HER2 Support Group Forums - Time for M D Anderson IBC

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Time for M D Anderson IBC

I have made my decision, I will go. I talked with their contact person yesterday and I will have to go there to get considered for any of their clinical trials.

Now I will research which IBC specialist to ask for.

Any Ideas?

I love snow as I watching it fall, fall, falling to blanket my world outside my window. God is good!!

Alice, I am so happy you are going there! That is the one place that seems to have the most research on IBC. I have IBC also and am nearing the end of treatment options. I don't know of the Dr's there, but i assume they have excellent Oncs as well as staff. I wish you the very best and will pray for you to get into a trial that will knock the socks off IBC! Let us know how you're doing. Love, Vickie

Alice, I will keep you in thoughts as you go to MD Anderson to grab the ammo you will need to go into combat for IBC. Not only will you be helping Midwest Alice, you will be helping others who are or will be walking in those shoes. May strides Alice, walk slow and breathe. I have been trying to follow your journey so please post with regular updates when you are feeling up to it. We will be watching you and praying for your best. Best of luck!!>>Believe51

Good luck Alice - I hope and pray that MD Anderson's team can kick that IBC to the curb!!

all the best
caya

My prayers are with you, Alice! MD Anderson Team has the most extensive knowledge of IBC. I am sure they will find a way to clobber IBC.

Alice,

I am happy that you are going to MD Anderson. My prayers will be with you.

Amelia

Alice, one of the ladies I know on another forum went there for a second opinion last year and is doing great. Her own onc said there was nothing he could do but they started her on xeloda/ixempra and although the treatment is tough her scans are showing great shrinkage so far.
If you'd like me to mail her to ask for a name just let me know and good luck!

I have heard wonderful things about
Massimo Cristofanilli, M.D., at M.D. Anderson in Houston, Texas.
He is a IBC Specialist.

Thanks for responses, Here is more detail on my bio.

My breast rash had gone away by time of dx.This is not very common.
.
Before treatment CT/PET:Showed shadow on my spine, gone on 2nd. We thought it was a shadow, it may or may not have been.
My second CT/PET was after first-line treatment: My onc is almost sure the ? on my hips and pelvis will turn out to be bone growth. I think any change in April scan will answer that.
The great news from my 2nd is all organs looked clear and no sign of cancer around tumor site before radiation. What a blessing of healing!

So at this point I research.

I was turned down for a vaccine study at U of Washington :( because of low muga scores, 53,43,48. My onc and Doc at u of w both agree my heart would be fine, its an FDA regulation for their study. I have found 2 or 3 vaccine studies for reoccuring cancer that have muga requirements <= 45%

Improve my muga: Join a gym. I am going to two gyms at 5:30 AM to see who has swimming lanes open. Im a morning person. I also baught my co-q10. My goal is to bring my muga above 50% What ever the out come I know my body and mind will feel better the more active I am.

I want to get in the system at the new IBC clinic at M D Anderson and see what tirals will be coming out. I want to sell a case for below adv mugas in trials. Also vaccines trials for us while on Herceptin.(like u of W trial)

I continue on my journey.

I am thinking about going on a mission trip in July. I will go with my church to Germany for 10 days and teach English to teenagers. (I'm a teacher)I have to let them know if I'm interested next week. Both my kids voted yes!! I am waiting on my onc vote, I think he will vote yes too!!! If I have a change in treatment I can do it before I go or when I get back. I vote yes!! Now it is just a matter of being excepted on the team. Please pray for Gods will. No worry, if this is not the right plan another will turn up.

Hi Everyone,
I flew out ahead of an ice storm here in the Midwest and spend 9 days at M D Anderson in Texas. Here is a up date.

I saw Dr. Cristofanilli who specializes in Inflammatory Breast Cancer
at MD Anderson He is the head of the first IBC clinic in the world.

I received good news from my PET,BONE SCAN,CHEST X-RAY AND
BLOOD WORK. 40% of IBC patients have metastasized at
the time of diagnosis. We had figured mine was in my spine. The bone scan
confirmed treated mets in the spine. I am NED So my treatments are working on the cancer and I have
no active cancer in my body.

I will continue to see my onc in town and will continue every
three weeks injections of Herceptin for an unknown length of time (years)
and now they will add Zometa to strengthen my bones. My onc is awesome. In Oct. when my heart ejection fraction
dropped too low to continue Herceptin he put me on a heart drug to bring it
up. I will be working on bring up my heart score (muga) by
exercising and making sure my cpap in working correctly.

I will be back at MD Anderson in April for a brain MRI. This type of cancer
has shown a trend to metastasize to the brain without symptoms at about a
year out. Herceptin doesn't cross the blood brain barrier so we will take a
look and go after them if they are there.

My friend Karen traveled here with me. She is a retired nurse so she
likes hospitals and this place is amazing. She has been great support for me
and we have found out we are well suited traveling partners. We are talking
about taking a trip out west or to the Holy Land.

I have much to be thankful for and continue to be amazed by Gods plan for
me.
1 Corinthians 10:13 "No temptation has seized you except what is common to
man. And God is faithful; he will not let you be tempted beyond what you can
bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

Thanks to everyone for your posting. I learn so much for all of you. We are such a supporting group. And a big hug and thanks to Vickie H. for your strength and the love you have showered on me.

Keeping the faith,

Time for M D Anderson IBC

M D Anderson is a great idea !! You go girl !!
Best of luck, good health and don't forget to keep putting one foot in front of the other.

Alice,

I am so happy that you are getting such great care. Awesome news that NED is sticking around. I have many times thought of being seen at MD Anderson. I have Kaiser health insurance, so I think it would be an out of pocket expense. I have heard that their facility is really great.

Lexi

Awson news. Thanks for posting.

Alice so glad to hear the good news.

Dr. Cristofanilli was the one I posted about to you. I have heard WONDERFUL things about him. I'm so glad you were able to see him.

Alice,

This is great news. I know going to MD Anderson has helped to give you some peace of mind.

God Bless You, and I hope you have a great day.

Amelia