New Battle
 

Not related to this group, but you have all been so kind as I've asked for support for my dear sis during her HER2 journey.....I was told yesterday that I have a cancerous melanoma in my right eye. I had breast cancer twenty nine years ago, endometrial cancer four years, and now a third one. Not much known yet. I'm waiting over this Thanksgiving holiday for arrangements to be made for The Wills Eye Institute in Philadelphia, to see me. My dear sis and her hubby will go with me and my husband. First prayer is that there are no mets...most obvious places are liver and lungs. If none, then I'm hoping they can use the radioactive plaque to irradiate the bugger. Back to scans and exrays every six months, if I'm lucky and there isn't distant involvement right now. I'd really appreciate your prayers, ladies. Thanks.

Barb A

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Barb, you'll have my prayers and good wishes for your trip.

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Oh Barb I'm so sorry, sending good wishes for you! x

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Barb,
Praying for you, hoping this problem is just local and has not metastized. Pls. Keep us posted and do not loose hope, there are always treatments out there.

Love,

Paty

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Thank you for your well wishes, Paty, Tricia and MA. You all know the awful initial fear.....that's where I am now. Hope to get to Philly soon and not drag out the wait.

Barb A.

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Barb,

First of all, Happy Thanksgiving!

It's not fun to have multiple cancers. But it happens - especially to those of us who have had certain types of genes (or gene defects! :)

Hang in there. The plan you've mentioned sounds pretty good. Take good care of yourself and come here for support anytime!

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Dear Barb,
I am sorry to hear your news. Of course I will keep you in prayer. It is upsetting to have to wait until after the holiday weekend. Please keep us posted.

Kindest Regards,
jean

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Dear Barb,

I'm hoping things go very, very well for you.

(((Hugs)))),

Paula

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Hi Barb
Just wanted to share some information with you. A couple of weeks ago a television program featured a young women with a melanoma also in her eye. Apparently it is quite rare however once they had removed it and given her treatment her prognosis was reported to be very good due to the pathological type
In the meantime I am praying for you and hoping you have this type also
Ellie

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Thanks so much for the continued wishes....it is amazing how much comfort comes in the form of warm support from friends. Ellie, I hope my path type is the same as the one you saw on tv. Praying hard for no mets, at the outset. If this tumor isn't too large, they will implant a plaque shield that will deliver radiation over a period of days. Will stay in accommodations arranged by the hospital and then have the plaque removed. The tumor is to continue shrinking over a period of three months. There may be additional treatment if needed. If tumor is too large, the eye will be removed. Not a happy thought, but I'm aiming for life, so what has to happen will happen to give me my best chance. Thank you so much for your love and support. I'm scheduled for a consult at 7:30 at Wills Eye. Hopefully surgery on Thursday. I'll be quaranteened in a motel room for the time the implant is in, so I'll take my computer and hope to be updating.

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Barb,
Very sorry to hear this news. Please stay strong and keep us posted. Know that you are in our thoughts and prayers.
karen z

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Barb,
Thinking positive thoughts for you! And, of course, sending prayers too.

Looking forward to reading your post surgery updates!
All the best,
Denise

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Thank you Lani - very informative.

Barb - wishing you a very successful treatment and Class 1a melanoma.

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Not much to add except ever since I was a child in the Phila suburbs I have heard only wonderful work being done by Wills. Great that you have access.
Keep the faith.
PS. what were your symptoms? I have a nasty thing on my eye right now.....

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Hoping and praying all will go well. Gods blessings to you and your family. I look forward to your future posts. (I pray all are positive.) Your friend, Nancy

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Thank you, thank you, thank you, everyone. Bonnie, I had floaters and flashing lights in my eye. Thought it was a detached retina. Saw an opthamologist in the practice that had done my cataract surgery in January and he referred me to a retinal specialist on the same day. That doctor called a world class Wills doctor and they made some very rapid arrangements. We will leave tomorrow so as to find the facility before our 7:30 a.m. appointment on Monday. I am taking some ativan, so I alternate between relative calm and falling apart. Again, thanks for your well wishes...they mean the world to me.

Barb A Prayers gratefully accepted!

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Keeping you in my thoughts and prayers Barb, stay strong! (((((hugs)))))

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Barb,
Praying for you, as they say "good things come in small sizes" now let's pray that the tumor is small and you will have those three months for it to shrink.
The last few years there has been a huge leap in eye surgery and treatment. You are in a top notch facility, so with prayers and great treatment we send you healing wishes.

Kindest Regards,
Jean
PS the waiting is the hardest.

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Barb, it is always amazing how the things we share here impact each other. I asked about your symptoms because I have a infection/growth, probably a nasty sty, on my eye. But your reply has given me pause. I have recently developed major floaters in both eyes. One doc called them "impressive'. They have been seen by MDs and deemed to be just bad floaters, but I never would have thought of other ramifications. I am sorry you are having this experience but grateful that we can learn from each other and be vigilant. We are here to hold each other up and share experience, strength and hope.
Keep the faith.

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Barb,

Man. I am not happy at all to hear your news. I hate Melanoma and I hate that it has darkened your door. Lani's informative post regarding the two forms, Class 1 or 2, leads me to pray yours is Class 1.

I have not been able to get up north in quite sometime. My mother's care has grown considerably and she is loath to leave her chair let alone her home so I cannot bring her along to the cabin. As soon as I am able we'll get together to celebrate the forthcoming good news that I am believing you will hear from Wills. Until then hang strong even though I know that is monumentally tough at the moment.

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Prayers going up!

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Thinking of you today, Barb.

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Hi Barb, I happened to be seeing my eye doctor/surgeon today and I mentioned your situation to him. He said what a top hospital Wills is. He also commented about all the advances in recent years to treat this sort of melanoma. It sounded like the sort of message we have had about how Herceptin changed the playing field for us. So I hope for only good news. Keep the faith. And keep the Ativan handy, too!

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Hello ladies. Well, we spent eight hours at Wills yesterday, and just heard that U am on their surgery schedule for Thursday. The docs will place a radioactive placque implant that will remain for about seven days, while hubby and I , sis and brother in law hang out in the center city Philadelphia hotel. I'm confined to my room for that time. Released to home the day they remove the plaque. Having genetic testing done that gives info about liklihood if spread......mixed feelings. Then going back to my old oncologist for follow up. Also have a retinal specialist in my area who will put shots of avastin in my eye. There is als an oncilogist at Jefferson whose speciality is ocular melanoma metastasis....hope I don't need hum! Thanks for listening, my her2 friends. All prayers gratefully accepted.

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Dear Barb,

I am praying hard that all will go well with you at Wills and that there will be no mets, and that recovery will be thorough and as soon as possible. Bonnie, please know that I am praying for you, too. I am praying for all to have the peace of God in their hearts, and praying this for myself also. May God bless you and I hope with my whole heart that all goes well.

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Barb,

I am believing you are Class 1 and so lots less worry about mets! We'll get together and you can show me the Hillsgrove covered bridge (haven't found that one yet). My son is up your way hunting (hanging at the cabin and drinking beer more then hunting is my bet!) and will bring down a Christmas tree from the 42 Market. Theirs are cheap and they have some small enough to fit on a table which I prefer these days (less to put up and take down!).

Will you have much discomfort associated with the implant in your eye? I surely hope not! When you get bored of the hotel room's 4 walls, type us an update. What did you think of Wills? Impressed?

Blessings to you, my friend. I am praying.

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Barb, I'm in your corner hoping and praying all will go well. Gods blessings to you and your family. Looks like you have some great support!

Peace my friend,

Nancy

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Good luck tomorrow, Barb! Prayers for an easy breezy procedure. You have not been far from my thoughts. Praying for good news.

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Adding my prayers. Remember to take deep breaths...

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Checking in, Barb, to see how you are faring. Hoping that you are not in pain. Praying for good results!

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Hello ladies. I am doing ok physically, since my implant. Afraid to take the vicodin, cause I am so allergic to pain meds. Using tylenol and advil, and some atavan. Implant done Thursday and comes out Thursday. Even possibilities of radiation damage to the eye doesn't bother me as much as fear of mets. I can know that one can only live in the now, but keeping a reign on a racing mind is so, so hard. I would appreciate your continued prayers, both for healing and for peace.

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You are in my prayers. Gods blessings to you.

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Praying. Glad to hear it is not too painful. How long do you have to hang in limbo as far as pathology and scan results? I do not blame you one bit for the nerves. This roller coaster is so hard. Hang in there.

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Hi Laurel.The genetic testing takes three months to come back. They are saying to arrange liver scan and blood draw within a few weeks. Back to my old oncologist, if he'll see me. Appointment with retinal specialist in two months and back to Wills in four. As I undersrand it, the worst genetic profile means a 50% chance for metastasis. Best profile means 20%. Gotta just pray and not borrow trouble....much easier to say than do.

Thank you to all you dear ladies who have sent words of kindness and support. I reread them at 3:00 this morning.

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Plaque removal in a few hours. Trying hard to concentrate on getting through what is immediate. I'm very grateful for your kind messages and especially your prayers.
Barb A

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Ameebarb,just want to send gentle hugs and let you I'm thinking about you. I'm originally from the S Jersey area and have had family members treated at Wills.. Outstanding facility!
I'm just wondering if your Onc has discussed genetic testing for the BRCA genes? Their is a link between BRCA 2 and ocular melanomas. This might give you additional options for your treatment arsenal. Forgive me if bringing this up brings you more angst.. but I felt it important to bring up.
If you like, I would be willing to post articles relevant to BRCA and OM.
Praying for good result
Gentle hugs,
Marcia

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Hi Marcia. I agreed to genetics testing, but the counselor didn't go into huge detail regarding which genes were being tested. I'll find out more when the results are in, and we talk. Being done at Thomas Jefferson.

Barb A.

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Barb I love how you asked for prayers for healing and PEACE! What a wonderful concept. We all so need plain old peace
Keep the faith

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Barb, Thinking of you today and hoping youre not in too much pain and that procedure went smoothly yesterday,
Jefferson is an outstanding facility! If BRCA testing is done will be sent out to Myriad Genetics (they hold the patent on the test)and should take a couple of weeks.

Gentle hugs,
Marcia