Hello-
I am a 50 year old mother of 5 and while happy to have found this site and all of the fantastic information on it, I am also sad any of us have to be here at all. Surely that makes sense to someone else!
After of 4 months of treatment for pneumonia (which I did not have), a bronchoscopy revealed NSCLC Adenocarcinoma. I found out on Sept. 4, spent the entire next week doing all the scans and it has spread into brain, spine and other bones. There is a spot on the liver but it barely lit up on PET and no one seems to be as concerned with that one. I was immediately set up with a local radiation oncologist who wanted to start WBRT that week! I already had an appt. the following day with a well known cancer center in Texas and told him I would wait to get that opinion too.
So that is what I did...and the recommendation was different, so I am so confused. They want me to do a repeat Bronc to see if I have one of the mutations, although the original one did EFGR and ALK and those were negative, the doc said those test have a 20 % false negative rate and wanted to test again for those and the other less common ones. The problem with that is: it has taken one week to get a Bronc. set up there and then the wait time of 2 weeks for the results, so I would be waiting for that time with no treatment. They thought that the 50% chance I could have some targeted therapy and POSSIBLY avoid WBRT was worth it. This has caused considerable anxiety over the conflicting info, but I can tell now from my research, that this journey will have many questions along the way and the answers wont always be clear!
Has anyone been in this situation? And, I'm really just hoping to find a support system of people on this forum!
Kelli
Reply # - September 22, 2014, 01:07 PM
Kelli, Welcome to Grace. Yes
Kelli, Welcome to Grace. Yes we know it's a hell of way to get to know people but I think we can be very helpful for you and you us, it works that way. I hope this is the beginning of a long long acquaintance. I'm so sorry you've got the need to be here. You're so young and so busy with life.
Dr. West says it's possible for lay people to be as educated about lung cancer treatment and management as the specialists and more so than a general medical oncologist just because we've got so much to gain. So again welcome.
It's important to get your treatment started the right way. As for brain mets, the standard, proven way to treat is either WBR or if only one or very few mets in the brain are found stereotactic radiation to each tumor. However their is some recognition that ALK positive and maybe other targeted therapies do penetrate the so called blood brain barrier. This would need to be decided on on an individual basis mostly depending on if the brain mets are symptomatic.
Let me leave you with a couple of blog posts and videos to get you started.
This isn't the newest info and is focused on chemo but the message at the beginning is one of my favorite messages, http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…
On testing for many mutations, http://cancergrace.org/lung/tag/multiplex-testing/
on immunotherapy, http://cancergrace.org/lung/2014/08/25/iaslc_gandhi_promise_immunothera…
new trial, http://cancergrace.org/lung/2014/08/19/14731/
I hope this helps get you started.
All the best,
Janine
Reply # - September 22, 2014, 07:30 PM
I would say that there is no
I would say that there is no wide recognition of a 20% false negative rate and that the clear standard of care is to test for EGFR and ALK once and consider it a fair test. Could the test be wrong? Yes, but I don't believe the 20% number, and I would definitely say that it is completely groundless to say that there is a 50% chance someone who already tested negative for an EGFR mutation and ALK rearrangement will have a driver mutation with an appropriate targeted therapy that would obviate WBRT. Moreover, we usually favor WBRT even if a driver mutation is detected.
It's important to know that giving a targeted therapy after the start of first line therapy isn't a clearly wrong thing to do, so I see no serious downside to initiating treatment in a timely way and considering targeted therapy later, in the unlikely but possible event that a driver mutation is now detected. With EGFR mutations representing only about 10% and ALK rearrangements only seen in about 4-5% of the North American population, there is not another 35% of patients with a different driver mutation that has a validated, accepted treatment. I would consider the 50% number to exceed the range of optimistic and to nudge into the realm of delusional optimism.
-Dr. West
Reply # - September 23, 2014, 05:35 AM
Hi Kelli,
Hi Kelli,
You've already received plenty of good information from Janine and Dr. West, so I'll just add my welcome to GRACE. I too am sorry that you need to be here, but we look forward to helping you with the inevitable questions that will arise.
Good luck with your treatments, and let us know how you're doing...you're part of the GRACE family now!
JimC
Forum moderator
Reply # - December 11, 2014, 07:06 PM
I think I was so overwhelmed
I think I was so overwhelmed I couldn't even write back. Three months later, I want to respond. I have been on the site 1000 times since then but just didn't post. So, thank you Janine, Jim and Dr. West for responding! Dr. West - I especially appreciate your candor and smiled every time I thought about your use of "delusional optimism." So true, as I did not have ANY mutations show up!
However, I did start chemo Carbo/Alimta instead of WBR. Radiology Onc. backed off his original stance of starting that week and the Thoracic Onc changed his tune as well and suggested WBR would need to be done after 2 rounds. All of this produced further confusion and anxiety for me, but I have learned so much through the many twists and turns of the past 3 months.
Once again, I am at a decision point. New scans show lungs are responding very well to chemo and then a brain MRI showed some mets have completely resolved and the rest have shrunk according to the report. Do I go for the 4th round of chemo or stop and do the radiation. Recommendation is either way. I have to decide quickly as either one would have to take place on Monday.
This journey is so difficult and I am so happy I found this site. You are all so wonderful.
Kelli
Reply # - December 11, 2014, 07:32 PM
Hi Kelli,
Hi Kelli,
It's good to hear that you've had a good response to chemo...thanks for the update.
I think the reason that the recommendations don't favor one of the options over the other is that there are factors in favor of (and against) each of them. Another round of an effective chemo is reasonable and doesn't shut the door on radiation later, although in general the greatest benefit of chemo in terms of shrinkage is normally seen in the first couple of cycles. Radiation is normally the most effective treatment for brain mets and is usually performed without delay, before those metastases can cause serious symptoms, but in your case they have resolved or become smaller, so perhaps the need is not as pressing.
The GRACE faculty cannot make a specific recommendation, and as you can see even the doctors directly involved in your care don't have a preference, so either option seems reasonable.
Good luck with whichever option you choose.
JimC
Forum moderator
Reply # - December 11, 2014, 08:00 PM
Hi, Kelli. I don't have any
Hi, Kelli. I don't have any medical advice to offer, just being a hopeful but overwhelmed patient like you, but I want you to know there are many of us here who can appreciation the confusion you've been going through. I'm glad things seem to be going well for you, and I'll keep my fingers crossed for you, in whichever order you have whatever treatment you decide on. I'll be thinking of you and hope you keep us posted on how you're doing.
Nan
Reply # - December 11, 2014, 08:06 PM
Thank you Jim for your quick
Thank you Jim for your quick reply:) I have spent the last 2 hours reading many posts on Leptomeningeal Carcinomatosis It certainly speaks as to treating the brain earlier rather than later. I was wondering if Liz had any of her original brain mets on the meninges lining and how she tolerated the WBR when she had it.
Btw, I love yours and Lisa's story. So awesome.
Kelli
Reply # - December 11, 2014, 08:59 PM
Hi Kelli,
Hi Kelli,
When they were first discovered, Liz had 8-10 small lesions, none of them on the meninges lining. She tolerated WBR pretty well, although she was quite fatigued for at least a couple of months.
As far as Lisa's and my story, thank you; we like it too!
JimC
Forum moderator
Reply # - December 12, 2014, 07:44 PM
As a reflex, we generally
As a reflex, we generally favor earlier treatment of brain metastases, given the potential consequences of progression and the less extensive track record for chemotherapy in the brain -- though responses of brain metastases to chemo are definitely very believable.
I think it would really depend on whether I'm planning to give 4 or 6 cycles of the doublet. If I were planning to stop after 4 cycles, I might just give the fourth cycle and then transition to brain radiation. On the other hand, if I were thinking more along the lines of 6 cycles (which is perhaps a question of how well tolerated the treatment is, and otherwise just oncologist and patient preference), I would be most comfortable jumping in with radiation and then resuming a few more cycles of chemotherapy. There is no right answer, but it certainly wouldn't be wrong to ensure that the brain metastases are dealt with promptly.
Good luck, and I'm glad my candor didn't put you off!
-Dr. West
Reply # - December 28, 2014, 04:22 PM
Hi Kelli!
Hi Kelli!
I am new to this site but wanted to let you know you are not alone at all. The few days that I finally opened up here were the best days I have had in months. I was diagnosed with nsclc with mets to the vertebrae and ribs. I tried to go the trial route just to have them reject me twice because no mutations show up in my tissue. Anyway, I am at least 6 months with no treatment and anxiously waiting on my local cancer hospital to schedule me for chemo. Just wanted to let you know that we can go through this journey together...I will be here for the long run!
Karen
Reply # - January 5, 2015, 01:58 PM
This place rocks, Kelli! You
This place rocks, Kelli! You will find more information in 5 minutes (without the nonsense) here than on most other sites in 5 hours. If I read your original post correctly, you likely went to MD Anderson to the Thoracic department and one of their fine doctors. Dr. Fossella conflicted with our guy in Corpus Christi, and I'm glad we listened to his recommendations. Research and knowledge is power in the cancer war, and don't be afraid to ask questions of your doctors. If they brush you off (like the guy in Corpus did me) find another doctor.
On a side note, Teacher Wife had the WBR and came out just fine.