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-   -   Update on Barb 12/28 (https://her2support.org/vbulletin/showthread.php?t=56934)

MikeF 12-28-2012 03:07 PM

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 .

mamacze 12-28-2012 05:23 PM

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

KDR 12-28-2012 06:53 PM

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

Paty 12-28-2012 08:04 PM

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

tammymarie1971 12-28-2012 08:34 PM

Re: Update on Barb 12/28
 
What a great news! Nice way to start a New Year!!
Tammy

Redwolf8812 12-28-2012 10:06 PM

Re: Update on Barb 12/28
 
Oh, thank God for the good news! I was wondering about you guys.

- Penny

Mandamoo 12-28-2012 11:07 PM

Re: Update on Barb 12/28
 
That is such great news after all you and Barb have been through!

pibikay 12-29-2012 04:05 AM

Re: Update on Barb 12/28
 
Good News Mike.Praying that good news will continue

Paula O 12-29-2012 06:00 AM

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

Jackie07 12-29-2012 06:20 AM

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!

chrisy 12-29-2012 09:11 AM

Re: Update on Barb 12/28
 
Mike,
Thank fer thee update - great news!

BonnieR 12-29-2012 09:26 AM

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

Mel3 12-29-2012 09:32 AM

Re: Update on Barb 12/28
 
What a wonderful Christmas miracle!

ElaineM 12-29-2012 05:49 PM

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.

phil 12-29-2012 06:41 PM

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 !

MikeF 01-07-2013 02:07 PM

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.

mamacze 01-07-2013 02:46 PM

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 ยน69 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

Mel3 01-07-2013 05:06 PM

Re: Update on Barb 12/28
 
You're in my prayers.

KsGal 01-07-2013 05:20 PM

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.

MikeF 01-07-2013 05:56 PM

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.


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