Looking for alternatives - 1247964

jjphoenix6
Posts:16

Hi there. My mother (former smoker - 25 years ago) is only 55 and has been diagnosed with BAC. I do not know of the mutations. Essentially at this time her left lung is 100% affected and her right lung is 25% affected. She has been told that traditional IV chemotherapy or radiation would not be at all effective, and thus she is going on an oral chemotherapy drug. She was diagnosed on Aug 1st, but does not have an oncologist yet (don't get me started).

She has been told that lung transplant would not be considered. I understand some of the reasons for that, but also understand that there are rare circumstances wherein it might be considered. My mother would like to know if there are any "alternative" treatments or lifestyle changes that she could make that might improve her quality of life as long as possible. She has been told that she is terminal and has 1-5 yrs left. On a side note, she is chinese. I only mention because we have been told that this has some prevalence.

Thanks so much. Appreciate any info....or even well wishes.

Forums
Full Archive

Reply # - September 13, 2012, 01:45 PM

catdander
Posts:

Hello and welcome to Grace. I'm very sorry your mom is in situation.
We will be able to help you shed light on your situation so she and you can understand better and help with plans moving forward.
Let me start by saying I've not ever heard that someone wouldn't respond at all to chemo without actually trying it. She may have a KRAS mutation that would suggest she may not respond as well as others; and that isn't a known until you try.
Also I've never heard of a lung transplant as being an option for lung cancer and would expect it to be for a person with stage 4; because the cancer is presumed in the blood steam.

If your mom had mutation testing would you let us know what was determined. (the asian population is more likely to have an EGFR mutation than others and a pill, tarceva, is then used as first line treatment.

We have a lot of informaiton on the site. Above in the green column click on focused cancer info and choose lung cancer. that will take you to a page with a drop down menu on the right column; choose stage 4 or BAC or mutations. We also have a good search function though if you are using an exploror browser you may need to log off first.

http://cancergrace.org/lung/category/lung-cancer/special-populations-in…
http://cancergrace.org/lung/category/lung-cancer/special-populations-in…

I hope this helps. I'm sure there will be others who will give additional info
Janine
forum moderator

Reply # - September 13, 2012, 09:27 PM

Dr West
Posts: 4735

I would encourage you to check out much of the content that Janine has provided a link to. I see and treat a lot of bronchioloalveolar carcinoma (BAC) and have a particular expertise in it, though there is still a great deal we don't know about how best to treat it. I would say that it's an overgeneralization and not necessarily true that standard chemo can't be effective against BAC: that's a commonly stated idea, but the data don't actually support that. I would say that the best data support treating advanced BAC the same as advanced invasive (more garden variety) adenocarcinoma, which includes chemotherapy-based treatment, and with a targeted therapy like an EGFR inhibitor or ALK inhibitor as a particularly appealing option if the patient happens to have an EGFR mutation or ALK rearrangement, respectively.

-Dr. West

Reply # - September 13, 2012, 11:50 PM

certain spring
Posts: 762

jjphoenix6, I'm sorry to hear about your mother. It sounds very frightening for her. Could you tell us the name of the "oral chemotherapy" that she is taking now?
As to lifestyle changes, this may not be the kind of thing you mean but the single most useful thing I have done is to get a good physiotherapist (I believe it is called physical therapy in the US). Part of my lung has closed down because of the cancer, so I have quite a few breathing problems. The physiotherapist has taught me a lot about breathing, getting rid of mucus and so on. It is very useful in a practical way, but also gives me an awareness of what is going on in my lungs, and a sense of control, that is very psychologically reassuring. Others I know have found yoga and pilates very helpful.
Best to you and your mother.

Reply # - September 17, 2012, 06:31 AM

jjphoenix6
Posts: 16

Thanks for your kind words and responses. She has been told that she will go on Iressa. Just a side note, she has not been informed that she is at any stage of cancer. She has instead been told that the carcinoma is agressive and has spread rather quickly. From noticing symptoms in Nov 2011 to the diagnosis of cancer on Aug 1st/2012 and the diagnosis of advanced BAC on Sep 5/2012. I am shocked that they will not try intravenous chemo therapy. It would be nice to have hope. I can hear that her breathing is very difficult now as she is also suffering from allergies. She understands that her cancer is in the lungs only (aveoli). Will get more infor to you as I find it out.

thanks again.

Reply # - September 17, 2012, 06:53 AM

certain spring
Posts: 762

jjphoenix6, just to encourage you a little - I am no expert on BAC but having read many of Dr West's responses on the subject, I think Iressa might be a good bet for your mother. It is not an "oral chemotherapy drug", but a targeted therapy such as Dr West mentioned in his post on 13 September. Iressa, like Tarceva, targets the EGFR mutation, which is more common in Asia than in the US, and more common in never-smokers (or people who smoked a long time ago) than in current smokers. Do you know if your mother has been tested for mutations in her cancer? It would definitely be worth finding out. If she has, and if they found her to have the EGFR mutation, then Iressa could be a very good treatment for her. Even if she hasn't, it might still help. And it can be less punishing for the patient than chemotherapy. Dr West with his knowledge of BAC can explain more. So please don't think of it as an inferior option - and don't despair.

Reply # - September 17, 2012, 10:00 AM

jjphoenix6
Posts: 16

Thank you for your responses Certain Spring. I will ask my mother about mutations etc. As mentioned in my initial post, my mom still does not have an oncologist. It's disturbing to say the least. Based on what you have been through, and are continuing to go through, I really do appreciate you taking the time to try to make me feel better. It says a lot about your character. Thanks.

I will post more as I find it out.

Reply # - September 18, 2012, 10:18 AM

certain spring
Posts: 762

You are most welcome.
I wonder if we can get some input from Dr West, as he led a trial a couple of years ago looking at the use of Iressa to treat patients with BAC?

Reply # - September 18, 2012, 10:28 AM

jjphoenix6
Posts: 16

Just another thought. As my mom has BAC and is considered an asian female non-smoker, does that increase my risk for developing this or any other types of cancer. I am only half chinese...and a non-smoker...and female.

I understand my mother's father also had lung cancer, but he was a smoke for his entire life (lived till 90yrs) so I don't know what type of cancer specifically.

thanks.

Reply # - September 18, 2012, 11:59 AM

catdander
Posts:

As cs suggested I'll make sure Dr. West gets sees this post at least by this evening...in Washington.
Did you find out is your mom had an egfr mutation? I find it remarkable she hasn't been seen by an oncologist. I'm just not at all familiar (I'm not a med pro so my knowledge is pretty simplistic) with a non-oncologist treating cancer.
Good luck to you and your mom.

Janine
fm

Reply # - September 18, 2012, 07:24 PM

Dr West
Posts: 4735

I did see this earlier, but I don't quite see a clear actual question. There's boat loads written here about both BAC and EGFR inhibitors, so I'd direct people to that rather than trying to recapitulate vast topics by retyping everything here.

Here is the key summary of the best information we have: It's probably best to ignore oversimplifications that "BAC doesn't respond to chemo", as this is based far more on myth than actual fact, in part because BAC tends to be hazy and hard to measure for tumor shrinkage compared with other, more solid, types of lung cancer. The best evidence is that BAC should be treated the SAME way as other forms of adenocarcinoma. If there's an EGFR mutation or ALK rearrangement, use the appropriate targeted therapy. If neither is present, chemotherapy is the best approach.

-Dr. West

Reply # - September 19, 2012, 01:26 AM

certain spring
Posts: 762

Thanks Dr West. I was just trying to clarify the nature of the "oral chemotherapy drug", which turns out to be Iressa; and then to establish that Iressa isn't necessarily an inferior option for a patient in jjphoenix6's mother's position.
jjphoenix, you also asked whether lung cancer was hereditary. This post addresses that question, concluding that smoking is a much bigger factor than family history:
"If you have a relative with lung cancer, and you are not a smoker, the odds are very low that you will develop lung cancer."
http://cancergrace.org/lung/2008/08/29/resta-genetic-risk-lung-ca/

Reply # - September 19, 2012, 07:32 PM

Dr West
Posts: 4735

Absolutely. While having a family member increases the risk of lung cancer, it is still far, far more associated with smoking. In a never-smoker with a family member with lung cancer, the risk escalates from very, very low to still quite low.

-Dr. West

Reply # - September 25, 2012, 06:22 AM

jjphoenix6
Posts: 16

Thank you all for your comments. My mom finally saw an oncologist yesterday. She is very hopeful at this point in time. Althought it's not operable or curable, it seems that she could still have many years left. She has been given the green light to get orthoscopic surgery on her knee (severe arthritis), and look into getting her L3 done (degenerated disc).

She will not be starting on Iressa though. The doctor feels that it's too early to start her on any medication for fear that she might develop an immunity. Is this common? To not treat cancer immediately, but wait till it's more debilitating? She is having difficulty breathing, but can manage as long as it doesn't get worse. She would be happy to live her life with the lung capacity she has.

Additionally, she does not know of the mutations. Her file and biopsy will be sent to a larger cancer centre (Vancouver BC Canada) to find out the mutations. From there, the oncologist wants to send everything to the US as there is so much more information there than in Canada.

Reply # - September 25, 2012, 06:56 AM

catdander
Posts:

Yay, you have information now that sounds right. I'm so glad your mom is able to breathe a sigh a relief...pun not intended but it really fits here. :wink:

It is normal for a person whose cancer is slow growing, stage 4 (it's another term for not curable but treatable) and especially BAC to wait for treatment until that person is more symptomatic. Your mom says she is fine and that is really fantastic. Congratulations!

Read up here to learn more and ask questions as you have them,
Janine
forum moderator

Reply # - September 25, 2012, 07:15 AM

Dr West
Posts: 4735

Right. In fact, I head the section on bronchioloalveolar carcinoma (BAC) on UpToDate, a very pivotal internet-based medical resource for summarizing the latest thinking for clinicians and potentially patients, and the latest version of this section features a suggestion that people with advanced BAC can be approached with the question first of whether treatment should be started right away or not. If not, it is profoundly reasonable to delay until there is more clinically significant progression. I proposed this treatment recommendation with the caveat that there really is no evidence to address this question, and my co-authors (who are recognized experts as well) both readily agreed that this is exactly their perspective as well.

The development of "immunity" that you cite is really a question of acquired resistance. We know that these treatments tend to be effective for a limited period of time before the cancer progresses despite that therapy, so there isn't a clear incentive to start a treatment before it might be most needed. In other words, if an effective treatment is available, it's hard to argue that it should be used to shrink a small amount of less symptomatic cancer as opposed to a larger amount of more symptomatic cancer. It's just important to try to minimize risk of missing the opportunity to have patients benefit if they become too sick while waiting.

-Dr. West

Reply # - September 26, 2012, 10:56 AM

jjphoenix6
Posts: 16

Out of curiosity, what is the survival rate for patients with advanced BAC? Most of the data that I can see refers to "lung cancer" and it doesn't break down the different types. Thanks.

Reply # - September 26, 2012, 07:48 PM

Dr West
Posts: 4735

It's usually in the range of 12-15 months as a median in the trials for BAC, but I think stats are close to useless here. There is incredible variability in how patients do that the stats don't provide useful guidance for an individual patient.

-Dr. West

Reply # - October 10, 2012, 08:59 PM

lmlb7665
Posts: 48

These posts bring up a question for me. How do you define "advanced BAC"? I also have BAC but have not heard it put in those terms before. I have multiple areas on both lungs, but have no symptoms. First diagnosed April 2011.

Reply # - October 10, 2012, 11:01 PM

Dr West
Posts: 4735

Advanced BAC is really the same as "multifocal BAC". It means stage IV, though the prognosis tends to be more variable, and often very favorable, compared with many other advanced/stage IV NSCLC subtypes.

-Dr. West

Reply # - November 14, 2012, 08:38 AM

jjphoenix6
Posts: 16

My mother whom has advanced/terminal BAC goes for regular CT Scans (every 3 months). Is that a regular interval for monitoring? It seems very frequent to me, but I guess if her timeline is only a couple of years, it doesn't mean too many scans. She has said that if the scan is good, then they will repeat it every three months. If it's bad, then I guess there would be no need to continue to scan. Any insights would be appreciated.

Reply # - November 14, 2012, 10:29 AM

lmlb7665
Posts: 48

Dear jj:
I have no medical education. I am another patient with multifocal BAC: the same diagnosis that you seem to be describing for your mother. However, I think of my glass as half full rather than half empty. I also live in Phoenix. Since my diagnosis a year and half ago, my scans have shown little change, if any. I started out going every 3 months for scans and now will be going every 6 months. I have no symptoms and feel great. I sometimes get more tired, but then I will be 70 soon. My onc here in PHX consults with Dr West in Seattle after each scan.

I would quit calling the disease terminal. If she had to get lung cancer ( a club none of us wanted membership), it would seem to be the least of the possibilities. We are all terminal, but LIVING with BAC is not so bad. A positive attitude will go a long way. (I just started taking piano lessons again after 55 yrs!).

Good luck to you and your mom

Reply # - November 14, 2012, 11:04 AM

jjphoenix6
Posts: 16

Hi lmlb;

Thank you for your words. Positivity is very important. My mother seems very optimistic about things. As she has other medical conditions which are affecting her overall well-being, my level of concern is perhaps more than it need be. She will only share tidbits of information regarding her appointments, so I come here to sometimes just get a better understanding of the what and why of her "treatments".

Reply # - November 14, 2012, 11:21 AM

lmlb7665
Posts: 48

You are welcome. I hope your mother will share her joys and sorrows in the future so that you both act as the ultimate support group for each other. There is no greater bond than Mother and daughter. I KNOW. I also hope that she will come to this website for support.

Reply # - November 14, 2012, 01:45 PM

catdander
Posts:

Hello jjphoenix, Hello and welcome to Grace. I'm sorry your mother is going through this and I know how disconcerting it is for a daughter to her mom in trouble. As lmlb said BAC can be very indolent but until her doctor is comfortable with its growth rate he or she will want to keep a close eye on it. If you are worried about the radiation it really isn't enough to be of concern. Dr. Manning wrote a blog post on the subject and had this to say, "The best way for an adult to reduce unnecessary risk from radiation exposure is to not perform unnecessary exams. CT is a fabulous imaging device. It is often the best way to diagnose or assess a disease. CT clearly saves lives. A necessary CT should never be withheld for fear of radiation exposure." http://cancergrace.org/cancer-101/2012/06/21/radiation-exposure-from-me…

And as lmlb suggests positivity is queen.

Janine
forum moderator

Reply # - November 14, 2012, 09:28 PM

Dr West
Posts: 4735

The interval seems reasonable as a general case -- depending on the apparent or suspected pace of the cancer, I might favor repeating scans in as short an interval as every 6 weeks or as long as every 6 or even 12 months. Early on, I would tend to favor a shorter interval until it becomes clearer that the cancer is more indolent.

In the face of an existing cancer that needs to be followed, I would say that concerns about radiation exposure are almost always misplaced. The risks of radiation-induced problems are so unlikely that the border on theoretical rather than real, and the risks of not attending to a growing cancer in a timely way are almost certainly far, far greater.

-Dr. West

Reply # - March 18, 2013, 12:51 PM

jjphoenix6
Posts: 16

Hi There. I'm pleased to state that my mom's cancer is growing at a very slow rate. That being said, she is now being considered for three surgeries to help with her osteoarthritis (knee replacements and back surgery). I know that being put under general anesthetic can be risky for people with lung infections (or at least have heard this). How is BAC viewed with respect to surgery. How risky is being put under for people with BAC? Thanks.

Reply # - March 18, 2013, 04:47 PM

catdander
Posts:

Hi jjphoenix6, How great your mom's cancer is so indolent that she's thinking about getting other issues tended to.

There's always a risk with surgery and anesthesia no matter who it is. People with BAC and nsclc in general have surgeries regularly. I'd make sure a pulmonologist did a work up to make sure she's able to withstand each surgery and get an all clear from her cancer team of healthcare providers.

All best,
Janine

Reply # - March 18, 2013, 09:28 PM

Dr West
Posts: 4735

There's nothing specific about BAC, but rather just the issue of lung function as limited by BAC, which would be the same as if it were limited by COPD or some other problem that limits lung function. This would be clarified by a better of tests called pulmonary function tests, or PFTs. In other words, BAC can be mild or serious or anything in between, but the real issue is just how well the lungs are functioning.

-Dr. West

Reply # - April 2, 2013, 07:09 AM

jjphoenix6
Posts: 16

Hi Dr. West;

Unfortunately my mother has taken a turn for the worse. She got severe pneumonia last week, and is still battling it. Her surgeries for her knees and back (osteo arthritis) will most likely be cancelled due to the xrays indicating severe pneumonia, plus it appears that her cancer has grown.

I know the answer to this question will most likely not make any difference, but here goes: Did pneumonia cause the cancer to grow? or Did the cancer growth trigger pneumonia? or Are they completely unrelated but coincidental?

Thanks.

Reply # - April 2, 2013, 08:09 AM

JimC
Posts: 2753

I'm sorry to hear of your mother's difficulties. I've never heard of pneumonia causing cancer to grow, and pneumonia can have many causes, including bacteria picked up in hospitals during treatment. So in that sense it could certainly be related, but it's often hard to pinpoint a specific cause.

I hope her doctors can clear up her pneumonia soon.

JimC
Forum moderator

Reply # - April 2, 2013, 08:14 PM

Dr West
Posts: 4735

To be honest, when someone has a BAC and is diagnosed with a pneumonia, I think it's very likely to be an incorrect diagnosis, and it actually represents progressing cancer. I can't know that for sure, certainly not in someone I don't know, but as someone who sees and treats a lot of people with BAC, almost every time I see some outside diagnosis of pneumonia in a patient with BAC, it's actually the BAC progressing.

-Dr. West

Reply # - April 3, 2013, 06:35 AM

jjphoenix6
Posts: 16

:cry:

Thank you for your insight. She is having a follow up xray on Friday and perhaps a CT scan next week.

I have really appreciated the information that I have found on this website and the interaction with professionals like Dr. West and other individuals with experience with this disease.

Reply # - June 17, 2013, 06:24 AM

jjphoenix6
Posts: 16

Hi There;

So I guess a bit of an update. My mom's pneumonia is completely cleared up, however there is indication on her ct scan that the cancer has grown slightly. The comment from the Oncologist was that the pneumonia probably spurred the cancer growth. To be honest, it wasn't her normal doctor so I anticipate that there was some guess work involved.

It's frustrating because she got the vaccine to prevent pneumonia (which made her feel sick for three days), then 6 weeks later got severe (life threatening) pneumonia. And the pneumonia may have caused the cancer to progress. Anyway, her next appointment is 6 months away. This, at least, is very positive. She is having a lot of difficulty breathing but have not prescribed the inhibitors(?) yet. She is in severe pain due to osteo arthritis in her knees, back and hip. She is still on other medication to help with her gout, and high blood pressure (stroke survivor).

It's frustrating, because it seems like she's got a hundred things going on at any given time. I'm trying to seek out pain therapies that would help her at this point.

Cheers, and be well.

Reply # - June 17, 2013, 07:32 AM

catdander
Posts:

I'm very sorry about your mom is having such a difficult time.
I'm having a difficult time moving around the site because I'm in the country with rotten access so I can't paste a link but can suggest you search for "pain management" using our grace search. Dr Pinder has written very useful posts on the subject. Note that you may need to log out to get search results. Another option is to use our "cancer info" tabs above. They have drop down menus on the right columns.

We'll make sure you get access to these posts. Your moms pain is most likely very treatable.

Reply # - June 17, 2013, 09:16 AM

JimC
Posts: 2753

Here is a webinar that Dr. Harman did on pain management: http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…

She also wrote a post on the subject which can be found here: http://cancergrace.org/cancer-treatments/2009/07/02/cancer-pain-101/ (At the end of the post there are also several links to other topics which may be of help to you).

Hope this helps, and her pain can be controlled very soon.

JimC
Forum moderator

Reply # - June 17, 2013, 07:17 PM

Dr West
Posts: 4735

I actually think that the idea that the pneumonia stimulating the cancer is a tough one for me to imagine. Not only is that not something that has been described, to my knowledge, it isn't clearly plausible as a biological mechanism. I don't know if that's comforting, but I suspect that it's just an independent process.

-Dr. West

Reply # - November 26, 2013, 07:58 AM

jjphoenix6
Posts: 16

Hi Dr. West,

I guess an update would be that my mom, 57 yrs, Female, Chinese descent, non-smoker, has BAC and the belief is that it is progressing now. She was diagnosed about 12 months ago and things really seem to be going downhill. She had back surgery for a degenerated disc a few months ago, but it doesn't seem to be healing properly. She is having difficulty breathing is often gasping for air. She is exhausted all the time and the smallest tasks are difficult for her.

I guess I have a question for you...I have not seen much stuff written about Home Oxygen Therapy for people with BAC. Would that help her at all? We get the results of the most recent scan on Dec 12th. We know that the end is imminent, but would like to make her as comfortable as possible. Right now her quality of life has diminished significantly.

Thanks.

Reply # - November 26, 2013, 08:42 AM

JimC
Posts: 2753

Hi jjphoenix,

Here's what Dr. Harman had to say about oxygen therapy for shortness of breath:

"There has been some evidence to suggest that oxygen therapy can help treat dyspnea in patients with cancer. However, the effectiveness of oxygen for dyspnea is proportional to how low the blood oxygen levels are and tend to be most helpful when the oxygen levels are very low. In general, to qualify for coverage of home oxygen, a patient’s oxygen levels have to go below a certain number. There was a recent study out of Duke that compared oxygen therapy versus regular air for patients who had dyspnea but whose oxygen levels were not low enough to qualify for oxygen. This study found no difference in the effect of oxygen versus air, but interestingly, patients had the same improvement in their dyspnea whether they had oxygen or air." - http://cancergrace.org/cancer-treatments/2012/02/17/dyspnea/

JimC
Forum moderator

Reply # - November 26, 2013, 11:05 AM

jjphoenix6
Posts: 16

Thanks! She's getting tested today to see if she is a good candidate for Oxygen Therapy. Fingers crossed that it is beneficial for her.

Reply # - November 26, 2013, 12:25 PM

catdander
Posts:

I really thought this would be an easy find but I've not been that successful in locating that info. Adeno in itself tends to spread to distant parts of the body and BAC can begin to show more general Adeno features so in that thought pattern the answer would be yes it's possible. Also with cancer anything is possible.

To get a more thoughtful answer I'll ask a doctor to comment. I hope the cancer stays put and allows your mother to live her life.

All best,
Janine

Reply # - November 26, 2013, 08:52 PM

Dr West
Posts: 4735

I can address this one. Yes, bronchioloalveolar carcinoma (BAC) is extremely likely to remain confined within the lungs. That's a major defining factor of what makes it BAC.

I'm very sorry your mother is having such a difficult time lately.

-Dr. West

Reply # - November 28, 2013, 05:26 AM

jjphoenix6
Posts: 16

Thanks so much for the reply. Apparently her blood oxygen levels are good. Perhaps it's just her lung capacity that is making things difficult. Eagerly awaiting Dec. 12th when we get the results from her latest scan. I am happy to hear that BAC generally stays within the lungs. One less thing to worry about.

Previous PostNext Post