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

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

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!!!

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.

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

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

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

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

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

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....



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

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

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

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

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

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

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!!!!

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

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

Maryann -

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

Cindy

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