Waiting in line at MGH pharmacy to pick up some meds necessary to fight my cancer. One in particular is necessary to prevent seizures that may occur as a result of my radiation. I don't want that! Full speed ahead in killing this tumor!
#diecancerdie
#lcrf
#LCSM
Just before getting strapped in for treatment
#3
. I'm halfway done obliterating my cancer. I'm enthused! Play list today included Sia's Unbreakable. Also I received a cozy blanket. I love those blankets.
#diecancerdie
#lcsm
#lcrf
Out dining at Clink celebrating completion of Round
#2
of radiation. Cancer, you have a date with the executioner. Soon. Real soon. And I can't wait!
#diecancerdie
#lcrf
#lcsm
Today was another "off" day of radiation. We decided to drive to Mystic CT, where we visited the famous Mystic Pizza and walked around. I know I'm destroying my enemy, cancer, even while sightseeing. It's a bonus!
#diecancerdie
#lcrf
#lcsm
What's the best type of brain surgery? The one that is cancelled because all of your brain mets have shrunk, including one scheduled to be removed today, in the 11 days since you started taking 1800 mg alectinib and 800 mg capmatinib.
#lcsm
#TTLC22
I started my 5th round of radiation this week. When I finish in 2 wks, I will have been away from my family nearly 12 weeks over the past 5.5 yrs for radiation treatment alone. This doesn't count 3 brain surgeries, lobectomy, biopsies, chemo, and TKI. Surviving LC is hard.
#lcsm
Today is an "off" day, which means that I have a day for my brain to rest in between radiation treatments.
I used it to sightsee in Boston. There's no point dwelling on why I'm here, or how often I come. I found the
#kingtut
immersive experience interesting.
#diecancerdie
#lcrf
Today is my four year cancerversary of
#lungcancer
. Diagnosed stage 3a via a freak car accident. Now stage 4, and dedicated to improving the treatment landscape for lung cancer patients, hopefully in time for me to benefit.
#lcsm
#433aday
On my way to
#asco23
to learn more about
#lungcancer
so I can help other survivors and myself. I've had 3 brain radiations and 5! brain surgeries since my last one (2019).
#lcsm
#diecancerdie
SEVEN years ago today I found out via a trauma scan from a near head-on collision that there was a mass in my lung. Initially dxed stage IIIa, I've been stage IV since Oct. 2016. My kids were 2 and 6 at Dx. 1) of x
#lcsm
🧵
Celebrating with a peppermint shake my good scan results! First scans post radiation treatment. It will be 12 months for me on Capmatinib and Alectinib combo next week!
#lcsm
Progression
#8
confirmed today. We have a preliminary plan that involves surgery and being patient
#1
, again, for increase dose of alectinib and capmatinib. Fingers crossed that it works. I'm emotionally fatigued from a long day.
#lcsm
Today I am grateful for my children Rhys and Fletcher. They definitely didn't sign up for a Mom with lung cancer but they provide me so much strength. They are the reason I can't give up and I won't.
#lcsm
#lcam
So I started posting about
#lcam
on was Nov 1. My health took a turn for the worse, making it impossible. BUT instead I'm choosing to focus what I'm thankful for. First off my husband Tillman Nechtman. He saved my life not just once but twice in space of 24 hours the ER.
#lcsm
.
@nygovcuomo
just said New York will open up vaccination eligibility to those with comorbidities beginning Feb. 15 -- great news for
@lgreco_ny
and the many New Yorkers like her.
Also on this "off" day from radiation. We visit
@mysticseaport
for some fun. The huge anchor there reminded me that tomorrow, I'm going to continue to sink the cancer. I CANNOT WAIT.
#diecancerdie
#lcrf
#LCSM
I busted out of
#massgeneral
after brain surgery for the second time in a little over a month. Thankful for the care I received there. Now waiting in Boston to receive my trial drug. Here's to a smooth 2020!
#lcsm
I'm waiting in the hotel for my scheduled time later this morning for brain surgery. I can't wait for more lung cancer funding! Patients desperately need it. Complete the link below and urge.everyone else to do so as well.
#lcsm
Today I am thankful for getting my EVD out of my head and being moved out of the neuro ICU. Between losing hair to radiation and shaving pieces for EVD placement and of course the surgery, my hair is quite the sight. But I see the glimmer of light at the end of the tunnel
#lcam
I want More lung cancer finding so much that I'm willing to post this. I'm posting unflattering picture of me in the ICU post two brain surgeries. Please help below.
#lcsm
@mcuban
Today I'm thankful for my medical team, headed by Alice Shaw. Earlier this month I was in crisis and they came through in a major way. Words cannot express my gratitude.
#lcsm
Unbelievably unacceptable presentation going on by
@cityofhope
. Lung cancer is preventable? Tell that to
@VirginiaMByrne
(dead- no risk factors). Or tell it to me (neversmoker)
#aacr20
, you can do better.
#lcsm
As I sit with my edema swollen feet up at the
#TTLC20
conference, I'm struck with how few of the MDs actually thank the patients who make these studies possible, usually at considerable expense (physically and/ or financially) to themselves.
#wematter
#lcsm
Today- August 1, is
#WorldLungCancerDay
. It is also my wedding anniversary. I dream of a world in which no lung cancer diagnosis is a terminal one. I dream of spending decades more with my husband, and raising my children.
#beatlungcancer
I'm ringing in the New Year in Roma, grateful to be alive, and healthy enough to be alive. My New Year's resolution: survive in decent health. If I dare, it's to be Cancer Free in '23!
#diecancerdie
Pleased at my recovery from my 8th brain surgery. I am not pleased that the bugger tumor was unable to be completely removed. Although I understand why that is the case. We need better therapies for people with Met amplification!
#lcsm
Today I'm grateful to have made it home. My mobility and eyesight have been affected but I'm assured that it will be temporary. Added bonus: no 6 am blood draw.
#lcam
#brain
#lcsm
I am incredibly grateful for the outpouring of support that I have been given in response to me tweet post my first recent radiation. It keeps me inspired to keep positive though the next week and a half of radiation treatments. I KNOW we will kill it.
#diecancerdie
#LCSM
Another day, waiting for radiation
#4
. I'll admit, I didn't sleep well. I miss my kids, even that rascal of a dog Linus. We're driving back at noon.
#diecancerdie
#lcrf
No, I'm not OK. It's not OK to deny the vaccine to high risk individuals while giving it to low risk individuals who happen to work for the *right* employer.
#lcsm
@NYGovCuomo
#bcsm
#covid19ncancer
I just had a long conversation with a patient who just was diagnosed with lung cancer this week. She deserves to live if she becomes infected by covid-19 too.
#ourlivesmatter
#lcsm
Today I am thankful for my husband Tillman. Besides being the best husband EVER, he literally saved my life twice two weeks ago today when doctors at ED made some grievous errors because they thought I was a drug addict. Happy Birthday, Sweetie!
THESE are the pills that I take every day at the ripe old age of 47. The top are my cancer pills, the middle ALL the pills I take to manage side effects from the cancer, and the bottom supplements. It's 49 pills a day.
#lcsm
t5: Doctors can PLEASE PLEASE advocate for lung cancer patients to receive adequate treatment. I am not afraid of living or dying, but I AM afraid of not being given a fair fight.
#LCSM
Stuck here in bed. Moving my head hurts. This recovery from my 8th brain surgery has been probably the most challenging yet. I will prevail... Eventually.
#lcsm
Today I am thankful that I am likely going home today. I still have visual disturbances and need to get past the PT and swallow people. But there is no place like home!
#lcam
#lcsm
According to the World Health Organization, there were 2.09 million cases of lung cancer last year, and 1.79 million deaths worldwide. For those wondering it's the number one cancer killer worldwide.
#lcam
#lcsm
So, scan results reveal a classic case of swelling due to the radiation I had in early October. Steroid treatment prescribed. It's working. I'm feeling the tips of my fingers on my right hand for the first time in months.
#lcsm
#diecancerdie
Today, I'm driving to Boston for scan that will determine if I'm experiencing my 8th progression, which may require surgery, radiation, drug change, or maybe all of the above. I'll live to fight another day but this fighting thing is getting old. 4)
#lcsm
Feeling good enough after radiation last week to do some gardening and trim some hydrangeas. Fall foliage looking good too! Ordering out was a compromise.
#diecancerdie
#lcsm
For
#FathersDay
, my husband wanted a Magic 8 ball. My 8 year old asked it, within 2 minutes, if I was going to die from lung cancer. A sober reminder that lung cancer hangs over our entire family. I'm pleased to report he didn't get a straight answer. I'll take it!
#lcsm
My mottos for the past 7+ years with
#lungcancer
: 1) Don't be a victim; 2) We deserve better. As I prepare to deal with my 9th progression (brain surgery Tuesday), requiring me to miss my son's 10th birthday, I ask YOU to help people just like me.
#lcsm
Another day in the life of a lung cancer patient. In ER with woman screaming next door, "HELP ME!" Help her is right. I'll be out soon, although not soon enough.
#lcsm
Scan day! Super excited to see at Mass General Chelsea imaging a poster about lung cancer screening. Screening can reduce your rate of death from lung cancer up to 60%.
@MassGeneralNews
#lcsm
#lcam
Please share like your life depends on it. LIVES DO DEPEND ON IT. Churchill: Why won't New York vaccinate the vulnerable?
#lcsm
#bcsm
@NYGovCuomo
via
@TimesUnion
I'm really enjoying listening to the kids at my house for a playdate. So grateful that I'm back home from radiation so I can enjoy these little things. Feeling good! Here's to many more playdates!
#diecancerdie
#lcsm
Yes: I too am on first line alectinib and my tumors too shrunk 75 percent. Oh, and I didn't go to Mexico. I'm still on Alectinib 2 years 5 months later.
#lcsm
Incredibly irresponsible piece by
@DailyMailUK
. Article mentions in passing pt w/ mets lung cancer got alectinib then attributes response to $40K trip to Mexico for coffee enemas, sauna, etc. False. Oncologists/advocates pls RT.
#lcsm
@IASLC
@lungevity
So I went for a long weekend to meet up with friends in Montreal and whose picture do I see in a restaurant other than
@chrisdraft
. That guy is everywhere!
#lcsm
THAT'S IT. I've noticed recently a lot of hair loss, and this is before the expected patchy hair loss from the radiation. I realized the culprit was the steroids I've been forced to take because of the tumor I have been radiating. DO NOT mess with a girl's hair.
#diecancerdie
Rare?
Leptomeningeal incidence is almost 10X that of glioblastoma.
Yet, the number of trials available for those patients is 1/3 of that for GBM.
Eye-opening slide by Dr. Priya Kumthekar from
@LurieCancer
.
#MSKBRAINMETSCME
Update: have PICC line and pump I've named Larry. Cannot possibly get rid of Larry soon enough. Other than that, just dealing with brain surgery and capmatinib. And Christmas. :)
#lcsm
Something hotly debated among lung cancer patients is whether to get a flu shot. This study, looking at patients taking immunotherapy, says it is OK.
#lcsm
#WCLC2019