HER2 Support Group Forums - Bad news for Madubois63

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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.

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!!!"

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

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.

One tough chick!

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.

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

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 -:¦:-´´

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

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

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

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.

Caringbridge journals

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.

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.

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.

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

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.

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

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

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

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