann - I am so sorry you have to go through yet another treatment. You are in my thoughts and prayers. This too will pass. Keep fighting. Hugs.


Lisa

Her2nSue 05-25-2006 07:55 PM

sending hugs and prayers
 
Maryann,

I've been away from the computer and now have just read your post. Extremely sorry to hear of this new and scarey news that you have to endure. Just go into it with the NY attitude and don't let it get you down. Us NY'rs are really good fighters, esp. when we give attitude! You'll make it through, esp. with all of us pulling for you through our prayers, thoughts and hugs being sent.

Thinking and praying for you. Keep your chin up.

Sue

Bev 05-25-2006 08:04 PM

Hang in there Maryann. If we can outlast this thing a few more years, I think Science will come to the rescue. Will pray for you. BB

Lolly 05-25-2006 08:40 PM

Maryanne, I've been away from the board and just read your post and all the wonderful, uplifting replys; this group really knows how to rally. Guess we get alot of practice, eh gang? So, you are now in fighting mode, and that is good. Go in there swinging, and we will be right beside you. You have met and conquered many challenges to get here, and this is a big one, but you can do it. Big hugs and prayers.

<3 Lolly

lexigirl 05-25-2006 09:49 PM

MAryanne,

While witing to get my herceptin tx today I read an article on leukemia. There is a tx for CML called Gleevac. Awesome results. 76% of pts 18 mos out are still doing well. I am not sure if it is also used for AML but I really wanted to write this down.

Do know that we are thinking of you!

Lexi

madubois63 05-26-2006 01:47 PM

I am in contact with Olivia's friend (who also has/had ALM). She is 4 years out from BC and 1 year out from a transplant. She is doing GREAT, in complete remission and living life. I am not amazed at all the support and love you guys are sending me. I knew you guys are the greatest!!! Thank you once again!!!

Annemarie 05-26-2006 08:35 PM

So sorry for your news
 
I feel terrible for your news. I am so sorry and will say an extra prayer for you tonight. I found your story to be chilling. In particular being called down to the office and then having to tell your family. I wanted to cry.

Are you going to see a new oncologist? I have found it helpful to have a plan of attack as a very good distraction. Good luck to you.

lisahammo 05-28-2006 02:25 AM

Maryann, your post absolutely devastated me. AFter all you have been through already. It really struck at my heart, as I have been worried about this myself lately. I have also been having Herceptin/Taxol/Carbo, and last week asked my onc to stop the carbo as my platelets keep dropping. I can't help but think the worst. Please keep us all posted on your progess, and my thoughts are definitely with you.

Love Lisa

BubblesMom 05-28-2006 06:05 AM

Maryann, I've been away from the board for quite some time now and am overwhelmed by the losses experienced in recent weeks. Your news hit me rather hard. My most fervent prayers are with you and your family. I was heartened by hearing that you are in AMAZON mode (you go girl!) and look forward to news of your progress. Big hugs and positive energy coming your way (as evidenced by everyone's support messages).

With warmest regards, Denise

Helen 05-28-2006 02:30 PM

I am so sorry to hear your news. Glad you were able to get in touch with Olivia's friend. Keep on fighting. I am also praying for you.

Helen

rinaina 05-28-2006 02:53 PM

my prayers you have, my support you have, my wish for an answer you have. please know everyone, whether we know you well or not are praying for you. What about a bone marrow transplant? Not that I know anything about your one particular case but I know these are done.

Praying for the best,
Rina

rinaina 05-28-2006 02:55 PM

I am praying for you and your entire family. I don't know anything much about this but what about a bone marrow transplant? Don't know if it applies but ask.

My prayers are with you and your entire family.
Hoping they find answers.
Rina

madubois63 05-28-2006 09:32 PM

For those that are interested in what happens with a stem cell transplant (aka bone marrow or core cell transplant): As far as I know, I will be having a bone marrow transplant. whether the marrow is my own (taken out, cleaned and put back) a donor (related or not) or core blood (from a babies umbilical cord) has yet to be decided. I am waiting for the full pathology report (genetic testing). The transplant won't be done until after the chemo (which is given over 7 -10 days continuously in the hospital). The chemo is supposed to kill all the marrow. I am then tested to see if I am in remission - if so, then they do the transplant (which is the easy part). If not, they do the chemo gain until remission is obtained. Then the marrow is given by IV and the cells just know where to go. The important thing is not to get sick. I won't have an immune system for several weeks until my body accepts everything - so I will be kept in the hospital in a private room with limited visitors. My house has to be scrubbed clean before I am allowed to go home (rugs, curtains, blinds, filters, vents, dog...) Some insurance companies actually pay for cleaning costs and there are foundations that pay for it if the insurance does not pay. I found a place that gives 10 free cleaning sessions (a 3 man crew comes in and douses everything). I will then have to take anti-rejection medication for a bit and get all new immunization shots just like a baby. I will find out what chemo is planned and when I am going in to the hospital. I have to prepare to be away from home (and my kids and dog) for a month. I get a nutritionist and my own social worker to help plan finances. This thing can cost over 1/2 million dollars (Yipe). Medicare does pay for a transplant, but they may not cover the cost of a search (about $70 for a blood test for the donor to see if they are a match). I think the donor registry doesn't charge for a search As always, Medicare only pays 80%. I have Medicaid as my secondary but have a "spend down" of $310 per month (like a large co-pay). Thank you, thank you, thank you for all the support and prayers....



..·´¨¨)) -:¦:-
¸.·´ .·´¨¨))
-:¦:-
((¸¸.·´ ¸.·´
-:¦:- -:¦:-
-:¦:-
((¸¸.Maryann -:¦:-´´

karenann 05-29-2006 12:34 AM

Maryanne,

I am so glad you have been able to talk to someone who has been through this experience and is doing well!!! I know you have a tough road ahead of you, but I know you will overcome this and be on the road to recovery very soon.

Love and prayers.

Karen

rinaina 05-29-2006 06:32 AM

Maryanne, it sounds like an action plan is in motion and I hope all develops as it should. My continued thoughts and prayers are with you during this, to say the least, most difficult and challenging times. You sound so strong and that can only help. Your children and dog will survive your absence and understand. One thing I didn't understand was you being on medicare, how is that at such a young age Maryanne? Please try to stay positive and believe this will all be okay in time and with the great care you will be getting. I know it is difficult to be patient and positive always so we will all help with that here.

Rina

Sue2001 05-29-2006 07:07 AM

Maryanne,

I just read your post and wanted to let you know that you are in my prayers. I will be sending postive, healing thoughts your way. I know a woman who had the same thing happen and she had a bone marrow transplant about 5 years ago and doing fine today.

It sounds as though you have done your research! Hang in there,
Sue

saleboat 05-29-2006 07:26 AM

Hi Maryanne,

My father-in-law (74 y.o.) is doint the autogolous (self) stem-cell transplant right now-- he is in his third week-- he has (had?) relapsed lymphoma. He's done the high-dose and his body just started making white blood cells again, post transplant. It is so amazing! He is kept very comfortable and has morphine at his finger-tips. It has not been fun, but I'm surprised at how manageable it has been for him so far. It is the last thing any of us would wish one ANYONE, enemies included, but I hope for the same uneventful experience for you. I'm just so sorry to hear that you have to do this.

Are you having the procedure done on LI? We're in NYC, so not so far away.

Jen

AlaskaAngel 05-29-2006 11:29 AM

Maryann, if I got even just one thing out of it, it is that I will be taking every possible opportunity to educate anyone I know who is pregnant about the real need for considering donating cord blood. I guess because this happened to you, that kind of need is burned into my brain. I know all of this is not easy for you. Thanks so much for staying in touch.

AlaskaAngel

madubois63 05-29-2006 06:43 PM

Rina - I applied for and got Social Security Disability when I first got sick six years ago. Inflammatory breast cancer is one of those diseases that get immediated approval for benefits. After 2 years, I automatically got medicare coverage. I may only be 42 in years and 23 in my mind, but my body feels at least 97...

Jen - thank you for sharing about your fil. I will pray he continues to do well. I am having the transplant at Stony Brook University Hospital. I could have gone to Columbia Pres, but this is closer to home and easier on my family...

For those interested, here is a site about core blood. Victoria is the baby that saved her mommies life...you may have seen the story a few years back. http://www.cellsforlife.com/faq.htm

I spent the day in the hospital getting blood and platelets. I wish I could answer everyone personally...once again, thank you for all the prayers, info and love!!!!

Maggie 05-29-2006 07:26 PM

Maryann, I have been shocked reading your news! I'm so sorry this is happening to you, again.. You and your family will be in my prayers.

Maggie

al from Canada 05-29-2006 08:43 PM

Maryanne,

You stay strong, kick ass and make your sisters (and guys) proud. We're all very proud of you and admire you strength, determination and the example you are setting. You and many more are raising that bar so high where the expectation for the standard of care for survivors in this support group is: "expect only the best and failure will not be an option!"
Make them write a book about you!

Thinking of you,
Al

cconsolver 05-29-2006 10:52 PM

Maryann -

I am so sorry you are having such a hard time. Hang in there and know others are pulling for you.

Cindy

rinaina 05-30-2006 12:04 AM

Stay strong Maryanne and thank you for answering my question about medicare. Please never feel you have to answer anything if not up to it, just take care of yourself and concentrate on what you need to at this time and always. All our thoughts and prayers are with you. I told my husband about you and didn't anticipate this happening but I cried. You come to get so attached to forum members even though I truly am still a newbie.

rina


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