LiveWithCancer

Wishing you health and happiness in the New Year!

Hi, LiveWith! I posted five pics of my work, but I'm not sure all got through. I have a Web site, but it has my full name, so it may be redacted. It's www.carolradsprecher.com.

I watched the CMAs. It was a good show, I especially enjoyed seeing some of the older singers like Alan, Garth and Reba and of course my girl Miranda.

My auto correct drives me nuts. I went to a Hope summit in Washington, DC but auto correct made DC into December Ugggg

I have gone to one Hope Summit in December two years ago.

I had to contact you. Geekling was sending me all kinds of advice on how to handle my husband's cancer-what he should and shouldn't be eating etc. How I should change my cooking and food shopping. Really out of line. I finally had to tell her to leave me alone. I'm loving your responses to her. Bless your heart!

I'm sorry to hear that your friend Bud passed away. He was lucky to have people like you and his buddy Robert in his life. I hope his son will be okay. Hugs.

Hi Live With! Checking in after a long time and I see you had a reoccurance. I'm so proud of you for sticking up with what you believe is the best option for you! Phil had both whole brain and chest radiation in his original treatment plan and he continues to be in remission (miracles happen, thank God for it all!!!!). He still has an MRI of the brain and PET scan of the body every 6 months.

I'm catching up on some old WhatNext e-mails. How is your friend, Bud, doing?

Hey, Donna. I just wanted to check in with you separately from your Frustrated and Sad post. I'm sorry you and your onc are on different wavelengths. You sound like you are at peace with your decision, though. Thinking of you.

Hi, LiveWithCancer. The biopsy is tomorrow, yes? I'm thinking of you and sending prayers - as always.

Good luck with your appointment!

Donna, check your email, sent you message from Judy Morrow, on Marks passing...very sad news, we became friends thanks to you..I will miss him...John

Hi LIVE,
How are you, I hope well! My dad's second visit to his new oncologist did not go well. First, he did say that dad was not strong enough to undergo treatment; he had suffered an adverse reaction to the radiation too. Furthermore, the doctor explained that with PD-L1 dad has, and being adenocarcinoma that he would have treated dad with Keytruda. Mom and I are very upset, we can't figure out why the first oncologist didn't suggest that-- does a patient have to undergo chemo first?

Hi Live, have you heard anything from Gone West? I post on her wall once in awhile and she's always answered but not this time.
New few weeks. Lorie

Hi LWC,
Hope you are feeling well these days and enjoying your fur babies.
My dad has the same cancer as you and has had radiation and two rounds of chemo. He is 75, but I would say pretty active. He even tried to play golf the other day while in pain. We really think that the Nulasta is giving him a lot of pain. He can barely move and is in so much pain! He can't eat hardly anything. He went to the hospital and then to the oncologist yesterday. The hospital found nothing from the CT scan. The oncologist, or the nurse spok with us, mentioned that his tumors are shrinking, but he still has incredible pain. Mom and I are thinking of postponing his next chemo treatment scheduled for June 27th, and I think the Nulasta is giving him the most problems. Any advice? Thanks so much for your answers!
Dina

Hi, LiveWithCancer! How did agility go this weekend?

Hi radiation--Calcium-burns--hormones--After radiation finger and toe nails grow really fast-showing another form of calcium depletion through out the body-and the immediate are is affected quickly.

#1-check with dentist and oncologist about measures to maintain calcium
Weight bearing exercise are the best and long term best--walking--get some 1 lb to 3 lb weights. Breathe out through the mouth when lifting, and breathe in through the nose. Some people say use a 1 lb can of vegetables, but that causes carpal tunnel syndrome, because the can is too big around to grip. Cheap weight can be found at Walmart or just about any sport store for less than $10.

Breast cancers can be bothered by hormones given to cows for constant milk production-some other foods have hormones, so she needs to talk to the doctor about forbidden foods--seeing a cancer nutritionist is highly recommended by me.

Burns- some people burn right away- and for some it's minimal. She needs to call the office and make sure she knows what to get for burns.

Will she throw up?--we don't know
Will she become immediately fatigued? may be-maybe not
Will she lose the hair on her head? NO

I'm no expert-but this pretty much seems to be the consensus for everything but throat-mouth-head radiation

because of the calcium depletion-her teeth will be ultimately affected- but the main issue is---how healthy are her teeth now?

NM FELINE SAYS, "WOW, I JUST FOUND OUT TODAY THAT I HAVE ONLY FOUR MORE DAYS OF RADIATION TREATMENT AND THAT WILL END THE INITIAL SIX WEEKS OF TREATMENTS. HAD LAST CHEMO TODAY.

Donna, just wanted you to know I have been in touch with Mark, and he has like you and I started immunotherapy with keytruda, I know your Opdivo, but showing promise in the prostate world..Hope your continuing to do well...John.

here's a link to a petition for Melanie living in the White House or her paying for her own security They are trying to get a million signatures

https://www.change.org/p/u-s-house-of-representatives-make-melania-trump-stay-in-the-white-house-or-pay-for-the-expenses-herself

Hi, LiveWithCancer. We found out this morning that a good friend of ours has lung cancer. We don't have any particulars yet. Were you diagnosed in 2010? For some reason I have it in my head that you're seven years out from diagnosis. I'm just wondering because it sounds like you have been doing quite well for some time and I'd like to tell our friend that it is possible to do so. He actually sounded pretty good on the phone but if it ever feels like the appropriate time to say something I thought it might be encouraging to him. Thank you!

Dear Livewithcancer: that is a great question. Thank you for asking. The area is shiny as a cue ball. Very tender to touch. When I'm at home I always have a soft, flannel-type, turtle fur hat on. When sleeping as well.
About 7-8 years Riordan to diagnosis, I noticed a tiny dot in my hairline. Smaller than a green peas. I asked my PCP and a multitude of Doctors about it. Once in a while it was itchy, once in a rarity it would bleed.
Fast forward to being diagnosed with tnbc triple negative breast cancer. I started my neo-adjuvant chemo of ACT protocol. Once all my hair fell out, the tiny dot began to grow and grow ad grow until you see what the size it reached. It was HUGEHUGEHUGE. I was working with some Dr's from Harvard. Long story short it came back as advanced basal cell. They put me in a study. Very interesting to note, they said there were less than 100 people with this kind of advanced basal cell and........I HAD IT SINCE I WAS AN EMBRYO!!!
Can you believe that. It went on vismodegib casule chemo for six months of raging the same double toothpicks. Worst experience to date vs. dealing with the SSDI process I'm still mucking through (trial date of 22May17) and Long Term Disability beuracratic torture and mental abuse.
See that, you never know what befalls you next in life. Im dorry I dont mean to sound like a downer.You think all your efforts, energy and time is being spent to fight and heal from stage IIIb tnbc, only to find out this CRAZINESS has been sitting on your skull your entire life. It didn't get expressed until my immune system was down from all my chemo treatments taking it's toll on my body.
My poor Sister, God love her Soul. She turned green and fell sitting down in a chair at the news with her mouth agape. I can still see her face as if it were right now. Poor thing. It was just too much trauma. Our Mother had passed away 7 months prior from a horrible cancer death. It was more news than we could bare.

Less than a year after this head resection, I found another tumor. It was being passed off as "a fatty necrotic tumor" from both of my highly regarded cancer institutes because of all the surgery and radiation I'd had. I insisted something wasn't right.
I feel terrible, TERRIBLE every single day! "Oh, you've been through so much." Once I could feel the size enlarging and grown more painful, I had the whole battery of tests run. You know: MRI, biopsy and the dreaded news. The tumor IS positive for tnbc.

we are trying to get some stories from lung cancer survivors/patient, for our website/forum (all your identity will be safe), anyone who wanna share their story.


we are happy to offer honorarium of $100 for one hour interview on phone

Best regards,
Maxx.

LiveWithCancer, I can't quite make out your avatar. The avatars on this site are too small for me to get a clear look sometimes. Maybe it's just my computer. Anyway, are those bracelets? What is written on the wide one?

having a colono-endo at the same time isn't a problem. It's about 30 minutes or less for each procedure-so it totals to an hour or less. For me it was less. I was home about 10:30.

I had a large polyp removed near my anus. It wasn't there in 2011. I should get the results next week or earlier.

I haven't had any trouble with passing gas, feces-I am taking fiber at night, no cramps, nothing like that. It took 24 hours before my bowel could fill and not have an instant explosion-thank God for Depends. The GI and ERs seemed un familiar with that-IBS for many years?

I don't know if it's because of my IBS-D, but I had a lot of mucous-probabley from IBS. Anyway the polyp bled a bit more than usual. I had bowel explosion while dressing-changed Depends- Nurse had DR. look- I felt OK- alert-comfortable. Levi began walking me out- started coughing-each cough- each step bad. I went to the bath room changed my diaper. went back into the nurse and doctor. Then as I further dehydrated, vomiting and black in the mucous. So my son called- and I went to the ER. DEhydration was th main problem. I quit having explosions, passing mucous and nasties in a little over 24 hours after I got home. maybe the mucous floods cleared the blood and bile out of my system faster than normal people- who knows?

Normally some people get some bruising with an Endoscope. The doctor never told me that he biopsied my vocal chord. If I have further trouble--don't regain my voice--negative biopsy--I'm going to the bar Association and find a lawyer that does medical. he had to know that he would be taking my voice at the age of 75.

I choose Cotton because my husband and I had a Turkish Angora named Cotton. He was a love and a rascal. We had him about 12 years. He left to heaven because of cancer. As well as our Akita Hobo after 16 years. We considered them our children since we had none.

By the way what is EGFR mutation?

I have not been on this site in a long time except for reading the email updates I receive. Wow! I never knew you found out your trial drug was Nivolumab and that you are still going strong on it. I was diagnosed with stage IV NSCLC adenocarcinoma over two years ago, and have been on Nivolumab with good results for over one year. How long have you been on it altogether and what does your oncologist say about how long you can continue?

also, have you had any periodic breaks from treatment for possible "toxicity" side effects, such as elevated creatinine levels, etc.?