Stage 4 Squamous Lung Cancer - 1253871

murat
Posts:16

my mum , however right now we have to start chemo that her oncologist suggested . Last year she was diognised with lung cancer and surgery done one of her lungs were taken . Now it has come back altough she had chemo after the surgery and checks done regularly. She has metastases to her femur , spinal cord , brain , and liver . She had radiation therapy to brain and bones for 1 month , now this week was a treatment free week and she is starting carboplatin taxol chemo next week . She started having pain on her back which we tought would be reg bone metastasis . She had been in good health as she was getting steroids during radiation . . She is having fever occasionally , pain level is 7 out of 10 .Taking pain killers ,but she alsonhas cramps in her stomach and the pain ınder the arm is a worry . We did talk to her doctor and he told us to use some antibiotics ? What would you recommend us ? I also would love to hear any comments regarding her treatment plan and what could be done for the pain in her tummy and back and under her arm . She is able to walk and dress up herself and everything else . I aldo read that the second trial for reosylin was 95% success for tumor shrinkage . The mutation test done for the EFGR was wild type so we are looking forward to see what will be the results for Alk and other gene tests . I really see that she has hope and she deserves the best . I do research online everyday about everything regarding cancer ...
I do hope the best for everyone in their health

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Reply # - February 17, 2013, 09:21 AM

Dr West
Posts: 4735

murat,

I'm very sorry to hear about her recurrence and the problems she's now facing. The treatment approach of standard two drug combination chemotherapy, such as carboplatin and Taxol (paclitaxel), is very appropriate for someone with a metastatic squamous cell NSCLC. Unfortunately, it's very unlikely that someone with a squamous NSCLC has either an EGFR mutation or ALK rearrangement.

Reolysin research is still very early, and while it has looked promising, it hasn't shown a response rate of 95%. I think the main conclusion we can draw is that it has looked promising enough to move forward with larger trials. I would certainly be supportive of these trials and would be happy to offer one at my center.

Otherwise, anti-PD-1 immunotherapy strategies have appeared to have some real activity in advanced NSCLC, perhaps particularly in patients with squamous NSCLC, but most of this work is directed to patients who have already received chemotherapy for advanced NSCLC.

With regard to her pain, that could be caused by several things, but the main question I would be thinking of is whether there are metastases in or near her spine that could be contributing and that might be radiated to improve her symptoms.

Finally, a "bone-directed therapy" like XGEVA (denosumab) or Zometa (zoledronic acid) has been shown to reduce the rate of further skeletal complications in patients with lung cancer metastatic to bone, so an agent like this would typically be added to the rest of the treatment plan as well.

Good luck.

-Dr. West

Reply # - February 17, 2013, 01:48 PM

murat
Posts: 16

Dr West
Thank you so much for your quick reply ,
If you don't mind I would like to ask what do you think about giving a shot to target therapy altough negative mutation , would it be worth trying when chemo is finished? Bevacizumab , Erlotinib , Gefitinib
I checked with her Doc and he said he is including zometa for bone therapy .
She has metastases in her spine , in a few places. She completed a 20 Chemo sessions to her brain and spine and femur . It has been a week , she is now having extreme pain while lying down in her bed , Tomorrow her chemo will hopefully start , after her blood check.

I am looking further in PD 1 , Thank you very much
Murat

Reply # - February 17, 2013, 01:54 PM

murat
Posts: 16

I forgot to add asking about the antioxidants
I do know we have lots of antioxidants in our diet and Oncologist did limit some in her chemo, I do realise that it makes sense that avoiding antioxidants will help chemo drugs stay aggressive , as said by James Watson .
Would it be possible to tell me what you think about it ? If we avoid antioxidants then i don't see much choice of food
Also our oncologist suggestd we eat lamb meat to help with blood cells , it is opposite what i learnt avoiding too much red meat for cancer patients . Would it be possible for you to say whether it is ok or not
Kindest Regards

Reply # - February 17, 2013, 02:17 PM

certain spring
Posts: 762

Hallo Murat. I am sorry about your mother. Obviously I am not a doctor but I suggest your mother should be eating whatever she finds appetising and easy to eat. Anything that keeps her from losing weight, which is very easy to do on chemo.
I think you have a good point about it being impossible to avoid antioxidants in food. I suspect what your oncologist meant were extra supplements taken as vitamin pills and so on. Dr West answered a similar question like this:
"The general summary is that anti-oxidants such as vitamins A, C, and E can interfere with the mechanism by which radiation and some chemo agents exert their anti-cancer activity, so they can backfire and reduce the efficacy of the established treatment. I am comfortable with my patients taking a multivitamin, which usually doesn't contain extremely high doses of any vitamin component, but I am wary that there may well be unintended negative interactions between higher doses of individual vitamins/supplements and radiation or chemotherapy. In many cases, this hasn't been well studied, so I wouldn't want to cause alarm or overstate that there is clear evidence of a profoundly harmful effect, but the approach that I advocate is that less is more."
As for the lamb, I am no expert but maybe the oncologist felt it might be helpful in building up your mother's strength.
On your other question, it is possible to derive benefit from Tarceva or Iressa even when the EGFR mutation is not present. See http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/
All best.

Reply # - February 17, 2013, 06:31 PM

dr. weiss
Posts: 206

We generally prefer that patients avoid mega doses of antioxidants, such as from IV vitamins or large doses of antioxidant pills because chemo works, at least in part, through oxidative damage to cancer cells. Generally, other than perhaps with a pretty extreme diet, it would not be possible to eat a harmful dose of anti-oxidants with normal foods. Even a standard multivitamin is generally considered safe.

Reply # - February 17, 2013, 08:43 PM

Dr West
Posts: 4735

I completely agree with Dr. Weiss. In contrast, I think Dr. Watson is someone who knows remarkably little about clinical oncology. Despite his contributions to genetics decades ago (and not that much in the 60 years since then). It's worth bearing in mind that he has never treated a cancer patient and isn't qualified to do so, even if his frequently bombastic opinions might mistakenly imply that he knows something about clinical medicine. In truth, he is no more qualified to practice medicine than you are. The only difference is that you know what you don't know, while he pontificates haughtily.

As for subsequent targeted therapies, the only one that has a clear role in patients after first line treatment who are EGFR wild type (no mutation) is Tarceva (erlotinib).

http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/

Avastin (bevacizumab) is specifically not indicated in patients with squamous NSCLC, who have a significantly higher risk of life-threatening or fatal bleeding complications on it. Iressa (gefitinib) has the same mechanism as Tarceva but if anything is likely a little less effective in EGFR wild type patients.

-Dr. West

Reply # - February 18, 2013, 01:27 PM

murat
Posts: 16

After reading all about Tarceva i do see possible benefit for my mum .
Post appointment with our Oncologist i am disappointed .Today We were there to get the results for blood and urine test to check if she was ready for 1st line chemo , taxol and carboplatin .
Her blood test results were ok for chemo.Her liver is not very well so he said we need to wait another week to start chemo . Plus the symptoms she has been getting in the past week nausea , pain , tiredness , loss of appetite . She had the radiation for the tumors in her brain , spine and femur . Its been 1 month since her diognasis and she had radiation since then and last week was a week off before starting chemo .
This week off has been a bit of a nightmare . She started having vomit and cough ??? Also 7/10 back pain , and pain under her arm . She was able to go shopping till these symptoms started happening , loosing appetite cause she thinks she will vomit and cramps in her tummy . She is avoiding even sitting now , only wants to lay down , so Ongologist suggested we wait for a week to start chemo . He perscribed protenex for her stomach , geralgine and durogesic , a plaster for pain management . She also has a fever 37.5 38 nearly all the time for the whole week . I was wondering if it was radiotherapies side effects coming after a week , she was also given cortisone during radiation , would that be the reason she was fine earlier?
Oncologist recommended that it is likely from radiation effected her stomach or it might be side effects or it might be because of tumor action ??? Cough, fever , pain and soreness under her both arms , loss of appetite all came together .
I am also disappointed that when I asked about Tarceva if chemo didn't work or whatever , We want to try it he said no . She would not benefit , I asked if it was ok for her to go for acapuncture he didn't reply , i also asked if its fine for her to eat goji berries during treatment he said he doesn't know so he won't say anything .

Reply # - February 18, 2013, 01:38 PM

murat
Posts: 16

What is shocking is we really trust him and did research about he Oncologist , he is he best known, we even got second opinion to see if everything is ok and we were told that everything he is doing is right .
But he doesn' t know why all these symptoms are happening. What would be best way to check whats happening ?
Thanks very much for everyones help , we appreciate it kindly !

Reply # - February 18, 2013, 04:18 PM

catdander
Posts:

Murat, I'm so sorry. It sounds like your mum is having a very difficult time. I would hope that she receives sufficient treatment for her pain and nausea and vomiting. There are treatments that can usually mitigate these issues in most cases.

After WBR people often experience extreme fatigue that begins weeks after the treatment has ended.

I'll ask one of our palliative care specialist to comment on your questions. You should hear back today.

In the meantime I will post some links that discuss these things.

All best,
Janine

Reply # - February 18, 2013, 04:35 PM

catdander
Posts:

Below are posts that discuss symptom management. Whether the symptoms are cancer induced or from treatment it is a constant balancing act that keeps people with cancer feeling as good as possible for as long as possible.

I hope your mum feels better soon and is about to move forward the anti cancer treatment.

http://cancergrace.org/cancer-treatments/2012/08/03/dr-stephanie-harman…

http://cancergrace.org/cancer-treatments/2012/07/28/dr-harman-on-cancer…

http://cancergrace.org/cancer-treatments/2012/07/26/what-is-palliative-…

http://cancergrace.org/cancer-treatments/2012/06/07/selected-asco-abstr…

Reply # - February 18, 2013, 07:39 PM

Dr West
Posts: 4735

murat,

I don't know that I would be that hard on the oncologist. The truth is that cancer can be very complex, and it sounds like your mother has many different things going on that make it very hard to interpret what's happening. My fear is that many/most of her problems may be more from her underlying cancer than anything else, but if the oncologist isn't providing an answer, it could really be that there's no clear way to say what is causing it. The idea that doctors know the answer to everything happening to everyone all the time is really complete fiction: TV shows about doctors knowing all sorts of obscure things and providing authoritative answers are just completely unrealistic. Cancer patients can have many things going on, and I think you should be more suspicious of someone who has all sorts of clear answers than someone who expresses uncertainty.

For instance, there is no meaningful evidence in the world about a clear effect of acupuncture or goji berries on cancer. Many things out there have just never been studied, so there's no way to say much about them. Most often, the people with a definitive answer in such cases are making it up, typically profiting from that.

-Dr. West

Reply # - February 18, 2013, 08:30 PM

drramchandran
Posts: 9

Hi Murat,

I am so sorry your Mum is so sick. It is very hard to see someone you love suffer. Some of the effects you describe could be from radiation. Sometimes the effects are cumulative and after completion people feel worse than before.

I would not get too worried about the treatment delay. Starting chemotherapy when you are already sick can make your mum sicker and often set her back. I would rather recommend, like your doctor is doing, good symptom based therapy to try and help your mum get back some strength.

I cannot speak to her fevers- this should be evaluated by your doctor. However a good regimen for nausea- usually we say Around the Clock- meaning taking a dose of medication on a regular basis rather than just as needed is important. Also being on a good regimen for pain. Usually we use a short acting pain medication (something like morphine immediate release) and if someone is needed many doses of these we start a long acting medication that will cover her pain even when she is sleeping.

With regards to the appetite, I agree with some of the commenters. Let her eat what she can. Her appetite will be low, but be patient.

Again, I am hopeful that she will feel better in a few days. With my warmest regards,

Dr. Ramchandran

Reply # - February 18, 2013, 11:19 PM

murat
Posts: 16

Dear Janine , you got great news reg your husbands esults thats really good! And thank you so much for the links .
Dr Ramchandran and Dr West , thank you so much for post
Ng on my questions i do realise that you are right , thank you very much
I will let you know how we go
Regards
Best Wishes to everyone
This is a great website !

Reply # - February 26, 2013, 07:57 AM

murat
Posts: 16

Hi again
My mum had the first carbo/taxol past Thursday . flatus , neusea and vomitting which existed before the chemo are still the worst part . She has less pain but she doesnt want to eat anything , because she feels full amnd she vomits whatever she eats . She is taking zofran forneusea and it has helped a bit however , i am really woorried she is waking up at night even with neusea . She didn't eat much since monday , she was drinking lots of water but that has come down now as she is vomitting whatever we give her. Now she is feeling like she has urine but nothing comes out when she goes to toilet . It is not good that she has not eaten since monday last week , all she had was boiled potatoe.
I also read these could be because of the brain tumors , we called oncologist and he told us to talk to urolog , he will see us tomorrow for urine test . It could be related to her being in bed all the time . She wont walk or sit with us to eat she wants to be in bed and she can go to bathroom byherself butnot easy

Reply # - February 26, 2013, 11:36 AM

catdander
Posts:

murat, I'm very sorry your mum is feeling so bad. I hope she can get some of these issues straightened out. The fatigue comes with the chemo and really not a lot can be done about it but let the person rest when needed. There are several options for the nausea and vomiting. The most important part is to take as directed, some are taken as soon as nausea shows its presence and others are taken in anticipation of becoming nauseous. If there is someone who lives with her he or she can help with that. Below are 2 video/transcripts about managing symptoms. Don't miss the "further reading" links at the end of the posts.

http://cancergrace.org/cancer-treatments/2012/07/26/what-is-palliative-…

http://cancergrace.org/cancer-treatments/2012/08/03/dr-stephanie-harman…

I hope this is helpful, let us know how the doctors visit goes,
Janine

Reply # - February 26, 2013, 08:00 PM

Dr West
Posts: 4735

I'm sorry to hear she's having such a hard time. It seems as if she's got many things going on and is experiencing a tough downward spiral, which makes it very hard to try to envision what to suggest. There may be several things feeding into each other. I hope she turns around with time away from the chemotherapy and is feeling better soon.

-Dr. West

Reply # - February 27, 2013, 01:56 PM

murat
Posts: 16

Our doc suggested that it is normal for her to have loss of appetite but recons the vomit might be phsycological . The medicine she is taking for neusea is zofran , I was asking for something else but he didnt want to proceed he said its the strongest . I was asking for Emend apprepitant for her but he doesn't want to perscribe it .
Urologist said that she will get sodium chloride solution for dehydration . so they gave her that for a few hours but again vomitting and gas in her stomach is painfull . He said that we are coming to final stages so be prepared , her organs will start failing and chemo wont work ? I told him i do ignore him cause he cant tell what is going on without doing any tests . There was no problem with her urine today , oncologist said we should try to keep her hydrated and there is nothing too much life threatning at the moment . She might be feeling down and thus making her vomit .thats why we cant stop it possibly . There is also possibility that the tumors are releasing chemicals . A lot going on in her . But I still wonder what if she could benefit from the other medicine

Reply # - February 27, 2013, 09:39 PM

Dr West
Posts: 4735

Those other medications are really only established as appropriate along with nausea-inducing chemotherapy given right at the time.

Good luck.

-Dr. West

Reply # - March 7, 2013, 01:12 PM

murat
Posts: 16

After hard 12 days of no appetite , 3-4 vomitting daily and diarherra, full on , unbelievably without drinking much and no appetite days our doc told us to bring my mum to hospital . She didn't loose much weight but the we had to give her IV fluids to avoid dehdration . She had so much gas in her tummy and the stomach was feeling full and even from outside it looked as if its full . Anyway arrived at the hospital and she had to get blood given to her and also so many nutrition through blood to replace everything back she lost in that 12 days . Now its day 5 at the hospital and she is just getting better . Can walk a bit around the hospital few meters ... The doc said following 30 day radiation therapy , the chemo had a bit of power making things the way they are . She hardly started eating, howevver no neusea nor vomitting since we got to hospital . She used to vomit even if she did not eat anything , taking her anti neusea drugs regularly. We couldnt stop it with anything . Even more than a week past first chemo session .
ALK test results came in this morning with no ALK mutations .
What other options are there if chemo wouldnt work?
We are keeping our good hope on chemo of course is theonly thing we want it work. What if it didnt work what other trustable target therapy medicines are there ?
What would be the best to try ?
And there was a bit of a fracture connected to he spinal metasteses on L1 . She has back pain she is on Durogesic 25mg flaster .Worried to make her walk and she really has hard time already getting out of the bed to get to the toilet . She needs a hand sitting up in bed . Of course she got way too weak and staying in bed didnt help it either . Plus going through chemo .
What shall we do before 2nd chemo , and past that ? I do understand what is being done is for bringing as possible quality of daily life as possible . I do realise it is to cıre it , hopefully stop it where it is metastased . Spinal cord, kidney , brain ...
Also worried abo

Reply # - March 7, 2013, 01:32 PM

catdander
Posts:

I hope your mum continues to improve. Make sure you understand what was done and what needs to be done to keep her tummy settled.

You've asked a lot of good questions about next steps. I think it will be most helpful for you to go through this set of short discussions about targeted drugs. They were done just over a week ago by some of the top researchers in the field. Dr. West asked the doctors questions he sees most often here so you can get the most up to date info on a wide range of topics (many you've brought up in your post). Then you should have some specific questions to ask here or to your mum's doctors.

http://cancergrace.org/general/2013/02/20/iaslc-vids/

Janine

Reply # - March 7, 2013, 09:34 PM

Dr West
Posts: 4735

As Janine noted, we can't answer those kinds of questions, and certainly not a long list of extremely broad questions, but I hope you'll find some valuable information by looking around at the information on the website, including some of the recent videos here.

If you have a specific question that isn't soliciting for medical advice on what to do, we'll certainly be happy to help. But bear in mind that we can't provide individualized treatment recommendations for people who aren't our patients.

Good luck.

-Dr. West

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