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AlaskaAngel 11-09-2007 11:27 AM

Breast cancer
 
Five years ago yesterday I had my final rads treatment in California </ST1:pafter completing chemotherapy, and drove due north with my husband. Herceptin wasn't available then, except off-label if you happened to know about it on your own and could find a doc who knew about it and was willing to write for it.

At the same time yesterday as my anniversary, my good friend across the continent from me died of HER2 breast cancer. Chemotherapy, radiation, and Herceptin hadn't worked for her from the start, and had only made her remaining time more difficult. We had talked about this many times. She is still very much with me, and I still have so much to learn from her.

In memory of my friend,

AlaskaAngel

Karen W 11-09-2007 11:28 AM

Dear AA,

So sorry for your loss. You and your friend are in my prayers.

Karen

Lani 11-09-2007 11:40 AM

I know you have struggled long and hard with the difficulty you had
 
getting herceptin and the doubts you have on the adequacy of your treatment.

Wouldn't it be lovely if in return for informing breast cancer patients of their
IHC and gene array results (so they can relax about what treatments they did or didn't get and plan what treatments they may need in the future if their tumors have not changed dramatically since they presented), they would allow donation of portions of their tumors to a tumor bank on which to do any and all testing wished with fully consent and with full disclosure of their clinical course (how they actually did, what treatment they got etc)

I think this would speed up cancer research tremendously and many researchers I have spoken with tell me that the patient privacy laws have hindered their research tremendously!!!!

Yes, some her2+s who suffered with anthracyclines will be upset if they prove TOPOIIA negative, but think of all those her2-ER+PR+ patients who were treated with chemo when their likelihood of benefiting was far smaller. If you (Alaska Angel) ended up to be PTEN negative, you could rest assured that herceptin was unlikely to have helped in the first place.

More importantly it might give you ideas of pathways which might need to be blocked should it ever, God forbid, recur.

It is not that easy a story, as the multitude of pathways and negative and positive feedback mechanisms is overwhelming, but I have read that some oncologists hold to the theory that if you can block the three most important pathways or so early on...

This is a science in its infancy it seems. But hope (lack of regrets) keeps people going (also a hope that they might be somewhat prepared/armed with ammunition should things get worse)

Off my soapbox for now!

nitewind 11-09-2007 11:48 AM

I am so sorry for your loss.
Hugs

Sheila 11-09-2007 11:57 AM

AA
I am so sorry for your loss....it is very hard to lose a dear friend, especially from this disease...know that she is at peace smiling down on you.

Jean 11-09-2007 12:17 PM

thinking of you
 
My Dear AA,
I feel your heart break...never easy to say goodby to a loved one.
I am deeply sorry that you have lost your friend. I can only say that
time does help to ease the pain, her memory will remain in your heart,
to cherish.

Kindest Regards,
Jean

lexigirl 11-09-2007 12:19 PM

AA,

First, congrats on your 5 year milestone!! That is just terrific!! I am happy that you are still doing great!

I am sorry to hear about the loss of your friend. This disease is so horrible. There is no rhyme or reason on who will recur or not. I am sorry that your friend never fully recovered from her txs. I am thankful for the herceptin and am blessed so far to suffer not more seriously.

Big hugs to you,
Lexi

fullofbeans 11-09-2007 12:54 PM

AA,

I also congratulate you for your 5 years and yet I am also sorry with your loss.

Love

Chelee 11-09-2007 12:57 PM

Alaska Angel, Please accept my sincere sympathy on the passing of your dear friend. My heart goes out to you. You have my deepest sympathy. I will be keeping you in my thoughts and prayers.

Chelee

Andrea Barnett Budin 11-09-2007 03:14 PM

For Alaska Angel...
 
Dear AA,

My heartfelt sympathy for your loss. A few years ago, my dearest friend in the world, Sue, passed on. I understand your pain. Though I knew she was FINALLY at peace, without any more suffering, I could not imagine her not still being in this world with me. I believe we will meet again, in the Spiritual Realm, and that too gives me much comfort. I will rush in to arms shortly after arriving, I have no doubt. I do believe death is not the end of our story. That our divine Soul survives and continues to be... I often look up and talk to my Sue and listen for her response. I will love her eternally, as you AA, will no doubt love your friend forever.

Sue always used to tell me that what was happening to her had nothing to do with my outcome! Surely I prayed she would somehow survive, but she convinced me that our cancers were different. And that is likely what your friend would tell you, or perhaps has. My life was touched by a remarkable Soul who blessed me with her friendship. I hope you too, AA, will try to focus on how wonderful it was to have such a special person in your life, rather than concentrate on your loss. I have too many times had to go through these losses over the last 12 years. We do not know why we have survived, but we continue on, with the accumulation of all those beautiful Spirits that have touched us so deeply. In tribute to them, we carry on, not relinquishing a single day to utter sorrow, as each of them would no doubt wish. You must at the same time as you mourn, rejoice over your wonderful anniversary, AA. We mourn with you. We celebrate with you... This is what Life is all about. Sharing the burdens and the joys...

With love,
Andi

tricia keegan 11-09-2007 03:46 PM

I'm so sorry you lost your friend and know how tough it is to get over as I also lost a friend to this disease last year and still think of her most days.
I also want to congratulate you on your five year mark, thats wonderful and I wish you many more anniversary's but hopefully happier one's...

dhealey 11-09-2007 03:57 PM

So sorry for the loss of your dear friend. She will forever now be your guarding angel. Congrats on your 5 year anniversary. It has only been l year for me and I look up to those who have survived as you have. It gives me inspiration.

tousled1 11-09-2007 05:07 PM

My sympathy to you in the loss of your friend. And congratulations to you on your five year mark!

Becky 11-09-2007 06:42 PM

Dear AA

It is difficult to lose any friend but more so when it is someone who battled a disease in which you had and are winning the battle. I am very sorry for the loss of your friend but I am very glad you are here and are able to be my friend.

I remember when I was first diagnosed, I read Susan Love's Breast Book. The end of the book deals with metastatic disease. Dr. Love commented that she had 2 patients. One (statistically) should never have done poorly but did and the other was Stage 4 from the beginning but did wonderfully, beating the disease for many years and then passed away from something else. That is the nature of cancer. Same treatments or more and one does well and another doesn't. As Lani said quite well, one day we will know much more. Until then, we can cherish the angels and the survivors because both teach us humility and give knowledge in different ways.

I am thinking about you tonight in different ways too, with great joy and in sympathy.

Bev 11-09-2007 07:09 PM

AA, Sorry about your friend. I can't wait il they find a way to beat this thing. BB

Donna 11-09-2007 07:29 PM

Dear Alaska Angel....
 
Sorry to hear about your friend, how ironic the timing. bummer. Thinking about you more lately because the apples are ready at Apple Hill..........another season of apples for you and me.....not for your friend or the one I lost (started chemo with me) - who knows how long or why or what......heck, I'm just so glad to be here for however long!

Love to you,

Donna

Debra 11-09-2007 07:30 PM

Becky -

I don't know how you do it but you always have a way with words in any situation----regardless of the post.

AA---your friend wants you to win this fight for you and her. Keep on keeping on.

Diane H 11-09-2007 10:19 PM

Dear Alaska Angel, So sorry for the loss of your friend. But I know you will always have her in your heart. Peace, and love, Diane

Vanessa 11-09-2007 11:25 PM

I am so sorry about the loss of your friend. I know it must be heartwrenching. I will be praying for you and her family.

Congratulations on your 5 year anniversary, I am just sorry that the events happened on the same day.

Lani 11-10-2007 01:00 AM

Alaska Angel
 
I am sorry if I sounded callous by discussing your regrets regarding your treatment without commiserating regarding the loss of your friend. It was just the way you phrased/introduced your friend which was so tied in to the fact that you felt denied herceptin treatment at that time.

I am sure you shared much, much more than a disease with your friend and that this loss has hit you hard.

Becky put it well..cherish both the Angels and the survivors. Isn't that what your friend would want you to do?


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