Jump to content
KarenHS

Surgery 3/27/17 for stage IIb nsclc

Recommended Posts

Beginning to lose heart as it seems if it can go wrong, it will.  I had an excellent surgeon for tumor removal. He got clean margins, but it was a large tumor, over 7.5 cm. I was referred to oncologist and had a port installed for chemo. It was installed wrong, catheter put in artery, not vein as it should have been.  this was discovered first day of chemo. Rushed into emergency surgery for removal, then had to go for another surgery to have port installed on other side of chest on 5/31. Started chemo (cysplatin and navelbine) for 4 cycles on 6/5. Developed neutropenia quickly.Respite from chemo did allow wbc neutrophil count to rise, but then it became apparent I had to have neupogen shots. Horrible stuff. I keep telling myself it is a means to an end, but I am exhausted from all the side effects.

Share this post


Link to post
Share on other sites

Hi Karen,

Welcome here! And hang in there. There is hope here. You will probably hear from others who have had a lot of things go wrong  in their lung cancer journey and who have survived and are having good lives years later. Maybe you've read some of their stories already.

My  lung cancer was adenocarcinoma Stage 1A, and everything went OK with my surgery in November 2016. I don't need any more treatment now,, only regular CTs to look for recurrence. I've had chemo, though, for a different (rare form of cervical) cancer that was Stage 3. My lung nodule was discovered in a routine CT scan that I had to watch for possible metastasis from the other cancer. I may be the only person you will ever hear say she was relieved that it was "only" lung cancer. A metastasis would have had a much worse prognosis. Lung cancer of any stage is bad enough. 

 My neutrophils also crashed twice during chemo, once  was to zero. I had neulasta with no side effects from it, fortunately. I had plenty of side effects from concurrent chemo and radiation, though, so I understand how discouraging it all can be. I'm 7 years out from my Stage 3 cervical cancer diagnosis and also 9 years out from a breast cancer diagnosis. I'm now  NED on all three cancers.  My life is really full and happy these days. For me the difficulities of treatment, including those that are still hanging around, have been worth it.

I wish you all the best.

Bridget

Share this post


Link to post
Share on other sites

Thank you for your reply Bridget. It is encouraging to know all has resolved favorably and that you are living in happiness and health. I have been strong and optimistic through most of my treatment, be it surgery or chemo. But I think I just have reached the tipping point as I went yesterday for chemo, after being on neupogen (daily shots) for 4 days, and even though my neutrophil level was 3.1, which is fine, the doctor said she was giving me a week off without chemo. She did not elaborate why, just that she felt I needed it...then I looked at my bloodwork and see some lab notes re "polychromasia present" and "atypical Lymphocytes" which my doc did not mention... I have to go for a port study tomorrow as the general area has felt different.  You are fortunate not to have had neulasta side effects!  Forcing the bone marrow to produce wbcs has proven to be as bad as chemo side effects for me.

Share this post


Link to post
Share on other sites

Karen,

All things considered, I'd rather not be welcoming you here.  As you are now well acquainted with the mayhem of treatment, you know the reason for my reluctant greeting.  I had a large single tumor at diagnosis also and pre-surgical radiation and chemo to shrink the tumor and allow a complete right lung pneumonectomy.  But, complications earned me two more trips down the thoracic surgery trail.  After a years worth of surgery, I scans discovered three new tumors in my remaining left lung.  Then it was Taxol and Carboplatin and two NED successes and two recurrences.  Two conclusions from my experience.  One treatment is a marathon, not a sprint, and two, if I can live so can you.

I had many treatment delays from blood work problems and they never seemed to effect the overall outcome.  You are right about Neulasta.  The shot itself is painful but the bone pain is misery. My principal troubling side-effect from chemo was intense arthritic joint pain that lasted 3 days and adding bone pain to that mix was indeed a nightmare.  But, I got through it and so can you.

I hope your port doesn't give you problems.  I had several installations and removals.  As I can recall, they were all done with local anesthesia and given what I'd experienced, a piece of cake. But, a port is a life raft in a sea of IV sticks that constitutes lung cancer treatment.  When it works, it is a god send.

This would be the place for questions as treatments role out.  We are the lung cancer experts and many of us are long time survivors.

Stay the course.

Tom

Share this post


Link to post
Share on other sites

Good morning, Karen.  I'm sorry you've had such a tough time.  I was diagnosed with stage IV early last year and just finished a round of chemo for a recurrence.  The side effects have been brutal.  They were bad enough to help me see why people opt out of treatment.  But there is light at the end of the chemo tunnel and it is that we're all living longer with this diagnosis hanging over our heads.  We're also seeing new treatment options for lung cancer which is what allows us to keep going.  My hope is that I can continue to treat this as a chronic illness with the occasional flare-up.

Please don't lose hope.  We understand where you are and we're here for you.

Share this post


Link to post
Share on other sites
8 hours ago, Tom Galli said:

Karen,

All things considered, I'd rather not be welcoming you here.  As you are now well acquainted with the mayhem of treatment, you know the reason for my reluctant greeting.  I had a large single tumor at diagnosis also and pre-surgical radiation and chemo to shrink the tumor and allow a complete right lung pneumonectomy.  But, complications earned me two more trips down the thoracic surgery trail.  After a years worth of surgery, I scans discovered three new tumors in my remaining left lung.  Then it was Taxol and Carboplatin and two NED successes and two recurrences.  Two conclusions from my experience.  One treatment is a marathon, not a sprint, and two, if I can live so can you.

I had many treatment delays from blood work problems and they never seemed to effect the overall outcome.  You are right about Neulasta.  The shot itself is painful but the bone pain is misery. My principal troubling side-effect from chemo was intense arthritic joint pain that lasted 3 days and adding bone pain to that mix was indeed a nightmare.  But, I got threw it and so can you.

I hope your port doesn't give you problems.  I had several installations and removals.  As I can recall, they were all done with local anesthesia and given what I'd experienced, a piece of cake. But, a port is a life raft in a sea of IV sticks that constitutes lung cancer treatment.  When it works, it is a god send.

This would be the place for questions as treatments role out.  We are the lung cancer experts and many of us are long time survivors.

Stay the course.

Tom

Well it is great to get your response. I am a bit wonky about how to post - this seems to be a very sophisticated forum. Is there a tutorial anywhere that I can access. I feel like a kindergartener in college. And I am pretty savvy about computers, but, this is somewhat tricky.

 

Share this post


Link to post
Share on other sites

Karen,

Sorry about your posting difficulty. No tutorial that I know of but it is a good idea and I'll send it up the chain. 

Don't worry about where you post (in discussion boards), we'll find you. There is a gray (I'm color blind so anything not black is gray) tab called unread content that most of us check to find the new posts.  Indeed, that is how I found yours. 

Sophisticated, yes in a comprehensive and caring prospective but not high-browsed sophisticated. Any lung cancer survivor or care giver gets automatic entry and attention. All have a tough row to hoe and all are equally valued and important. 

Take a look at Lung Cancer 101 on the Lungevity.org website. That is the most comprehensive presentation on lung cancer I've seen but is easily understood even by this medical phraseology challenged civil engineer. 

Stay the course. 

Tom

Share this post


Link to post
Share on other sites

Thank you, Tom. I did not mean the content on lung cancer was too sophisticated, I meant navigating the forum as to where to post was confusing. It is encouraging that you are looking BACK  on the surgeries and pain. Your description of joint pain rings a bell and I also have nasty osteoarthritis - everywhere. After chemo, and the addition of neupogen, I am truly ill..

I had my port study today and relieved that it looks okay, no leaking.

I will check out Lung Cancer 101 on the website.

You are spot on in that it is important to realize that new problems will come up as you go through treatment. Initially I was given a time frame of 4 cycles of 4 weeks each. I know now that was a rough estimate and did not take into account the holdups caused by neutropenia, and also the body's exhaustion. I think if you can expect and accept that these problems are inevitable, you are better off.  Frankly, my doctor did not relay this to me ahead of time. And of course, there is no point in a doc relaying a worst case scenario.

Onward, through it, and upward.  Thanks.

 

Share this post


Link to post
Share on other sites

Hi, Karen,

Welcome to LCSC. I'm glad to see you've already connected with some of our members. This is a great community to find hope and help while navigating a lung cancer diagnosis and treatment. Here is a link to an overview on how to use the site. Please continue to explore the discussion boards, read the blogs, and join the conversations which resonate with you. Feel free to ask questions and please let me know if you'd like additional information about LUNGevity's resources and support programs. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×