Bad news for Madubois63

[madubois63]

I've been dealing with low counts lately and picking up every infection that seems to breeze on by. I had the seven and a half hour nose bleed that started me down the road to transfusion queen. My onc ordered a bone marrow biopsy and we did that on Monday. I got a phone call yesterday morning from my onc. They asked me to come to the Smithtown Office. I NEVER go there and in six years I have NEVER gotten a call to come in to see the onc. I tried to convince myself they just wanted to check the biopsy site as I grabbed my Ativan bottle. They put me right in a room and I knew things were about to get bad. I have AML (Acute Myeloid Leukemia) which is most likely chemo induced (too much chemo). CRAP. Did any of you know too much chemo can cause leukemia??? I did, but certainly did not think this would happen to me. I know someone else on the boards has dealt with this, but can't remember who. If anyone can direct me, I'd appreciate it. My head is spinning right now. I am waiting for an appointment with a new doctor specializing in leukemia and for the final reports (genetic testing). More than likely I will get chemo given over a weeks time (yup - hospital again) and spend up to a month recouping in the hospital. I will have no bone marrow or immune system and infection will become the enemy. I had the worst day - telling my daughter, son, mom, sister and a few friends. I almost wasn't going to post, but I REALLY need all the prayers I can get right now...I love you guys.

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

[saleboat]

I am just so sorry to hear your news. I don't have any words of wisdom, but did want to let you know that I read your message, and my heart goes out to you. I can only imagine how trying this is, and wish there were more I could do to help.

Jen

[Tracy]

Just wanted to let you know you are in my thoughts and prayers.

Tracy

[kimber]

We live on faith. However, I have to ask, how much does one woman have to take for God's sake. I will pray for you. I really will. God bless you. - kim

[Ann]

Maryann,
I do not have any advice but you are in my thoughts and prayers. I am so sorry to hear of your new battle with leukemia.

[jjfromcanada]

I was so saddened to read your note. I too knew this could be a result of chemo, but have no persoanl experience with it.

Thinking of you.

[janet/FL]

MaryAnn,
I am so sorry to read your news. You are in my prayers.
I am not sure but I think the information you want is on Lola.
I can't find out how to post the link, but if you search for-- Lola, bone morrow--there is one by Steph that tells it all. It was posted 1-11-06
Hugs,
Janet

[AlaskaAngel]

Dear Maryann,

I wish Steph were here to help with this but she is traveling. She would know what therapies Lola and her husband considered, and what some of the plusses and minuses might be about them -- and might know of some good places online for support and good information about it. Please remember that you are not Lola and each person has different circumstances that help or hinder their progress. Please could you have someone stay in touch with us so you and we can talk while you are on this path and likely under restrictions to protect you from infections? You are awfully precious, you know.

As ever,

AlaskaAngel

[lexigirl]

Oh Maryanne, you are in my prayers. I don't understand why these things happen... Please be strong and keep us posted on your upcoming tx. I am glad that you posted this news.

Love and Prayers,
Lexi

[sarah]

you're a brave, strong person so stay strong. hope you hear some really good news soon. keep fighting.
sarah

[Tessa]

I have always admired your spunky and indomitable and humorous posts. Although I can offer no wisdom, just admiration and heaps of good wishes, i know there has been discussion about leukemia on this board, and you will soon,m no doubt, get the best possible advice.

Keep us informed and I am sure you will conquer this too,

Tessa

[cherylynnie]

Maryann,
I am so sorry to hear about the leukemia. Continue the fight. I will pray for you!

[Olivia]

Maryann,


This happened to my friend. She completed treatment a year ago and is doing GREAT!! I would love to put you in touch with her. She is 4 year BC survivor and 1 year Leukemia. Email me at rbukosky@comcast.net.

[R.B.]

Your plight reinforces my saddness and frustration that more resources are not put into prevention as well as cure.

I truly hope things improve for you.

It puts the minor irritations that consituted my bad morning very much into perpective.

It must have all been so hard for you.

RB

[Audrey]

MaryAnn, I am so sorry to hear this news--I'll keep you and your family in my prayers. It's been hard to come to this website lately without shedding a few tears! I can just imagine you telling your children and mom about this latest development. Remember what they say--have a day to just cry and then the next morning get up and fight, fight, fight. You know you have the support and prayers of all of us here--get in touch with Olivia's friend who is doing well--sometimes all you need is to know of one other person who's been through it all and came out fine. Sending cyberhugs and my best wishes...

[anne]

I am sorry to hear about this Maryann. But you will get through it. My thoughts and prayers are with you.
Love,
Anne

[Monique M]

Maryanne:

I am so sorry. I cannot imagine. I am praying for you and your doctors. Let us know how else we can help.

Monique

[Sherryg683]

Damn MaryAnn, you have been my inspiration here, you have gone through so much. I was wondering how you were doing having to stay on chemo for so long. I will pray for you that they get this under control...please keep us updated..sherryg683

[RhondaH]

my prayers that is. I am attaching a posting of all of Lola's leukemia posts and hope they will help you. Take care and I will keep you in my prayers.

Rhonda

http://her2support.org/vbulletin/search.php?searchid=19519

[tousled1]

I'm so sorry to hear that you have leukemia. My son had AML so I know first hand what you will go through. Just remember to be strong and fight! Perhaps you will be able to have a bone marrow transplant. You are in my thoughts and prayers.

[Julie2]

Please know that we are all praying for you. Please don't get discouraged by this set back. All is going to be well with you.

Julie

[Cathya]

Maryanne;

I am so sorry to hear your news. We ARE here for you and after you have talked to Olivia and her friend please post what we can do for you...any missing links or thoughts you might have. You have been so brave and have gone through so much and I have admired you and your posts for a long time. My prayers are with you and I will see what research I can find in the meantime.

God bless,

Cathy

[al from Canada]

Maryanne,

I'm soo sorry, this is really starting to hurt! I just can't believe all this calamity that has befallen us.

I found a link to a suuport group, I don't know how good it is:
http://listserv.acor.org/archives/aml.html
Al

[Christine MH-UK]

I am so sorry to hear of this. I know someone who survived adult leukemia, but I am not sure it was the same type. I will keep you in my prayers.
All the best,
Christine

[Amy]

Maryann....stay strong and courageous. You are in my thoughts and prayers and hope you feel all the positive energy and love directed your way.

God Bless you,

Amy

[TriciaK]

Dear MaryAnn, you are such a beautiful person and have been an inspiration to all of us! I know you will keep fighting, no matter what. I am so grateful that you posted, even though it is hard. Please try to keep in touch , as we all will be thinking of you and praying for you. God bless you with peace and calmness and the physical and spiritual strength to get through this trial, too. Remember we love you and are praying for you! Hugs, Tricia

[kk1]

Maryanne;

I am so sorry to hear your news but I know you will find the strength to get thru this. You and your family will be in my prayers.

KK1

[Barbara H.]

Maryann,
I just wanted to let you know that you are in my thoughts as well. I hope that Olivia can help you. You will have a difficult road ahead, but maybe the chemo you get for your leukemia will knock out some of the breast cancer and put you in remission. You deserve a break. Of course I don't know if that is possible, but I just want to give you hope. You are such a fighter and an inspiration.
Best wishes,
Barbara H.

[Mgarr]

I am sorry and you will be in my prayers.

Mary

[tricia keegan]

I just saw your post as I was away last week but wanted you to know I too will be thinking and praying for you.Really sorry you are having to go through this,it really sucks!
Know that we will be thinking of you:)
Tricia

[jener8er]

So sorry to hear this Maryann, but like everyone else has said, you WILL get through this. Please stay in touch and post updates for us whenever you can.

{{HUGS}}
Jen

[CherylS]

Maryann,

Praying for the peace and presence of God to surround you as you face this new challenge.

Thank you for giving us the privilege to pray for you.

[suzan w]

words fail me...prayers coming your way

[jag]

Mary Ann----may God Bless You And Cover You With His Loving Mercy....and Be With You At This Time....i Will Pray For You....

[Susan2]

Thank you for taking time to post and letting us know what is going on with you. It is monumentally unfair that you should have to go through this.

Give your children an extra hug and please know that you are in our thoughts and prayers.

Take very good care of yourself,
Susan

[Montana]

I am sorry to hear this news. I will be thinking good thoughts and sending them your way.

[Liz J.]

Dear MaryAnn,

I will be praying for you and your family. Please stay strong and try to keep your sense of humor. That may seem impossible right now, but I believe it helps to ward off these beasts. May God Bless you.

Sincerely,

Liz J.

[DeborahNC]

(MaryAnne)

Please know you are in my thoughts as well. This news is hard to try to wrap the mind around. Far too much pain here of late. I'm so very sorry.

[Tami]

MaryAnn I am so sorry to hear this news. Please know that we are lifting you and your family in prayer. tami

[LovingDaughter]

Stay strong and don't give up!

You are in my thoughts and prayers.

[CLTann]

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]

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]

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


Sassy
________
Property For Sale Pattaya Thailand (http://pattayaluxurycondos.com)

[Kim in CA]

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]

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]

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]

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]

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]

Maryann;

Here are some sites I found....hope they help. God bless.


Leukemia and Lymphoma Society: AML:
http://www.leukemia-lymphoma.org/all_page?item_id=8459 (javascript:makeNewWindow('http://www.leukemia-lymphoma.org/all_page?item_id=8459','link0');)
American Cancer Society: What is acute myeloid leukemia?:
http://www.cancer.org/docroot/CRI/content/CRI_2_2_1x_What
_Is_Acute_Myeloid_Leukemia_AML.asp (javascript:makeNewWindow('http://www.cancer.org/docroot/CRI/content/CRI_2_2_1x_What_Is_Acute_Myeloid_Leukemia_AML.asp' ,'link1');)
National Cancer Institute: Adult AML (PDQ®): Treatment:
http://www.cancer.gov/cancertopics/pdq/treatment/adu
ltAML/patient (javascript:makeNewWindow('http://www.cancer.gov/cancertopics/pdq/treatment/adultAML/patient','link2');)
For other organizations that offer information and resources, see Organizations That Can Help: A Searchable Directory (http://www.marrow.org/cgi-bin/RELATED_ORG/search_orgs.pl?type=patient.html).

Cathy

[RobinP]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

Maryann -

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

Cindy

[rinaina]

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

[kristen]

MaryAnne,

You are in my thoughts and prayers and I am praying really hard that this goes as easy as it can, no complications. You have been through so much. Your one tough, beautiful woman and you can "DO IT"

God Bless, MaryAnne.

[Esther]

Maryanne, I've been away from the boards for a while, so I just saw your post. I admire you so much for the way you are handling this! You pushed through the shock to look for your options and deal with it.

Keep us posted, hope everything will come together for you, and you will soon be posting "in remission!!!"

[Adriana Mangus]

Were you receiving herceptin as part of your treatment. I'm so sorry to hear that now you have to deal with this disease. Stay strong, I will keep you in my prayers. Love, Adriana

[rinaina]

I am amazed at the collective courage of all the forum members and hope I too can continue to follow their example as a whole.

[StephN]

Dear Maryanne -
While I was away it seems that there was a lot of various news that was posted here. My heart sank when I read about your latest test and trial with this disease. I know you have been taking pretty much continuous chemo since diagnosis and this is the reason you have ended up with this leukemia.
I do recall when you first appeared on this site and you had mets all over AND were able to do well on the drugs at that time against those mets. You were an inspiration to many with how you were handling your life, disease and family. Now you will do that again.

I am so glad that you are taking this in stride now and getting the ball rolling. Looks like your "dance card" is full for a while. Just check in every once in a while - or, if you have a journal page, let us know so we can check in on you, OK?

Our hearts and prayers are with you as you go down this next fork in the road.

[Les]

Maryanne you are so strong .I will pray for you that all goes well. you can do this I believe in you! love Leslie

[madubois63]

Thank you everyone for thinking of me. I needed today to absorb everything from yesterday. Good news and bad (mostly bad) . The pathology report came back and basically I have 3 abnormalities. 3 or more has poor prognosis...sucks for me! I have another bone marrow biopsy on Friday. The new doc wants it from his own labs. I will more than likely be admitted on Monday. They just called and asked if I wanted to come in on Friday but I said I wanted the weekend with my kids. I'll get a Hickman catheter placed in my neck. I have a port already, but it is a single. They need more lines....and they will take fluid from my lungs for pathology. I've had the fluid left over after the Pleurodesis. It may be there because of BC (active) or it may be there because of Taxotere or Herceptin. Hopefully the later...If the BC is still active, I will not be a candidate for transplant. No one is being tested for a match from my family. They say IF I am eligible, the registry is the best bet. They match white cells and not blood type. My kids are half of me and my sister is a quarter of me (different fathers). I would need a double core blood and not many centers do that. That may be last resort but that all depends on BC and leukemia remission. The registry will start the search AFTER they get me in remission (only if there is no BC) and it takes 24 hours to get a list of possible donors. Then it could take 3 - 5 months to get the actual donor. They call, ask if they still are interested, healthy, blah, blah, blah...The actual donor is only donating blood. They filter out the stuff I need and put the rest back in the donor. If any friends or family are interested, it cost $45 to become a donor (it's free if your a minority), and it's just a simple blood test at first. http://www.marrow.org/ It's an international registry, so the marrow could be coming from anywhere. So I start chemo to hold off the leukemia no matter what. It's a week on continuous drip. Day 14, they do another bone marrow biopsy. They decide if I need another treatment. If I need more chemo, my stay gets extended to 5 or six weeks. If not, my whites have to come up to a certain number and they let me come home for a month. Then I do it all over again to keep me in remission until a transplant. If I don't qualify for the transplant then I can do chemo until I can't take it anymore or decide to stop. The chemo MAY work on the BC if it is active (let's pray). The doctor doesn't know me or what I can do. We are still working on a relationship. He is nice enough. I asked a lot of educated questions and at one point he told me to let him be the doctor - lol. He was a bit doom and gloom and it was upsetting, but like I've said before, I've done it before and will do it again. I've already outlived the IBC and I'll do the same here. I'm one for the books. Once again, I thank you all so very much for the overwhelming response. They love and support has just been amazing. I will have Internet access, so I will try to post as much as possible.
..·´¨¨)) -:¦:-
¸.·´ .·´¨¨)) -:¦:-
((¸¸.·´ ¸.·´ -:¦:- -:¦:-
-:¦:- ((¸¸.Maryann -:¦:-´´

[Diane H]

Sending prayers in truckloads your way, strength and hugs to you, Diane

[Val Pfeiffer]

Maryann--
I hated to read your news. You are most certainly in my thoughts! Life works in unusual ways...allow me to tell you a story...I got on a shuttle today from the Atlanta airport and met a woman who is a physician who is hired by patients who need assistance advocating for their health care needs; as you can imagine, she deals with many cancer patients. We got into an involved conversation about Her2 cases and issues related to them. There is a huge oncology convention in Atlanta this week (I am here for a health care plan alliance meeting, not this oncology one) and she is here for that. She is what's called a "Clinical Advocate." I can't help but think that someone like her could help you or maybe other members of this board. She spends time doing medical research for people, then presents her findings to their current health care providers. For a fee; not sure how much. Judging from what I have learned from everyone on this board, most of us are doing a damn good job advocating on our own, but there is a big part of me that wants to be able to offer you some sort of advice. This is all I've got to give you other than my prayers. Keep the faith; we're all pulling for you :-)

XXOO
Val

[rinaina]

speaking of journal page...has anyone heard of caringbridge? i created a caringbridge site for myself as a suggestion from a good friend and i have to say it has been quite therapeutic for me. if anyone is interested the site is.....

www.caringbridge.com/visit/inaschneiderman (http://www.caringbridge.com/visit/inaschneiderman)

[Sheila]

MaryAnn
You are in my thoughts and prayers in this new fight...you are very upbeat and that is what makes you so special....you seem to shine through all of this....you have the will and the fight, please post on how you are doing and if there is anything we can do to help.....you are in my prayers.

[StephN]

Hi Maryanne -
Lola used the Caringbridge journal site and if she could not post, her hubby or someone else would.
Thanks for the update - but not the part about having 3 anomolies. Still and all you have ovecome IBC as you say and are of a mind to get through this.
Glad to have the specific info on how they go about the whole thing. This seems a little different than for Lola as she had her sister typed a match early on and all was ready for the marrow when the chemo had done its work. Sorry they want to play a waiting game with you. But you have some additional issuess at work here as you described. Thanks for your honesty, as we never know when it could be our turn. And at least we would know what questions to ask, if we felt sidestepped by the docs.

You may be interested to know that one of my husband's cousins was very instrumental in getting the marrow donor registry started in the eighties. Their son was here in Seattle being treated for Hodgkins AND Nonhodgkins lymphoma as a result of Agent Orange exposure. We watched him go through his transplant process with marrow donated from one of his sisters. It was an honor to have his first "outing" with us and do a small celebratory dinner at our house. This registry has done a lot of good for a lot of people and it is my fervent hope that you will also benefit.

Have a great weekend with your family and a lot of prayers will be coming your way on Monday as you enter the hospital.

[Barbara H.]

MaryAnn,
I am thinking of you everyday, and will continue to be in my thoughts during the weeks and months ahead. I have to think of the story "The little engine that could". You probably read it to your kids when they were little. You have the right attitude to think that you will do well with this transplant and don't let the doctors take you fighting spirit away. It doesn't really change anything to think negatively, and it's better to keep hope on your side. You have a lot of courage and what it takes to make it.
Best wishes,
Barbara H.

[rinaina]

Maryanne, my daughter just told me about her former boss who had a bone marrow transplant for the same reasons and she is 6 years out now and doing remarkably well...so you hang in there and keep fighting.

[AlaskaAngel]

Hi Maryann.

That is a lot to absorb, and a lot ahead of you. I hope your new doctor can handle finding out that you are more of a partner than a neophyte. Are there any particularly helpful ancillary staff there for times when you need their ear?

AlaskaAngel

[Tami]

Maryanne - keep the faith and continue to fight the fight. I am sending tons of love your way and in those moments when you may not feel you can be strong, know that we have your back.

[fourboysmom]

Honey, I am thinking of you and praying for you. Sincerely, Janet in CT

[Adriana Mangus]

Thank you very much. My bone scan is clear..no evidence of cancer..Praise the Lord!>.

[LovingDaughter]

What does it take to be a donor? How can you get tested to determine if you are a match?

[Adriana Mangus]

Not sure. Contact Sheila go under member list, she may be able to help you. Lots of love to you and your Mom. Adriana

[madubois63]

http://www.marrow.org/index.html (http://www.marrow.org/index.html)



If you have a history of pre-cancerous cells, you will be able to register to become a potential volunteer donor. If you have had cured, local skin cancer (basal cell or squamous cell), you are also able to register. Persons who have healed cervical cancer in situ, breast cancer in situ, or bladder cancer in situ are also able to register. (In situ cancer is diagnosed at a very early stage and is specifically called "in situ.") If you have had any other form of cancer, including melanoma, you are not eligible to become a volunteer donor - no matter the length of time since your treatment or recovery.

So many have asked...Thank you!!!! I woke up this morning and thought it was Monday (admitting day)...Said a few explanatives then realized - yeah it's Saturday. I took my son to the SAT (ugh for him). I was just changing his diaper....and now, we are prepping for college.

[TriciaK]

Dear Maryanne, Just want to remind you again that you are in my thoughts and prayers and will be especially all next week. We love you and expect a miracle for you! Hugs, Tricia

[pattyz]

Dearest MaryAnn.........

If spirit and mindset have ANYTHING to do with dealing with this latest "health test", you will definitely come in with an all 'A' report. And that's a fact.

I hope and pray that all the people who will be coming to attend you will be of the most compassionate nature, with humor of a loving kind. And that the have very receptive minds/ears to LISTEN to what you say...

With deeply felt respect, for an amazing woman,
pattyz

[rinaina]

Maryanne I admire your strength. Can't believe you took your son to his SAT exam. It is true how fast their childhood goes. Mine are now 27 and 24 and out of the house. Don't know how that happened so quickly. Still helping financially with the 24 yr old law student though, so one off our books,(so to speak), are they ever really completely off? Keep your chin up and only positive thoughts. If anyone can beat this it is you. As always you are in my prayers.

[RhondaH]

http://www.asco.org/portal/site/ASCO/menuitem.d773f70619f767fd506fe310ee37a01d/?vgnextoid=4cca201eb61a7010VgnVCM100000ed730ad1RCR D&reuterview=detail_view&reutersid=4919

Rhonda

[MCS]

I'm sorry to hear about your news. You are a very positive person. Keep it up. It's a fight.

My thoughts are with you

Maria

[Patricia]

Dear Maryann,

I am so sorry. I was so devastated to hear your news - as my daughter (who also took SATs this spring) says 'this disease SUCKS!' Please know that we are all with you, thinking of you, praying for you and are your sisters in this battle. And battle it is - go AMAZON!!

Please keep us posted. Let us know how we can help you - we are are all here for each other and we want to support you.

Gentle Hugs!
Patricia

[heblaj01]

Maryann,

Here is a piece of news which may be usefull to you:
Reported June 15, 2006
Two New Drugs Beat Leukemia, Too

(Ivanhoe Newswire) -- Most people with chronic myeloid leukemia (CML) respond well to the breakthrough drug Gleevec, with 93 percent still doing well five years after treatment.

Now there's new hope for the minority of patients whose cancer can't be cured by the drug. Researchers publishing two new papers report promising results for the drugs dasatinib and nilotinib (also known as AMN107).

In the dasatinib study, conducted among 84 patients who had developed a resistance to Gleevec, 68 responded favorably to the treatment. The nilotinib study involved 119 patients with either CML or another form of leukemia known as acute lymphocytic leukemia (ALL), all of whom were also resistant to Gleevec. The drug improved outcomes in all of the CML patients, with 11 out of 12 of those with the chronic form of the condition experiencing a complete remission of the disease. It proved less effective, however, in the ALL patients, with only 2 of 13 responding.

Dasatinib and nilotinib caused relatively few side effects in the studies, although nilotinib was linked to heart problems in a few patients in that study, a result researchers note will call for careful monitoring of patients.

The authors of both studies believe these new drugs will have an important role to play in treating CML and may one day even replace Gleevec as the standard treatment. For now, however, they plan additional studies to take a closer look at long term effects of the drugs to ensure their safety for a wider range of patients.

SOURCE: New England Journal of Medicine, 2006;354:2531-1541, 2542-2551
http://content.nejm.org/cgi/content/short/354/24/2531
http://content.nejm.org/cgi/content/short/354/24/2542


Good luck

[Lisa]

Sometimes this all seems too much to bear. But we've seen your strength. Thank you for sharing your news so we all can say extra prayers for you.

Love and light,

Lisa

[Karen t]

Dear Maryann,

Just read your posts and want you to add my name to the long list of people who care about you. As for your doctor who wants you to let him be the doctor, this is a cooperative effort and you – as the person who has the most at stake – are equally entitled (if not more so) to weigh in with your questions and views. And, it's ok in this process, for your doctor to wear more than one hat, too, e.g., "understanding human." It's a good thing! ^,^

Prayers and hugs,
Karen