Jump to content
Miryana

Beginning of our journey...

Recommended Posts

Hello everyone,

My name is Miryana and I am joining your group in hope to find some support, consult, consolation, hope on the road that is ahead of my husband and I. My husband was recently diagnosed with NSLC adenocarcinoma, Stage  lV with a single mets to his brain. He had a craniotomy in July and his surgeon was able to remove the entire mass since the mass was located outside of his brain. My husband did one round of preventive Gamma Knife treatment directed to his operative site. Further pathology tests revealed that he has adenocarcinoma; on CT two small nodules (1cm and 7mm)were found in his left lung. On the PET scan the most intensive uptake was in his lymph nodes. However, no one was able to tell us where is his primary (the cancer is poorly differentiated).  Probably, cancer cells traveled to his brain through his lymph nodes. There were no other metastatsis showing on his PET scan. He is prescribed Keytruda as the first line of treatment and he will start with it this upcoming Wednesday. My husband is 54 years old, a very strong man, and he does not exhibit any signs of a lung cancer (he does not have shortness of breath, cough, anything). He is not referred to a pulmonologist, because he does not experience any breathing difficulties. However, that is so strange to me that with his condition he is not advised to see a pulmonologist. Also, what if his cancer can be treated with the surgery or radiation?  His recovery after his brain surgery was amazing. He is up working, running errands, being his old self. Please advise if you had a similar situation or know more about procedures pertaining to this type of cancer. I am looking at him every day being active, strong and I am worried we are wasting too much time waiting when there is a possibility for the primary to be found, killed with the radiology beam and our battle won rather sooner then later. Thank you.

Share this post


Link to post
Share on other sites

Hi Miryana and welcome.  I'm sorry to hear about your husband's diagnosis. These forums are a good place to find information and support. My situation isn't similar to his in that my cancer was found very early. I'm sure you'll hear from others who have had issues more like his. Hang in there.

Bridget O

Share this post


Link to post
Share on other sites

Miryana,

Welcome and very sorry to learn of your husband's diagnosis.

So, let's get right to it: brain met dealt with and two small tumors, poorly differentiated, in his left lung and lymph nodes displaying high SUV and first line treatment is Keyturda, a immune checkpoint inhibitor.  First, Keytruda is good stuff and let's hope if arrests the cancer in his tumors lymph nodes. Was the Gamma Knife treatment, post operatively, administered by a radiation oncologist? if so, I'd suggest another consultation with a radiation oncologist to see if it is possible to fry the tumors and offending lymph node with stereotactic radiation (SBRT). If not, I'd find one and see if that treatment is available.  Radiation oncologists are getting very aggressive treating multiple metastatic sites with precision radiation (stereotactic radiation). A second beneficial effect of this treatment is a phenomenon called the Abscopal Effect and note how effective it can be when combined with checkpoint inhibitor immunotherapy is this NIH paper.

Why no involvement with a pulmonologist? While pulmonologist are very valuable disciplines in diagnosing lung cancer and treating breathing complications associated with the disease, the domaine speciality of lung cancer treatment is the medical and radiation oncologist.  So if his breathing is not hampered, a medical oncologist is the right doctor and I'd consult with a radiation oncologist to see if precision radiation is a possible treatment.

I'm assuming the brain met was biopsied because he has an adenocarcinoma diagnosis and is receiving immunotherapy as a treatment. If that is the case, there is a strong probability that one of the poorly differentiated nodules is the primary. I'd discuss this assumption with the radiation oncologist during the first consultation. Ensure he or she has access to all completed tests and scans. Get copies yourself and bring them to the consultation.

Stay the course.

Tom 

Share this post


Link to post
Share on other sites
7 hours ago, BridgetO said:

Hi Miryana and welcome.  I'm sorry to hear about your husband's diagnosis. These forums are a good place to find information and support. My situation isn't similar to his in that my cancer was found very early. I'm sure you'll hear from others who have had issues more like his. Hang in there.

Bridget O

Thank you very much Bridget. It means a lot to hear from you and other strong people who are epiphany of the cancer survivorship. You are inspiration to all people affected by lung cancer.

Share this post


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

Miryana,

Welcome and very sorry to learn of your husband's diagnosis.

So, let's get right to it: brain met dealt with and two small tumors, poorly differentiated, in his left lung and lymph nodes displaying high SUV and first line treatment is Keyturda, a immune checkpoint inhibitor.  First, Keytruda is good stuff and let's hope if arrests the cancer in his tumors lymph nodes. Was the Gamma Knife treatment, post operatively, administered by a radiation oncologist? if so, I'd suggest another consultation with a radiation oncologist to see if it is possible to fry the tumors and offending lymph node with stereotactic radiation (SBRT). If not, I'd find one and see if that treatment is available.  Radiation oncologists are getting very aggressive treating multiple metastatic sites with precision radiation (stereotactic radiation). A second beneficial effect of this treatment is a phenomenon called the Abscopal Effect and note how effective it can be when combined with checkpoint inhibitor immunotherapy is this NIH paper.

Why no involvement with a pulmonologist? While pulmonologist are very valuable disciplines in diagnosing lung cancer and treating breathing complications associated with the disease, the domaine speciality of lung cancer treatment is the medical and radiation oncologist.  So if his breathing is not hampered, a medical oncologist is the right doctor and I'd consult with a radiation oncologist to see if precision radiation is a possible treatment.

I'm assuming the brain met was biopsied because he has an adenocarcinoma diagnosis and is receiving immunotherapy as a treatment. If that is the case, there is a strong probability that one of the poorly differentiated nodules is the primary. I'd discuss this assumption with the radiation oncologist during the first consultation. Ensure he or she has access to all completed tests and scans. Get copies yourself and bring them to the consultation.

Stay the course.

Tom 

Thank you very much Tom for finding time to respond to me. Your answer provided me with a lots of resources, options,  and that is exactly what I need right now. Yes Gamma Knife treatment was administered by a radiation oncologist. Also his neurosurgeon who operated on his brain was present during the treatment. I feel that his current team is doing the best they can to help, and I apologize if I sound a little bit in a panic. I feel somehow lost on a road and I need some signs to show me the way, just a little guidance... I have to learn a lot and I am grateful to every person who provides a little bit of insight or advice or hope... I am grateful to all of the people who participate in any of these conversations because it makes all of us affected by lung cancer united and strong. Thank you again. I appreciate your kindness.

Share this post


Link to post
Share on other sites

Hi Miryana,

Just wanted to say hello & welcome. A friend of mine is in the process of completing a 2 year course of Keytruda which has been quite successful with no evidence of disease.  There’s been more treatment advances in the last five years than the past 50 years. 

There’s an uptick of these oddball lung cancers without symptoms as 90% are diagnosed at Stage IV. You’re not alone here.  No one seems to know why this is happening.  The immunotherapy world is rapidly making progress.  Hold onto your hope  

There’s a wonderful group of people here to assist. Just let us know how we can help. 

Michelle

Share this post


Link to post
Share on other sites
On 9/2/2019 at 9:53 PM, Rower Michelle said:

Hi Miryana,

Just wanted to say hello & welcome. A friend of mine is in the process of completing a 2 year course of Keytruda which has been quite successful with no evidence of disease.  There’s been more treatment advances in the last five years than the past 50 years. 

There’s an uptick of these oddball lung cancers without symptoms as 90% are diagnosed at Stage IV. You’re not alone here.  No one seems to know why this is happening.  The immunotherapy world is rapidly making progress.  Hold onto your hope  

There’s a wonderful group of people here to assist. Just let us know how we can help. 

Michelle

Thank you very much Michelle. He received his first infusion and he did not experience any side effects whatsoever. I pray to God it stays like that. I pray for all the people affected by this disease. I feel in my heart we are approaching the time  when the cure will be discovered. 

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...