~Too Many Brain Mets To Count~Mighty Oak's Saga Continues... - Page 3

caya · 06-12-2009, 09:29 PM

Marie, I am so sorry to hear this news... I know you and Ed will fight this with the help of your good drs.. and the grace of G-d.

Sending many prayers from Canada, and big hugs to you both.

all the best
Caya

Margerie · 06-12-2009, 10:09 PM

I am so sorry Marie

(((Hugs))) to you both

Lani · 06-12-2009, 11:38 PM

I rarely make recommendations, preferring to provide information and let it go from there...but

Believe, you write well and from the heart

Although I have only heard Patricia Steeg speak at conferences and don't know the lady from atom, I think a well written email from you and or Mighty Oak
might get a humane response from her (otherwise ask your Onco Man or Gamma Man to write one directly to her)

She has gone out of her way at conferences to publicize brainmets.org website
and to acknowledge the human side of breast cancer brain mets.

And as a taxpayer, she is actually YOUR EMPLOYEE

From one of her papers I got:
Steeg PS,
Women's Cancers Section, Laboratory of Molecular Pharmacology, Center for Cancer Research, National Cancer Institute, 37 Convent Drive, Bethesda, MD 20892, USA. steegp@mail.nih.gov

The worst that could happen is that she doesn't answer back, and if that is the case you will probably be too busy to notice!

All the best!

PS If you want to pass the proposed email by me first, just post it here onllne(as a new thread so I notice it) and the Lani EDITING SERVICE with be at your service.

Lani · 06-12-2009, 11:47 PM

I rarely make recommendations, preferring to provide information and let it go from there...but

Believe, you write well and from the heart

Although I have only heard Patricia Steeg speak at conferences and don't know the lady from atom, I think a well written email from you and or Mighty Oak
might get a humane response from her (otherwise ask your Onco Man or Gamma Man to write one directly to her)

She has gone out of her way at conferences to publicize brainmets.org website
and to acknowledge the human side of breast cancer brain mets.

And as a taxpayer, she is actually YOUR EMPLOYEE

From one of her papers I got:
Steeg PS,
Women's Cancers Section, Laboratory of Molecular Pharmacology, Center for Cancer Research, National Cancer Institute, 37 Convent Drive, Bethesda, MD 20892, USA. steegp@mail.nih.gov

The worst that could happen is that she doesn't answer back, and if that is the case you will probably be too busy to notice!

All the beest!

PS If you want to pass the proposed email by me first, just post it here onllne(as a new thread so I notice it) and the Lani EDITING SERVICE with be at your service.

hints: it should only be long enough to touch her heartstrings and should be very business like and concrete in asking questions eg. Could you answer the following questions: 1) 2) 3) 4). That way she doesn't have to answer you with a long composition, but can copy and paste the questions and add yes, no or short answers. The main question you have is what treatment options are available to MO at this time, what clinical trials are likely to be available to him, who would she see for treatment if it was her or a member of her own family, if nothing specifically available, would she try Fulvestrant since it seems it crosses the blood brain barrier, does she have more information on intrathecal herceptin or boswellia. Also ask her about that NIH trial I listed as being the topic of the most promising talk I heard in the last five years and how you could get in contact with him at the NIH.

This should keep you busy!

karenann · 06-12-2009, 11:53 PM

Marie and Ed,

Please know that you are being surrounded with love, strength and healing prayers.

Karen

harrie · 06-13-2009, 01:31 AM

Marie, I wish I could offer valuable advice or information, but I can't. So want you to know that you and Ed have all my love and prayers. I wish you strength, peace and courage. One step at a time. We are all there with you...
Much love, Maryanne

hermiracles · 06-13-2009, 06:13 AM

Biggest hugs and prayers for you and Mighty Oak, Marie.
Blessings
Hermiracles

Yorkiegirl · 06-13-2009, 07:46 AM

Marie & Ed many, many prayers going out. I wish I could do more, but I can pray alot.

michka · 06-13-2009, 09:11 AM

Marie, just offering hugs and love to you both. Keep hope. You and Ed have been such a great team with your Oncoman. So you must once more team up and sort through the options. Fight. You are both in my heart. Michka.

For Lani: you are terrific. Thanks for jumping in the fight. We love these two.

Jean · 06-13-2009, 10:12 AM

Strong prayers are being said.

hugs,
jean

Believe51 · 06-13-2009, 11:21 AM

These posts and your loving support is the strongest force pulling me through this right now. I am so depressed and cannot stop crying, the tears literally fall from my eyes with no effort.

But I refuse to give up and so does Ed. He has told me that it is time to stop pushing him and although the hardest feat I have ever had to accomplish, I have stopped. I am here to exhibit his options and help him to live the rest of his days with honor and grace.

It is important to him for me to keep coming here long after he leaves, as long as it does not depress me. I need you all to know that I could never leave you and would never pass judgement for anyone that had to. It would be my honor to continue to celebrate your victories and to wipe your knees when you fall. You have enriched our lives beyond words and all hold a different part of my heart. I truely have meant it when I say Ed and I are truely indebited to your friendships.

Monday will hold alot of our future and at this moment I am just trying to keep hopeful until then. A couple of special friends who are Angels now always told me to follow my heart and his body and you will know when it is time. Sadly, as much as I try to ignore these feelings, deep within I do know. That is not to say that we have given up; fighting for every last breath!

On a lighter note, Ed went fishing with a friend so close to the family that he is family. Mighty Oak is a big animal lover and gave up fishing years ago. Just something he wanted to do again while he can. I went to breakfast with this gentleman's Mom, she lived with my Mother-in-Law. We stopped at some yardsales and I bought a few pieces of old glass that I knew she would have picked up and gave a home to. Funny how Ed and I spent our life getting new things, new furniture, always trying to improve the way we modestly lived. Now I have a room full of her antique furniture, glass and nick nacks.

Thank you again for walking me through this. These replies remind me to keep breathing and keep the faith until we know more. His brain is loaded with more mets than you could ever imagine, too many to count, they gave up after counting to 50. We need a miracle one last time and I will never ask God for another miracle for Ed and I. I love you friends with all my heart....you will never know.>>Believe51

Lien · 06-13-2009, 12:02 PM

Marie & Ed,

I wish for many, many more miracles for you. Big ones, like a tx that eliminates those mets, like a cure, like ... you know what I mean. And little ones, like the moment when you could see the sun behind the clouds and the water being still. Like the way you look at each other. A gazillion miracles for the two of you, so the hours become days become weeks become months become years become decades of love

Jacqueline

StephN · 06-13-2009, 01:54 PM

Marie -
I am posting a separate thread with some thoughts that surfaced this morning. You may not know the answers now, but some things to go over with your docs.

karenann · 06-13-2009, 01:56 PM

Marie,

I believe there is hope.
Karen

Audrey · 06-13-2009, 03:18 PM

dear Marie,
I'm keeping you and Ed in my prayers and holding you both tight in my heart--I do believe in miracles, big and small, and am wishing for a miracle for you now. Don't give up!

Rich66 · 06-13-2009, 03:38 PM

1: Mol Cancer Ther. 2009 Jun;8(6):1589-95. Epub 2009 Jun 9.

Links
Vorinostat enhances the radiosensitivity of a breast cancer brain metastatic cell line grown in vitro and as intracranial xenografts.

Baschnagel A, Russo A, Burgan WE, Carter D, Beam K, Palmieri D, Steeg PS, Tofilon P, Camphausen K.
Radiation Oncology Branch, National Cancer Institute, 10 Center Drive, Building 10, CRC, Room B2-3561, Bethesda, MD 20892. camphauk@mail.nih.gov.
Vorinostat (suberoylanilide hydroxamic acid), a histone deacetylase inhibitor, is currently undergoing clinical evaluation as therapy for cancer. We investigated the effects of vorinostat on tumor cell radiosensitivity in a breast cancer brain metastasis model using MDA-MB-231-BR cells. In vitro radiosensitivity was evaluated using clonogenic assay. Cell cycle distribution and apoptosis was measured using flow cytometry. DNA damage and repair was evaluated using gammaH2AX. Mitotic catastrophe was measured by immunostaining. Growth delay and intracranial xenograft models were used to evaluate the in vivo tumor radiosensitivity. Cells exposed to vorinostat for 16 hours before and maintained in the medium after irradiation had an increase in radiosensitivity with a dose enhancement factor of 1.57. gammaH2AX, as an indicator of double-strand breaks, had significantly more foci per cell in the vorinostat plus irradiation group. Mitotic catastrophe, measured at 72 hours, was significantly increased in cells receiving vorinostat plus irradiation. Irradiation of s.c. MDA-MB-231-BR tumors in mice treated with vorinostat resulted in an increase in radiation-induced tumor growth delay. Most importantly, animals with intracranial tumor implants lived the longest after combination treatment. These results indicate that vorinostat enhances tumor cell radiosensitivity in vitro and in vivo. There was a greater than additive improvement in survival in our intracranial model. Combining vorinostat with radiation may be a potential treatment option for patients with breast cancer who develop brain metastases. [Mol Cancer Ther 2009;8(6):1589-95].
PMID: 19509253 [PubMed - in process]

ElaineM · 06-13-2009, 03:49 PM

Hugs, prayers and miracles !!!!!!!!!
Please see my other post on the thread Steph started.

Believe51 · 06-13-2009, 04:20 PM

You guys rock!! You know, in the beginning I had to accept this disease because he was diagnosed at stage IV.

But I will not accept this. No. Not right now.

And Ed, well he said to me this morning as I held him and thanked him as I always do, "Marie, I will not let the cancer get the best of me, I am going out fighting for each breath." Knowing him I can tell you that his attitude shows that although I need to kick back and just provide options and smiles, he 'is' gearing up to kick cancer's butt. In the meantime, please keep kicking mine.

Dana Farber and MD Anderson please come through.>>Believe51

Rich66 · 06-13-2009, 04:23 PM

KRX-0401(Perifosine) has also been evaluated in ten Phase 2 clinical studies conducted by Keryx evaluating the single agent activity in various tumor types where patients have progressed on standard treatments. Clinical trials where responses have been reported have been conducted in patients with renal cell carcinoma, advanced brain tumors, soft-tissue sarcomas, hepatocellular carcinoma, as well as in hematologic malignancies including multiple myeloma and Waldenstrom's macroglobulinemia. As illustrated in the previous NCI trials, the lower daily doses (50 mg or 100 mg) have been better tolerated than the intermittent higher doses.

For information on KRX-0401 (Perifosine) clinical trials which are open and recruiting patients, please click here

http://www.keryx.com/page.cfm?hmid=20&smid=30&pg=19

Believe51 · 06-13-2009, 04:27 PM

Thanks Rich, I cannot click on it but I can surely research these trials. Cannot wait to go to the OncoMan with a entirely new list of 'last options' and clinical trials. I appreciate your help for me and other members when we are in need, your plate is so full too.>>Believe51