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

[Believe51]

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.