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AnnieRSA

AnnieRSA - Hello from South Africa

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On the subject of appetite, if weight loss becomes a problem: There is a Rx drug that a doctor can prescribe that stimulates appetite. (For myself, I'd just make myself eat as much as my body needed regardless of mood or bad taste, but many people won't eat unless they feel the urge to.)

Best hopes,

Craig

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oh and also feeding tubes which can be removed later on... they are most unpleasant though and should be last resort....

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Hello all. It's been a while since I updated mummy's progress:

We are now in India. We flew down on Wednesday from SA and got here via Dubai.

At the transit airport she started getting tired and soon as she boarded the second (shorter) flight she was out of breath. The paramedics came to check her vitals and by then she got back her energy. However she was having serious discomfort in her tummy and hence could not force herself to eat. The prescription for her nausea didnt help either.

So she ended up not taking her meds (glucophage 500) on an empty stomach. This raised her diabetes and on landing we rushed her straight to hospital in an ambulance. What a ride!!! The noise and driving style Almost felt as if she was gonna leave us although all she was in need of was some oxygen and rest.

Anyway she asked them to give her a drip (NaCl) and that immediately restored her energy. By evening the next day she was blooming and today she's doing well, although short of breath. I'm staying over with her today to speak to the doctors tomorrow morning.

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The doctor had visited her in her room on Thursday (29 nov) and said that although we brought all the reports, ct scans and X-rays from SA, he needs the slides to be re-examined by his lab. Only then can he decide what to do for treatment onwards.

The report came through this evening and I'm attaching it herewith.

post-54915-141270980012_thumb.jpg

Accordingly, and if my inference from this website (http://www.ncbi.nlm.nih.gov/m/pubmed/16570563/) is correct, it is confirmed that the primary is NOT In her pancreas (CK20-negative and CK7- positive).

However the TTF1 says "focally positive" and I dunno what that means. All I know is it has to do with thyroid.

Also, The doc said today that she can stop taking her eltroxin tablets (she's been taking these literally for 28 years after my little brother was born, with a break in between for a short while).

I'm now wondering if her thyroid problem has to do with this?

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To support your thinking:

http://www.ijcep.com/files/IJCEP704003.pdf

supports the use of TTF-1+ and CK7+ to try to identify lung adenocarcinoma. And the article also says . . . "CK7+ / CK20- profile is not restricted to lung cancers .... The differential diagnosis for CK+ / CK20+ adenocarcinomas also includes neoplasms with origins in the pancreas, . . ."

From

http://www.aaomp.org/annual-meeting/doc ... andout.pdf

(a very good paper on dx of cancers of unknown origin): CK7+ and CK20+ is common in pancreatic carcinomas, but elsewhere it mentions . . . "In my own experience, I have seen . . . a [TTF-1] positive pancreatic carcinoma . . . ."

I do not think the term "focally positive" relates to cancer in any specific organ. It seems to mean that only some cells showed a positive result and some didn't. (Small clusters? Thin layer? I don't know.) My impression is that it might mean an ambiguous result, but you really need a doctor to interpret those words. You could ask a specific question like that over on the forums at cancergrace.org . They even have someone there with a lot of pathology lab experience.

I don't know more about it than you're able to read yourself, but my guess is that the doctors think it might be bronchioloalveolar carcinoma of the lung and not of the pancreas, but they can't be sure. If it were me, I would ask my doctors if there's any lab test they could do that would definitely rule out other organs of origins.

If you want more detail about how these IHC tests look in BAC (bronchioloalveolar carcinoma), read:

http://ajcp.ascpjournals.org/content/121/3/350.full.pdf

But, in short, it's hard to be definitive because there's plenty of exceptions. For example, in that report 2/3 of mucinous BAC was TTF1-,CK7+,CK20+ but that means 1/3 wasn't that way.

FYI, my cancer seems like mucinous BAC based on appearance and behavior (lots of mucus/fluid that stopped by the next day after starting Xalkori, slow metabolism and growth, & confined to lungs thus far), but tested TTF1+, CK7+, CK20- which is typical of ordinary adenocarcinoma and non-mucinous BAC, so I can't be sure. (I'd think differently in an instant if we found it outside lung someday.)

Your mother's TTF1 focally+, CK7+, CK20- and observations seems to resemble what those citations say is most common in regular adenocarcinoma or non-mucinous adenocarcinoma of the lung, but maybe being focally positive on TTF-1 means it's a little ambiguous.

Does that discussion of IHC testing help?

Best hopes,

Craig

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I just wanted to thank you for your update, and second Craig's suggestion that cancergrace might be a good place to ask about interpretation of the wording in the report. I'm glad you have your Mom in India and she is obviously well looked after.

Please keep us updated. I am keeping her in my thoughts.

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We spoke to the doc and he confirmed it is BAC. Unfortunately though, the lab in SA did not give us her block/slab and only provided the slides. So the doc asked we source the block ASAP so they can determine whether she has the EGFR mutation. Although they say there is a high probability she may have it (based on her ethnicity, background, history, etc) he doesn't want to take a chance without examining the block.

We have been working to get the block here in India by early next week via airmail. The lab initially wanted to keep it for their records and refused to release it unless they cut sections of it (unstained) and put it on slides.

So in the meanwhile the doctors have started with pretreatment and will begin mummy's chemo on Friday this week. He says he intends to do at least three rounds of chemo first and depending on her reaction to it, they can put her onto tablets (I assume it is gefitinib).

He also promised us that the chemo will not be strenuous or give her any sort of discomfort and that he will immediately reduce or stop it when she exhibits any issues.

His (medical) prediction is "at least a year plus" on life expectancy as she is already in stage 4 and he considers that "she is not a candidate for being cured".

We have also scheduled for her to do a PET scan at another hospital here (the current hospital does not have the facility) for next week Tuesday. But that is provided her diabetes stabilizes at normal level. Else it won't help.

I have a few concerns though:

1. Per my understanding, Stage 4 is usually categorized when the cancer has spread from the lungs. They diagnose her as stage 4 but they do not state anywhere that the cancer has spread to any other part in her body. They ruled out the pancreas earlier as well. So why then would it be categorized as stage 4 if there is no clear indication of the disease in any other parts locally?

2. I consulted another doc today regarding her situation. His immediate answer (having reviewed her reports and scans etc) was that she doesn't even need chemo and can immediately start on gefitinib tablets. He says this is based on standard procedure in many countries especially the USA. see attached printout he gave us as reasoning for this method.

post-54915-141270980021_thumb.jpg

My worry now is why then would the other doc decide on going with chemo first and only then put her on tablets. If the chemo is unnecessary, wouldn't it be detrimental to her health if she does it?

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I too don't understand why they classified this as stage 4. My thoughts were the same as yours in that it needed to have spread elsewhere. Perhaps I am wrong but there are many here that will be able to help you understand.

I'm glad your mom is getting such good care and would like to say she is a lucky woman to have a son who cares so much.

Please visit cancergrace as others have suggested and let us know how she is doing please. ((hugs))

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Thank you Michelle.

We asked the doc about stage 4 diagnosis. Their reasoning is that since the cancer is spread all over her lungs they classify it as such. Hmm...

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Here is a link to the National Cancer Institutes explanation for the staging of non-small cell lung cancer. Perhaps this will clarify things.

http://www.cancer.gov/cancertopics/pdq/ ... ient/page2

As your question about treatment choices, that would be a good question for cancergrace.

I also have to say that no one knows how long any of us have to live. We are all different, and react differently to the cancer and the treatment. Many cancer patients are living much longer and better quality lives than would have been expected even a few years ago. Take a look at some of the stories on this site and you will see that is true.

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Correct -- the Stage IV can be due to the cancer spreading to other parts of the lungs, i.e., not just near the original site. That is why I'm stage IV -- cancer was seen on CT scans in every lobe of both lungs (although just tiny spots in the left lung, but confirmed by a 2nd biopsy later). No cancer was seen elsewhere or in nodes.

If it really is BAC, there's a fair chance that a PET scan would show nothing outside the lungs and would not show the cancer that looks like GGO (ground glass opacity) or haze except where it has consolidated into a mass. I say that because that was my situation, and it caused the local doctors to mistakenly assume I had no cancer beyond what they could see on the PET scan, i.e., early stage cancer and surgically operable. Fortunately, a 2nd opinion from more experienced university doctors read the CT correctly so I could stop the pointless surgery in the nick of time.

My personal experience has been that for my mBAC (assuming it remains confined to the lung as it often does) PET isn't very useful; CT is the important one.

If the cancer responds well to the chemo, that would be a wonderful thing. Chemo offers a chance of cure, however small those odds might be in stage IV lung cancer. Mucinous BAC, though, has a anecdotal reputation of being less responsive than average to chemo but there are enough exceptions (and no good statistical studies) to doubt that. My oncologist mentioned an mBAC patient of hers who did very well with Alimta for a while, for example.

I recognize Alimta (premetrexed) and Cisplatin. That combo has higher-than-average odds of working well in never-smokers. I am not familiar with other supportive drugs that are given to control side-effects.

The side-effects from the initial infusion or two might not be very difficult. They are likely to get stronger as the chemo has a cumulative effect. Hopefully that will give enough time

There is enough research supporting the idea of treating with an EGFR inhibitor drug as the 1st line of treatment *if* it is known that a person's lung cancer is driven by an EGFR mutation (and not one of the already-known drug-resistant variants of EGFR). An EGFR inhibitor sometimes works in patients who don't have an EGFR mutation, but then the odds for chemo would be better than for the inhibitor drug, so chemo would be the better first option.

Sometimes in the USA, when a patient needs to start treatments ASAP, they start chemo before they know the EGFR test result. If the test comes back positive for an EGFR mutation (and not a known-resistant variant)

then the would either finish the chemo first or switch to the EGFR inhibitor and come back to that chemo later. (I think there's usually a preference to finish a line before moving on, on the same assumption as for antibiotics.)

In Asia, the probabilities favor EGFR in never-smoking women so heavily that doctors might be inclined to assume EGFR until proven otherwise, and act accordingly, but I don't know. The data I know is East Asia and I've seen something similar for India to make me think EGFR was almost as common there, too. But if you Mom has been elsewhere, it's hard to know how whether being in a different cultural environment with different behaviors changes the odds or whether it might be driven by inherited genes.

FYI, if it were me, and if I did have the EGFR mutation, I'd want to ask if I could get some kind of scan (or even an ordinary x-ray) to try to measure the effect of the chemo before starting an EGFR drug so I'd know if it might be worth going back to finish more of that chemo later.

I do hope you find that she does have some kind of drug-targetable driving mutation (EGFR, ALK, ROS1, RET, ...?) that offers her an additional drug or track of experimental drugs that might have a good chance of extending her life.

Best hopes,

Craig

________

P.S. -- If you need research citations for anything I described, let me know. I'm just too tired right now -- need some sleep.

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I just want to reiterate one thing Alan said -

Mucinous BAC, though, has a anecdotal reputation of being less responsive than average to chemo but there are enough exceptions (and no good statistical studies) to doubt that.

I have squamous cell not mucinous BAC, but squamous also has the same reputation of being less responsive to chemo, but I was an exception.

And as Alan pointed out there are many things to consider. Your Mom is very lucky to have you.

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Craig and Diane! You guys are such superstars for being there for us. Craig has been so spot on with almost all his suggestions. I often brag to everyone that I have a special someone on "the other side" of the planet helping me out with queries and doubts. So a HUGE THANK YOU for actively following up on my posts.

We have got the block in transit now and is scheduled here on Monday or Tuesday next week. Then they can check if she has the EGFR mutation etc. Her PET scan is also scheduled for Tuesday. So we should be able to get a lot more information next week. Prayer is what has been keeping everyone so strong! So thank you for your prayers too.

She now finished her first chemo (YAY!!!!) and they are giving her the glucose IV for energy now. (Wonder whether that will conflict with her diabetes, but the doctors know best).

They said she needs to drink a lot of water in addition but she's only drank one litre of water in the past 5 odd hours. Would that be enough? Coz she's peeing a lot too with all the IV's they are giving her.

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I had Cisplatin as well initially - and they kept me hooked up and fluids running constantly. It is very important, and they are obviously monitoring her intake and output. The fluids are a key to doing well with that particular chemo.

Am glad they have gotten "the show on the road". I am keeping her in my prayers.

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Yes I am glad too that it has begun.

They aren't actually doing any record keeping. It's upto us to keep track of her intake and excretion of fluids.

What is more disappointing is the ratio of nurses to patients. Usually they are to have 1 nurse to 5 patients. Here it's 3 nurses manning a whole ward of atleast 25 patients.

Mummy is feeling better for now. Other times she keeps complaining of being sooo drained on energy. Then the gas in her tummy plays up and makes her hurt and miserable.

Other than these two issues she is okay. No throwing up or anything. Just waiting for the doc to come by and tell us what he thinks. He was apparently there last night but didn't even bother visiting his patient who just went through her first ever chemo schedule like a champ!

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I've been following and reading along with this thread. I've nothing more to add as these incredible survivors have provided you some great personal experience and advice.

Just know that I'm reading along and keeping your mum and you in my prayers and hoping for the best. Please continue to keep us posted!

Hugs,

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Thank you Katie!

I would like to know if there are any special considerations, do's and dont's, for after having chemo. This is a first for all of us and I don't want to leave anything to chance.

I am aware her WBC count is going to be low so she has to be kept free from any remote chance of infection. Then I know she needs to eat and drink healthy, exercise as much as she can and try to maintain a healthy lifestyle.

Other than these...I'm not too sure of.

Can anyone please point me in the right direction?

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I think everyone reacts differently to chemo treatments. I'm sure others here will have more to offer.

When my husband was taking chemo it really zapped him and he needed blood transfusions after each treatment which was weekly. It was just too hard on his system so we changed him over to the pill form of Tarceva. He never developed the dreaded rash I had heard about and it was much easier on him.

Wishing the best and thinking of you and your mom. Please keep us updated :)

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The extreme fatigue is normal, and may get worse as the chemo goes on. I remember people telling me how tired I was going to be - but even today I just don't have words to describe the total fatigue that can overcome you.

As has been mentioned -- hydrate, hydrate, hydrate. Basically I don't think you can drink too much. I couldn't get myself to drink enough plain water, so I diluted some juice with the water to add a little flavor. I know some people try to eat healthy during treatment, and that's great -- but if nausea is a problem my feeling is to just eat whatever you can. For me, it was peanut butter and toast and ice cream. Everyone is different - but whatever works. The most important thing is to try to keep your weight on and your strength up. When you are done treatments you can start eating healthier. I was also told by my oncologists to not take vitamin supplements during treatment. I think a multi vitamin was OK, but they didn't want you taking anything that might impact the treatment somehow.

If you notice your Mom getting dehydrated, you need to bring it to her doctor's attention asap so they can get more fluids into her. With the shortage of nurses, it is even more of a blessing that she has you.

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Cheers Michelle and Diane :)

I'm so glad you all are here for us!

The main problem is she has always had issues with her tummy, even when she was younger. So when her tummy gets bloated with air, it hurts her so much that she can't breathe well or eat anything. Then she says it feels like her energy is leaving her body right until there's nothing left even in her fingertips. We tried giving her some water in a teaspoon and she can't even swallow that and it flows out her mouth. So it was overall a scary experience to see my mother in that state.

Also, her diabetes is a problem coz she can't just go eating anything she likes. Hence it makes it worse on her. Hopefully she will realize she needs to be strong and be in charge of her life and future.

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I can see how those issues would really complicate things. Isn't there something her doctors can give her to ease the air in her belly? I have friends who are diabetic, and I do know how important it is to read the right things. Hopefully there will be something that she feels she can get down. I know a lot of patients drink a product called "Ensure" - and I don't know how that would fit in with the diabetic diet, but if she can get her stomach problems alleviated it might be an option.

I am keeping her in my prayers.

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Oops! Just realized that I meant to say I know how important it is to "eat" the right thing - not "read" the right thing (although I'm sure that is important also). lol

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