LouT

VMim, I just learned that Lungevity announced a new page that covers rare mutations and fusions and you may find some useful information there, it can be found here. Good luck. Lou

VMim, I'm sorry to hear about your mom's condition and I pray that things will improve. I personally do not have any knowledge of this mutation, and can't find it in our forum which cover such mutations (which can be found here). But we have a large and varied family online and hopefully someone will be able to provide some input for you. Regardless of that input hearing progression while under treatment is surely something to be concerned about so I understand your deep concern. Lou PS: With some additional searching I did find a thread on BRAF and it is on this page. I'm not sure it is that helpful, but may offer some insight.

I was able to return to my usual workout fully after about three months. That is a 6-day per week workout of 5 miles (power walking) and weights. Everybody is different so don't ever be put off by comparisons. We'll take the journey with you. Lou

If you do follow through with the surgery there is a blog you should read titled, "Thoracic Surgery Tips and Tricks" and it speaks to pre-surgery, day of, and post-surgery tips and tricks for lung surgery. It can be found here. You may find it useful. Lou

Rikke, If delete is not available for users you can always request one of the moderators (I'm one) do it for you. We can also move it to another location. Lou

D, Glad to hear from you again. Yes, this is one recurrent disease and we always keep our hopes focused on "NED", but we also have to accept that we may not be done in the battle. I'm glad that your treatments seem to be working and will look forward to hearing results from your new scans next month. Please stay in touch and remember that your story can be a newly-diagnosed person's guide to getting through this terrible disease. So, stick around. Lou

Hi Jill, Welcome to the forums and I'm sorry you need to be here. Both of my parents also died of cancer; my mother of lung cancer and my father from bladder cancer, and my family has a long list of folks who succumbed to cancer so I understand your concern over the possibility of having it yourself. It's great to hear you are calm and positive as that will surely work in your favor as you go through this journey. You'll find our forums to be a great place to connect with others who will share their experience and hard-gained knowledge on lung cancer, so feel free to ask any questions you'd like. I'd also like to share an article with you titled "10 Steps to Surviving Lung Cancer; From a Survivor", it can be found here. It's a good primer to prepare yourself if the biopsy shows malignancy. Lung cancer is no longer the automatic death sentence it once was so you'll do better to stay away from Dr. Google and stick with your medical team and others with experience to understand outcomes and longevity after diagnosis. I'm 3-years since my Lower Right Lobectomy and still NED (No Evidence of DIsease). There are others here far longer than me who are still living their lives and enjoying friends and family. So, keeping that great attitude will surely be an asset to you along the way. Finally, Lungevity has a section called "Lung Cancer 101" where there is a lot of knowledge on LC in general as well as the diagnostic process. There may be information there that will prove helpful to you at this stage you're at. It is on this page. Keep posting and ask us anything you'd like, we're here to help you. Lou

Hi LeeLee, I had my LRLobectomy in May of 2019 via VATS and a couple of my incisions still pulsate with numbness and pain at the same time. In my case it seems to vary (no explanation for that) and sometimes it is more numbness than pain while other times it is the opposite. The answer I've gotten on this is that it can happen and diminish over time. Mine surely has diminished considerably over the last 3 years, and while not totally gone it is much easier to ignore. Give it some time and you should also find that over time you can have more and more relief. Lou

Minh, Are you also seeing a pulmonologist? If not, please do. I'm hoping that you can get some relief from the S.O.B. so you can be more comfortable and active. You've had quite a ride with your recovery and I do hope that it improves for you. Lou

I've hardly heard of Covid helping someone, but for whatever reason it did I'm glad for your brother's nausea and upset. I hope the rest goes as well for him as well. Lou

Mary I’m glad you found our forums. So you now have a nodule of 4mm. Most lung nodules (60%) are found to be benign and they can form for a wide variety of reasons. Your doctor will likely request a PET Scan to see if any modules “light up”. If the test is positive or inconclusive they may take a wait and watch approach or look to perform a biopsy. That would be the “gold standard test” to see if there is a malignancy. I have nodules left since my lifetime of 2019. They keep track of them but right now they are stable and not a threat. I hope yours are the same. So, I can’t answer your question of how many but I surely hope you’ll get fully checked out and the nodules will be non-malignant. I’m sure you’ll be hearing from others soon and may get some more insights Lou

Kimmiann, I'm surprised to hear that Stage 1b would be inoperable, but that can be because of the location of the tumor. I was stage 1a and did have a LRL lobectomy. Let's see what others here have to say about any existing conditions and the relation to treatment. In the meantime Lungevity has a page that discusses a number of different treatments and it can be found here. I'm not sure it will cover your particular situation but you can learn more about additional options. We also have a group on Immunotherapy where others may have experience that can help you out. That is on this page. Stick around and post as you go through your treatment and I'm sure others will post to share their experiences with you. Lou

Hi Shauna, Welcome to our forums and I'm sorry you need to be here. Your story is a good example of needing to be an advocate when you are involved in medical situations. SCLC is especially problematic as it can become resistant to treatments over time so approaches are different from other forms of lung cancer. I'm not equipped to answer your question on "how many months..." and I doubt anyone here can. But our folks will share their personal journeys with lung cancer to provide information and support for you and your mom. I see that you posted this in the SCLC Forum and I do want to share some other information with you though. There is a section of our site called, "The Patient Journey" and it is broken down into steps such as "Diagnostics and Treatment" among others and it can be found here. We also have a page titled, "Treatment Options for SCLC" and that is on this page. Hopefully these pages will provide some additional information for you and in the meantime my prayers are with you and your mom for the best outcome possible. Lou

Hi Yvette, I also had a lobectomy, but in my case when the chest tube was removed they put in a couple of stitches. I hadn't really heard of leaving it open to continue to drain. Perhaps it is a different practice that I have not heard of but entirely possible. I'll let others chime in to get their opinion though. Lou

Kelvin, Here is a forum on EGFR that may help provide some information for you and your mom. Lou

Army, Welcome to our forums and I'm sorry that you need to be here. Others will give you their experience with immunotherapy and chemo (I only had surgical treatment. But, as a husband of a dementia patient I can tell you that it is a good thing your oncologist is taking that into account. Treating anything medical with my wife was a terrible and tough experience. Please keep us updated and I look forward to my fellow forum members responses to your question. Lou

Kamoto, Waiting can sometimes be the hardest thing to go through. Tom nailed it though, seeing a RO could move things along better for you. Please keep us updated. Lou

Hi Bill, Welcome to the forum. As you consider different therapies for your mutations you may find some useful information at our "Lung Cancer Mutations" forum that can be found here. Stick around and continue to post. You'll surely hear from others as your newer treatment decision takes shape. Lou

Kelvin, Just to restate; your mom's numbers require further diagnosis. They would seem to indicate potential cancer. The biopsy will be the final determinant and I pray for the best outcome possible. Lou

Hi Conor and welcome. We all know your dad well and he is an active part of our support community. He's involved in a host of posts and helping others as well. If you are interested in connecting with other caregivers like yourself then we have a "Caregiver Resource Center" and it can be found here. You can get coaching and support from others who are supporting survivors like your father. Lou

Kelvin, A reading of 13.1 would indicate a value well outside of the "normal range" and worthy of additional testing. Of course the final determinant in the diagnosis path would be a biopsy to determine the exact nature of the cells and any if any biomarkers are present to aid in applying the most effective treatments. In my case my measurement from a PET Scan was 2.54SUV and that was considered near normal, but inconclusive. At the end of the day I had NSCLC Squamos that was treated with surgery. So, even a low reading does not indicate accurately cancer or not cancer. All tests need to be taken together. Lou

LRB, Good to hear from you again, it's been a while. Bridget is correct that everyone is different when it comes to recovery and symptoms can vary. If I were you I would speak to my pulmonologist, get tested and perhaps a low-dose CT (if he/she felt one was necessary) so you can determine the source of the SOB. So many things can affect it that any of us here would be guessing at the cause and that would not be of any substantive help to you. Please speak with your doctor and let us know what you find out. Lou

Cheryl, I can understand the hesitancy to take on adjuvant treatment. I would have felt the same way had I been approached with the prospect. In my case with Stage 1a it was not offered. I'm now 3 years since my lobectomy and so far I've been NED and my first annual scan is set for August of this year. I have to admit that had I been offered the opportunity to do adjuvant therapy I would likely have taken it. Lung cancer is so darned recurrent that I would have wanted every card to be stacked in my favor. If you have concerns about the treatment (side-effects, hair loss, etc.) then speak with your doctor about them. I cannot state from experience but perhaps this form of therapy is not as potent as a full-blown round of chemo. Anyway...the choice is yours and as long as you are comfortable with your decision that is all that matters. Lou

I hope so as well for your brother. Lou

Maryloumoo, If you were feeling unsafe with he staff then cancelling was the best thing to do. I hope your surgery went well. I"ll have to check for any posts you have on it. Lou