Starting treatment

[Chuck K]

Hey everyone this is my first forum having problem navigating it so I'll start typing here. I posted couple weeks ago that I started a new job and physical x-ray showed spot on outside of right lung after pet scan and robotic surgery to go in and take biopsy . So have 3 cm mass on lung ,tumor on back chest wall 4cm maybe and couple limphnodes above lungs .Brain scan is clear. Treatment starts 10/14/21, four cycles chemo ,immunotherapy Keytruda and continue on with another chemo.I asked Oncologist about targeted radiation he said not appropriate. This is really scaring me don't think I'm getting the best Treatment possible. Trying to be positive but it's really hard 

[LexieCat]

Hi, Chuck,

Sounds to me like you're getting typical first-line treatment. I assume, based on your description above, that you are most likely Stage IV--did they tell you what stage? Radiation isn't appropriate for everyone. It depends on the stage of the cancer, as well as the type, size, and location of the tumors. For instance, I COULD have had radiation, but every doctor I saw strongly urged against it--they said it would likely "destroy" my quality of life based on the location of the tumor (potential serious damage to esophagus).

You should always ask the doctors to explain--why is radiation not appropriate in your case? We have to be advocates for ourselves and insist on explanations for anything we are concerned about. You are also free to seek a second opinion. I've done that in a couple of situations--in one case, switching cancer treatment centers. It's done all the time and can give you peace of mind that you're on the right track.

[Chuck K]

Thanks Lexie it is stage IV and scares the heck out of me. I will ask Dr to explain why radiation isn't an option.I just keep getting discouraging news. Looked at Cancer centers of America web sight seems they have so many for options

[LexieCat]

There are many "options" at most large cancer centers. The thing is, not every option is appropriate for every patient. 

There are also clinical trials all over the country that offer novel treatments not available except through the trial. Most people try at least the standard first-line treatment before going to clinical trials, but there are some trials open to people who have not been treated previously. Lungevity has some resources on clinical trials here: https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/treatment-options/clinical-trials 

Has a sample of your tumor been sent out for molecular/genetic testing? That's important before starting any treatment. The testing will show whether you have a mutation that might respond to targeted therapy (a pill). Often, people who can get targeted therapy do very well on it. I don't have any mutations, so it won't work for me, but it's worth finding out if you might qualify.

[Chuck K]

Hey Lexie

Waiting on that test to come back fingers crossed. Dr said 10% of patience have that mutation. I keep reading about radiation therapy helping a lot of people. Think I'll contact another cancer center in the near future for second opinion Thanks for listening Lexie it really helps

[Tom Galli]

Chuck,

I'm a fan of radiation. Stereotactic Body Radiation Therapy (SBRT) saved my life after 12 infusions of Taxol and Carboplatin failed to address a stubborn lung tumor.

Multifocal precision radiation (using precise radiation to target multiple tumors) is sometimes administered. Here is a link with information about radiation treatment for lung cancer. Read particularly the right arrow topic: "How radiation therapy fits into lung cancer treatment plans." In addition to starting chemo on 10/14, I'd ask for a consultation with a radiation oncologist. While your medical oncologist is knowledgable about radiation treatment, the radiation oncologist is the subject matter expert. 

You didn't tell us the type of lung cancer you have. It will also be helpful if you tell us the conventional chemotherapy drugs you will receive in addition to the immunotherapy drug Keytruda. Those of us who've had this treatment might be positioned to assist you if you have side effects.

Normally one completes first-line (first treatment) standard of care treatment before thinking about trials or cancer research hospitals. Keytruda is good stuff. It is a game changer and I know many stage IV folks who are living long lives after successful treatment. Ask for a radiation consultation but power through your chemo starting Thursday.

Stay the course.

Tom

[LouT]

Hi Chuck,

Welcome to our forum.  Lexie and Tom have covered a number of your concerns pretty well so I won't repeat that here.  I did want to address your "Cancer Centers of America" comment though.  That website has a number of flaws.  First of all, they only accept the cases that they want to and so it would be hard to know if their outcome stats and results could be extrapolated across a general population of cancer patients.  Second, when you are being treated doctors will always talk about things like "Gold Standard" referring to treatments that have proven the most successful based on the conditions the particular cancer presents.  So, stay away from websites meant to sell their services as well as Dr. Google.  Rather, go with what your medical team tells you and don't be afraid to ask questions and test their assumptions.  

Tom wrote a great piece on surviving lung cancer.  "10 Steps to Surviving Lung Cancer; by a Survivor" and it can be found here.   It really covers a lot to help you navigate these new waters you are in.  Hang in there and you'll soon find you'll do better than you think.

Stay strong.

Lou

[Chuck K]

Tom asked what kind of cancer I have, it's non small cell adenocarcinoma. Chemo drugs I'm getting is carboplatin and pemetrexed. Thank you both Tom and Lou for the advice I'll check out the 10 steps to surviving lung cancer

Chuck

[LexieCat]

Carboplatin and pemetrexed (also known as Alimta) are the two chemo drugs I got, along with immunotherapy (pemrolizumab/Keytruda). It's a good, solid first-line treatment plan--lots of people here have had it. It was very effective for me, though once it went to maintenance therapy (only Alimta and Keytruda), my cancer started to progress. Unless it turns out you have a targetable mutation, you're getting a good treatment plan.

Incidentally, I share Lou's misgivings about Cancer Centers of America. There have been a lot of stories about questionable practices to increase their "success rate." 

[Chuck K]

Thanks Lexie hopefully I'll feel better once I start treatment 

Chuck

[Susan Cornett]

Hi Chuck - 

I'm a little late to the discussion but wanted to chime in. I was diagnosed with non-small cell adenocarcinoma, stage IV, in February 2016. I had surgery followed by chemo (the same regimen you're taking). I didn't have any targeted therapies so my treatment didn't include Keytruda or any other meds.  I would definitely ask about the radiation. Lexie is right - you have to be your own advocate. Ask until you get answers. Keep asking. If your team isn't helping you, find a team that will. 

By the way, I was in Ocean Springs about three weeks ago. It's one of my favorite coastal towns. 

Reach out with any questions. 

[RJN]

Just my two pennies worth: Here in the UK, radiation is only used for NSCLC stage 4 as first-line for specific metastasises such as the brain. My medical team seems to think that 1. Systemic treatment such as immunotherapy and chemotherapy is critical to cancer which has already spread to avoid further metastises and 2. Radiation can be a very harsh treatment and should be used only if other treatments don’t work. Having said that, I am in a stage 3 trial (called the SARON study) which uses two types of radiation to target metasises and main tumour after the first course of systemic treatment is completed, and apparently it is showing good results. 

[Chuck K]

Hi Susan glad you got to visit Ocean Springs. Well I got a call from my Oncologist yesterday 10/19/21 he said test came back positive for ALK mutation what that means I'm still learning. He said I stop chemo and take a single pill . Iv only been on chemo for 6 days now kinda glad that stops. Thanks everyone for listening 

Chuck

[Judy M2]

Chuck, the ALK mutation is treatable with a targeted therapy drug your doctor mentioned. If you go to the NSCLC Group on this site, under Lung Cancer Mutations, you'll find the ALK+ subsection. LUNGevity also has the private Facebook group "LUNGevity Targeted Therapies Group" which includes a broad community of targeted therapies for your mutation and others. There may be other ALK groups out there. I have a different mutation (EGFR). There are side effects with my drug, which I find to be minor and pretty manageable. Best of luck! 

[Rower Michelle]

Hi Chuck,

Sorry I’m late to the thread here and wanted to chime in and say hello as I also have the AlK Positive Mutation.  I’m assuming if your on a single pill that’s Loratinib, which can be used for first line treatment.  The dosing for Loratinib can be tricky as it’s fairly new so dosing decreases are very common.  ALK is one of the rarer mutations there are a few international specialists here in the US: the closest one to you is Christine Lovely at Vanderbilt University.  D. Ross Camidge is at the Colorado University.  He does telemedicine consults for out of state patients.  There is a second opinion program offered by www.alkpositive.org with financial assistance available.   
 

ALK has three common variants or sub-types.  It’s very important to ask which variant you have.  For example I have something weird: E6; A19 which is closely associated with Variant 1.    Variant 3 may require more frequent monitoring.  
 

I agree with my friends here as Cancer Centers of America isn’t a major academic center and for the best management of AlK a large healthcare system is a better choice  Lungevity or Go2Foundation can help locate a doctor for you.  
 

I live in KC and see a doc with a “large ALK” practice which translates to four patients.  I’ve been No Evidence of Disease for a few years now but that’s not to say it’s been an easy road as I’ve had a few bumps along the way due to the targeted therapy side effects.  
 

ALK Positive has a robust Facebook community and now a YouTube channel featuring research experts. The most recent AlktALK with Dr Ou is exceptionally good.  
 

The ALK Talks are almost every Sunday, there’s also a calendar of free Zoom activities each week which is a great way to chat with other ALKies.  
 

Nice to meet you!

Michelle

[Rower Michelle]

Oh and BTW, these ALK drugs work very quickly, I felt better in three days, my cough resolved immediately after only one dose.  There’s hope on the horizon! 

[Chuck K]

Hi Michelle 

Thank you for all the advice. Don't know the variant yet I'll ask the oncologist. Haven't started the pill yet I'm a 9 days into the first cycle of chemo then that stops then I start the pill don't know the name of it  think it starts with an A. This is stressing me out ,here start chemo and Keytruda but wait you have a mutation alk .I don't even know if I'll be getting the single pill and Keytruda or just the single pill. I guess I'll trust the oncologist and start the new meds. I do have chemo in my system so hope it's fighting something. Wish I was a candidate for surgery or radiation but have to hope the drugs do some good

Chuck

[Rower Michelle]

This makes sense to me Chuck- the name of the drug is Alectinib, you will take 3-4 pills twice a day with a fat (nuts, avocado) for best absorption in order to avoid nausea. 
 

Like you I started on chemo/immunotherapy first then when the biomarker test came in I started Alectinib three days later (after insurance approval).  
 

Keytruda doesn’t work for the AlK mutation so you can expect to immediately stop the infusions.   
 

ALK is treated as a chronic condition, two summers ago I met survivors who were more than ten years past a stage IV diagnosis.   Let us know how you make out. 

[Chuck K]

Hi Michelle 

Thank you for the knowledge starting to have some hope now. Just need to get it started hopefully around 11/6/21.

Chuck

[Rower Michelle]

Hopefully you won’t have to wait until the 6th to start Alectinib.  My transition was immediate. The standard of care is to use the most effective treatment first and hold off on additional chemo.