Sharing some encouragement: Clear scans (Stage IV)

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9/15/2010 1:43am
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Replies: 31

I feel very fortunate to say that the clear scan report I received today marks the two year anniversay since my last recurrence.  Even more significant is that it's 3 years since I progressed to stage IV via a lung met with no further incidents internally.

When I was diagnosed almost 10 years ago, I could never have imagined looking ahead this far and believe I would still be here.  But 5 recurrences later coupled with INF, vaccine trial, radiation, Ipi, and pulsed IL-2,  here I am feeling very humbled and blessed.

Over the years, this board has been a lifeline to share  the best and worst case scenarios of this devastating disease,  laughter and tears, and most of all . . amazing .friendships.  This is a difficult journey to be sure, but I can attest to the fact there is hope out there and the prospect of living with the beast as a manageable disease.

And now .. .it's time for a happy dance!!  :)  :)

Mary

Congratualtions Mary.  I depend on these Huge glimpses of hope.  I am really struggling with mine right now even though I received great scans last week also.  I can't seem to get out of my own head.  My head is my biggest battle! 

Thank you for reminding me that HOPE is what it is all about.

Take care and have fun doing the happy dance.

Shelly in SW

Hi Mary,

   Did I ever need to read your post...thanks! So happy for you and hopeful for me at the same time.....Keep on dancing!

Hugs,

Vermont_Donna

Mary,

That is fantastic news!!!! What a great milestone to accomplish - 2 years since your last recurrance!  

You had been posting while doing the pulsed IL2, are you finished with it now?  Weren't you NED when you started that treatment?  I am facing decision time next week and am interested in this.

Doing the happy dance for you, we needed some good news to be shared around here!!

Linda

Hi Linda,

I did pulsed IL-2 once a month for six months last year (March - August).  It required a 2 day stay in the hospital and really was an abbreviated version of the year long maintneance treatment that is often adminstered after biochemo (I didn't need to do that).

It was a tough choice as I had been waiting to get into another clinical trial that didn't materialize and since I had always done some kind of adjuvant treatment after resectable reucurrences, decided to do it.

Honestly, I haven't heard of anyone else doing this but I'm sure there are a few other of us crazy people out there  :)  :)

Wishing you the best of luck with your treatment decisions . .

Mary

HI  Can you tell me what is biochem treatment?

Hi I am a stage IV Biochemotherapy survivor and would love to tell you about it. I am 4 years NED. iI have my story on my profile too.

~Suzanne

Every day I wake up is a gift!

Congratulations Mary,

May you stay NED for the rest of your life.

Insert Generic Inspirational Motto Here

Mary,

 

Words can not express how happy this news makes me!!!!  Are you still dancing?  I'm still smiling.....

 

Stay Strong
King

Stage IV 7/05 Liver mets

Love it Mary - trying to get to San Ramon  in late Oct or Nov.  will keep you  posted - a celebration bfast, lunch or dinner is in order!  Love,Leni

Hi Leni, I live in Danville, and would love to be in on the celebration too! I am a stage IV survivor who completed Biochemotherapy, and pulse for 18 months and I am 4 years NED!

~Suzanne

Every day I wake up is a gift!

Mary,

Congratulations.  A happy dance is in order.

May the clear scans continue.

I really need to hear more stories like this so that it gives me hope to make it through the struggles that are ahead of me.

Bill Stage IV for the past week

Bill from Illinois
Stage IV Spine Mets, brain mets ans subq mets.
starting whole brain radiation on 11/8 and then compassionate use IPI ASAP.

Awesome news...Yes, do the "Happy Dance".

Anonymous - (9/15/2010 - 10:25am)

Great news..What is "pulsed IL2"???Thanks & good luck!

Pulsed IL-2 is usually a maintenance treatment administered after biochemotherapy.   My Dr. and I decided to do a shorter version (it is usually 12 months) of 6 months - a two day hospital stay once a month X 6.   Three different doses are administered over a period of 42 hours.   It is not as intense as high dose IL-2 but does require careful monitoring while being treated.

Hope that helps . .

Mary

Hi Mary,

Delighted to hear that you are NED!  What great news! 

You mention that you had ipi and THEN pulsed IL-2...Could you explain what exactly pulsed IL-2 is, would greatly appreciate info.  Val Stage IV with first round of ipi completed!!!

Live Laugh Love
Nothing is worth more than this day!

Mary,

 

Great to read your good news!! You and John and both making things better today.

May you never see mel again.

Rebecca

Believe

That is great news and I needed to hear it. Thank you for sharing.

Congratulations...so happy for you!

Hi Mary

i am so happy to hear the news, you give hope to so many.

best wishes

James

Hi Mary,

 If I were there I'd ask for the dance and do the happy dance with you! I am soooooo happy for you. You are a special person and an amazing warrior. I pray you do happy dances for many years to come!

God Bless,

 Jim M.

 

Hi Mary,

Your story is most inspiring and encouraging to many of us.  I hope to be where you are now, but have a long way to go.  Let me be the 3rd Jim in a row here to send many good wishes!!!!

Best,

Jim in Denver

 

So glad to hear!!  My dancing shoes are on!!

 

Lauren (mom to Jenna)

Mary,

Thanks so much for sharing your good news.  My history is very similar to yours, but I am in the middle of it instead of at the successfull end of it!  I am currently under treatment at the Angeles Clinic (John Wayne Cancer Center) in Los Angeles.  I currently have two tumors, both about 14 mm, in my left lung, and have had several others removed surgically over the last 4 years.  I just finished a clinical trial for combo of Taxotere and YM 155 which slowed growth but did stop it.  Monday I will start on a new trial, called VEGF, with a drug that works to stop the growth of new blood vessels to tumors.  I know that, as time goes by, we'll find the right combination of meds.  We'll be trying IPI next, if this new trial med doesn't help. 

Again, thanks for sharing your encouraging news! 

 

Bob (from Visalia)

Hi Bob,

 

I am just curious why your doctor just does not put you on IPI???

There is some discussion on clinical trial ethics & it seems like you are trying all these "new" trial  which is great for furthering sciences & helping with research, however, why are you not just doing IPI because it has proven to have my long term durable response against melanoma??

What does your doctor say about IPI???

Thanks for replying

Mary,

Great news!!  May your happy dance continue forever!

Krista

Congratulations Mary!! There are a lot of us doing the Happy Dance with you on this board.

Always Positive Thoughts and Prayers for Mary and Family.

Rocky (Stage IV Liver Mets)

I am very happy to here your news, Congratulations, I just finished my second round of IL-2 (I've got my fingers crossed). Take Care. -Kevin

Oh Mary, I am so doing the happy dance with you!  What a miracle!  God is so good.  You have really been through a lot but these clear scans are amazing.

 

Nancy D

Mary

Your have truely been blessed~~~~  Thank you for your encouragement we really needed it.  Been kind of a rough

week and upcoming scans in about 1 1/2 weeks.

 

Linda/Kentucky

I can do ALL things through Christ who strengthens me! Phillipians 4:13

Mary, So happy to hear your continuing good news. I, too have been NED for over 2 years and am over 3 years out from stage IV w/ lung met. I did Temodar only. I feel humbled as well.

NancyGM

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