Goodbye
 

Well, I thought I'd just make a finish like my start. I haven't had much in common with any of you; my disease has taken a very different course and I also have multiple sclerosis and other things. I have a single skull metastasis in a very bad place. I had Gamma Knife and it failed. I was at Mayo yesterday, and there is nothing else that they can do. The death is going to be pretty awful. The only hope I have is a wierd unknown Dr. Shahinian who does surgery in Los Angeles and might be willing to operate with I don't know what kind of consequences. I'm going out there in a couple of weeks. I wanted to thank the few people who have communicated with me. I really appreciated it - especially you Esther - I hope all of you do well on all the new medicines that have come out and will come out.

God Bless you havah and I am truly sorry for the way things have happened to you.

Love,

Mary Jo

HavahJ
Sometimes when we don't get an answer to our question on this site, it isn't because noone cares, it just may be no one has the answer....we are all in this to help and be supportive of each other....these are times that try the very best of our being....they can alter the way we react, respond or appear to others. I am hoping you will get good news on the met in California...seems they have many cutting edge Dr.s there. You are in my prayers and thoughts.

HavahJ, I am so sorry for the turn in events with your battle. I will keep you in my thoughts and prayers that you will find your miracle, perhaps in California. I truly believe there are rainbows after every storm in life, that's what keeps me going. Wishing you lots of rainbows.

HavahJ,

I am so sorry that you are feeling this way right now. Please don't think it a totally stupid question--is the "met" on the skull or in the brain itself? Also, where is it? My husband works in MS...

Take care,

Havah
I wish you all the best in California and will keep you in my thoughts and prayers.

HavahJ,
I too am sorry to hear about your news. I do hope that the surgeon in California can help. You show your determination by your willingness to travel far from home for treatment. I would use that same strong will to demand from your caretakers that they keep you as pain free as possible.

Thank you for sharing your story. Yes, your situation is unique, but you never know when your willingness to share it will help another member. Although I can't help you, you will continuously be in my thoughts.

Barbara H.

So Soory You Feel Alone
 

a recent article --Dr. Alan Lipton is out of Hershey, Pennsylvania(as in chocolate)
 

J Clin Oncol. 2007 Sep 4; [Epub ahead of print]



Randomized Active-Controlled Phase II Study of Denosumab Efficacy and Safety in Patients With Breast Cancer-Related Bone Metastases.

Lipton A, Steger GG, Figueroa J, Alvarado C, Solal-Celigny P, Body JJ, de Boer R, Berardi R, Gascon P, Tonkin KS, Coleman R, Paterson AH, Peterson MC, Fan M, Kinsey A, Jun S.
Penn State Milton S. Hershey Medical Center, Hershey, PA; UniversitäAdatsklinik füAdur Innere Medizin, Wien, Austria; Hospital General de Mexico; Hospital Juarez de Mexico, Mexico City, Mexico; Clinique Victor Hugo, LeMans, France; Institut Jules Bordet, Brussels, Belgium; Western Hospital, Footscray, Australia; UniversitÃ* Politecnica delle Marche, Ancona, Italy; Hospital ClÃ*nic de Barcelona, Barcelona, Spain; Cross Cancer Center, Edmonton; Tom Baker Cancer Centre, Calgary, Alberta, Canada; Weston Park Hospital, Sheffield, United Kingdom; and Amgen Inc, Thousand Oaks, CA.
PURPOSE: Denosumab, a fully human monoclonal antibody to receptor activator of nuclear factor-kappaB ligand, suppresses bone resorption. In this study, we evaluated the efficacy and safety of five dosing regimens of denosumab in patients with breast cancer-related bone metastases not previously treated with intravenous bisphosphonates (IV BPs). PATIENTS AND METHODS: Eligible women (n = 255) with breast cancer-related bone metastases were stratified by type of antineoplastic therapy received and randomly assigned to one of six cohorts (five denosumab cohorts [blinded to dose and frequency]; one open-label IV BP cohort). Denosumab was administered subcutaneously every 4 weeks (30, 120, or 180 mg) or every 12 weeks (60 or 180 mg). The primary end point was percentage of change in the bone turnover marker urine N-telopeptide corrected for urine creatinine (uNTx/Cr) from baseline to study week 13. The percentage of patients achieving more than 65% uNTx/Cr reduction, time to more than 65% uNTx/Cr reduction, patients experiencing one or more on-study skeletal-related events (SRE), and safety were also evaluated. RESULTS: At study week 13, the median percent reduction in uNTx/Cr was 71% for the pooled denosumab groups and 79% for the IV BP group. Overall, 74% of denosumab-treated patients (157 of 211) achieved a more than 65% reduction in uNTx/Cr compared with 63% of bisphosphonate-treated patients (27 of 43). On-study SREs were experienced by 9% of denosumab-treated patients (20 of 211) versus 16% of bisphosphonate-treated patients (seven of 43). No serious or fatal adverse events related to denosumab occurred. CONCLUSION: Subcutaneous denosumab may be similar to IV BPs in suppressing bone turnover and reducing SRE risk. The safety profile was consistent with an advanced breast cancer population receiving systemic therapy.
PMID: 17785705 [PubMed - as supplied by publisher]

Havah,

I'm so sorry to hear that you will be leaving us. I also regret that I was unable to offer you any useful information. You are correct that you are in a different situation that most here but please do realize that regardless of your situation we are here to offer you support and encouragement. I pray that you will be able to find a doctor who can help you. Do not give up the fight -- news treatments are being developed as we speak. I will keep you in my prayers.

Havah,

I am sorry for the things happened to you. Please don't get disheartened, there is certainly hope. Wish you all the best.

Julie

By all means try to contact Dr. Keith Black in Los Angeles:

http://www.cedars-sinai.edu/1088.htm...FRjWYAodoQfiTg

Time Magazine Article: http://www.time.com/time/reports/heroes/tumor.html

Dr. Black is a leading neurosurgeon who specializes in hard to treat or "inoperable" brain tumors. I believe Ester was treated by him.

Regards
Joe

Joe, what a sterling example of how this board works! I hope Havah sees it....

Havah -

Please continue to seek out every avenue of treatment out there. I certainly hope you contact the doctor Joe has recommended, or any other you find that may be able to help you.

Wishing you serenity, courage and peace,

all the best
Caya

Havah...
 

though I can't BEGIN to imagine what you are going through, my prayers are with you.

Rhonda

I'm glad you are going to see Dr. Shahinian, he may not be as unknown as you think. Check these 2 links:

http://www.pituitary.org/memberdirec...ianProfile.php

http://www.skullbaseinstitute.com/shahinian.htm

Dr. Shahinian is formerly from Cedars-Sinai, and seems to be pioneering some skull surgery techniques.

I'll be interested to see what you find out. Contact me privately if you would like to meet while you are in LA to see him.

You are to commended for taking the initiative of looking for other options and coming to LA to research it.

Havah
 

Havah
I also can't imagine what you must be going through and don't post all that often here but always read and learn from everyone further along this journey than I.
My heart goes out to you for what you're going through and I just wanted you to know how hard I'll be praying that you find a solution and a miracle if thats what it takes. I'm so glad too some of the other member's could offer you some sound advice, I wish I knew more to be able to do the same but please know I'm thinking of you.

Dear Havah,

Miracles do happen in California...

Bless you and your family. Please keep us posted. I do not often respond to postings due to my lack of insecurity or knowledge. I do, however, read the postings and appreciate everyone that shares their experience and knowledge. This support group has given me courage, strength and resources -- thanks to you and all !!!!

I am so glad you are going to this other doctor. You are in my prayers and please never give up hope! Let us know how you make out please. All my best.

Hello! Havah -- Hold On...
 

Havah, ?Jan, We are all here on this board for you. We have always been. And we continue to stand by your side. We are Sisters. I do not know about Dr. Shahinian, but I googled him. Heaven knows, you have been reaching out for help and answers. I saw your post asking about your specific skull problem as I too searched for you on the Internet. Good for you! The will to live is still alive within you! Your Essence is still alive. It sounds like you headed in the right direction -- L.A. Your doc above seems to be well known and highly skilled.

Also Joe's Dr. Black out there sounds like one to back yourself up as well. Please call him first thing Monday morning and see what you can set up, to coordinate.

We all care and offer our support. I wish I had more answers for you, but I can only relate to your sense of despair on a human level, having 4th stage met bc and being scared to death. When I began Herceptin (in '98) it had just been fast-tracked by the FDA in the hopes of helping desperate women given mnths to live. I met in Aug of '98. Herceptin became available as of Sept 28, '98. I started Taxotere in early Sept., told by my oncs that I could not afford to wait, the ca was spreading in my liver (observable in the short wks between biop and the beginning of Sept). I had a highly aggressive form of bc, I was told. I was HER2+ (80% -- which was the way they nomenclated it back in the day). I began Herceptin in Nov, waiting 8 wks for my next CT scans to be certain the Taxotere was working. I developed Shingles in Oct. and was denied tx. I was quite terrified, knowing without chemo I would surely die. I caught the Shingles the day after the rash broke (one spot that itched and hurt and looked like a bug bite). So I was put on the drug for it immediately. I backed that up w/supplements (from NY nut/onc guru/healer -- nutritional expert and oncologist). I used the power of my thoughts to hurry up and HEAL so I could get back on the chemo. I hadn't realized how sick I was from the Shingles since I felt so horrid from the chemo, I'd thought it was all coming from Taxotere.

My point is,(Jan, I hope I have your name right) -- Havah honey, things can look truly bleak but I took a chance of Herceptin and it has saved my life. YOU are taking a chance on these L.A. docs, and they could be your magic bullet. I admire your wherewith all to keep foraging and finding the unique help you need.

Surely the stress of all you are undergoing, physically, emotionally and psychologically, has brought you to the edge. And that alone would impact your MS, as I am guessing you perceive. Please just try your best to HOLD ON and get yourself to L.A. and what I pray (along w/everyone here who has read your wrenching post no doubt is doing too) that you will have a miraculous turnaround. Just as I did, brought back from the jaws of hell. You too, Jan, can be a walking miracle. You have to believe in miracles to be one -- so clear your head and keep on moving forward. You can do this. And you have a horde of prayers being sent out in your name HAVAH. I wish I knew where you are exactly so I could pinpoint you, but I know that the Universe/God/A Higher Power is infinitely wise and knowing and will be moved to assist you with so much loving energy pouring out to you and for you.

Please, don't say goodbye. Personally, I wish you a bon voyage, a successful trip and a major turning point in your life! May you find just what you need in L.A. And, please let us know what the docs say. At least one of them will be able to bring you back! I BELIEVE that with all my heart! Sending you a long, big hug, and much loving, healing energy, Havah... Under no circumstances give up or give in. I can feel your Essence and it is mighty strong and truly brave!
Andi