LaurenH

WOW, I am so happy to hear that there is another treatment possibility for him.  I wish you and your husband the best in this new part of your journey.  Maybe you can get books on tape/cd/etc to make the long trip a bit more bearable?? Take care!

Jennifer,
Many hospitals have very reasonably priced "hotel-like" rooms for folks undergoing outpatient treatment that requires an extended stay.  Call the trial hospital and see if they have this form of accommodation. Moreover, there is the Boston Hope Lodge that provides reasonable accommodation pricing for cancer patients and family members.  Here is the link.
I hope this makes the process easier for you.
Stay the course.
Tom

That's great news, Michele! I am happy for you and your husband. Thank you for sharing an update!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi bes,
I'm glad to hear you finally got some information and that your husband has a treatment plan. Hang in there!  Let us know what we can do to support you.
Bridget  O

Hi all, thanks for the care and replies...
Jay is home, spent 12 days in hospital, did get the stent finally and seems to be doing okay.  He's still in pain, but not as severe.  Had some congestion and slight fever last night, but both are better this morning.  The stent helped his middle lobe, but apparently his upper lobe is just screwed until we can find a chemo that works...clinical trial in Boston starts next week...
Hope you all are well...and your loved ones...
Jennifer

Wonderful news Michele!
Stay the course.
Tom

Whew!   I can imagine how relieved you both must be that chemo is over.  I will hope along with you that he keeps drinking water and eating and that you don't worry too much. And also that he is NED. Hang in there!! 
Bridget O

Hi Bootsnsaddles,
Welcome to the forum. If you hit the "Forums" tab at the top, right under the Lungevity header, you'll get a list of Forums and the first one is "Introduce yourself". On the right side you'll see an orange bar "Start a new topic" . YOu can start one and inroduce yourself there. I look forward to hearing your story.
Bridget O

Hi, JustMe,
Just wanted to check in and see how you and your husband are doing. Please post an update when you can, even if it's just to vent. We are here for you and happy to offer encouragement and advice.
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi, bes,
Your husband is lucky to have his own personal helicopter! This is a tough disease and I'm sure he is very grateful for your support. I'm glad you've connected with so many of our members already and have gotten answers to some of your questions. Please feel free to keep exploring the discussion boards and blogs and join in the conversations when you're ready. I am also happy to help you find more information and support resources through LUNGevity, so do not hesitate to message me. We'll be thinking of you and your husband this week. Please let us know how the appointment goes on Tuesday!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi, bes,
Your husband is lucky to have his own personal helicopter! This is a tough disease and I'm sure he is very grateful for your support. I'm glad you've connected with so many of our members already and have gotten answers to some of your questions. Please feel free to keep exploring the discussion boards and blogs and join in the conversations when you're ready. I am also happy to help you find more information and support resources through LUNGevity, so do not hesitate to message me. We'll be thinking of you and your husband this week. Please let us know how the appointment goes on Tuesday!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Ray,
I really like your strategy -- fighting with a definitive goal in mind, the win!
My wife is the target of my whining and she is a lot less diplomatic than your doctor.  One lung or two, she reminds me I still have a life to live.  Unless...I want to give up.  So we have a parallel view!
Stay the course.
Tom

Hi Ray,
 Alive is a good status! Alive with test values improving is even better. You're entitled to some whining, I think. You can be grateful and determined to win and still whine a litte. Cancer takes a lot from us and there's some grieving to do. You can grieve and live at the same time. Hang in there!
Bridget O
 

Bes-
It's not all that uncommon for lung cancer masses or nodules to be "hidden" on xrays because there are so many different things they can hide behind.  CT's do a much better job at helping docs see them.  My mom is a great example - her "1 year all clear" chest xray looked "normal". After continued shortness of breath, her new pulmonary doc began reviewing scans and xrays. He saw something on her "all clear" chest xray. They decided to take a better look and found cancer behind her trachea that was closing off 70% of her airway.  A CT shows it better, but it is still really hard to see even then.  We were truly angry for a long time and are probably still a bit angry that it had been missed for over a year and 3 follow-up chest xrays.  But all we could do was get over it and move-on so we could deal with her treatment and recovery.  Luckily, her cancer supposedly has not spread, so we are grateful, but not everyone is that lucky.  All that I can say going forward, is to continue to push for answers should a new symptom arise and there has not been an explanation for it - and don't always accept the "It's just chemo/radiation/other treatment side effects" answer because it's not always due to side effects.  My mom recently spent 2 weeks in the hospital because of pneumonia and a pleural effusion in which they drained over 2 liters - this was also missed by a chest xray.  My mom used to be nervous about "crying wolf" but we are to the point that her health is way more important than worrying if we are pestering her docs.  What I've learned from all of this is to always ask questions and should you have other questions after your appointments, contact your docs and ask them.  

Thanks so much for the quick response it has helped ; my hubby says I am a "helicopter" wife--I guess that explains it. It's hard not to be we have been together 28yrs and he has battled severe COPD since 2004. So that in itself has it's ups and downs but nothing like this. Just dealing with all the test and doctors is tiring for both of us.   

Hi bes,
I know how scary it can be when symptoms come on or get worse suddenly. In my several cancer journeys I've been through that and my symptoms were nowhere near as serious as your husband's. Since he's not wanting you to talk to the doctor, you're in a difficult spot. Hang in there--hopefully you'll have a better idea of the situation afther you meet with the oncologist on the 17th.
Bridget O

Thanks so much for all the replies and resources I have found a place that really cares. I don't feel so alone in this battle knowing I can share with others. My husband has already had a needle biopsy with a diagnosis of Squamous cell lung cancer either a stage 3 or 4; we are waiting appointment for a Pet scan to see where it has spread and an appointment was made for the radiologist.  So if all goes as planned we should know the extent on the 17th when we meet again with our oncologist. The hardest part is yet to come we need to tell his adult children
 

Bes,
I was x-rayed about a month before my lung cancer diagnosis.  The x-ray clearly showed two broken ribs.  Not shown was a 7.5 cm (3") long, 1.3 cm (1/2") wide tumor in the main stem bronchus of my right lung. Tumors in soft, diffuse tissue, like the lung are difficult to find using x-ray technology.  Sometimes they don't show with CT scan technology.  This is but one reason early diagnosis of lung cancer is so difficult.  But an unresolved chronic rib pain complaint should have raised an alarm. Doctors do the best they can with the tools at hand and lung cancer remains devilishly difficult to diagnose even with enhanced scanning technology.
So your next step is continued diagnosis.  Your husband may have further scans of the body and brain to determine if the cancer is confined to his chest.  The results of these procedures yield a stage of lung cancer.  This explains lung cancer staging.  Once staged, the type of lung cancer needs to be determined before a treatment plan can be devised.  Here is information on lung cancer types.  Type determination is often made using a needle biopsy; sometimes tumor samples suitable for pathology examination can be obtained using a rigid or flexible bronchoscope.  An interventional radiologist generally performs a needle biopsy, although thoracic surgeons also perform this procedure.  Thoracic surgeons or pulmonologists perform bronchoscope procedures. Tissue samples from either device are examined by a pathologist to determine the type of lung cancer.  The size and shape of biopsy cell tissue allow determination of the type of lung cancer.
Here is a resource you may find useful as you and your husband move forward toward treatment.  You'll have questions and this is a good place to ask.
Stay the course.
Tom
 
 

Hi bes,
I don't know why an x-ray wouldn't show a mass or nodule. I looked at Lungevity Lung Cancer 101 under Imaging and it says that x-rays sometimes miss small lung cancers. It doesn't say why.  Here's the link: https://www.lungevity.org/for-patients-caregivers/lung-cancer-101/diagnosing-lung-cancer/imaging-tests.
Also, bes and Shoo2,  Have you been on the main Lungevity Site? There is a Caregiver Resource  Center there that may have something helpful for you: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center
Bridget O

Darleen,
I believe your question is about the effects of CyberKnfe or stereotactic body radiation therapy (SBRT) administered to tumors in the chest.  And, if this type of radiation would cause you to need to use oxygen after it is performed.
I can't answer definitively about oxygen.  I think there are many factors that would cause a doctor to order oxygen therapy and radiation therapy would be just one such factor.  I can speak to the benefits of CyberKnife from personal experience.  I had a CyberKnife procedure performed on a stubborn tumor in my left lung.  It eliminated the tumor in but three 30 minute sessions. So, it worked for me.  I hope this addresses your question.
Stay the course.
Tom

Yes, Linda, glad you figured out that pesky period and are now back. And thanks to all of you for the info on S.B.R.T.
Bridget O
 

Hi Sally,
I had taxoterre along with carboplatin for a non-lung cancer. in 2011  It wasn't pleasant, but I got through it OK. I had some side effects. I'n not sure whether they were from the taxo, the carbo, or the combinaiton. I developed some neuropathy in my feet after the first round. I still have some, but it has subsided over the years and is not a problem unless I wear tight shoes. Then my toes will hurt after a few hours.  I also had severe anemia which resolved with a transfusion. Also neutopenia, low neutrophils (white blood cells that fight infection.}
Be sure to ask your doctor or oncology nurse about neutropenia precautions, You'll probably be told that ANY fever during chemo should be treated as a medical emergency, because you can be quickly overwhelmed by infection, After my neutropenia, I was put on neupogen after each round of chemo and it didn;t recur.
I had hair loss. Oh well, it's only hair. I got a wig but didn't like it. I bought a bunch of cute hats and scarves.
This may all sound unpleasant. But it was worth it because now I'm NED (no evidence of disease)  on that cancer which was Stage 3 and aggressive. BTW, also NED on my more recent lung cancer. I feel well and have good quality of life.
All chemo is scary, I think, and especially one you haven;t had before, But hang in there, you can do it!
Best wishes to you.
Bridget O

Join our team!
We are currently seeking survivors and caregivers to join our support team. If you have a few hours a week to provide support and friendship to others through email and/or phone, please sign up at the link below. 
www.lungevity.org/lifeline

Hi, Darleen,
Welcome to LCSC. I am glad to see you've already connected with Tom and Susan. Lung cancer can certainly be overwhelming. Like Tom and Susan said, sometimes the best advice can be "Just keep living!" If you're familiar with the movie Finding Nemo, you can picture Dory saying it. Please feel free to explore the message boards, ask questions, and join in on any conversation that resonates with you. I am happy to provide you with resources and information about LUNGevity's Support & Survivorship program. Please do not hesitate to reach out and remember that we are here for you!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi, Jane,
I'm glad that you've joined this community and that you connected with Nikole. LifeLine is a wonderful program and Nikole does an incredible job helping people connect with the right mentors. Please do not hesitate to reach out and remember that we are here for you!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation