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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!!!" |
Her2
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
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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.
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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. |
prayers for you
Maryanne you are so strong .I will pray for you that all goes well. you can do this I believe in you! love Leslie
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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
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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.
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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.
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Honey, I am thinking of you and praying for you. Sincerely, Janet in CT
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Thank you
Thank you very much. My bone scan is clear..no evidence of cancer..Praise the Lord!>.
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What does it take to be a donor? How can you get tested to determine if you are a match?
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Donor
Not sure. Contact Sheila go under member list, she may be able to help you. Lots of love to you and your Mom. Adriana
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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. |
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
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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 |
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.
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Interesting article
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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 |
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 |
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 |
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 |
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 |
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