Update on Barb 12/28
 

Barb has been doing well on the Haloven she started Oct 23rd. She has also endured 5 weeks of radiation with a short break at Thanksgiving. We drove her up to Chicago to visit family and take in a Monkees concert at Chicago Theater with her youngest daughter Ashley. With the rads behind her things look pretty good the mets are all but gone the worst spot will take some time to heal. The lump in her neck is gone thanks to the Rads and Haloven. I occasionally check in to see how you all are doing and thought Id better give an update on our warrior here in NC. I hope you all had a wonderful CHRISTmas and pray the New Year is better than the last one .

Re: Update on Barb 12/28
 

Mike,
Thank you for the check in and I am so happy to hear that Warrior Barb is Groovin to the Monkeys! What a wonderful memory of classy girls time for Ashley. Such a great way to end 2012; rocking your way into 2013. Happy New Year!
Love Kim from CT

Re: Update on Barb 12/28
 

Mike,
This is the best news ever on Barb! I am sooooo happy for you! Jumping for joy!
Karen

Re: Update on Barb 12/28
 

Mike,

Thank you for the update. Please give a hug to Brab on my behalf. Hope next year is better for alll of us. Hugs.

Paty

Re: Update on Barb 12/28
 

What a great news! Nice way to start a New Year!!
Tammy

Re: Update on Barb 12/28
 

Oh, thank God for the good news! I was wondering about you guys.

- Penny

Re: Update on Barb 12/28
 

That is such great news after all you and Barb have been through!

Re: Update on Barb 12/28
 

Good News Mike.Praying that good news will continue

Re: Update on Barb 12/28
 

I'm so happy about this great news.

Please give Barb a hug for me. It was really nice to meet you guys!

Paula

Re: Update on Barb 12/28
 

Great news! Thanks for the update (remember to add it to your signature.)

What a wonderful way to start a new year!

Re: Update on Barb 12/28
 

Mike,
Thank fer thee update - great news!

Re: Update on Barb 12/28
 

Thanks for staying in touch. When I saw your post I told my husband that you were another stalwart among us. Keep the faith

Re: Update on Barb 12/28
 

What a wonderful Christmas miracle!

Re: Update on Barb 12/28
 

Thanks for sharing the good news. All the best to you, Barb and the rest of the family in 2013.

Re: Update on Barb 12/28
 

great news ! you both went through hell this yr. thanks for the up-date . We will keep Praying for you all !

Re: Update on Barb 12/28
 

What a difference a week makes. It appears Barbs mets are rearing their ugly head again and the nodes around the base of her neck are flaring up as well. Called her Onco this morning as she wasnt scheduled for another treatment until next week. Waiting for approval on another approach not sure what but he has something up his sleeve. I will share more when I know something. We would appreciate all the prayer we can get at this point. I dont thinks theres many more options out there.

Re: Update on Barb 12/28
 

Hi Mike,
I am just sick at heart to hear how Barb is. You must feel like you are on a rickety roller coaster; full speed.
I feel compelled to suggest a couple of things that perhaps you have already tried.
One is to consider sending Barb's tissue to a lab like Precipio Diagnostics for a Tumor Profile.

http://www.precipiodx.com/physicians...profiling.html

This is a paragraph from their web site:
The Yale Tumor Profiling Lab is the most cutting edge tumor genotyping technology clinically available today. Offered exclusively by Precipio, the panels are tailored specifically to each tumor, resulting in a uniquely focused and targeted diagnosis. The report provides you with immediate insight into the nature of the mutation and delivers a strong basis for identifying the appropriate treatment plan for each of your patients.

No other panel has the following benefits which help optimize the patient’s treatment:

Revelance - You receive a report that presents ONLY clinically-relevant information, focusing solely on ¹69 actionable mutations

I had this done myself. The outcome? A mutation was identified along with a drug and clinical trials that target that particular mutation. I am happy to share contact info and a sample report if you are interested.

The other thought I had is that Dana Farber has a breast oncologist that specializes in Young Survivors. Her name is Dr. Ann Partridge, MD
Founder and Director, Program for Young Women with Breast Cancer
Director, Adult Survivorship Program
Certainly Barb would be a Candidate for a second opinion with Ann.
But I think my first priority would be to identify the exact mutation Barb has so, if possible, the oncologists can target it with the appropriate treatment.
Again, I am happy to provide any info via pm if you would like.
In any case, may you both find and savor a few moments of peace while you continue along your path together..
Hugs,
Kim from CT

Re: Update on Barb 12/28
 

You're in my prayers.

Re: Update on Barb 12/28
 

Im very sad to hear that. Many prayers and lots of positive energy coming your way. Lets hope the doctor has your miracle right there up his sleeve.

Re: Update on Barb 12/28
 

Kim

I actually talked to Dr. Sklar at Precipio this afternoon. I had approached Barbs Onco with the the idea a couple of months ago when the TDM- didnt work. Her doctor felt that there wasnt much evidence it worked well for breast cancer and that it had been somewhat successful for other types. Dr. Sklar agreed but suggested Barbs Onco call and talk to Precipio about a breast panel and he also mentioned four mutations that could be identified. I have faxed all info to her Onco and am anxiously awaiting a response. For now we are waiting on insurance approval for another treatment he had in mind. She wasnt do for her next Haloven until next Tuesday but we felt we shouldnt wait until then.

Re: Update on Barb 12/28
 

Mike,
I am keeping you, Barb and your family in my thoughts and prayers.

Re: Update on Barb 12/28
 

Mike
I think Kim's idea of tumor profiling is great. Also, you should be able to get Perjeta now with the new guidelines set forth by the NCCN over the last two months. Perhaps the combo of T-DM1 and Perjeta could work?
Thinking of you,
Karen

Re: Update on Barb 12/28
 

Hi Mike,
Barbs oncologist is right; it may not work well for breast cancer; but then again... it may. Shoot, if you send tissue to Precipio (or a similar lab), the worst case scenario is they find nothing and you end up where you are now. ON THE OTHER HAND, they may identify a mutation and a treatment or clinical trial that will successfully target it - and you are light years ahead of a "try this and if it doesn't work; try that" approach. I vote for pushing for a tumor profile - you have nothing to lose and much to gain.
At the end of the day; I pray that you are able to set aside the feelings of anxiety and urgency and immerse yourselves in the loving joy of your relationship.
Hugs,
Kim (from CT)

Re: Update on Barb 12/28
 

Mike you and Barb are always in my prayers. I pray you will find the right combination to destroy those dam mets. Peace my friend, Nancy

Re: Update on Barb 12/28
 

Talked to Barbs Onco assistant yesterday they have agreed to send slides to Precipio and ask insurance for access to Perjeta. Im told because she had Neulasta last Tuesday she couldnt have any treatment this week so were shooting for early next week. Maybe if they get her started on Herceptin again and the Perjeta they can get it contained. She hasnt been on Herceptin for a while just briefly when he tried the Navelbine again. Apparently my insurance wouldnt allow it while on Haloven and also when they combined Tykerb and Zeloda. Im alittle anxious about the Precipio thing I felt they should send a fresh biopsy from a new site like the nodes around her neck rather than a two year old biopsy. Also insurance doesnt recognize Precipio.

Re: Update on Barb 12/28
 

I am praying, Mike and rooting for you guys.

Paula

Re: Update on Barb 12/28
 

I'm with Kim on this. Wishing you well,
Karen

Re: Update on Barb 12/28
 

Hi Mike, have been following your battle , praying hard. profiling sounds good, what about a2nd opinion , maybe at Duke. I know Dr. Kim Blackwell there is known for thre t dm-1 work , but they probably do a lot of bc research in general . have experience w/ many combos, herc /pert, etc. God Bless, Protect , and Heal Brother !

Re: Update on Barb 12/28
 

We have a second opinion at Presbyterian Hospital Charlotte scheduled for Jan 29 they have a breast specialty program thats been highly recommended. For now we are waiting for approval of Perjeta and all looks good there. Still not sure what to think about the profiling thing. The impression Im getting here is its still going to point towards Her2+++ and treatment will not be any different?????????????????????

Re: Update on Barb 12/28
 

I was thinking of it as both a re-biopsy , as bc can change growth factors from er+ to her2 +, etc., and profilingcould help direct tx from there . sorry if i wasnt clear, glad you are getting 2nd opinion at top facility. God Bless

Re: Update on Barb 12/28
 

Hi Mike,
I am just leaving for vacation but so glad I checked in because I want to refer you to an earlier thread (November '12) that describes my experience with tumor profiling - I share this simply to give you an example of the information that MIGHT be gleaned in addition to Her2 ++++.
http://her2support.org/vbulletin/sho...hlight=mamacze
Good luck and God speed to you both.
Kim (from CT)

Re: Update on Barb 12/28
 

We have approval for Perjeta!!!! Barb starts Perjeta/Herceptin/Taxotere tomorrow morning. It wont be soon enough for her Im sure. There is considerable progression in the Lymph Nodes around her neck and under her left arm with a little recent edema in her left arm. We have her arm wrapped and cant wait to get in there in the morning. Thanks again for all the prayers and encouraging words. Keep the prayers coming

Re: Update on Barb 12/28
 

Mike,
I hope this is the magic bullet and Barb does well on this. I look forward to hearing you post good news with perjetA and tax combo!

Re: Update on Barb 12/28
 

Good news, hope this combination gets things back under control quickly and I too am looking forward to hearing you post the good news!

Re: Update on Barb 12/28
 

Yay! Good news. Hope more follows!
Leah

Re: Update on Barb 12/28
 

Let's hope this is a winning combination. There's a lot of reason to hope.