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Just returned from Mayo today following my regular 6 month check-up. The CAT scan showed two new 4 mm spots on my right lung. One was in the plural cavity, one in the middle lobe. A PET scan is scheduled for this Friday. They drew blood for CA 15-33 today, so I do not have those results. My onc seemed very concerned.

I need input on treatments others have had. Have you gone back on Herceptin or had radiation treatments?

Thank you in advance for any helpful advice you may have for me. I have always drawn strength from this board.
Sandra

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Oh Sandra,

I hate that you are dealt a recurrence. I like the idea that one had about finding out the genetics of your tumors.

Can you join a TDM1 or Perjeta clinical trial?

I hope one of the board members with experience with lung mets can chime in.

I love you girl!

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Thanks 'lizbeth,
Dr. Tan did mention both of them. We won't know for sure until the PET is run if it is in fact a recurrance. I am trying to tell myself that it is just from reflux, but how did one get outside the lung?

It is very scary. I feel terrific. I just cannot believe it. Maybe it isn't. I should know by Friday afternoon late.

You know you have been very special to me. Thanks again for your support.

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Hi, Hoping it is not a recurrence. You are one of my Stage IIIc warriors going 5 years NED with 21 positive lymph nodes. I have always thought the chance of a recurrence after 5 years is slim to none. Let's hold that thought and pray for good news.

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Sandra,

Gosh I don't have scans or blood tests since I was stage II. Did you have any symptoms. If not that is very scary. I worry about not feeling the cancer growing, not having anyway to detect it, and ending up stage IV.

We are pretty close in history, but different in treatments. I had skin involvement with the Pagets. I had 3/15 nodes. I only did Taxotere, Herceptin and the GP2 vaccine.

Ugh, this is the tough part and I feel so close to you - its almost like having a recurrence myself.

It looks like we are praying for a lot of Christmas miracles.

I am so glad the Mayo Clinic is looking after you. Are the scans in follow up for a clinical trial, or is it the standard of care?

Look kiddo, I'm counting on you to be around for a long, long time!

I looked for the genetics post, but haven't found it yet. I hope our fellow board member will repost. The more ideas, the better.

Sending even more love (and freaking out a little)

Your buddy, 'lizbeth

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I am so sorry to hear about this. I have been in contact with Ilan from Precipio. They do the tumor profiling everyone has been buzzing about. He sent me the form as I am getting a sample sent up to him for profiling. If you pm me and give me your email address, I can send it to you and email Ilan letting him know you may be calling. He's a great guy. Also, I believe it's covered by insurance. Ilan told me that they have yet to get denied by an insurance co. He also mentioned that once the forms are signed off by your Oncologist, Precipio gets the sample within 3 days tops. So it's quite fast.
Let me know how I can help. Here is Ilan's info:
Ilan Danieli (CEO at Precipio)
Tel: 203.787.7888 ext. 536
Email: idanieli@precipiodx.com

You're in my prayers.

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Sandra I sincerely hope this isn't a recurrance - prayers going up
Jenny x

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Sandra, Gods blessings to you. I also am hoping and praying for the best for you. I am praying very hard. Peace my friend, Nancy

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Sandra,
Sending prayers and calming love your way. Try not to worry till you KNOW what's true, and what could be a mistake. Remember a few months back...they were sure I had liver and bone spots to keep my brain mets company. After a few days, a review of the scans, and a followup prodedure, showed they were both false alarms. Maybe yours will be too, and even if it's not...we have great meds out there just in case you need them.
And, my friend...I think the fact that you FEEL good is a GOOD sign that things are better than they seem.

Try to relax...breathe easy...focus on that Christmas miracle.
With love,
Denise

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My best wishes and thoughts and prayers are with you.
K

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Many, many thanks to all of you. You are the best!

Jill, I know what you mean. I am 4 and 1/2 years out and this just blindsided me. I coulndn't wait until my appointment next summer so I could begin to be free to do some traveling not related to health care. That five year mark was just around the corner. Well, it's not for sure ~ I just have to wait until Friday before I give up all my dreams.

Denise, you are right. They have to confirm it first. Thanks for reminding me that sometimes they can be wrong!

Karen, Nancy, and Jenny, thanks for all those prayers. I can feel them.

Europa, my onc said they are too small to biopsy right now but I really thank you for that info. I will store it in my brain for future reference.

'lizbeth, I cannot find the words to tell you how much you have inspired me. Thank you so much. The PET scan is for positive diagnosis. At first he wanted me to come back in Feb., but you know me. I wanted to know as soon as possible so treatment could begin. So, he ordered a tumor marker blood test and the PET scan. He ordered it for yesterday but that department was swamped and Friday during their lunch was the first appointment they could come up with. I should know something by late Friday. He is to call me that afternoon when they post the results on the computer.

Thank all of you again. I am trying to stay busy with all my Christmas chores that have not been done. I am praying for a Christmas miracle.

Sandra

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Sending prayers up!

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Lifting you in prayer right now, Sandra. :)

Paula

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Sandra,

Is there a term for premature panic? I think I have that.

Oh - wouldn't that be a great Christmas gift, to have the PET rule out cancer. That is so awesome of them to give up their lunch hour so that you can have the scan.

Tumor profiling - that is the phrase I couldn't remember.

Wow, that is the awesome thing about this board. So nice to see the enthusiastic support.

Sending up prayers on your behalf,

'lizbeth

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Please be my No. 4! I already have 3 friends whose docs were certain they had lung cancer/lungmets. One of them even had part of a lobe removed. They all turned out to have benign lumps/bumps/scars. So I am holding on to that thought for you. Please keep us posted, so we can exhale...

Jacqueline

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Thanks again. I cannot believe all this support! You guys are the greatest. I had a group of friends come over for prayer for me this afternoon. It is such a comfort.

Jacqueline, I sure hope I will lbe #4! That would be the greatest gift ever.

I have also had a couple of pms from Joan who had radiofrequency ablation in '08 for a couple of small lung mets and has no more. She has given me great hope for treatment other than chemo.

I also contacted my vaccine study nurse at Wake Forest, 'lizbeth. After talking with her, I feel much better. She is a doll. She said they do biops on that size nodes and encouraged me to ask for one. She also told me several of her patients are having strange scans that are truning out to be OK. She also told me they do the radio thingy up there. All this has helped calm me down considerably.

Thanks Paula and Kellennea. Prayer warriors make wonderful friends!

Sandra

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Add my prayers to many others.

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Don't take it personally but may you NEVER JOIN us the stage 4 sisters here, we do not want you, so you have to stay stage 1 or 2.. no choice.

My prayers are with you, stay as calm as you can, I know difficult.

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Dear Sandra

I am thinking about you and praying too. Have faith - it could very well be nothing at all.

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Sending my prayers too, Sandra.

Barb A.

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Praying, Sandra! Would be great if those spots are just residual from an illness. I had them, from bronchitis. They were described as glassy.

- Penny

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No Stage 4 for you, but hoping you are Jacqueline's #4!!!!! Standing in the gap for you and believing this is much ado about nothing!

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sending my prayers for you....Please have faith...it will be okay....

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My prayers are with you Sandra...please never falter in your faith.....

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I have wonderful news for you! I will NOT become one of your stageIV sisters, FullofBeans! At least not just now.

My CA 15-3 markers were the lowest they have been at 15.5 and nothing lit up on the PET. My onc wants to keep a close watch and rescan in 2 months, but I feel that is overkill.

I cannot begin to tell you all how much each of you mean to me. I knew I could get support, advise, and love from you'll (I am from the south), but I did not know how much and how much it would mean to me.

Everyone keeps saying how wonderful this board is and I always thought so, but now I know so. Please have a Merry Chistmas. I know I will.

Love,
Sandra

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Such wonderful news, Sandra! Enjoy the sense of relief and have a wonderful Christmas!

Barb A.

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Yippee! And again I say Yippee!

I am so happy that your PET scan did NOT light up like a Christmas tree!

This great news is something wonderful to celebrate. Merry Christmas and Happy New Year to my best vaccine buddy!

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Best Christmas present - what fantastic news and thank you so much for sharing this with us. We celebrate with you and now can say a few prayers of thanksgiving. When I saw the message and then read your news I was so excited and talking so loudly to myself that my husband came in the office to see what was the matter. Oh my - that's a line from "The Night before Christmas" isn't it - and out on the lawn there arose such a clatter----but all happy noise. Happy Christmas, Sandra, to you and all who love you.

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Yesssss!!! Great news. Merry Christmas to you! Relax and Enjoy!

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Sandra I am so happy! You are going to have a wonderful Christmas and forget the nightmare. Hugs. Michka

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Continuing with prayers and best wishes.
Sounds like you have had some wonderful advice. Give us an update when you get a chance.