Multifocal Adenocarcinoma of the lung, continual recurrences

Posted by Merry, Volunteer 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 group.

@merpreb

Good morning @akfishinmom1-Yes, it's what is used now for multifocal lung cancer if surgery isn't the best choice.

This procedure is sometimes called stereotactic body radiotherapy (SBRT) or stereotactic ablative radiotherapy (SABR). The procedure uses many precisely focused radiation beams to treat tumors. It's quick, as far as the number of radiating days and there are very few side effects. Fatigue is the biggest side effect that I have found. I've had it twice and it looks like I will have my third this year.

It's painless and you get to lie still for about an hour and dream! Do you have any concerns?

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My Pulmonologist mentioned it to me as a future possibility. My tumor tissues were sent for complete analysis to identify any mutations that are known to be more sensitive to specific types of treatment (radiation, immunotherapy etc.)

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@akfishinmom1

I was wondering if anyone with multifolcal lung cancer in this group has ever been offered targeted therapy to get rid of or reduce the remaining lesions they might have?

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I believe they tested my genetics to see if I was a candidate for targeted chemo therapy and I wasn’t, but I do know someone that did very well with targeted chemo.

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@jamineibs

I believe they tested my genetics to see if I was a candidate for targeted chemo therapy and I wasn’t, but I do know someone that did very well with targeted chemo.

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@jamineibs – Good morning. With multifocal adenocarcinoma surgery or targeted radiation – SBRT is the protocol. Chemo is usually preserved as life-extending after all other options have been used. It's the nature of our beast. Perhaps there will come a time when there is a test that can tell which lesions are likely to become cancerous and which are not.

We have some crazy cancer, right?

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@merpreb

@jamineibs – Good morning. With multifocal adenocarcinoma surgery or targeted radiation – SBRT is the protocol. Chemo is usually preserved as life-extending after all other options have been used. It's the nature of our beast. Perhaps there will come a time when there is a test that can tell which lesions are likely to become cancerous and which are not.

We have some crazy cancer, right?

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@merpreb, My team ran the tests for targeted chemo at the onset of my diagnosis in the event things started growing quickly at any point, then we’d know if it were an option for me. I understand from what my team has explained, some forms of adenocarcinoma can be aggressive.

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@merpreb

I know. Omicron can be in the air! Rest, drink plenty of water, and if you aren't too ill, walk if the weather is good!

Omicron can last in places that Delta couldn't! WHen do you see your doctor next?

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Here is an update on my Covid situation. I am on my 5th and last day of antiviral treatment. My blood oxygen is great, my breathing much easier and my "congested" cough 95% improved. I tested positive (PCR test) for Covid 4 months after my third Pfizer dose and 30 days after my VAT surgery. Symptoms after surgery just changed into symptoms from Covid. Apparently, surgery weakens immune system (and I was under for 3 hours). What is also of note is that I had no contact with family/friends, and I always wore an N95 mask when leaving home, only curbside pickup of groceries/takeout, never entered any building but my own, never lingered in common areas and only occasionally passed someone on the stairs. I use a Merv13 filter with my independent air/heating unit. Therefore, I caught Covid through groceries/takeout food packaging or aerosols in my building. I will start again spraying disinfectant on all packaging. I am looking for a spacesuit.

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@vic83

Here is an update on my Covid situation. I am on my 5th and last day of antiviral treatment. My blood oxygen is great, my breathing much easier and my "congested" cough 95% improved. I tested positive (PCR test) for Covid 4 months after my third Pfizer dose and 30 days after my VAT surgery. Symptoms after surgery just changed into symptoms from Covid. Apparently, surgery weakens immune system (and I was under for 3 hours). What is also of note is that I had no contact with family/friends, and I always wore an N95 mask when leaving home, only curbside pickup of groceries/takeout, never entered any building but my own, never lingered in common areas and only occasionally passed someone on the stairs. I use a Merv13 filter with my independent air/heating unit. Therefore, I caught Covid through groceries/takeout food packaging or aerosols in my building. I will start again spraying disinfectant on all packaging. I am looking for a spacesuit.

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@vic83-haha, no space suit needed. Omicron is very very contagious. You can get it if it's in the air. You must feel extremely frustrated after being so careful and then, BAM.

Remember that no vaccine is perfect, nor is anything else that you try. If I were you I would continue to do what you have been doing. Am I right in thinking that you don't want to live in seclusion?
Are you watching Dr. Greg Poland's podcasts?

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@merpreb

@vic83-haha, no space suit needed. Omicron is very very contagious. You can get it if it's in the air. You must feel extremely frustrated after being so careful and then, BAM.

Remember that no vaccine is perfect, nor is anything else that you try. If I were you I would continue to do what you have been doing. Am I right in thinking that you don't want to live in seclusion?
Are you watching Dr. Greg Poland's podcasts?

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Yes, I watch Dr Poland. I have followed Covid closely since early 2020 because of my contacts in Italy. I was aware of aerosol impact early on and about importance of mask quality and fit. While now people understand about air and aerosols (they can hang in the air for hours), other means of contagion are no longer getting attention. My case demonstrates that other means are quite possible. And the viral load on surfaces? Must be lower than talking to a sick person. But still sufficient. No, I don't enjoy seclusion. Because I am considered immune compromised due to surgery, they recommend quarantine for 20 days – because a weakened immune system allows the virus to linger longer and mutate. But I was already isolated so no big deal.

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@vic83

Yes, I watch Dr Poland. I have followed Covid closely since early 2020 because of my contacts in Italy. I was aware of aerosol impact early on and about importance of mask quality and fit. While now people understand about air and aerosols (they can hang in the air for hours), other means of contagion are no longer getting attention. My case demonstrates that other means are quite possible. And the viral load on surfaces? Must be lower than talking to a sick person. But still sufficient. No, I don't enjoy seclusion. Because I am considered immune compromised due to surgery, they recommend quarantine for 20 days – because a weakened immune system allows the virus to linger longer and mutate. But I was already isolated so no big deal.

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Vic- Somehow, from somewhere you picked up the virus at a miserable time. Not that there is a good time. You are now finished with your treatment for Covid. I know that you were ill at the time, but did you experience any side effects from the anti-viral? Can you tell if there is a difference now that you aren't getting it?

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@merpreb

Vic- Somehow, from somewhere you picked up the virus at a miserable time. Not that there is a good time. You are now finished with your treatment for Covid. I know that you were ill at the time, but did you experience any side effects from the anti-viral? Can you tell if there is a difference now that you aren't getting it?

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I started molnupiravir anti-viral 2/2/22 and one takes it for five days. I had no side effects not even diarrhea. I felt better the next day with more relaxed breathing and improved cough. The cough improved every day. On 2/7/22 I awoke and thought I hadn't felt this good since before surgery. My blood oxygen levels are higher. I still have a very modest cough.
Looking back, I can see that Covid was impacting my recovery. I did wonder why I wasn't more myself at the time. What drove me to Covid testing was that my modest dry cough from surgery had become very frequent and "congested rumbling" in my throat and stuff was coming up. The anti-viral I took is only 30% effective, but it seems to have helped me. Pfizer Paxlovid is much better. My doctor told me that there are not enough of these FDA emergency approved drugs to go around in Minnesota, and the majority of her high-risk patients get nothing. So I was fortunate to get something, and to have a mild case. There is a point system.
I had the third dose of Pfizer vaccine (booster) four months before testing positive. Given all my precautions to not catch Covid, they need to revise advice to people, because the variants require very little opportunity.
I read that CDC now approved fourth dose of mRNA vaccine (second booster) three months from 3rd dose (first booster) but only for people immunocompromised like cancer therapy drugs etc.

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@vic83

I started molnupiravir anti-viral 2/2/22 and one takes it for five days. I had no side effects not even diarrhea. I felt better the next day with more relaxed breathing and improved cough. The cough improved every day. On 2/7/22 I awoke and thought I hadn't felt this good since before surgery. My blood oxygen levels are higher. I still have a very modest cough.
Looking back, I can see that Covid was impacting my recovery. I did wonder why I wasn't more myself at the time. What drove me to Covid testing was that my modest dry cough from surgery had become very frequent and "congested rumbling" in my throat and stuff was coming up. The anti-viral I took is only 30% effective, but it seems to have helped me. Pfizer Paxlovid is much better. My doctor told me that there are not enough of these FDA emergency approved drugs to go around in Minnesota, and the majority of her high-risk patients get nothing. So I was fortunate to get something, and to have a mild case. There is a point system.
I had the third dose of Pfizer vaccine (booster) four months before testing positive. Given all my precautions to not catch Covid, they need to revise advice to people, because the variants require very little opportunity.
I read that CDC now approved fourth dose of mRNA vaccine (second booster) three months from 3rd dose (first booster) but only for people immunocompromised like cancer therapy drugs etc.

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@vic83– I agree with what you have said. I'm very glad that you pushed ahead and took control and got treated. What would you recommend to other people in this group that they need to do if they wind up with symptoms like yours?

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@merpreb

@vic83– I agree with what you have said. I'm very glad that you pushed ahead and took control and got treated. What would you recommend to other people in this group that they need to do if they wind up with symptoms like yours?

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If they have any covid symptoms, they should immediately get tested (and PCR test is the gold standard). If positive, they should call their primary care doctor immediately and tell them they have symptoms and make sure the doctor understands their health issues. In Minnesota (and I imagine elsewhere), the distribution of these FDA emergency approved medicines is controlled by the State, there are not enough drugs to go around, and they are distributed on a point system based on health conditions. And with my experience, realize this virus is far more contagious than people realize, take extra care including packaging and indoor spaces. Also check with doctor to see if they are eligible for the 4th dose(second booster)

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@vic83

If they have any covid symptoms, they should immediately get tested (and PCR test is the gold standard). If positive, they should call their primary care doctor immediately and tell them they have symptoms and make sure the doctor understands their health issues. In Minnesota (and I imagine elsewhere), the distribution of these FDA emergency approved medicines is controlled by the State, there are not enough drugs to go around, and they are distributed on a point system based on health conditions. And with my experience, realize this virus is far more contagious than people realize, take extra care including packaging and indoor spaces. Also check with doctor to see if they are eligible for the 4th dose(second booster)

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Hear, Hear! Thank you

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