Jump to content
Karen.athome

Hi, I'm a Stage 4, 3rd time Lung Cancer Survivor since 1998

Recommended Posts

I  was 44 when I was first diagnosed with NON SMALL CELL Lung Cancer in my left lung it was 1998.

It was a year after my Dad passed with the same thing.

Everything changed..within 3 months. Business closed, husband left and I was looking at Thoracic Surgery.

I knew then I was stronger than I ever thought possible.

I wasn't diagnosed again until 2014 when I had a second Lobectomy on the left lung.

Six months after my Sister passed from the same thing.

In 2016 it was back in the lung and spread.

 I was given massive Radiation on my Pericardium and also had RFA-Radiofrequency Ablation on my lung.

I was told I had less than 6 mths.

Me being me..fought and got a Medical Onc...who suggested a new treatment that may give me a year at the outside.

I had been on 6 Clinical Trials and this would be my lucky 7th.

I believe in being a piece of the cure....try what you can ..maybe someday in the future something will work to irradiate Cancer for good.

It is now 2019...I've been on Keytruda for about a year and a half. The tumours on my Pericardium and heart are no longer there and the tumours in my lungs have shrunk considerably.

I still have Kidney and Uterus to be concerned about but...all in all.....I think there may be something to this.

Next month it will be 21 years and 3 lung cancer diagnoses....I think its a mixture of Research and Moxie, Guinea Pigs are tough animals and I'm proud to be one..

Share this post


Link to post
Share on other sites
35 minutes ago, Karen.athome said:

I  was 44 when I was first diagnosed with NON SMALL CELL Lung Cancer in my left lung it was 1998.

It was a year after my Dad passed with the same thing.

Everything changed..within 3 months. Business closed, husband left and I was looking at Thoracic Surgery.

I knew then I was stronger than I ever thought possible.

I wasn't diagnosed again until 2014 when I had a second Lobectomy on the left lung.

Six months after my Sister passed from the same thing.

In 2016 it was back in the lung and spread.

 I was given massive Radiation on my Pericardium and also had RFA-Radiofrequency Ablation on my lung.

I was told I had less than 6 mths.

Me being me..fought and got a Medical Onc...who suggested a new treatment that may give me a year at the outside.

I had been on 6 Clinical Trials and this would be my lucky 7th.

I believe in being a piece of the cure....try what you can ..maybe someday in the future something will work to irradiate Cancer for good.

It is now 2019...I've been on Keytruda for about a year and a half. The tumours on my Pericardium and heart are no longer there and the tumours in my lungs have shrunk considerably.

I still have Kidney and Uterus to be concerned about but...all in all.....I think there may be something to this.

Next month it will be 21 years and 3 lung cancer diagnoses....I think its a mixture of Research and Moxie, Guinea Pigs are tough animals and I'm proud to be one..

Karen

Good for you and i like you comment   I believe in being a piece of the cure..

I am 17 years and two cancer  diagnoses. Oh well..

Share this post


Link to post
Share on other sites

Karen - your strength is admirable and congratulations on 21 years!!! Welcome to the forum! 

Husband stage 2b lung cancer pneumonectomy left lung almost 5 months ago

Share this post


Link to post
Share on other sites

Hi Karen-

Nice to meet you!  You’re the perfect example of how to live to the next breakthrough.  As a Stage IV ALKie that’s pretty much my battle plan.  I’d love to hear about your clinical trial experiences & how you found a med onc to support you. Are you still with the same onc or did you have to fire any along the way?  

Like all of us, LC was not part of the plan.  So now we have to make another one. Welcome! 

Michelle

Share this post


Link to post
Share on other sites

Thank-you all for welcoming me.

I have to learn how to navigate this site...

Moonbeam, I'm so sorry for your husbands diagnoses..but what I can tell you....is endorphins are essential. 

Stay as positive as you can and laugh as loud as you can, my sister, friends and I have taken complete chemo wards down in laughter  xo

Share this post


Link to post
Share on other sites

Yes...Michelle....I fought for a Medical Onc...that would listen to ME.

I wanted Immune Therapy.

I also got my own copies of my reports and advocated for myself.

Don't get lost in the crowd.

You're the best one that can take care of you.

Share this post


Link to post
Share on other sites

wow Karen, completely agree with all you speak of. Laughter being one of the best medicines; Becoming your own and in my case, my husband's advocate. Every time, i learn something new every day. I also have been so on top of it, some on his team (surgery, oncology etc) have missed things, wrote things that were wrong, the list goes on. This new finding is troubling  and not a lot of info out there that I can find. Any info you have on Pseudoaneurysm from descending thoracic aorta would be great. Thank you so much and again, Welcome to the forum!!!

XX

Share this post


Link to post
Share on other sites

Karen -

Congrats on your years of LIVING! I am happy to hear that Keytruda is working for you!  My mom was on Keytruda for about 1 year and had to stop due to side effects, but so far the lung cancer is staying at bay.  Your story enlightened me, I am so happy I read it this morning. Thanks for putting a smile on my face!  Happy you have found us!

Take Care,

Steff

Share this post


Link to post
Share on other sites

Hi Karen! I'm new to this site myself and still have to introduce myself. But, I was excited to read you story and wanted to respond. You are one encouraging woman. I was diagnosed in August 2017 with Stage 4 NSCLC. I'm also a Keytruda patient and have been cancer free now for about 8 months. It's a good feeling and I agree that this immunotherapy is amazing. I was originally given a few months too, then my genetics results came in and I'm almost 100% PDL1 positive. Thanks for sharing your amazing story. I believe in research and am relying on future findings to get me through to being a long term survivor like you.

Share this post


Link to post
Share on other sites

Steff….could I ask what side effects your Mom had that would take her off the programme ?

It's encouraging that the lung cancer is staying stable.

Share this post


Link to post
Share on other sites

Karen-

My mom had inflammation in her stomach, intestines, and bowel (similar to colitis) that was causing severe diarrhea for 3 months and then vomiting for about 1 week prior to being admitted to the hospital.  Although it is not an extremely common side effect, it can still happen.  Other side effects that she had but were not big issues were: annoying rash on arms and chest, skin pigment changes (that was one of the first side effects, but it went away after about 6 months), thinning of hair, thyroid issues that were controlled by meds, and some fatigue - these are the most common side effects.  She also had a plural effusion but it's not known if that was due to Keytruda or not. 

If you are on Facebook, LUNGevity has a facebook group for users of immunotherapy.  It's a pretty active group and people share a lot of their side effects and fixes.  It was very helpful for us when my mom first started taking Keytruda.  It may be a good resource for you too.

It's a crap-shoot whether or not someone has severe side effects from having an overactive immune system.  My aunt was on Keytruda for a full 2 years for melanoma.  She only had the most common and mostly annoying side effects like hair thinning, fatigue, and rash. So it's really hard to tell whose going to get the more severe side effects and really only time can tell.

Hope this helps.

 Take Care,

Steff

Share this post


Link to post
Share on other sites

Thank-you so much Steff...

It helps a lot !!!!

I'm going through similar along with Lymph Nodes popping up all over the place ….

I'll go to the Facebook page...I really appreciate your help !!!!

 

Bye the way....helpful hint....If you're losing hair....to unclog  your drain....throw some Nair down there.....better than Liquid Plummer !!!!

Share this post


Link to post
Share on other sites

Thank you  so much for sharing your story !  I am new to this nightmare with many contradictory emotions and feelings.  I will keep your story as an inspiration. 

Share this post


Link to post
Share on other sites

Welcome to you, Maria,

I'd like to hear some of your story if you feel comfortable sharing it. This site is a good place to find information and support.

Bridget O

 

Share this post


Link to post
Share on other sites

Thanks for sharing everyone.  I start Keytruda on Monday, May 20th.  All of your comments are helpful and inspiring.  I will definitely have to get on the Facebook site to help guide me through this journey and keep me strong.

Share this post


Link to post
Share on other sites

Hi Karen.

Bravo ! Congrats! You have filled me with hope and I thank you for that. Keep up the good work:-) 

Maria

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...