I'm sorry may have missed something while I was not on for a day or 2, but when I click on discussion forums than Lung cancer as I always do everything is wiped clean what happened?? I don't know how to look back at previous posts etc...
I'm so confused.
Sleepless

Hi All, I just want to ask if anyone ever tried using medical cannabis as an alternative meds? I have read many articles about medical marijuana and how it can help you in terms of chronic pain, glaucoma, eating disorder/anorexia, anxiety disorders and panic attacks, inflammation, even cancer and a lot more. Like this article about a marijuana strain SFV OG. Cbd and thc are also new to me and I don't even smoke. If this is true I cant find any solid conclusive evidence that speaks to its efficacy. Any personal experience or testimonial would be highly appreciated. Thanks

I think that Janine, at Certain Spring's request, established a new member update topic for me, which I really appreciate.

I am not savvy enough to figure this out myself, so I was wondering if it is possible for you to copy the following posts to that forum topic: Blue Skies in DC/Member Updates:

#1245269, 31245322, #12467995, #1246943, and #1246793

As I recall, earlier posts have been archived and are difficult/unable to be brought forward into the new site (incorporated as part of my member update forum entry). Is that correct? Otherwide, I'd go looking for the earleir updates I posted to capture the direction of my ellness and treatmetn. There wouldn't be very many of those. I was mostly a lurker.

Thanks for your help.

I successfully reposted my profile narrative, but my "status" shows me as a newbie with one post...even on archived posts...so my prior account activity apparently isn't linked to my current profile. Baby steps every day!

In this video, Dr. McKean discusses combination immunotherapy vs. monotherapy for Metastatic Melanoma.   Download Transcript Here

Meredith McKean MD, MPH with Tennessee Oncology, Michael Postow, MD Chief of Melanoma service at Memorial Sloan Kettering and Sanjiv Agarwala, MD, Professor of Medical Oncology and Hematology at Temple University School of Medicine in Easton, PA joined GRACE to discuss current updates in treatment for Melanoma.   

Check in regularly to our home page for new, up-to-date videos and articles then join us here on our forums to discuss or ask questions.  If we, the moderators can't confidently comment on your post we ask our faculty to join the conversation.  Check in regularly to our home page for new, up-to-date videos and articles then join us here on our forums to discuss or ask questions.  If we, the moderators can't confidently comment on your post we ask our faculty to join the conversation.

Take care,

Janine

Hi all, my mom had RUL lobectomy in September, 2017 and finally finished adjuvant chemo last week.
At the last meeting with her oncologist, he recommended her to go on a clinical trial for adjuvant Pembrolizumab after resection with standard adjuvant chemo (vs. Placebo).
We're still considering whether she'll be on it or not.

Here is brief information about my mom.
- 59y
- fully resected stageⅡb NSCLC (invasive ademocarcinoma, grade 3)
- completed 4 cycles of adjuvant chemo (NP)
- EGFR mutation - exon 21(L861Q-rare mutation)
- PD-L1 expression 30%

As you can see, she is both EGFR and PD-L1 positive.
It could mean we have more options if the cancer comes back later.
Using Pembrolizumab in advance may prevent recurrence but if it doesn't work well, it might limit our treatment option.
This is why I haven't decided yet.

Could you give me some advice on participating in this trial?
I believe that every single word from all of you will be helpful for me to make a decision.

Thank you for your advice in advance.

If you're like me you may not check on the homepage for new blog posts and videos.

Below is a new blog post on cancer pain. Thank you Dr. Blanchard.

http://cancergrace.org/cancer-treatments/2014/09/04/cancer-pain-where-a…

Hello Friends —
We are scheduled to go live with our new GRACE site on September 4 around 3 pm, barring no showstoppers.

The majority of your accounts have been migrated to the new site, except for the newest ones. Those people will need to re-setup their accounts, my true apologies. Everyone else will need to re-sign in and set up their profiles, with new passwords. (sorry – we couldn’t bring all of your information over. I wish we could have).

We also, unfortunately, did not receive enough funding to pay for the migration of all the old forum threads. I am currently trying to copy and paste the newest ones into the new site so we at least have some overlap. Anyone who has written in this forum who is fairly new to GRACE and does not have an account that migrated over will show as anonymous in the threads that I am copying over. After you set up your new accounts I can go in and re-assign any previous threads to your active account in the new site.

There will be some stuff to shake out – including tagging and how the videos and articles are found within the new site. I will be continuing to work on this and ask for your patience and understanding! The good thing is that the search bar works. yay.

Thanks for your understanding, it has been a long time coming, change is hard, but change is good. I think you will like what you see (when we all get used to it!)

Many regards!
Denise

Hi All - 

I was approached by a WhatNext Group partnered with Rare Patient Voice, with the opportunity to participate in a study specifically for Non-Small Cell Lung Cancer patients and caregivers.  I am neither at this time (though I was in the past), and so declined their offer.  I did, however, tell them I would pass on the information to our community through the forums.  If you are interested in participating, please sign up with WhatNext (www.whatnext.com), or email Ingrid Kaugars at ingrid@whatnext.com.   The study, if it is a fit for you, offers $125.00 for what they say is a 75-minute process.  You must contact them for an individual unique link.  :) 

Below are some of the details, to help you decide if you want to participate.  

Thanks for being a member of WhatNext, partnered with Rare Patient Voice. We have an opportunity for you to take part in a Cancer study. It is for Non-Small Cell Lung Cancer. Our project number is ZS_2592.

Study Details:

• Looking for Non-Small Cell Lung Cancer patients and caregivers
• Webcam interview
• 75 minutes
• $125 reward

Things to Note:

• Patient and/or caregiver study
• Unique links, please do not pass along for 2^nd use
• Want to share this opportunity? Let us know and we can provide a new link
• Please use a laptop/computer ONLY. No smartphones or tablets - Preliminary questions are Mobile Friendly!
• Save this email to reference if you have any questions about the study!

 

Just sharing, I think avenues to get the patients heard are excellent - so if this is any help, I am happy to share it.  

My mother was diagnosed with stage 4 NSCLC in September 2014. She is EFGR positive and T790M positive. She was first on Tarceva, then carboplatin/alimta plus tarceva, then tagrisso. Progression on tagrisso started in December 2016. She then tried one round of Keytruda because her PD-L1 expression was 60%. Due to extreme coughing and to rule out pneumonitis, a CT scan was done right before her second round of Keytruda. Scans show very large growth on existing tumors and new growths. The oncologist thought it would be better to switch to chemo to try to control the growth as soon as possible because immunotherapy tends to take weeks to months to be effective. By then, the cancer could have grown too much. So she had 2 rounds of docetaxol, which did nothing and the cancer continued to progress. Now she had 2 rounds on navelbine and CT scans show mixed results. Some tumors are slightly smaller but others have remained the same or grew a tiny bit. She will continue on navelbine until much clearer progression shows.

But what options does my mom have after? The oncologist thought it would be worth a shot to retry tagrisso because she is still T790M positive. The oncologist thinks there is a higher chance of tagrisso working than to retry any type of immunotherapy? She said that most EGFR positive patients do not have good results on immunotherapy and that my mother was a rare case who was EGFR positive and had a high PD-L1 expression.