(9 replies, posted in Good News / What's Working)

What great news!! LOVE LOVE LOVE reading this post! Here's to more clean scans and a great lessening of scanxiety!


(19 replies, posted in Introductions!)

I had the sequencing done, and have yet to receive a bill. So I'm hoping Medicare and my supplement covered it. I agree it has a long way to go, but the day is near! In 3 years, so much has changed!
From the sequencing, as mentioned above, it was determined I have the same mutations as some breast cancer. And there is a trial specifically targeting this mutation. So, while the trial I am on is still working, my onc and I have decided to let the many breast cancer researchers and fighters do the first part of the breast cancer trial. I will wait and jump to that trial when the time comes.
And, I will have to add that you may have to fight for coverage from your insurance company for non-approved treatment for cc. It can be a pain, but use your onc and staff, and your insurance company's nurse navigators.

Great news! I'm happy for you! Please keep posting your good news on here... We love reading it!


(5 replies, posted in Thought for the Day)

Lainy, here's my easy... She doesn't eat the gravy!! If you don't have time to experiment, apologize to her that it is not gluten free. Sounds yummy, too! What time is dinner? If I leave now I might make it! smile


(15 replies, posted in Thought for the Day)

Happy, happy birthday, dear Marion! Sorry I missed this yesterday. I hope you had a fantastic day, and many more wonderful birthdays ahead!

Lainy, good to hear you enjoyed your lunch! Always fun to meet new NICE people, whether it goes anywhere or not. I hope it does, for you. You deserve happiness (not that you aren't happy, but...)
It was only mid nineties here yesterday. Chilly for you! lol

You can find humor anywhere! smile
Good luck with your date. May he be better than my last one. Actually, he was nice. Just not for me.

Hi Helen, sorry you had to find us. I, too, think your post was beautiful. I try to remember to appreciate every day I wake up, also. If this journey has taught me one thing it's that you never know what's around the corner.
I'm sorry Bonnie is declining so rapidly, but am glad she has her family and a very special friend to support and love her.
My thoughts and prayers go out to you and Bonnie.


(3 replies, posted in Members' Cafe)

I'm so sorry you have to go through this. I'm sorry any of us have to deal with this disease! It stinks! But please, try to focus on your life and your love. I know what I want to say, but I can't find the words....
Just know my thoughts are with you and your family. I wish this journey were easier, and, yes, it stinks! So when you need to, come on here and YELL!!!!

I had to cancel my vaca... Boo!
The onc says I should not be in contact with her for 2-3 weeks. CDC says if the shingles are still kitten-spam and haven't scabbed over, there is a chance of contagion. Especially for people with immune issues (chemo for one), pregnant people too.
I have had chicken pox, and a small shingles eruption on my arm during college. At least that's what they said it was.
Thankfully I purchased travel insurance, so I can use it another time. But I don't get to see my family. sad

Sending lots of prayers for good results with this new trial! Please keep us posted.


(5 replies, posted in Members' Cafe)

It is hard to respond to this post. I am so sorry you have to go through all of this at the same time. Loss is hard, whether it be a person who has passed or one who is still living.
I have come to realize that some people were only meant to be in my life for a period of time. Sometimes that is little comfort, but the stress of "normal" living is hard enough. Add cancer and/or personal loss and it is sometimes more than a friendship or relationship can bear.
I hope you can begin to heal soon. It doesn't necessarily mean you won't hurt, but hopefully you find your strength to keep going. Eventually it will become easier.

Thanks. My question arose because they suggested my dad get the shot.

I know this is an odd question, but has anyone had to deal with being near someone with shingles? I thought they weren't contagious, but my mom has them and my dad got a shot. They asked him when he finished his chemo and he couldn't remember. They contacted his onc.
I will be arriving Tuesday to my parents... 7 days after mom started meds. Should I be worried?
I'm not on "chemo" chemo. I'm on an inhibitor and my blood counts are good. I would worry if my platelets or RBC or WBC were low  but they are ok.
I guess I need to call the weekend staff to see if I should worry, but thought I'd ask.

The ones I know will be a drive, but the closest I can think of is cooper med center. They just teamed up with md Anderson a while ago.
Or the 2 hour drive to Fox Chase. My onc is Dr. Crystal Denlinger. I love love love her! They have teamed up with Temple.
There are a few in Philadelphia, but I would go to Fox Chase first. U of Penn is another.
And if he wants to travel a bit farther, there is NYC and Memorial Sloane Kettering, but I would not suggest Dr. Nancy Kemeny. Or NY Presbyterian , where Dr. Kato is, as far as I know.

I hope this helps.


(19 replies, posted in Members' Cafe)

Hey!! I was on here before the OTHER Kris! lol And I'm a moderator, too! Why aren't I the "STAR"???  sad
I'm 6'1"... Definitely NOT a Krissy! Maybe we can call her that! lol
I have tried to destress my life as much as possible. I don't sweat the small stuff, as we say.

I need to chime in here about MSKCC. They are a research hospital. Depending on the onc, you might get an idea about another facility. But they don't make money by sending their patients elsewhere. In my case, Dr. Nancy Kemeny would never suggest she isn't the best. I tried to talk to her about trials and she basically said... Look around and see if you find something. It's up to you.
As far as the "cherry-picking": they are talking about a specific group of cc patients getting a specific protocol. Yes, it would be wonderful if we were all diagnosed at an operable stage. Then cc would have a much better success rate. For many trials, even, they look for a specific group of cc patients. The lucky ones have success.


(19 replies, posted in Members' Cafe)

Emad, I would post a pic but I have never figured out how to do that! lol   Other than the profile pic, that is.
I tease my mom about the same thing. They live quite far away now, so I only get to see them a couple of times a year. But when my brother visits, she makes dumplings and an egg breakfast specialty. When I visit, she has ME make dumplings and the egg breakfast! :-D
By the way, I still have too much singing to do to go anywhere! But when I was diagnosed, it was a big thought in my head, and it's never quite gone away.
Dating is hard. I'm gonna try to make you laugh... When I meet people, and then tell them my deep secret, I tell them I'm not a good bet for a really long term relationship!! I know, dark humor. This is one of the toughest parts of living with this disease: when to tell and how. It's been 3years and I still haven't figured that out!

I agree with Carl about the love you have for your mom... It shines through your posts.

Oh, by the way, I think you were smiling a bit earlier when you teased me about my scooter! :-)


(8 replies, posted in Members' Cafe)

Carl and Lynn,

I know this has been such a tough road. I'm so glad to have met you both, even if only briefly. You are so supportive of each other, it has been wonderful to see that in your relationship.

Lynn, my prayers are with you now and forever. I pray for comfort, love, and peace for you.

Carl, my prayers are with you for love, strength, support, and strength as this time passes. Please give Lynn a warm heart-felt hug and kiss from me.

The break is a go! 15 days without these drugs! I'm hoping I lose 15 lbs!! lol
Realistically, I'll take 10 lbs. and the flight is booked for next week. One week from today and I'll be in Alabama hanging with my bros and their families!! I can't wait!


(19 replies, posted in Members' Cafe)

Emad, I worry about my what my family will have to endure, too. I am divorced, with no kids, so at least I don't have to worry about my children when I am gone. But most days I tell myself I am still "healthy" and something WILL be found soon!
I wonder if your mom enjoyed cooking?? Maybe she and Teddy are adding to the menu for Teddy's restaurant!

Since you are taking orders... The most sinfully chocolate chocolate fudge chocolate cake you can think of here!! big_smile


(19 replies, posted in Members' Cafe)

I can't begin to understand how you feel. But, yes, this is a good place to vent. I've done it, as well as many of our other members.
What you get here are supportive people, many of whom understand your feelings. I wish I could wave a magic wand and all your pain would disappear, but I can't. They say time heals, and I believe it is true, to a point. Hopefully the day will come soon when you can breath again, and get through a day without feeling such overwhelming sadness. Hopefully some day soon you will find a reason to smile. And be happy. A little at a time until you find your new "normal."
None of us will ever get our old "normal" back after being on this journey. But many people have found a new "normal", and I pray that you do, too.


(5 replies, posted in Members' Cafe)

Have a great time!

Newest update... Things have continued to be stable. The edema is pretty much under control with Lasix.
I spoke with Dr. Denlinger. My next scan is Monday and I get results Tuesday. As long as the scan is good, Dr. D is going to request a couple of weeks off for me, while I travel to Alabama to see family. I'm hoping they say yes, and the edema lessens on it's own. As well as the fatigue. Maybe I can get back to "normal", whatever that is!