bronchioloalveolar chemotherapy - 1257126

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rjiliffe
bronchioloalveolar chemotherapy - 1257126

I have been diagnosed ( march 2013) with BAC s4t0n0 described as 'progressive RLL consolidation with increasing nodularity RML & RUL ?
fragments of well differentiated adenocarcinoma some of which appear to be of mucinous lipidic type'
with no known mutations.
CT scans march/ may show slow progression
Have been offered surgery with chemo, but am anxious to avoid the standard UK treatment of cisplatin/ pemetrexed combination due to the severe side effects - UK doctors are treating this as standard lung adenocarcinoma

I wondered if you could suggest any other chemo treatments which may not be as severe, or any other suggestions to this condition.

By the way, I am taking a wide range of supplements including IV vitc & iscador, plus a range suggested in the John Boik book 'natural compounds in cancer therapy'. Its too early days to see if these are having any effect

Kind regards

JimC
Reply To: bronchioloalveolar chemotherapy

Hi rjiliffe,

As you can see from Dr. West's post detailing his algorithm for BAC treatment at http://cancergrace.org/lung/2013/01/20/mf-bac-algorithm/#more-12994 unless there is an identified mutation, any conventional chemo regimen for adenocarcinoma would be appropriate. If you're looking to avoid the side effects of cisplatin/pemetrexed (alimta), a common alternative is carboplatin/pemetrexed, since many patients tolerate alimta well and carboplatin tends to be more tolerable than cisplatin, with similar efficacy. That is what my wife used for first line, and her side effects were pretty manageable.

Good luck with your treatment.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: bronchioloalveolar chemotherapy

JIm's spot on in predicting what I'd say. By all means, feel free to do whatever you want, but there's not a scintilla of real clinical evidence of any quality that the supplements will do anything beneficial. In someone who doesn't have a driver mutation like EGFR or ALK, chemo-based treatment is the standard, but I don't think there's any incentive to rush into any treatment when the cancer is very indolent. In that sense, perhaps you can see how things go with whatever alternatives you want -- if the cancer regresses, that's great for you, and I'd be happy to be wrong about the benefit of the supplements. Just don't presume that stability or slow progression represents efficacy for whatever you're doing, whether it's chemo or supplements (or both), because the cancer itself might just show that pattern whether you're on anticancer treatment or not.

Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Many thanks for your input - it's really appreciated, particularly Jims advice on the chemo combination, and Dr Wests advice on not being in any hurry to make decisions. One thing i'm not sure about is the advice to have surgery ( i think 2 lobes or perhaps the whole lung, won't know for a week or two ). Do you think that, with or without the chemo, that this is worthwhile?

JimC
Reply To: bronchioloalveolar chemotherapy

rjiliffe,

As Dr. West's previous cited algorithm shows, if there is progressing disease (apparently not clear in your situation), local treatment such as surgery or radiation is an option if the progression is focal in nature. That's pretty much always the consideration: whether or not it's considered possible to get all of the cancer with local treatment. Otherwise, if there are cancer cells elsewhere in the body such treatment is not considered worthwhile since the cancer will pop up somewhere else anyway. It would be a judgment call on the part of your doctors as to whether they can get everything, so that's probably the issue you would want to discuss with them.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: bronchioloalveolar chemotherapy

I can't speak to your specific case, but I have a lot of experience in this field, and I often see surgery over-recommended and sometimes highly likely to be futile. I think it is often an excellent idea to get a second opinion by a dedicated thoracic surgeon before making any irreversible decisions. Many times I see patients after the fact and cringe at the awful decision that was made to pursue a very aggressive surgery.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Many thanks for that, Dr West. I had assumed that surgery was the best course of action, as it would remove the cancer - or at least the bulk of it . We were initially told by one thoracic oncologist that it is inoperable, and by a second(opinion) one that it WAS operable( she spoke of it being a good form of debulking treatment for this disease). As I have been advised that chemo has only a 30% success rate with BAC, it seems to leave me in a bit of a quandry. Do you consider chemo to be a more favourable option than surgery ?
i have just had PET/ CT scan & am due hopefully to see surgeon in the next couple of weeks.
I also think that she is suggesting chemo before surgery.

Kind regards

catdander
Reply To: bronchioloalveolar chemotherapy

Here is more discussion on the idea of finding out what the biology of your specific cancer is before deciding on how to proceed. http://cancergrace.org/cancer-101/2012/03/17/the-principle-of-letting-th... It's kind of a know thy enemy thing and seems to be a reletively new idea in advanced cancer treatment but not at all new in BAC treatment.

You may have read this, http://cancergrace.org/lung/2010/07/09/basics-of-bac/
It discusses mucous subtype of which you stated yours to be mucous subtype I believe. This may be the reason for being told chemo only has a 30% chance of working because a greater percentage of people with m type have a kras mutation that tends to not respond as well. These are all statistics and you will only know where you fit into them if you try treatment.

Note I'm not trying to talk you into a watch and wait approach or chemo treatment but want you to understand your options as best as possible. My husband has a histology of squamous cell yet it isn't at all acting like 90 plus % of others in his position. We're absolutely lucky lucky lucky to be looking at what is means to watch and wait and treat according to an algorithm like the one in the post Jim linked to.

Lastly, chemo treatment has come a long way in tolerability when aggressive side effect management is given.

Sincerely hoping,
Janine
forum moderator

Dr West
Reply To: bronchioloalveolar chemotherapy

If there's cancer left behind that isn't extremely slowly growing, I think surgery is typically a very, very bad idea. The only real exception I can think of would be a patient who is so debilitated by shortness of breath or cough that the lung being removed is completely functionless and causing terrible symptoms.

The response rate with chemo is about 30% for BAC, but that's about the same as what it is for other lung cancer subtypes, and that underestimates the percentage of patients who benefit from chemo. In addition to people who demonstrate such significant tumor responses that they are considered an "objective response", those who demonstrate minor tumor shrinkage and even those who demonstrate stable disease and not disease progression almost certainly live longer than they would have had they not pursued chemotherapy. I'd estimate that more like 60-75% of patients with advanced NSCLC, whether BAC or another subtype, benefit at least modestly from chemo.

Overall, I'd say that chemo and surgery aren't an either/or decision, but I think you're underestimating the potential benefit of chemo and may overestimate the benefit from surgery. There's a very real risk that all surgery will do if it leaves growing cancer behind is remove good lung (that might be badly needed later) along with cancer.

That said, BAC does require an individualized approach, but I think there's a very real risk that an ill-conceived surgery will cause net harm rather than any benefit.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Many, many thanks for your input Janine & Dr West- it throws a new perspective onto it. My first instinct now is to monitor changes in ct scans from jan / march/ june (the last one) & hopefully we can get the surgeon ( we are seeing him on tuesday 18th) to let us know how much progression has happened. If it appears to be progressing & presumably whether or not metastases show up, it will probably leave the decision of an appropriate chemo treatment. I would be most grateful for any input on specific appropriate chemo treatments

JimC
Reply To: bronchioloalveolar chemotherapy

Really any chemo combination that is appropriate for adenocarcinoma would be usable here. First line treatment of adenocarcinoma typically consists of a platinum agent (cisplatin or carboplatin) plus another agent (often paclitaxel or alimta). Some oncologists will add avastin as a third agent, but its efficacy is not clearly established as significant.

You can read about first line treatment in the GRACE FAQ here: http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed-... There are also quite a few good links at the end of the FAQ.

Hoping that you don't need any chemo now and for a long time.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: bronchioloalveolar chemotherapy

Exactly right. Recommending a specific regimen would falsely imply that there's strong evidence to favor one over another. There are several combinations, typically comprised of a "platinum" agent such as cisplatin or carboplatin, along with a partner drug, and many of the commonly used ones are very comparable in their efficacy.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Saw my surgeon yesterday and he claims that a pneumonectomy is the most advisable route to take, and that the diagnosis was not BAC but the apparently redefined multifocal adenocarcinoma (same difference ?) The lower right lobe is not functioning - he termed it as being 'solid', (it no doubt explains why i get breathless on exertion) with the probability that it would begin to 'back up'. Does this refer to the blood supply to the lobe ?.
The CAT scan also showed what looked like a considerable amount of cloudy fluid, i think in the middle lobe, which he described as a side effect of the cancer. Not sure if it is correct, but In my understanding of the nature of a 'well differentiated' lower lobe, the option of chemo is unlikely to have any effect on it. I'm also not sure whether it can affect the cloudy condition of the middle lobe.
He talked of removing all lymph nodes in the lung to check for metastases during the op. Are there any statistics to say what the likelihood of this is, and what the consequences are of losing the nodes?
The surgeon in question is quite eminent ( he is an adviser to NICE in the UK) and sounded convincing and unequivocal, but from the previous replies it still sounds like a dramatic course of action. However, he quoted a 5 year survival rate after the op of 30 - 40 %, which sounds quite high considering all the other stats i have read.
My symptomatic cough is not at all severe , but he suggested that this would get worse, with the likelihood of me starting to cough up mucous or blood, so i think that an early decision would be advisable?
I'm not sure whether it is worth getting another CT scan to check the progression ( from the other two of jan/march) before making a decision, or whether this would make any difference.

Again, any input would be most gratefully received.

catdander
Reply To: bronchioloalveolar chemotherapy

You have some very big decisions to make. I don't know that Dr. West will have any further input but I will make sure he sees this post today.

Generally speaking, well differentiated cells as opposed to poorly differentiated cancer cells respond better to treatment. Dr. West explains well differentiated cells here, "Cancers therefore are made of cells that may look a lot like the normal cells they originated from (well-differentiated), or they have lots of mutations that make the cells look so chaotic that they don’t look at all like the cells they started out as (poorly differentiated)." http://cancergrace.org/lung/2010/03/12/nsclc-nos-poorly-differentiated-n...

Dr West
Reply To: bronchioloalveolar chemotherapy

This is well in the range where I can't say much, as I can't overlap into the realm of providing medical advice to someone who isn't my patient.

Very often, a multifocal adenocarcinoma with a completely consolidated lobe involved is not a situation in which I think the evidence would support such a favorable long-term prognosis with surgery. That "pneumonic" pattern is notoriously challenging and often associated with spread to other lobes over a matter of months (though not always), so I would be very cautious about removing an entire lung only to find that it's in the other lung a few months later. By the same token, if surgery is pursued, I would consider it absolutely critical to get a very current CT scan to ensure that it isn't already in the other lung before removing one in a pneumonectomy.

I wouldn't want to presume that I know more than the doctor directly involved in your case, but the stakes here are high, and I just have a significant expertise in this entity and often see patients undergo an ill-conceived surgery that ends up not only not helping them but may harm them when they need more lung tissue after it has been removed, because the remaining lung has disease in it.

That said, we sometimes might even consider a "palliative lobectomy", removing the completely useless lobe, even if we know there's disease elsewhere, because the completely consolidated lobe has blood running through it that isn't getting any oxygen. This is called "shunting", which is probably something the surgeon was thinking about, and that may be a reason to remove the non-functioning area of lung. However, if there happens to be a driver mutation like an EGFR mutation or ALK rearrangement, we might see a dramatic improvement just by starting the right targeted therapy against that target. I have a patient now who had the consolidated lobe clear up dramatically with Tarceva after we found an EGFR mutation.

No right answer, unfortunately. Good luck.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

craig
craig's picture
Reply To: bronchioloalveolar chemotherapy

FYI, although it probably doesn't apply to you, I'm another example of what Dr. West referred to:

I was originally considered a candidate for surgery because according to my local NJ pulmonologist and surgeon at the time my cancer didn't look like it had spread outside the lower-right lobe, per CT and PET scans. But I sought a 2nd opinion from a major university surgeon and oncologist team. In the nick of time just a couple days before surgery, that oncologist simply turned up the viewer's contrast setting on my original CT scan and was able to easily see that my cancer's GGO's (spots of haze) were not limited to a single lobe but were clearly in every lobe on the right and he said he also saw tiny spots in each lobe on the left, too. (That's where his sharp eyes & experience were important.) A few weeks later a 2nd bronchoscopy confirmed lung cancer in both lungs. Having just read this (http://cancergrace.org/lung/2008/10/10/bronchorrhea/#comment-4766) anecdote the night before, it seemed that surgery was not going to improve my situation.

3 months later (no treatment yet) my lower-right lobe was looking very ugly and it was spitting out fluid into my lungs. I'd have considered having the lobe removed for palliative purposes, but instead my driving mutation (ROS1) was found and Xalkori turned back the clock. I still might be tempted to remove that formerly "uglylobe" if drug resistance first appears there and can't be controlled with a 2nd drug, but so far so it's remained under control and I'm getting great use out of that lobe. (Besides, it's a good incubator for the researchers who need to learn what kind of drug resistance eventually develops from my ROS1, if it develops in there.)

Best hopes,

Craig in PA

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

catdander
Reply To: bronchioloalveolar chemotherapy

Thanks Craig, I think your story really depicts what Dr. West is saying.
BAC can be such an insidious disease.

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Many thanks for the reply Dr West & Craig,
the biopsy did not show ALK or EGFR mutations and so far i have had 3 different recommendations. Initially my oncologist said that i was inoperable and recommended a course of cisplatin/ pemetrexed. A second oncologist said that i was indeed operable, and advised an initial course of chemo before surgery. Then the surgeon said that there was no evidence that chemo before surgery was of any benefit, and that the best course of treatment was a pneumonectomy without chemo. lymph nodes would be removed during surgery to check whether it had metastasised, which would necessitate chemo after surgery. A CT scan would be taken of the other lung to check this before surgery.
Sorry to labour the point, but we i am being leaned on ( probably rightly so) to make a decision before the cancer worsens, and any more input to help with the decision to go with the surgeon or seek a further opinion would be very, very gratefully received

craig
craig's picture
Reply To: bronchioloalveolar chemotherapy

rjiliffe -- I do not have any answer for you, but I understand the difficulty of having to make a decision with so such incomplete information. I was feeling some panic about my getting surgery or not, and then for weeks afterward I was 2nd guessing myself, until the 2nd bronchoscopy conclusion came through. I repeatedly considered all sorts of scenarios, both the best and worst possible outcomes under each course of action. It was a life-staking gamble no matter which I bet on and no matter how it turned out. I was lucky as it turned out, but sooner or later my luck will turn sour again like it was before my ROS1 diagnosis.

Best hopes,

_________________________________
Stage 4 ROS1+ [mucinous BAC] adenocarcinoma NSCLC since 2011
Xalkori (crizotinib) 5 yrs
Alimta (pemetrexed) + carboplatin (mere months)
TPX-0005 (repotrectinib) TBD (1+ years as of Fall 2018)

Dr West
Reply To: bronchioloalveolar chemotherapy

Again, we can provide general information that people may be able to apply to their own cases, but we just can't provide individualized recommendations for very specific cases.

I would just say that the value of a pneumonectomy would be completely obviated and that surgery would be definitely harmful if there's growing cancer in the other lung now. I would consider 2-3 months since the last scan to be far too long an interval to pursue surgery without a more current evaluation of the extent of the cancer.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Dear Dr West
Once again, many thanks for your input
my surgeon has asked for a ct scan of the other lung before deciding whether i am suitable for surgery. It would also hopefully show the extent of any progress of the cancer since the last scan in march.
It still leaves the agonising decision between chemo or surgery, or chemo and surgery depending on the state of the lymph nodes after op.
Talking of which, the surgeon says that these won't be missed ( hes removing them all) , which postulates the question what were they there for in the first place ?

JimC
Reply To: bronchioloalveolar chemotherapy

Lymph nodes act as filters to help keep the lymph fluid clear, which helps in the functioning of the immune system. But since there are hundreds of them scattered throughout the body, removing some of them won't have an appreciable effect.

JimC
Forum moderator

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
Reply To: bronchioloalveolar chemotherapy

Exactly right. There's redundancy in most body functions, so just as you can get by quite well with a lobe or even an entire lung removed in many cases, the body doesn't miss the loss of several lymph nodes.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Dear Dr West

Sorry to persist, but there are a couple of things which would be helpful to know before making a final decision on surgery on my multifocal adenocarcinoma.
1)Are there any stats to say what percentage of people who have had a right lung pneumonectomy suffer a recurrence of disease in their left lung, or other metastases.(assuming the left lung shows clear on CT scan before surgery)
2)Is there any problem in having chemo if disease occurs in the left lung after surgery ( or if lymph nodes test positive for metastases)
3) Are there any circumstances when it would be desirable to have surgery after chemo.

Also, I have just started to cough up clear mucous - is this a sign of disease progression ?

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Sorry, but just one last point. Is it likely that the mucous is coming from the well differentiated lower lobe?

catdander
Reply To: bronchioloalveolar chemotherapy

rjiliffe, It may be time for you to post a signature to your forum profile. It will show up on the bottom of your posts and give telescopic highlights of your cancer history. That way when you have a question there's no need to remind the doctors by rewriting all the details and they can get the relevant info from which to answer questions without digging for info.

To add sig;
click on your users name on the left of your posts
click "edit profile" toward the top of the page.
Don't forget to hit submit and don't worry about the email warning.

Aside from all the clerical bits I just want to say I know you will feel better after you've made your decision, everyone does. I'll keep you in my thoughts and know you will keep us in the loop as you move forward. And I seldom leave a message without a suggestion or 2 or ... If you haven't I'd suggest you go back and reread these 2 pages of discussion. I'm not suggesting that you're not paying attention, I'm suggesting you are rightfully looking for answers to incredibly complicated issues added to that the horrifying stress you've been so recently thrown into, a second or third read through is well worth your time. Many people, including me, have taken copies of discussions or blog/posts from Grace to doctor appointments to help with discussion and decision making. Sometimes it takes a bit to get a doctor to believe you're getting such meaningful info (not advice) from the web.

There has been several people here as well as a recent study that found respiratory therapy can be quite helpful and unfortunately significantly under-offered. It may help with the mucous.

All the very best hopes,
Janine

Dr West
Reply To: bronchioloalveolar chemotherapy

I don't have those kinds of stats available, but I think the key issue is that if there is any evidence of disease in the left lung now, the answer is 100%. People with mucinous adenocarcinoma who require a pneumonectomy for multifocal BAC in one lung have a very high failure rate from recurrence in the other lung. I can't give you a number, because I don't know that it's well studied enough to say, but it's unacceptably high, in my estimation.

I really can't say where the productive cough is emanating from the most disease-laden lobe or whether your changing symptoms represent disease progression, though that would be a fair presumption. Only someone directly involved in your case could provide that kind of assessment.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

rjiliffe
Reply To: bronchioloalveolar chemotherapy

Once again, many thanks for your input Dr West & Janine.
There are a couple of points i'm hoping you may be able to help with:
1) is chemo possible or effective if there is a recurrence in left lung after pneumonectomy
2) I assume the mucous is due to my starting lung exercises ( expelling air by squeezing in my stomach until an in breath is forced. 5 rounds of 7 a day). Do you think that is therapeutic, or doing more harm than good ?

Diagnosed april 2013 as S4T0N0 Progressive RLL consolidation with increasing nodularity RML & RUL lipidic adenocarcinoma. Fragments of well differentiated adenocarcinoma, some of which appears to be of mucinous lipidic type - also stromal infiltration.

Dr West
Reply To: bronchioloalveolar chemotherapy

Chemo is definitely possible and sometimes effective for unresectable disease.

I don't really know whether the lung exercises are helpful or not. I would use the approach that if you're feeling better, it's great to continue it. If you're doing no better or especially if you're doing worse, I think it makes far more sense to not continue those exercises.

-Dr. West

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education