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AmyLCA's Discussions

Issues with Food Smells and Taste Changes?
5 Replies

Started this discussion. Last reply by Donna Jan 8, 2014.

All about pain issues - need your feedback!
16 Replies

Started this discussion. Last reply by LadyWithNSCLC Mar 28, 2012.

Talking to kids about lung cancer - How did you do it?
4 Replies

Started this discussion. Last reply by jc123 Dec 23, 2011.


AmyLCA's Page

Latest Activity

AmyLCA posted a blog post

Live Near Philadelphia? Research Study on Lung Cancer and Depression

Hello!A researcher at Fox Chase Cancer Center asked us to post her study. It requires attending an in-person session at the cancer center, which is in Philadelphia, PA. If you live nearby and are interested, please contact them at the email address or phone number below. Thanks!______________________________________________________________________________________________Fox Chase Cancer Center is conducting a research study for lung cancer patients that includes:• A free counseling session for…See More
Apr 17, 2014
AmyLCA replied to Praying4mama's discussion Chylothorax
"Hi there!  I wish I had answers for you. I don't know if a pleurodesis is used in this situation - based on a little bit of reading I did, it is a procedure that is sometimes used along with the thoracic duct ligation (I assume the same as…"
Apr 15, 2014
crimson--Stage four. left a comment for AmyLCA
"I will call her soon Amy, Right now, I am dealing with it. Thanks, Don."
Jan 11, 2014
Donna replied to AmyLCA's discussion Issues with Food Smells and Taste Changes?
"Hi Amy, i lost my taste buds 2 days after my first chemo. It was hard to eat my favorite foods and i lost my appetite. It finally came back about 2 months after i finished chemo. I still cant eat anything spicy or strong tasting. Some foods that…"
Jan 8, 2014
Maribeth Wall replied to AmyLCA's discussion Issues with Food Smells and Taste Changes?
"Hi Amy -  I never lost my taste buds while I was going through chemo.  There were foods, that just the smell of them would make me nausea.  Funny thing is I managed to get through all different chemo's, radiations, and clinical…"
Jan 8, 2014
DavidatpMOD replied to AmyLCA's discussion Issues with Food Smells and Taste Changes?
"This is another one of the chemo issues that is probably different for everybody but I certainly had a big difference in my taste buds. I could not eat most foods. My wife worked very hard to find things I could tolerate. It's been over 4 years…"
Jan 8, 2014
jE1964 replied to AmyLCA's discussion Issues with Food Smells and Taste Changes?
"I am having this issue right now. It always starts about a week after treatment. It's hard to explain about the taste buds. All I can think of is that it's like after you burn your mouth on something real hot. It doesn't hurt after,…"
Jan 7, 2014
John H MOD replied to AmyLCA's discussion Issues with Food Smells and Taste Changes?
"This is a good question for sure. It's been quite a while for me but I remember having the metallic taste from chemo. Couldn't tell you which was the one that caused it for sure but I think it was the cisplatnum. I do remember also that it…"
Jan 7, 2014

Profile Information

Why are you interested in this topic?
I am a lung cancer advocate

A little about me

Welcome to My Page! I thought I'd share a little about me, since we'll be hanging out for a while.

I have worked for Lung Cancer Alliance for over 4 years in some way or another. Before that, I spent several years working in developing countries doing child health and nutrition program work for US government projects overseas. I have a Master's degree in Public Health.

I grew up in Alexandria, VA, right outside of DC. I live in DC now. I'm a true city girl. My dad still lives in the house I grew up in. My younger brother also lives in DC.

When I was a senior in college, my mom called me to tell me that she had kidney cancer. That was a tough phone call. She had surgery and she was okay. But two years later, they found a spot on her lung. It was lung cancer, and it didn't have anything to do with her kidney cancer.

She had a lobectomy at Georgetown University. No chemo. We thought it was all over. But then a year and a half later it came back in her bones. She started chemotherapy, and when it was all over, her doctor (not at Georgetown) said that it didn't work, and there was nothing else he could do.

Luckily my mom was stubborn, so she went elsewhere and enrolled in a clinical trial. I think it was Iressa. It didn't work. She then tried taxotere. That's when she was diagnosed with breast cancer - not related to any of the others. They kept treating her with taxotere because they said they would have used it for the breast cancer anyway. Or maybe they just weren't as concerned about the breast cancer and the lung cancer was more of a threat.

A year later, she was diagnosed with a rare form of breast cancer - inflammatory breast cancer. She had a double-mastectomy. We were able to bring her home for 24 hours and then had to take her back the hospital with the help of hospice. She passed away, comfortable, and surrounded by tons of family and friends 24 hours later.

During those years, I spent a lot of time as her primary caregiver. I also went to a cancer support group for patients and caregivers and learned a lot from their experiences.

For the past few years, I've done volunteer work for an organization called the Wendt Center for Loss and Healing. They do a camp every Summer for kids who have been through a traumatic loss. The kids are paired up with an adult "buddy" who is with them all weekend. Their "buddy" has gone through the same type of loss that they went through, so my first year, I was matched with an 8 year old girl whose mom had died of colon cancer. It was really helpful to her to see that I too had lost my mom to cancer and I was okay. So she will be too! I think it's helpful for anyone who loses a loved one to illness will be okay. Sometimes it's hard to believe that. Through my experience with The Wendt Center, I've learned a lot about the grief process.

In my free time, I have far too many hobbies. I love to travel, I love cooking and photography, and I take far too many classes.

My mom was a landscape designer, and I try to help my dad maintain her beautiful garden. I'm glad he's still in the same house, because when I'm gardening, I always feel like she's right there next to me.

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Comment Wall (12 comments)

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At 5:11pm on January 11, 2014, crimson--Stage four. said…

I will call her soon Amy, Right now, I am dealing with it. Thanks,


At 4:48pm on January 7, 2014, crimson--Stage four. said…

Sure Amy. Have had one of them, but they didn't last long.


At 4:12pm on January 7, 2014, crimson--Stage four. said…

Amy, I go tomorrow for my fourth treatment in nine weeks, Chemo only. I get it every three weeks, then a PET CT SC after every three Chemo's., during all thi so far, I have three cancers in my left lung, two of which has reduced in size by 50 per cent, and the other one reduced by 2%.  I have built a hate for anything I can smell.  All food, and only eat what I can force down. I have pain in my knees, and trouble sleeping, taking anti-nausea meds as needed. It is being  days of pure hell... 

Can you tell me if this is something that just goes with it, or; this  is the way it will be?

I have mentioned it to you before there are two growths on top of each of my kidneys, which has came about after the original cancer diagnosis., and treatment started.. Hopefully, tomorrow we will find out what that is..

It would not be so bad if I could sleep at night, and did not walk around like a zombie all the time.

I know this is a crazy question, but; I need to know something from people that have been down this road also, I talk to other people here, but; they go away after a few chats. and I have found out nothing about the  aforementioned things.

Also,  I have treated high blood pressure, and it does o.k. during the day time, but at night it goes up on its own. And my wife and I have to stay up most of the night trying to get it to come down.

Thank you for your time.

Don-Stage three B...

At 10:37am on December 4, 2013, Christine32 said…

Thanks Amy!  His name is Benny.  He will be 2 yrs old in February.  Yes, he has given us so much joy and has helped us to survive the pain of losing our beloved 11 yr old yellow lab, Cosmo, to cancer several years ago.   They would have been great buddies.  Both lovers/cuddlers.  Being a beagle, he is very mischievous, but that is part of his charm.  It is virtually impossible to get upset with him when he looks at you with those big brown eyes.   He makes me smile.  So glad he could share the "Benny effect" with you.


At 1:07pm on June 22, 2011, Mari said…
Great a typo in the first sentence.  Thanks Amy!!  :P
At 1:06pm on June 22, 2011, Mari said…

Thank Amy!!  Wearing the funky hats and odd toe socks made me feel like I was helping to put a smile on some pretty sad faces. My Dad is wearing the first hat I got...she is called   I don't know if it said that on my page, I'm still trying to wrangle my way around :D  I had skullanimal hats and sweaters, Tim Burtons skelington and etc...

Peace, Love and Prayers~

Mari :D

At 4:06pm on April 28, 2011, momofthree said…
Thanks!  They are great kids, as well.  They are all really kind and helpful--a joy to be around...and great motivation to kick this nasty beast called NSCLC!
At 1:12am on January 13, 2011, Kris10 said…
Just read your page.  WOW!  and I thought my mom had been through a lot with breast and lung cancer (lung also unrelated to the breast).  Your mom sounds a lot like mine, always a fighter.  You give me hope that when my mom goes, I'll be okay.  I'm glad I found this site.
At 1:37pm on January 5, 2011, John H MOD said…

Hi Amy, the occasion was my oldest son's wedding. It was over Labor day weekend. All went well. Glad that is over. The pic is my whole family. What a great time we had! Thanks for the compilment. Made my day!


At 8:13pm on May 23, 2010, Shatzee said…
Found elsewhere...Managed to post that pic., but im a rookie and could not post the one i wanted...

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