Prevention of BAC Recurrence

• By linnea
• Posted April 18, 2009 at 8:19 am
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Stewart, you are fortunate to have caught this at an early stage and that is a big advantage. You are correct about the worry (although some of it is unavoidable)--the best thing you can do is to enjoy every day and to take very good care of yourself (eat the right foods, exercise). Also--has your tumor been tested for mutations? If not--ask that they do so. I have BAC and it has been 4 years since dx. I did have recurrence, but I am currently being treated very successfully with one of the new targeted therapies (still in phase I trial). Focus on staying well but know that even if the cancer returns, there are many options for fighting it. Hope this is helpful and best of luck, Linnea

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• By D1
• Posted April 18, 2009 at 9:10 am
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Stewart, in addition to the advice about diet & exercise which is so sound, this sounds so simple, but drink a lot of water. Water is the body's way to flush itself, cleanse itself, help the kidneys do their job.....also keep up with your scans, all in one place.

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• By Stewart_SYTSTP
• Posted April 18, 2009 at 11:09 am
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Hi Linnea,

Thanks for sharing your experiences. I believe that these experences when integrated positively will enrich our lives.

Yes, the biopsy report on my lobectomy mentions that " Epedemal Growth Factor Receptor mutation study is being performed and a further report will follow." This further report is not yet available and I don't quite catch the significance of this study.

You mentions that you are currently being treated very successfully with one of the new targeted therapies. How is it used to manage your recurred BAC( I suppose that the new one would be quite small and at very preliminary stage since low doze CT monitoring etc. will pinpoint it early) ? Is targeted therapy in the form of pills to suppress the new BAC tumors ?

I could not imagine the scenario of a second lobectomy since the first one is already so invasive ! Is radiotherapy a viable option to tackle small recurred BAC tumors at an early stage ?

Is targeted therapy applicable to everyone or is it only useful for certain genetic makeup ? Is the EGFR mutation study critical in identifying applicable targeted therapy ? Will it turn out that no current targeted therapy is applicable ?

Enough questions for the time being. Good luck and cheers !

Regards,
Stewart

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• By Stewart_SYTSTP
• Posted April 19, 2009 at 6:00 am
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Hi, Linnea et.al. ,

After some research on the web, I could answer some of my own questions. Just for the benefit of others :

1. If my epidermal growth factor receptor is tested to be positive, then there exists some targeted therapy drugs to which my BAC will respond well. If it is negative, then the respond to targetted theraphy will not be good.

2. Non-smokers will respond to these drugs better - luckily I am one (actually 50% BAC cases occur in non-smokers).

3. These targeted therapy drugs are at various trial stages. I Hope these researches advance faster to catch up with any adverse future development in me.

Cheers,
Stewart

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• By linnea
• Posted April 19, 2009 at 8:25 am
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Stewart--my subtype of BAC (histiology I believe) is mucinous. This is a variant of BAC that has been more difficult to treat (hasn't responded to traditional therapy and tends to spread diffusely). BAC is generally slow growing, and that was the case for me, but when it returned I had multiple nodules (33 at last estimate) in both lungs. The mutation I possess (if you go to my profile I posted about my trial) is ALK-4. They are also working on targeted therapies for KRAS, another mutation. So--inquire as to whether or not you are being tested for KRAS and ALK in addition to EGFR. It is true that most of these targeted therapies will work better in nonsmokers, (although they can be identified in people who have smoked as well) because those of us who haven't smoked actually have far fewer mutations, hence making it easier to identify a target. The mutations I have mentioned are only identified in a percentage of nonsmokers, but I feel it is important to at least rule out mutations you don't have as certainly others will be identified. In my case, the ALK-4 is mutually exclusive for EGFR and KRAS so I am truly fortunate that there are therapies being identified for my less common mutation.
I found the lobectomy very difficult as well--certainly the most invasive part of my own treatment. I think it is good that you are seeking to educate yourself--it is much easier to anticipate and make sound decisions when you know what the options are.
Take care, Linnea
:Oh yes--D1 is so right--drinking lots of water is essential--particularly during chemo (my current therapy is capsules, and I still drink lots of water)

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• By Stewart_SYTSTP
• Posted April 19, 2009 at 8:51 am
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Hi Linnea,

Thanks.

Mine is non-mucinous and I'll ask why my BAC is not tested for KRAS or ALK.

The web literature all states that these targeted therapies are for "advanced" BAC. I wonder whether they are applicable to early stage BAC ?

I'll ask my doctor more about it when the EGRF report is available.

Cheers,
Stewart

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• By linnea
• Posted April 19, 2009 at 1:17 pm
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Stewart--I believe there is a movement to use tarceva as a front line therapy--I'm not sure how well accepted that is yet. At any rate--do ask lots of questions of your doctor. Best, Linnea

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• By Stewart_SYTSTP
• Posted April 19, 2009 at 9:54 pm
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Hi Linnea,

Yes, so there exist gefitinib, erlotinib, iressa, tarceva and avastin, ...

I am confident that scientific advance will beat BAC !

Cheers,
Stewart

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• By Stewart_SYTSTP
• Posted April 20, 2009 at 10:59 am
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Hi Linnea et.al.,

My EGRF report states that I harbour one of the two commonest EGRF mutations associated with clinical responsiveness to tyrosine kinase inhibitor therapy.

My doctor also explains that EGRF mutation is relevant to my BAC and KRAS/ALK may not be relevant in my case (they are usually mutually exclusive).

My preliminary web searches indicate that there is about 23% chance that my BAC will respond to gefitinib or erlotinib.

Hope research on these tyrosine kinase inhibitor therapies will advance further to improve the efficacy of combatting BAC !

Cheers,
Stewart

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• By hhhdai
• Posted April 20, 2009 at 11:13 pm
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how does vegetarian life sound to you? Cheers

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• By Stewart_SYTSTP
• Posted April 21, 2009 at 4:44 am
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Hi hhhdai,

Sounds good. Any healthy eating habit is palatable.

Cheers,
Stewart

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• By Alisa
• Posted April 21, 2009 at 12:54 pm
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I take herbs/supplements (only evidenced based, nothing "alternative") to help prevent a recurrence. Feel free to private messenger me if you want more details ....

Take care,
Alisa
NYC

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• By linnea
• Posted April 22, 2009 at 7:38 am
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Stewart--that is good news about your EGFR. Let's hope you are a responder! LInnea

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• By BMeehan
• Posted May 8, 2009 at 9:17 pm
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Greetings! I'm new to this website and hope that I can help others and that I can get some insight from others who are going through LC treatments.

I was diagnosted in March 2007 with NSCLC. I underwent 6 months of chemo (Gemcitabine and Carboplatin), after which they discovered that I had BAC. I had two lung surgeries (11/07 and 02/08) which removed approximately 50% of my lungs. I had 6 months of clean scans but as often happens with BAC, there were new growths discovered in Oct. 2008. I was put into a trial that put together tarceva and dasatinib. After 6 months on that trial, they discovered that it wasn't working and I'm going to start on alimta on 5/11/09. I'm remaining fairly healthy, playing golf a lot and traveling some, but I have a feeling that I will have some side effects from the alimta which may curtain some of those activities.

One thing that you should know is that as a BAC "victim" you may be eligible for lung transplants. I have been in touch with one gentleman who had transplants about 2 years ago. BAC does not matastasize (sp?) and as long and the cancer is only in the lungs, once the lungs are removed and replaced with new/clean lungs, there should be no concern about the anti-rejection medications causing cancer to spread -- after all, the cancer is gone! I'm pursuing that with Mayo on Jacksonville, FL. I know that St. Luke's in Milwaukee has done the transplants for a BAC patient. It's worth pursuing....

I look forward to sharing thoughts and experiences.
Betsy

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• By Stewart_SYTSTP
• Posted May 10, 2009 at 11:09 am
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Hi BMeehan,

What's the success rate of lung transplant? Is rejection common?How often is a suitable donor available?

A lot of question marks in my mind and it sounds a little desperate.

Anyway, thanks for pointing out the possibility of lung transplant.

Cheers,
Stewart

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• By BMeehan
• Posted May 10, 2009 at 5:19 pm
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Hi Stewart,
I am not an expert on lung transplants, I just know of one gentleman who had BAC, went back home (from FL) to Wisconsin to be with his family and prepare for death. His daughter, a nurse, did a lot of research and found that his type of cancer (BAC) was one for which they would do transplants. The anti-rejection meds tend to make cancer cells in the body grow, but if they remove the cancerous lungs, and there is no cancer anywhere else, transplants are a good option. I'm not sure about rejections. I have heard that the cancer can reoccur in the "new" lungs, which indicates that it might be genetically triggered for some people.

Patients are not put on transplant lists until they are on oxygen and from what I hear you have to be near death to pop to the top of the list. I don't know how often lungs are available, but I have done some research and found that Mayo in Jacksonville did 40 lung transplants last year -- not sure how many were needed vs. available. It is a desperate step, but given that they only do it when all else has failed, in my mind it's worth it.

I would recommend that anybody who might be interested in pursuing this option do some internet searches -- there seems to be a lot out there, and it seems to be something that is a fairly new procedure for lung cancer patients.

I smiled when I read a posting saying that one should drink lots of water. I have low sodium levels so they have told me to try drinking liquids with sodium in them -- to stay away from pure water as much as possible. The nurses told me that low sodium levels are very common with lung cancer patients. Anybody else heard of that?

I start on alimta tomorrow and hope that it works and that the side effects aren't too serious. I'd like to stay active....

Good luck, all,
Betsy

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