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Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Alumni Mentor @merpreb, Dec 11, 2018

We have multifocal adenocarcinoma of the lung. @linda10 and @sakota.- Please join me in this discussion.

For a short explanation of this tongue twister. Briefly, Multifocal Adenocarcinoma (MAC) of the lung is a clinical entity of multiple synchronous (less than 6 months) or metachronous (more than 6 months), often ground-glass opacities (GGO) on CT scan, typically indolent-behaving cancers. There is a scarce amt of clinical data to guide treatment decisions.
This came from http://ascopubs.org/doi/abs/10.1200/JCO.2017.35.15_suppl.e20041.

This means that more than one potential cancerous lesion, mostly ground glass, shows up at a time. For instance I had 3 cancerous lesions 10 years ago in my left lung and in the same area. They were all different sizes. They grow at different rates.

Multifocal adenocarcinoma is a very complex cancer because the medical profession doesn't know if the ground glass lesions are the primary cancer or small metastases of another primary cancer. They don't even know where they start..

Multifocal Adenocarcinoma has sub types and it's management is based on whether it's indolent or very virulent.

These are very simplistic explanations. Even doctors are confused by it and it's only been within the last twenty years that they have separated it from a Bronchioloalveolar Carcinoma (BAC).

The constant recurrences are the buggers. Not only do we have to constantly face lots of CT scans but when lung cells change, which they often do, we are in terror of another virulent cancer. I presently have several ground glass lesions. And I have had many that have disappeared. It's enough to drive you nuts and PTSD is exacerbated by the frequency of these devils.

Interested in more discussions like this? Go to the Lung Cancer Support Group.

ladylennie | @ladylennie | Mar 24 7:01pm
In reply to @lls8000 "@ladylennie , I'm sure you'll keep an eye out for any issues after your 4/1 infusion,..." + (show)
@lls8000

@ladylennie , I'm sure you'll keep an eye out for any issues after your 4/1 infusion, please listen to your body. These treatments can be life savers, but they are hard on us too.
Has your doctor given you any suggestions on what to do differently prior to or after the next infusion? Are there any proactive steps that can be taken now that they know you are susceptible to the colitis side-effect?

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Thank you. Unfortunately the Dr had no suggestions. But I did get my February infusion and except for some minor diarreah I've been ok. Hopefully that will continue.

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sheland1 | @sheland1 | Mar 24 7:27pm
In reply to @lls8000 "@sheland1, You've already had your share of radiation. I'm glad to hear that they are running..." + (show)
@lls8000

@sheland1, You've already had your share of radiation. I'm glad to hear that they are running biomarker tests on your biopsy tissue. It's the best way to match a treatment to the specific type of cancer. It may not mean that you are headed for traditional chemotherapy. Of course, you are worried, but try not to get ahead of the diagnosis too.
Has your oncologist mentioned the possibility of chemo? Or are they waiting for the biomarker tests to come back?

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Scheduled to start radiation to the rib lesions.
Everything else is on the table pending biomarker results.
Liquid biopsy should be back by end of the week - last time I took that test nothing came up but biopsies showed differently.

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1 reply
dedehans | @dedehans | Mar 25 6:33am
In reply to @lls8000 "Hello @trudyhs, I have a different mutation, ALK. Were you recently diagnosed? Have you started any..." + (show)
@lls8000

Hello @trudyhs, I have a different mutation, ALK. Were you recently diagnosed? Have you started any treatment yet? Possibly a targeted therapy, capmatinib or tepotinib?

@dedehans, is this the same mutation that you have?

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yes. Xon14. Waiting on CT scan next month as new GGO showed up on Jauary's scan. Will find out if the Xalkori (Crizinitinib) is still working. Been lucky9 years on it so far. I will post.

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Mentor
Lisa, Volunteer Mentor | @lls8000 | Apr 2 4:09pm
In reply to @sheland1 "Scheduled to start radiation to the rib lesions. Everything else is on the table pending biomarker..." + (show)
@sheland1

Scheduled to start radiation to the rib lesions.
Everything else is on the table pending biomarker results.
Liquid biopsy should be back by end of the week - last time I took that test nothing came up but biopsies showed differently.

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@sheland1, I'm just checking in on you. How's the radiation going? I'm curious if your biomarker test has come back? They can take a while, so maybe not yet. There always seems to be more waiting to be done. Hugs.

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sheland1 | @sheland1 | Apr 2 5:05pm

Thanks for checking in.
Radiation to start next week-completed the simulation yesterday.
Biomarkers were KRASg12c and PIK3CA
There is a targeted therapy for KRASg12c but it is not used as a first line treatment
Once I have finished the 5 radiation treatments I will start a chemoimmunotherapy of carboplatin and pemetrexed and an immunotherapy TBD pending PDL-1 results
The PDL-1 when I was diagnosed was 0% -if it is the same this time I will have nivolumab and ipilimumab
If it is positive I will have Keytruda
Anyone have anything similar??

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1 reply
denzie | @denzie | Apr 2 6:23pm
In reply to @sheland1 "Thanks for checking in. Radiation to start next week-completed the simulation yesterday. Biomarkers were KRASg12c and..." + (show)
@sheland1

Thanks for checking in.
Radiation to start next week-completed the simulation yesterday.
Biomarkers were KRASg12c and PIK3CA
There is a targeted therapy for KRASg12c but it is not used as a first line treatment
Once I have finished the 5 radiation treatments I will start a chemoimmunotherapy of carboplatin and pemetrexed and an immunotherapy TBD pending PDL-1 results
The PDL-1 when I was diagnosed was 0% -if it is the same this time I will have nivolumab and ipilimumab
If it is positive I will have Keytruda
Anyone have anything similar??

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Mine is KRAS G12F. I just finished carboplatin and pemetrexed. My PD-L1 was less than one but more than zero so I also got Keytruda (pembrolizumab). Going forward I will have maintenance treatment with Alimta and Keytruda.

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1 reply
sheland1 | @sheland1 | Apr 2 7:13pm
In reply to @denzie "Mine is KRAS G12F. I just finished carboplatin and pemetrexed. My PD-L1 was less than one..." + (show)
@denzie

Mine is KRAS G12F. I just finished carboplatin and pemetrexed. My PD-L1 was less than one but more than zero so I also got Keytruda (pembrolizumab). Going forward I will have maintenance treatment with Alimta and Keytruda.

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How did you tolerate the treatment? How many infusions did you have? Any tips for getting through it?

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denzie | @denzie | Apr 2 9:56pm

This combination is much easier than what I had for my first, and completely different, lung cancer. My biggest issue was some mild nausea, the med they gave me to manage that caused constipation. After the first round, I learned to use a mild stool softener every day.

Taking the post treatment steroids helped manage the nausea as well. I have some body aches that are managed well with Tylenol.

Another issue I had was low white blood count. I had to postpone my second infusion a week to allow time to build it up. Protein bars and shakes helped build that back up.

I've had 4 rounds of the carbo, Alimta, Keytruda protocol. Next week I will move to maintenance treatment of Alimta and keytruda. I will continue that every 3 weeks.

REPLY
1 reply
sheland1 | @sheland1 | Apr 3 12:04pm
In reply to @denzie "This combination is much easier than what I had for my first, and completely different, lung..." + (show)
@denzie

This combination is much easier than what I had for my first, and completely different, lung cancer. My biggest issue was some mild nausea, the med they gave me to manage that caused constipation. After the first round, I learned to use a mild stool softener every day.

Taking the post treatment steroids helped manage the nausea as well. I have some body aches that are managed well with Tylenol.

Another issue I had was low white blood count. I had to postpone my second infusion a week to allow time to build it up. Protein bars and shakes helped build that back up.

I've had 4 rounds of the carbo, Alimta, Keytruda protocol. Next week I will move to maintenance treatment of Alimta and keytruda. I will continue that every 3 weeks.

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Thank you for that!
What was your first combo?

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1 reply
denzie | @denzie | Apr 3 12:36pm
In reply to @sheland1 "Thank you for that! What was your first combo?" + (show)
@sheland1

Thank you for that!
What was your first combo?

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I had Cisplatin and etopicide with concurrent radiation.

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