~Dr Burstein (DFCI) Meets The Mighty Oak!~
 

Dr Burstein was another blessing we can say is a wonderful addition to this journey. One thing Ed and I have is one hell of a medical team and we would not change so much as a nurse. Thank you all, your medical expertise must be acknowledged once more in print.

When I asked Dr Burstein to take a moment to review my option list and cross off things that would never be an option for Ed and circle hope, he replied, "Of course, that is why we are here." I liked the fact that he said 'we'. He took his pen and read, crossing off the options that were not now an option or never should be. He circled the good options as he smiled and said, "Well, you have certainly done your research, I Liiiiiiiiiiikke that." He explained with each pen stroke as he repeated the name of the option, why or why not. He knew Ed was hard of hearing and as he moved his chair closer to him and finished the list, he looked at Ed and told him, "She has done all of her homework, sheee's goood." (thanks to some help from my Her2 family).

*Intrathecal Herceptin (through the Ommaya Reservoir) has been used with drugs such as: Cytosine Arabinoside (standard or liposome bound), Liposomal Doxorubicin aka Adriamycin/Doxil/Rubex (type of antibiotic used in chemotherapy) Methotrexate aka Amethopterin (analog of folic acid) and Thiotepa (antineoplastic agent, a sulfer analog of Tepa)

Intrathecal Herceptin is not an option for Ed, it is a dangerous application for him, does nothing good for his QOL issue, and has not been studied enough to prove effectiveness. It is in the works and can still remain an option for others, follow this, review carefully and keep on your last options list until someone crosses it off. Remember, Ed has a race against time right now and I knew somethings would be entirely crossed off. Some thing must work for him in the next 2-3 months and this is most certainly the facts for him.

The next things discussed were the general options list and review. The last option we want is *Supportive Care which is keeping his symptoms controlled if he moves on without treatment. It remains an option to us since his QOL has been an ongoing issue. Being symptom-free at the moment, he could stop treatment. This means that I would have to keep an eye on symptoms and treat accordingly. He would be able to live out the rest of his life with as little treatment as possible. He has chosen to keep this in the closet for now, papa bear has battle gear on right now!

*Clinical Trials at Dana Farber or *Clinical Trials at OncoMan's because he physically cannot travel any further. I will not even mention the trials on my list because if considering this, the most recent data is important for your choice. I will however, mention the ones on my list & those endorsed for Ed from Dr Burstein. They are Patupilone (NCT00450866) and Sagopilone (ZK-EPO)(NCT00496379), the results for (ZK219477) will be out July 2009, please keep an eye out. These drugs cross the BBB in vivo to inhibit brain tumor growth and metastasis. They are related to Ixabepilone (Ixempra)!! I specifically think of Dchips1 and Lori R when I write these names. Ladies, follow these wonder drugs for your own personal hope.

Now we come to the list of *Chemotherapy Drugs that were circled. Anyone who wants my last option folder can p.m. me because the list is not short. I will keep this post focused on his positive options for chemotherapy. Kind of looks like this on paper.....


*Herceptin* (adding this back to regime)
+
*Chemotherapy Agent* (Carboplatin, Gemzar, Navelbine, Xeloda again, or Tykerb again)
+
*Femara* (replacing current Faslodex)
+
*Temodar (Temozolomide)* (brain tumors)
imidazotetrazide derivative.

*Zometa* (no choice in this matter)

Quadramet (pain reliever that attaches to bone w/potential of radiation) was not suggested because it does damage the bone marrow. In Ed's case he cannot afford any more marrow damage.

Mannitol (Osmitrol) an osmotic diuretic used to open BBB/Brain swell. It draws fluid from the brain. There is a procedure involved that needs to be done to perform this. This was not recommended for Ed and quickly crossed off the list by Dr Burstein. This not getting circled made me a little sad. This is all a balance of QOL, estimated effectiveness and what he can tolerate.

Summary on our current feelings about what will happen seem to lean on the Chemotherapy route. Right now besides trying to claim life it is vital for QOL to become the second main concern for us. My frail husband had things pretty much under control but things took a quick turn for the worst. I am so happy I had this list started for 2 years and recently needed just a tune-up.

If you secretly ask me, because I play a doctor in real life (my favorite line for a couple of years now)......I would say....

HERCEPTIN + CARBOPLATIN + FEMARA + TEMODAR + TYKERB (if we could safely add it).

This would allow him to continue treatment with just a change in chemotherapy medications. The trips to and from Boston 2-4 times a months is too much for him right now. He would also get poked and tested more than he has been. Ed is frail and tired but still has that fight in him. I feel for his situation and keeping that QOL in the front lines............

He will be in chemotherapy Friday with a new regime. We are happy with this but OncoMan and Dr Burstein will speak tomorrow. Part of me is saddened and worried about taking him off the Ixempra. As for OncoMan, Dr Burstein complimented his treatment for Ed. Dana Farber knows Mighty Oak and his struggles and are happy he still thrives and breaks the rules. This sudden turn of events was unavoidable but certainly expected at some point. OncoMan was applauded and this even strengthened our faith in him. Dr B also stated that Ed's cancer composition could not be any worst, he has all of the worst factors of breast cancer, every last one. Yet, still breaking the rules.

I hope I could supply you with some of the hope I seen today. Science is moving at an amazing rate. Thanks for your continued prayers, support and unconditional love for us. Right back at 'cha!!>>Believe51

PS: Please keep those prayers and positive energy flowing since we are still DEEP IN THE WOODS!

PPS: Giving praise to Ed being a tumor marker sensitive person. Although this happened quick for him, TM made us act fast. His CA27/29 jumped to 690 and CEA was 4.1. CEA has always meant his brain/bone. Praise to TM's. If not this would all be too late. He gets them done every 3 weeks, he must.

Marie, I'm so stumped for words. As I read your report, I feel your strength, your concerns, but most of all your love and committment to Ed. God bless you girl and may He give you mighty strength as you begin your newest round of battles. Luv U, ma

I stayed up awhile longer last night looking for your post. I knew when I woke up this morning, something incredible from you would be waiting for me here at the forum. I was not disappointed. When do you sleep Marie? My dear, you seem to do your best writing in the wee hours of the morning. I always get this picture in my head of you . . . taking care of Ed, seeing that he is comfortable, and then sitting down to talk to us when all is quiet and you can collect your thoughts. You are amazing.

How blessed the Mighty Oak is to have you as an advocate. I too am impressed with a doctor that sees the bonuses in that. It is disappointing that some of the potential options got crossed off the list, but am grateful that there was still an option that was open.

You both will continue to be in my thoughts and prayers. I pray that you continue to find the strength to battle this crappy disease.

Sending Love your way,
Alice

Prayers
 

Marie, I am glad that you had excellent care. It makes the rest a little more reassuring that your list was validated. I wish to thank you for your help for me. I met with my onc yesterday and have appt with neuro/gamma man today at 1130 at Barrows. The oncologist said we are going to try herceptintykerb xeloda he is not sure of xeloda dose yet because of the rest of my body is ned. I hope that ED keeps his spirits up and that God heals his body, and gives you the rest that you need as well.

With Love Darita

Marie,

You are simply amazing. I cannot state much more than this obvious truth. If love and commitment could bring Ed back to NED, it would have happened long ago because of you, dear friend.

I continue to send prayers to you and the Mighty Oak.

all the best
caya

Marie, I will continue to keep you and Ed in my prayers. I am glad your meeting went well and that you were able to discuss your options. Now all Ed needs is to start a new treatment to continue his fight. I know you will be by his side to give him strength, love and support.

Marie - OMG. You are living proof of the power of our HER2SUPPORT.org University! I am in awe of your's and Ed's strength and carpe diem/claim life spirit! Hallelujah for Oncoman and Dr. Burstein... I feel the exact same way about my docs as your very first paragraph.

Thank you for sharing the options. I must say, if you and I were doctors in real life, we would be a pretty powerful team, as I have either suggested or secretly suspected a number of the options that ended up circled on your list...

All my love and prayers for you and Ed on Friday! Hope springs eternal...

AMAZING LADY!!!!!

I read your post with tears of different depths of emotions happening all at once.

Please know this: I am praying so hard!

Jean

Marie,

Again you continue to amaze us with your strength. Sharing your journey with us will help many here on this website.

I am rejoicing over Ed's options and hopeful that they will give Ed a good quality of life for a long time.

Dear Marie,

Thank you so much for sharing you experiences with us. I learn so much from your posts. Most of all, I am amazed at your perseverence and strength.

My prayers continue for Ed and you!

love,
shobha

All I can say is WOW! You are such an amazing, strong person. I have learned so much from you. I will continue to keep you both in my prayers!

Lisa

Marie, being able to stay connected through this group is just nothing short of amazing. I feel like you both are family! Your thorough report of Ed's doctor's appointment makes me feel like I was right there with you. Thank you for taking time out of your incredibly full life to keep up all informed. Much love, Suzan

Marie,
You have been in my constant prayers even tho I have barely logged in lately.

Everyone should be so blessed to have an advocate like you.

Thoughts are with you. I will be in RI in late July, will send you a private message.

Thinking of you...
 

You have been in my thougths and prayers off and on all day. Marie, I don't know much about the pure medicine involved in Ed's fight---so I can be of no help in that way, but I can offer my positive mental energy and my prayers....Hugs to you and your Mighty Oak.

Barb A.

Marie,

When I read your posts I truly wish for a miracle for Ed. You are such a source of inspiration.

Continuing my prayers for a recovery,

'lizbeth

Marie, he would not be here without you. And you would not be you without his strength and will to live. You are two truly amazing individuals who are giving all of us hope and inspiration.

I am sending you healing energy and strength (just in case you need more of it) and, ofcourse, hugs.

Love

Jacqueline

Seems like Tykerb would be the one (or w/H) to lean on considering brain mets, no?
Any access to agents that could resensitize to her2 and endocrine therapy?
i.e. this kind of thinking but up to date:
www.jbc.org/cgi/reprint/272/3/1682.pdf

Dunno if this is relevant to Ed, but maybe the drugs involved are:
1: J Neurosurg. 2009 Feb 6. [Epub ahead of print]http://www.ncbi.nlm.nih.gov/corehtml...bannerLogo.jpg Links
Brain magnetic resonance imaging changes after sorafenib and sunitinib chemotherapy in patients with advanced renal cell and breast carcinoma.

Hill KL, Lipson AC, Sheehan JM.
Penn State Milton S. Hershey Medical Center, Department of Neurosurgery, Hershey, Pennsylvania.
Object The authors report novel imaging findings associated with the treatment of sorafenib (Nexavar) and sunitinib (Sutant), 2 agents used in the treatment of advanced metastatic disease. Methods Patients with renal cell and breast carcinoma metastases to the brain were identified from the prospective database at the Penn State Hershey Medical Center and Penn State Cancer Institute. Results Four patients who received sorafenib or sunitinib after surgical or radiosurgical treatment of their metastases were identified from the database. Clinical and/or radiographic changes consisting of seizures and cognitive or motor changes were described, associated with an increase in peritumoral edema and enhancement. These findings were observed to improve with discontinuation of the medications. Conclusions The administration of sorafenib and sunitinib in patients with metastatic breast and renal cell carcinoma may lead to reversible clinical and imaging changes following surgical or radiosurgical treatment of their brain lesions. The authors hypothesize that leakage of the drug across a locally impaired blood-brain barrier contributes to peritumoral edema and inflammation, which may be erroneously interpreted as disease progression.
PMID: 19199506 [PubMed - as supplied by publisher]

Dr. Burstein presented the results of the Neratinib Phase II trial at the last San Antonio meeting.

Regards
Joe

Alright Marie! You are armed with lots of options for Ed and are so kind to list several of the for our own use. You are AMAZING!! I am thinking I like the sounds of Dr. Marie and Dr. Brenda. You ladies would kick butt!

Prayers for Ed to have strength and stamina to give his new tx a chance and for complet healing to his body.

Hugs and Prayers,
Lexi