Hello from a newbie

[TeamBurke]

Hi,

I'm Kristina and new to this site and forums in general. So here goes...

My 47 year old husband Jim,  was diagnosed with stage IV lung cancer (NSCLC, EGFR+) this August. It was an absolute shock to us as I've only seen my husband sick once in the 22 years we've been together. It was also a shock as I've been battling breast cancer since October of 2019 and we could hardly believe or accept his diagnosis on top of mine and dealing with the pandemic! With that said Jim has started Tagrisso, a targeted therapy and is responding really well. We are within walking distance to one of the best Cancer Centers in the country. We are known as "Team Burke" since the kids came along in 2009 and 2013. We have two awesome children that inspire and ignite us daily. 

I'm not what else I should be saying other than I'm happy to be connecting to a community of patients and caregivers that may help us along this journey and hopefully how we may one day help others. 

Warmly,

Kristina

[Judy M2]

Hi Kristina, welcome. Your shock at the diagnosis is shared by all of us. I too was healthy before my diagnosis in October 2019, the same time you received your breast cancer diagnosis. I hope you are doing well with your health challenge. 

Tagrisso is a wonder drug for the EGFR mutation. At Stage IIIB, I underwent chemo and radiation before starting on Tag in March 2020. Tag as a first-line treatment for Stage IV means fewer side effects for Jim. 

There are some Facebook groups (below) you might want to join. The groups discuss all things Tagrisso, including side effects, which are worse for some than others. I am one of the lucky ones with no side effects. My oncologist says I'm doing "amazing", so I hope Jim gets the same result. 

Tagrisso (osimertinib) Patients & Caregivers Group 

LUNGevity EGFR Group 

LUNGevity Targeted Therapies Group 

Any questions, we are here for you. 

[GaryG]

Hi Kristina: Glad you joined us. Like you I had two chocking experiences with cancer. Lung cancer for me and colon cancer for my first wife. Today I don't know which one  I abhor the most. I am glad Tagrisso is working for your husband and I hope it will lead him to be NED one day. I also hope that you get the upper hand on your breast cancer and enjoy a happy life with your children. I wish you the best.

[Tom Galli]

Welcome Kristina,

I'm a native Philadelphian till the Army took me here, there and everywhere. I'm also a lung cancer survivor and celebrated my 17th year of survival earlier this month. Philadelphians are a pragmatic lot and that trait is a sustainer while on the treatment and survival path. As Judy suggests, this is a great place for questions. Targeted therapy and immunotherapy are game changers for lung cancer moving the survival curve high and right. Here is synthesis of how I got to 17 years.

Stay the course.

Tom

[LexieCat]

Hi, Kristina,

I just saw your message to me and responded--I see you figured it out on your own (how to get started posting). Welcome! 

Sounds like your family has a lot going on right now. BTW, I'm right across the river in South Jersey (Camden County)--I'm being treated at Penn Medicine. Where is your husband being treated?

I'm glad he's doing well with the Tagrisso. I have no actionable mutations, so I'm getting chemo/immunotherapy. So far, I'm doing well, too--my doc is very happy with my response.

How are YOU doing with your breast cancer?

[TeamBurke]

Hi Everyone,

First, thank you all for responding, your insight is invaluable to us.

Judy: thanks for the recommended FB group to join, it's easy to get overwhelmed in looking for the right groups, articles, advice etc. 

Gary: I'm with you on fighting alongside your first love, it's heartbreaking, inspiring and exhausting all at once. May I ask what NED is? I'm guessing it's the next round of TKI medication?

Tom: a former 215'er! We really are a "special" bunch here in Philly. 17 years, Congratulations! I will review your links more closely - thanks for including them. 

Lexi: Jim and I are both being treated at Perleman. One of us is always there. We live so close to Penn it's just a 10 min walk, which was suer helpful when I was going to radiation. 

Jim has gained 18 lbs. since August when he was diagnosed and I feel him well and often. His care team seems suer happy about his response to the Tag (I started a Tag Time Happy Hour) it's where friends and family think of us at 5:00 nightly (when Jim takes his Tag)  and drink to Jim's health. I had no idea what it would become of it, but people always text, call and send funny videos etc - it has made us both feel less alone and who doesn't love positive vibes?) He has had 3 brain tumors disappear and the other are 3/4 to 1/2 the size they were. Hi lungs look like night and day since his 1st round of scans. I measure and obsess over the summery notes and images, I'll be a tech soon  He receives bone injections and that too has helped heal over his fragile hip and spine. We even got the green light to do some skiing last month and it was wonderful to fill our lungs with fresh mountain air and feel normal for a few moments. 

For me they have found 2 new masses ( one lung and one breast) but they have just ruled out the lung as not a concern and I'm goin in 3/9 for another biopsy of the breast. 

THANK YOU TO YOU ALL! Feeling grateful to have found this group. 

Be well,

KB

[Judy M2]

Kristina, NED is No Evidence of Disease, a goal we all aspire to. It means the cancer cells are too small to be detected on scans. I'm not NED but I am doing "amazing", so that's OK with me. 

[Susan Cornett]

Welcome, Kristina! So glad you found us and hope that you find everything you need on this site. You and your husband certainly have your hands full but happy to see that you live close to great care. Hope your husband's success on Tagrisso continues and that you are doing well with your cancer.

 

[TJM]

Welcome TEAM Burke! Wow. Battling two cancers in the same household! Have you asked for a family discount?

Seriously. I'm wishing you both the best and am happy to hear about both the mutation and the good responses. We have some dear freinds, the wife has just finished a two year battle with breast cancer and, like me, is in the wait and watch mode. Harder to do than either of us expected! Kind of like Lexi and I continuing to self injure ourselves, this family is like a doppelganger. Both of us had sons with the exact same disease about the same time. We knew them before but that bonded us. My point KB is please feel free to talk about your challenge. Several on here have also battled breast cancer.

For future reference. I have Large Cell (had?). Fairly rare. I had a lobectomy last year followed by a standard chemo and radiation (adjunctive).

Again. Welcome. Have your hubby join. Too many women on the board. We need more diversity!

Peace

Tom

[LouT]

Kristina,

I'll throw my hat in the ring with a "Welcome to our Forum".  You've come to a great place to share, learn, witch (when needed) and find many answers from our personal experience.  We look forward to hearing more as you both go through your journeys and helping out where we can.

Lou

[TeamBurke]

On 2/20/2021 at 4:56 PM, TJM said:

Welcome TEAM Burke! Wow. Battling two cancers in the same household! Have you asked for a family discount?

Seriously. I'm wishing you both the best and am happy to hear about both the mutation and the good responses. We have some dear freinds, the wife has just finished a two year battle with breast cancer and, like me, is in the wait and watch mode. Harder to do than either of us expected! Kind of like Lexi and I continuing to self injure ourselves, this family is like a doppelganger. Both of us had sons with the exact same disease about the same time. We knew them before but that bonded us. My point KB is please feel free to talk about your challenge. Several on here have also battled breast cancer.

For future reference. I have Large Cell (had?). Fairly rare. I had a lobectomy last year followed by a standard chemo and radiation (adjunctive).

Again. Welcome. Have your hubby join. Too many women on the board. We need more diversity!

Peace

Tom

I'd love to have him join Tom, he's more reserved than me and so I'll have warm him up to the idea. Also I think he's quite nervous to read so much about his condition. I do all the researching and advocating for him right now, but he's getting better with speaking about it. 

[LouT]

This is a hard disease (as so many are) to come to terms with.  In the beginning I didn't want to think about it, but meanwhile it was all I thought about and it consumed me.  Thank God I found this forum.  I learned to stay away from Dr. Google and speak to people with firsthand experience.  Once your husband is ready we'll make sure he feels welcome and safe here.  We're neither doctors nor counselors, but real people who have or are living with this disease, some of us for close many years.  But, he's lucky that his partner is her on his behalf and that's a good thing.

Lou

[LexieCat]

I like being here primarily to compare notes with other people who are going/have gone through the same kinds of issues. Just about any time I post about an experience or a worry, someone else (or even multiple people) here have BTDT. I let the medical pros worry about the scientific stuff. But for the practical, day-to-day stuff, you can't beat talking to other cancer patients/survivors. 

[LUNGevityKristin]

Welcome TeamBurke!  I'm so sorry you have so much going on right now.  Everyone has given great advice, I just wanted to add in the Caregivers Group on Facebook, too.

https://www.facebook.com/groups/LungCancerCaregivers

We also have virtual meetups for patients & caregivers on Mondays and patients/survivors on Wednesdays and Fridays. https://lungevity.org/for-patients-caregivers/support-services/virtual-meetups-for-lung-cancer-patients-survivors-and 

If you have any questions about support services, please let me know.  We are all here for you and your husband.

[TeamBurke]

Hi everyone,

I'm very touched by the genuine warmth you've shown me since joining. Tom, Teri, Lou & Kristin thanks for all your support and outreach.  I have joined the FB group, but believe it was for EGFR and Tagrisso most specifically. I will look again, the caregiver group will makes sense for me too. 

I'm happy to report that Jim had an amazing last appointment with his oncologist! He is responding so well to the Tagrisso and his largest tumor in his lung is about 3/4 smaller in just 6 months. The met to his brain has really cleared up as well, lots of shrinkage and many masses have disappeared in his lungs and brain.  Jim's labs came back normal and he is steadily gaining weight. The Xgeva, his bone infusions, are working too. We were able to see his bones healing over in his scans and he can do more physically without being so high risk for fractures. Other than some rash like hives on his chest and what I call "Tagrisso toes" (purple dots) and dry skin, he is not seeing any serious side effects (yet) and doing all the things and more before we found out about this diagnosis. 

Our kids have been more anxious lately, our son especially is very worried for my upcoming biopsy this Tuesday. He has seen me go through surgeries and treatment and it's unnerving to have two parents with cancer. It's been emotionally difficult to juggle taking care of both the medical and emotional needs of my family. But I finally just got everyone set up in counseling/therapy and we try to be as open as we can about it without it taking over our lives. As Jim snow says "win the day" - that's what we all work on over here.

Warmly,

Kristina 

[LexieCat]

What a great report, Kristina! Great news about all the shrinkage and stuff. I just got results from my MRI this weekend for my hip pain, and while the scan showed arthritis and a torn tendon, it also showed my tiny bone met to be "almost completely resolved"--which is great news for me! I'm glad his are clearing up.

I hope your biopsy Tuesday is good--what's the reason for the biopsy right now?

Sounds like you and Jim are doing a great job keeping the Team's spirits up.

 

[Tom Galli]

Kristina,

Indeed a fine report. To your question "What is NED" on 2/20, this may help explain cancer outcome terms for TeamBurke. Baseball soon; go Phillies!

Stay the course.

Tom

[GaryG]

Kristina!  congratulations on a fine report and best wishes for continued success. 

[LouT]

Great update on Jim!  That's the kind of news that we all like to hear on the forum.  I look forward to even more improvement in the future.

Lou

[TJM]

On 3/4/2021 at 11:32 AM, TeamBurke said:

Hi everyone,

I'm very touched by the genuine warmth you've shown me since joining. Tom, Teri, Lou & Kristin thanks for all your support and outreach.  I have joined the FB group, but believe it was for EGFR and Tagrisso most specifically. I will look again, the caregiver group will makes sense for me too. 

I'm happy to report that Jim had an amazing last appointment with his oncologist! He is responding so well to the Tagrisso and his largest tumor in his lung is about 3/4 smaller in just 6 months. The met to his brain has really cleared up as well, lots of shrinkage and many masses have disappeared in his lungs and brain.  Jim's labs came back normal and he is steadily gaining weight. The Xgeva, his bone infusions, are working too. We were able to see his bones healing over in his scans and he can do more physically without being so high risk for fractures. Other than some rash like hives on his chest and what I call "Tagrisso toes" (purple dots) and dry skin, he is not seeing any serious side effects (yet) and doing all the things and more before we found out about this diagnosis. 

Our kids have been more anxious lately, our son especially is very worried for my upcoming biopsy this Tuesday. He has seen me go through surgeries and treatment and it's unnerving to have two parents with cancer. It's been emotionally difficult to juggle taking care of both the medical and emotional needs of my family. But I finally just got everyone set up in counseling/therapy and we try to be as open as we can about it without it taking over our lives. As Jim snow says "win the day" - that's what we all work on over here.

Warmly,

Kristina 

I should have asked this earlier. How are you doing?

[TeamBurke]

On 3/4/2021 at 2:53 PM, LexieCat said:

What a great report, Kristina! Great news about all the shrinkage and stuff. I just got results from my MRI this weekend for my hip pain, and while the scan showed arthritis and a torn tendon, it also showed my tiny bone met to be "almost completely resolved"--which is great news for me! I'm glad his are clearing up.

I hope your biopsy Tuesday is good--what's the reason for the biopsy right now?

Sounds like you and Jim are doing a great job keeping the Team's spirits up.

 

"Almost completely resolved" is great news! Jim's MRi also showed a rotator cuff in his shoulder issue which he needs to see an orthopedist for. Have you asked your docs about Xgeva infusions for your bones?  

[LexieCat]

No, I haven't seen the oncologist since the infusion when I got the Zometa. Right now everyone seems to think it's plain ol' arthritis. 

My primary doc prescribed Ultram for my pain--which I didn't realize was Tramadol till I got the script filled. It was OK the first day, but the second day it made me vomit--which is the effect I generally get with opioid meds. I don't wanna take the anti nausea drugs if I don't have to, because THOSE make me constipated. 

Oddly, today I got up and I'm walking around with very little pain, even though I haven't taken any pain meds in more than a day. So who knows, maybe the Zometa aggravates it or maybe it's just inherently intermittent. I'll be seeing the hip guy next week, so maybe he can tell me more. I just wanna be able to get around without pain--especially now that we are all gonna be able soon to get out and about again. 

[TeamBurke]

Hi All,

Thanks for asking about me, I JUST found out the results from my biopsy and it's benign! We really needed this win for the family. Now we can continue with our routine treatments and take some much needed breaths. 

I'm happy to have found my here. I wish you all a great weekend. 

Warmly,

KB

[TeamBurke]

On 3/4/2021 at 6:28 PM, GaryG said:

Kristina!  congratulations on a fine report and best wishes for continued success. 

Thank you so much Gary!

[Judy M2]

@LexieCat, is it possible you have polymyalgia? It's a painful arthritis-like condition that affects all joints. You'd have good days and bad. The typical treatment is, unfortunately, prednisone for a week or so. Both my father and my neighbor have it. There's no risk factors, it just comes on suddenly. 

I get the same reaction from opioid meds but the Fentanyl patch worked well for me with very few side effects.