1

(10 replies, posted in General Discussion)

Dear all,
I too, think this is a normal fear for any of us to have. I think the trick is....to not stay paralyzed in that fear. We all know how precious each day is and how important it is to be positive and on and on and on......and while I am a firm believer in all of that, I am also human and that fear creeps back in because we all know the possibility is there for growth/reoccurrence. So maybe if we can lean on each other and encourage each other it won't be so bad in those moments. I have had mixed feelings the past few appointments......I am excited that they don't want to see me for four months, but dear Lord, that is a lifetime in the cc world. I grew accustom to every one or two month scans the past two years and while I am grateful for the break in scans, the comfort of knowing what was going on was always so reassuring. Hang in there and I am glad we are not alone in this anxiety.
Melinda

2

(4 replies, posted in General Discussion)

Oh Duke....I wish that I had some advice for you. Chemo was never a good option for me so it is hard to weigh in on this matter. I did have growth with gem alone. I am hoping that you can get some answers for the trametinib trial. I just wanted you to know I am thinking and praying for you to get the answers for your next plan of attack! Stay strong and keep up your awesome attitude! You bring so many smiles to this board!
Melinda

3

(6 replies, posted in Introductions!)

Dear Kris,
I am sorry for your loss. Your mother sounded like an amazing woman, and you sound like you are just like her! Prayers for peace, comfort and strength to you and your family.

4

(15 replies, posted in Introductions!)

Dear Nola,
Congratulations on the STABLE report! I will be keeping you and Neil in my thoughts and prayers for continued good news and successful hernia repair! Take care....Melinda

5

(9 replies, posted in Members' Cafe)

Great joke!! I laughed out loud as well! Can't wait to tell my husband, I KNOW he will get a chuckle out of it!
Melinda

Dear Vicki,
Sending love and prayers to you for your CT results next week! Stay positive and don't worry about the hair....I promise it grows back! I thinned a ton with the gem/cis treatments but lost it completely (twice) with the immunotherapy chemo regimen.....It comes back curlier and curlier every time!! Stay positive and keep up the good attitude, that is definitely half of the battle!! Take care and God Bless YOU!
Melinda

7

(6 replies, posted in Introductions!)

Dear Jim,
Welcome to this site....and bless you and your wife! We are all here to lend support, information and encouragement! Please don't hesitate to ask anything here. All questions and comments are welcome! We learn from each other. Please don't lose hope....each day is a blessing and remember you are not alone in this fight. Hugs and prayers to you and Kimberly!
Melinda

8

(15 replies, posted in Introductions!)

Dear NolaPat,
Welcome to this site. I am so sorry to hear about your husband. I have been fighting ICC for 5 years now. You will find much support here! There are so many people here willing and able to share information and support! We all care and hope to encourage and help in any way we can! I will pray that your husband's pain is relieved....hang in there and please stay in touch. Hugs to you!
Melinda

Thanks Gavin! I will add it to the scrapbook! smile

Moontje,
I add my congratulations to your news as well!! I am so happy for you and Tom! Celebrate this victory and take it for all it is worth!!! Tell Tom to keep up the good work. Hugs and prayers...
Melinda

11

(27 replies, posted in Members' Cafe)

Awesome news! Here is a YIPPEE for you!

12

(6 replies, posted in Members' Cafe)

Lainy - you are so beautiful! Inside and out! Wrinkles shminkles....they just keep coming for me too, but I will now think of them as my badge of honor as well! I hope you have a wonderful date and can't wait to hear about it!

13

(40 replies, posted in Clinical Trials)

Thanks Lainy! I love your YIPEEs!! By the way, I will be in your neck of the woods November 6-10th! Hoping for some of your warm weather while we are there!

Thank you Matt, Darla, Gavin and Judy....I do so appreciate all your support! Slow and Steady does win the race!!

Dear WMIL from Holland ...I am so glad you could view the webinar. I hope that they are able to perfect this treatment and then have it available world wide!! I will definitely keep my eyes and ears open for any future news. I also welcome you to this site and would love to hear more of your story as well! Thank you so much for your support and please know that we are all here to support you as well! I will keep you in my thoughts and prayers!

Love and hugs to you all,
Melinda

14

(40 replies, posted in Clinical Trials)

Hello everyone!

I made it home from the east coast late Sunday night. My one year post treatment checkup went very well. I met my new fellow at NIH, my husband and I did our best to break him in....we get a new fellow every year and so far I have been so blessed to have had some really great doctors! The scans showed that everything was STABLE, some slight shrinkage to some tumors in my lungs! They said they fully expect it to slow down and that it could stay this way for years! I am so totally okay with that...I can live quite well the way things are. I am due to return in February for my next checkup. My husband grilled them with questions, he always likes to have a plan B, but basically we have to take it one checkup at a time.

We spent a long time talking with Eric Tran, my research scientist. He is such a great person and I just can't say enough about him. He told us they are working on some exciting things.  I told him to hurry up! We need some more breakthroughs for this disease. I do have hope and confidence that they will continue to make progress.

When I arrived home, I had an email that stated the official measurements did show that the tumors were slightly smaller than 4 months ago and still on a slow and steady decline! I will take slow and steady any day!! smile

I just wanted to update everyone and to let you know that I am always thinking and praying for everyone fighting this fight!

Lots of hugs,
Melinda

Thank you so much!! It sounds like it was an incredible event!! People like you guys make a difference for all of us!
Melinda

Dear Colleen,

Please give your dear mother a hug for me! I am so happy for you and your family! This is a HUGE success! You know my feeling on immunotherapy.....now if we can just get the brilliant minds of the world to get it to work for everyone....all would be great!

Also please thank your mother for her participation in this trial and bringing so much future hope to others!!

All my best, hugs and prayers,
Melinda B.

Dear Colleen,

Please give your dear mother a hug for me! I am so happy for you and your family! This is a HUGE success! You know my feeling on immunotherapy.....now if we can just get the brilliant minds of the world to get it to work for everyone....all would be great!

Also please thank your mother for her participation in this trial and bringing so much future hope to others!!

All my best, hugs and prayers,
Melinda B.

18

(87 replies, posted in Introductions!)

Matt,
Congratulations and keep up the good work!! Always love good news and reasons for hope! Thank you and take care!!
Melinda

19

(6 replies, posted in In Remembrance)

Dear Janet,

Sending my prayers to you and your family for peace, strength and comfort during this most difficult time. All my prayers and hugs for you.....Melinda

Dear Kim,

I am so very sorry to hear about your mother. I am glad you got to spend some quality time together. Please give your dad a hug for me and one for you as well. You and your family have always been in my prayers and will continue to be!

You are an awesome daughter for doing this fundraiser.....I wish I had some advice for you! Let me know how I can contribute....would love a t-shirt!!
Peace, comfort and strength to you.....love and hugs,
Melinda B.

21

(4 replies, posted in General Discussion)

Dear Patty,

I have had several mets to my lungs since very early on in my journey....almost 5 years now. My oncologist treated them and tumors in my liver after resection with chemo. First was Gem/Cis, then Gem alone and then Taxotere. Before I found the immunotherapy trial, I started to get short of breath and I had a chronic cough but that was two years into having them. As of now...I am hoping they still are shrinking. I will find out in two weeks at my next appointment.

Congrats on treatment break for 11 months! That alone is great news! That is great that Dr. Javle is on top of things, it sounds like you are in great hands! I know it is scary to get any news of new growth but I am so glad that your faith is not shaken, God is with you! Keep up the healthy lifestyle, it always helps. Keep the Faith, hang in there and know we are all here for you!
Melinda B.

22

(6 replies, posted in Members' Cafe)

Matt and Julie,

That is what it is all about.....appreciating the simple things that tend to get taken for granted so easily. Life is so short....Life is so amazingly beautiful when we stop to smell the roses! I do appreciate so much more than I used to....I feel so blessed with each new day I am given.

Matt...I have a shark bite scar as well!!! That is how my kids and I have always described it...it is fun to say it when your lying on the beach in Hawaii!!

God Bless you all...lots of love,
Melinda B.

I say kick it while it is down....stomp it, demolish it....go get em.....I picture your mom with boxing gloves on pounding the heck out of this stupid cancer!!!
Melinda B.

24

(5 replies, posted in General Discussion)

Hi Porter,
I had a PET at beginning of my diagnosis...and then again when mets showed in my lungs 4 months later. Both times it lit up with metabolic activity. I then went until June of this year....over 4 years before they decided to do another one. I think this last one was specifically to see if the spots on my liver were  scar tissue or necrotic......and thank God the spots on my liver showed no metabolic activity.....light show in the liver is no longer showing!! The light show in my lungs is still playing but not as brightly as it could be!! For me it was a good peace of mind to know that there was no activity in the liver at this time. I think each doc has their own personal preference. I have heard of people who have had several PET scans throughout their fight. I also think that insurance may play a part in how many they cover in a certain timeframe as well.

Congrats on good scans and blood work! New normal  is good.....just takes time to adjust. I always remind myself when I am tired and think I shouldn't be.....that it is my sign that I need to rest....at least now I feel that I have more of a reason to be tired than just chemo.....like living life...and life is hard work and so worth the effort!!
Take care and God Bless YOU!!
Melinda B.

25

(80 replies, posted in Introductions!)

Dear Olga,
I am so sorry for your loss of Norbert. I will be praying for strength, comfort and peace for you and your family. I will also keep your sis in law in my prayers.....hugs and prayers to you.
Melinda