Rower Michelle

Hi Ale,
So nice to hear from you and we all share the disappointment when the treatment isn’t doing the job.  You’re smart in going to Penn, where clinical trials and experimental therapies are available. A friend of mine here has HER-2 Exon 20.  The Enhurtu worked for a bit and now she’s on her fifth line of treatment, doing the LiveStrong program with us at the local YMCA and still working. Her doctors keep coming up with new combos.  So as Lou says, hang onto your Hope.  
 

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi Steph, 
Your mom was one of the first people I met shortly after my diagnosis in this forum.  She always seemed to be on-line, ready to jump in with wisdom and words of encouragement.  We'll also remember her passionate to the legal profession and of course her love of Mayor Pete.... she will always be remembered for the contribution she made...   my deepest condolences to your family. 
Michelle 

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Hi everyone,
Sorry I haven't been doing a good job with regular updates here.
Mom discharged home from the SNF and was home for a couple weeks.
She was having a lot of problems with her mobility and standing up and getting around on her own. But we were improvising and finding solutions as we went.
She had 2 more weekly carboplatin infusions but this Friday, 4 days after the 2nd infusion, she went to the bathroom and it was almost entirely blood.
I took her back to the Hospital of the Univeristy of Pennsylvania ED and they admitted her. However, at this time she's declining all diagnostic procedures to identify the source of the bleed and stopping it. She's adamant on transferring to inpatient hospice care and discontinuing all treatment and procedures unrelated to pain management, as is her right.
It's unlikely she will post here again. I know you all understand how difficult of a time this is for her and the rest of our family and that I don't anticipate being very active here at least in the short term.
However, I promise I will update you all if/when anything happens or changes. I know she loved this community dearly and it helped her a lot and she truly enjoyed being able to help others in their journeys as well.
I'll keep you all in my thoughts and I know you'll do the same for her. ❤

Hi Steph,
Glad to hear about your Mom.  Hoping things are improving.  Do you have anymore info to share?  I don’t want to pry but she has helped me and many more on this site, we are just concerned.  Sending hugs and positive thoughts your way.  
 
Babs

I have been away for a long time - trying to catch-up on some posts tonight and saw the topic...  I was so sorry to read of Teri's troubles but hopeful to hear things are getting better. She amazes me! I will definitely be sending good vibes her way. She has helped so many of us on this forum and she means a lot to each of us. Thank you for letting us know. She is fortunate to have you!

Thanks Steph, we appreciate the update and send our love and well wishes to your Mom.  Hopefully they can sort things out.  Please keep us updated as best you can. 
Michelle

That is great news to start the year off! 

Hi Ron...
good to hear your doing well with ALK+, I'm doing well too and hope the rest of the club is staying safe
I'm so excited—it's time to take out the garbage. What should I wear?
So many coronavirus jokes out there, it's a pundemic.
The only jokes allowed during the coronavirus are inside jokes.
 

Just checking in on my friends in the "Durva Club". I hope everyone is doing well and having a nice holiday season. Wishing everyone a healthy and prosperous year to come. The Durva Club sure is quiet these days.....I am hoping that is primarily due to the Durvalumab having helped everyone. I am still during well over in the "ALK+ Targeted Therapy" area. - Ron
 

Hi Justin,
I was diagnosed with lung cancer at the age of 51, three years ago.  I’m grateful for all the research as I’ve been in remission for almost two years now.  There is life with lung cancer, it’s a roller coaster in the beginning for all of us.  
One of the books I read early on was written by long term lung cancer survivor, Greg Anderson: Cancer- 50 Things to do.   For me it was a good road map on how to sort through the chaos and find a way forward.  
Anyone with lungs can get lung cancer… as Lou said, no one is alone here.  Step by step we will help you find the brighter days ahead. 
Michelle

Judy is always a good resource for these types of issues.  In addition some people have also used Manuka Honey with a high floral count US equivalent of two teaspoons twice a day in warm water to aid the healing process too.  

Glad to hear the transfusion helped. Sorry to hear you are not a candidate for immunotherapy. Did you get any info on other bio markers, such as KRAS or EGFR mutations? If you have these, you could be a candidate for targeted therapies. I was told I can have a new targeted therapy called Sotorasib as a third line after immunotherapy and chemo because I have the KRASG12C mutation.

Hi Ale,  it’s been a little while, checking in to see how you are doing?

Good luck to you.  One of the resources you might want to check out is a book by Rebecca Katz called “The Cancer Fighting Kitchen”’. It’s loaded with good recipes and tips for managing nutrition during chemo.  I found it better than any of the hospital hand outs.   Keep us posted. 

Good luck to you.  One of the resources you might want to check out is a book by Rebecca Katz called “The Cancer Fighting Kitchen”’. It’s loaded with good recipes and tips for managing nutrition during chemo.  I found it better than any of the hospital hand outs.   Keep us posted. 

How very odd that a nurse would call you with this news, and they decide on treatment even before getting results from your biopsy. Just sharing for reference: At that stage (after PET), I was just told that in addition to the tumour, the lymph nodes and adrenal gland appeared to be involved, but that they would have to wait on biopsy results to recommend treatment. In the end, it turned out that I have no actionable bio markers for first line treatment (I do have a KRAS mutation with options for later treatment), but that my PDL numbers are very high, so my treatment will be immunotherapy only, keeping chemo as a fall-back option for later.
Of course, none of us here are oncologists, and I am sure there is an explanation, but I would ask to see an oncologist ASAP and get a thorough explanation as to why they have decided on this course of action already. Also, make sure you get detailed info on the types of chemo you will get as from my understanding they each come with different side effects etc that you may want to be aware of and prepare for.

Justin,
As you're hearing here on the forum, you cannot be a "passenger" on your treatment train, but rather a partner of the team.  So you should always ask when you can expect a result or other information and then (as others have already said) follow up to ensure you get it in a timely manner.  Waiting is never fun, but even less fun when you are concerned about your health so please establish yourself as the "customer" early on.
Lou

Great advice as even here in the US the health system isn’t as efficient as it should be.  A good strategy is to eliminate the word “wait”.  If something doesn’t look or feel right, rather than waiting for a situation that may or may not sort itself out, it’s better to be proactive and start asking questions.  

Great advice as even here in the US the health system isn’t as efficient as it should be.  A good strategy is to eliminate the word “wait”.  If something doesn’t look or feel right, rather than waiting for a situation that may or may not sort itself out, it’s better to be proactive and start asking questions.  

It’s been a couple of years since I posted my response and I personally don’t think it was figured out. With me I think it was recovering from my surgery. I hope you get it figured out. 
paula

See if you can find some Manuka honey with tea which does wonders for post procedure sore throats.  The higher the floral count the better.   Good luck!