My mom is 53yrs, stage iv, primary tumor in right lung with mets to other lung as well as liver, dx jan09. Had chemo/rad tx (6 weeks in total) before we found out that the cancer spread to other lung and liver.
My mom is feeling fantastic. Has never had a symptoms of cancer, no reactions to the treatment (good or bad since it didn't work and still spread) She is retired and traveling all the time with my dad, walking for hours, and wears me out and Im 28!! lol
Our oncologist has be brutually honest from the beginning. He is stating now that she has "months" to live since the cancer is "aggressive" and spreading.
How can you look and feel so good, it's a blessing, but also difficult knowing/thinking her life will be cut very short.
The oncologist has offered her "palliative" chemo for when the tumors become to large and cause pain, has also offered a trail drug as well. I have asked about tarceva but he didn't seem to think it would work since he said that it mostly works in young oriental women that are non smokers (which my mom is not)
My mom is extremely hesitant to do any treatments since she is feeling so great, and I agree with her though a part of me wants her to try anything to become "stable". The oncologist made it seem that this is the end of the line...but is it....especially if she doesn't want any more treatment?
Any advice or words of encouragement?
Thank you :)
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Quality or Quantity
- By jen80
- Posted September 22, 2009 at 11:26 pm · 26 replies
- In Non-small cell lung cancer - Stage IV
- Shared with the public
Explore topics in this discussion:
Cancer Taxol Chemotherapy Erlotinib Surgery Pain Tarceva Avastin Lung cancer
26 replies
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- By yangjc048
- Posted September 22, 2009 at 11:49 pm
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I would change an oncologist because one that isn't willing to fight to save your mom's life isn't a doctor worth seeing in the first place. Tarceva does not just work for asian women and non smokers. It will work primarily well for those that have gotten the EGFR mutation test and tested positive for the Epidermal Growth Factor Receptor mutation. You should suggest a new oncologist to send the biopsy or whatever cancer tumor sample they have of your mother and send it out to a lab for mutation testing - primarily these 3 types of mutation testing: EGFR, KRAS, and EML4-ALK. If your mom is put on Tarceva and the Tarceva drug works, it will bind the receptor of the cancer cell that causes kinase phosphorylation that sends out a signal to allow the cancer cells to replicate and spread. If she tests negative for EGFR mutation however, there is a smaller chance that Tarceva would work to inhibit the growth of cancer cells, but it does not mean it will not work at all. My mother has non-small cell lung cancer as well. She is stage 3a. If the cancer is so widespread in your mom I would suggest radiation with cyberknife and a chemotherapy treatment of some kind. If Tarceva does not work for your mom she should ask about either Alimta, Taxol, or Cisplatin (Cisplatin is the strongest and most toxic of the standard chemodrugs as it is a platinum based chemo). Also a diet is important as well. My mother is juicing right now with a combination of beets (a very strong anti-cancer agent that breaks down cancer faster than your immune system can), carrots, red or purple grapes, pineapple, and apples mixed with water. Also have her cut out meat from her diet and eat 6 types of beans instead ranging from black, green, barley, red, etc - do not fry these... boil them. Also have her eat lots of brocoli, mushrooms - Grifola frondosa: Maitake
and Agaricus subrufescens: himematsutake. Do not have her eat sugary foods such as cakes, icecream etc. Also for supplements I suggest you get her Vitamin D tablets and also Cod Liver Oil tablets. There is also an experimental Vegetable Soup supplement that is currently doing clinical trials that you can also purchase for your mother that supposedly worked for patients with lung cancer - it is called Sun Farm Vegetable soup: http://sunfarmcorp.com/products.htm
This supplement is rather pricey at 700 dollars for a months supply. My mother is trying all of these right now (other than the Tarceva, Alimta and Taxol but she is on Cisplatin/Navelbine combo).
- By cuddles53
- Posted September 22, 2009 at 11:51 pm
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Get another opinion, she is much too young to give up before she even gets started, Tarceva is given to men and it works sometimes, so don't let this one doctor tell your mom the way it is, you wait and read the posts on this site, do not read the stats, they lie and so do the doctors. I am a stage lV and was only given 12 to 15 months with treatment. I went today for my reading of a scan from last week and still I am stable and it has been since Feb 2006! So don't give up on this healthy mother, she will be as strong as an ox, and kick that cancer right out of her body, and be stable, if she lets it grow and it gets too big, she will die and nothing we can do then, there are many treatment options today for us. I am older now than your mom. I was diagnosed when I was 52 and I am now 56, so give her hope, and tell her to read on this site, also if she won't then read for her. Get that other opinion. The cure is right around the corner,and if she receives no treatment and dies in a few months, and a cure comes out the end of this year, how are you gonna feel? Pretty bad. i know it is her decision, but she may need a little push on this one, and then let her make up her mind, but not after just one opinion like that, that opinion doesn't even sound hopeful, yet you do yourself? So tune her into the reality of life after cancer, there really is one. If she is really good and healthy, may I recommend very strongly she get the sensitivity testing done, it is a test on a biopsy tissue to see what chemo drug will kill her specific cancer. there are also some clinical trials she might be able to get into that are using lung cancer vaccines. Here is the site to check out for this sensitivity testing. I urge her to go for this. www.rationaltherapeutics.com it can tell if tarceva will work, we have a lovely lady on this site who had this procedure done and they put her on tarceva and it is working well. Let us not play any guessing games when it comes to your most precious mother.
also the site for one of the lung cancer vaccines is NovaRx this is the company, and the trial lung vaccine is called Lucanix. Another one is called ?Stimuvax, not sure what company stimuvax is with but you can look it up by using yahoo or google, just type it in and it will come up and tell you copmpanmy and manufacturrwer name of stimuvax. many drugsd available. Alimta, Avastin, gemzar a great chemo drug, Carbo/taxol a combination chemo cocktail and also now they add other drugs to it making it even more effectiocve and less side effects. some vaccie trial dtrugs have no side effects at all only redness at injection sites. so please urge her on with your love and true compassion.
god bless her and you both.
Sandy
- By cuddles53
- Posted September 23, 2009 at 12:10 am
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What great dietary suggestions you gave her, I am putting this in my file box for myself, wonderful words of wisdom, are you new here? If so welcome we need your expertise on this site, we welcome you, and will help you also with any problems that may come up.
I totally agree with getting another opinion, I do not like a doctor who is so ready to just eliminate someone from the planet earth! do they realize this person only has the one life, and is a mother, a sister, a wife, a teacher, a lover, a friend, a co-worker, a happy lady most of the time?? No they don't know the person, so they say you only have a few months to live anyway so why bother? Why bother? Because it is me, or it is my mother or my sister that is why we must bother!! They make me sick. I am fighting for the ones I love on this site to try their best to get as much help as you can, grab as much hope into your life as possible, and find a doctor who will help you, not tear you down, and rip your dreams to shreds..
I am glad you joined us, i can tell you can be a big part of this community of ours.
God Bless Sandy
- By yangjc048
- Posted September 23, 2009 at 12:45 am
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Hi Sandy,
Yes I'm quite new here. Since my mom was diagnosed in April 2009 with Non-Small Cell Lung Cancer I did a lot of research on cancer and treatments. I have a background in human physiology, anatomy and microbiology and I'm studying to be a RN and hopefully one day an Oncologist. What I know about chemotherapy drugs is that it only prolongs life and does not always work. Cancer cells mutate and become resistant to the drugs out there. If you ever heard of a cure known as Kanzius which was invented by a man that had cancer himself. The technology uses gold laced nanotubules which when injected into the body with the help of monoclonal antibodies - it will seek out microscopic cancer cells and also tumors and latch onto them. Using harmless radiowaves the frequency of the waves heat up the gold metal of the nanotubules and cook the cancer cells. Normal cells are unaffected as the nanotubules bind only to cancer cells. This was tested on mice and animals already and is pending FDA approval for human clinical trials. If you think about cancer cell resistance to drugs etc... you would figure that there is no such human cell in the body that can resist being heated alive. I hope that all cancer survivors and their families will hear of this cancer cure which cures all types of cancer not just lung... and help to support this.
- By yangjc048
- Posted September 23, 2009 at 2:27 am
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One more thing... the tumors removed are they "well differentiated, moderately differentiated or poorly differentiated?" This makes a huge difference in how fast the cancer cells spread with poorly differentiated being the fastest. Well differentiated basically means it resembles normal human cells with slight mutation, while moderately differentiated means it has mutated somewhat into cancer cells, and poorly differentiated means the cells no longer resemble normal cells.
- By yangjc048
- Posted September 23, 2009 at 2:31 am
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Remember if on chemotherapy always have good nutrition. It helps in the fight for beating cancer as chemotherapy alone cannot win the battle. It is the combination of all things! Fight it and don't give up. Please give us updates on what is happening.
- By HollyJo
- Posted September 23, 2009 at 2:47 am
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Yangic045,
Wow! You have really inspired me! Your knowledge not only has such potential to help people on this site, but I truly believe you will go on to being a Great Doctor!
Have you and your mother considered Surgery? If not, could you explain why?
I am trying to figure out what is best for my husband who is a stage lllb with lymph node involvement.
So glad you joined us, there really is alot of great information and support here,
Holly
- By HollyJo
- Posted September 23, 2009 at 2:47 am
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Yangic045,
Wow! You have really inspired me! Your knowledge not only has such potential to help people on this site, but I truly believe you will go on to being a Great Doctor!
Have you and your mother considered Surgery? If not, could you explain why?
I am trying to figure out what is best for my husband who is a stage lllb with lymph node involvement.
So glad you joined us, there really is alot of great information and support here,
Holly
- By sticktogether
- Posted September 23, 2009 at 6:36 am
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Too young to die! Get another doctor! Don't let it get any worse before making a change. I also agree with yangjc about the supplements and diet.
- By robinhood
- Posted September 23, 2009 at 6:58 am
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Yangicop5
You have received some excellent advice on this site. Your mom is much too young to give up. Get her to another oncologist who is willing to fight with her.
I am a black 70 year old female stage 1v nonsmall cell lung cancer fighter. Tarceva has been working for me since last Nov.
If not Tarceva, there are many other drugs and drug combinations along with clinical trials to try.
Good luck and let us know how your mom is doing with the new doctor.
- By chessie-too
- Posted September 23, 2009 at 8:55 am
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Yangjc is absolutely right! Tarceva is not just for Asian women.
I was given tarceva as first line treatment and I am caucasion, smoker, and 62 years old. Never had any other chemo. To look at me you can't tell I am sick. I still work and do everything I always did. They originally gave me 6-12 months! I switched doctors as soon as he told me that. If he wasn't going to fight for me to live, I didn't want him around. That was 3 years ago.
Good luck and God Bless
- By Granny888
- Posted September 23, 2009 at 11:21 am
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Yea, Mom is way too active to make herself permanently inactive by giving up ... stats are old and newer treatments can be -- not that bad in any event. There are mutations and so forth deciding on whether something works, there is an assay test on finding what WILL work, there are milder more effective chemos. Sounds like your mom already has the attitude, active.
Quality vs. Quantity? I vote for both. There may be an interim where quality goes down a little, depending on what is chosen, but there may not. Tarceva I hear works wonders, and not just on young asian non-smokers. It might not -- but it might. There are tests which make it more predictable.
- By yangjc048
- Posted September 23, 2009 at 12:08 pm
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From what I know Holly it is beneficial to have surgery to remove known tumors with stage 3b, followed with chemotherapy (Cisplatin with combo like Navelbine). Tarceva is normally used as last resort drug as it is EGFR inhibiting and can bypass the blood brain barrier of the brain. What the blood brain barrier does is it helps to maintain pressure of the brain from the rest of the body. This way only glucose and oxygen travels to the brain. But if a tumor grows in the brain it pushes against it and causes an inbalance in pressure. The CSF - cerebral spinal fluid of the choroid plexus normally seeps out and when one gets an MRI the halo that forms around the tumor growth indicates it is a tumor because the halo around it is actually the fluid seeping around the tumor itself. Tarceva works for EGFR and inhibits tumor growth especially in the brain. Other drugs are coming out that is similar to Tarceva such as Zactima which is another Tyrosine Kinase Inhibitor (A protein inhibitor of cancer cells that prevents it from growing and spreading). As such they are involved in many cellular processes such as cell proliferation, metabolism, survival and apoptosis (cell death - imagine a cancer cell as a balloon popping). Zactima is an orally active inhibitor of Vascular Endothelial Growth Factor (VEGF) receptor-2 (KDR) tyrosine kinase with additional activity against Epidermal Growth Factor Receptor (EGFR) tyrosine kinase, a property it shares with Iressa (gefitinib). By the way Iressa the predecessor of Tarceva (Erlotinib) is making a comeback.
- By yangjc048
- Posted September 23, 2009 at 12:18 pm
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By the way I heard of some really fascinating new treatment that they are researching right now in the war against cancer. Scientists are working on a variant of the HIV virus to attack only cancer cells. This is a great idea if it works because you would take a monster to kill a monster and it is the equivalent of giving Cancer cancer. HIV which is the latent virus of AIDS is a resistant virus much like cancer is resistant to most drugs. It would make sense to take a shapeshifter (one that mutates - HIV/AIDS) to fight another shapeshifter like cancer. http://www.sciencedaily.com/releases/2009/05/090522081217.htm
Another one here where it uses the HIV drug to fight cancer cells:
http://abcnews.go.com/Health/Healthday/story?id=4508503&page=1
- By yangjc048
- Posted September 23, 2009 at 12:20 pm
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- By HollyJo
- Posted September 23, 2009 at 1:33 pm
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Yangic,
Thank you so much for sharing your knowledge with me.
It is very much appreciated! That is very interesting about the virus to kill AIDS. I will be reading those articles later this evening.
Off the topic at hand here, but do you have your mother eating Fresh whole Beets? I want to add this to my husbands diet.
Holly
- By yangjc048
- Posted September 23, 2009 at 3:08 pm
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I mix beets (with the skin still on it) with carrots, apples (with the skin on) and purple or red grapes and add water in a blender. Mix it until it is liquid and drink it raw. Do not cook these ingredients.
The research is to use the AIDS virus to kill cancer cells. It is a harmless AIDS virus that is modified to target only cancer cells much like Tarceva is a targeted molecular therapy that targets the EGFR receptor. Except in the case of the AIDS virus it affects only cancer cells and actually gives cancer cells a disease. This is exciting research because if this virus was used to kill cancer cells and patients were also given a combination treatment of monoclonal antibodes to boost the immunse system... this would be double the army and defense in fighting cancer. AIDS virus that targets cancer cells only + T-cells, Natural Killer cells, lymphocytes, and Cytoxic T-Cells from monoclonal antibodies injections = win win situation for cancer patients and a lose lose situation for cancer cells.
- By drawing3d
- Posted September 23, 2009 at 3:19 pm
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Very interesting posts here....
Later tonight I want to read all the links you so kindly posted Yangic.
Holly and Yangic, I just wanted to say something about "beets".
First of all, I cannot stand those little noxious balls of what tastes like sheer moldy earth. I eat raw garlic sandwiches, drink fish oil with turmeric in shot glasses, and blend veggie drinks that smell so badly my dog leaves the room with an attitude, but the mere thought of eating beets with the SKIN still on makes me gag...
Secondly, though please know I eat them PEELED every single day against my will. <sigh>
My saving grace is that I have found a trick to eating raw beets I want to pass on to those like me who shudder even when thinking about them.
Buy the young ones... the smaller, the juicier and they taste less "moldy". I cut the outside skin off and then cut into thin little slices like thinly sliced cheese. Then just as you are popping them into your mouth, eat one or two raw almonds at the same time and Voila! You cannot taste the beet anymore...and the fiber in the nut helps slow the digestion of the beet sugar too as an added bonus!
I do stick them in the blender occasionally too with lemon and ginger because they help hide the taste. Why anyone would do it otherwise "beets me" :)
God bless,
Ellen
- By tcevs
- Posted September 23, 2009 at 5:28 pm
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I would first like to say I am sorry your mom has this awful diasese. My mom was 51 when she was dx in May of 08 and survived 1 year til May of 09. She however wasn't as lucky and feeling as well as your mom. That is great news that she is feeling so well given her situation. I would def try to find out more on Tarceva, it does work better on asian, non smokers but it does work on other people as well and you never know until you try. The good thing about Tarceva is that there are minimal side effects. My mom was on it but it didn't help much. I wish you and your mom well. Keep the faith and keep fighting. I am the only child who gave birth to a daughter 15 days before my mom passed. She gave it everything to be there for me when delivered my daughter. Spend every free second you can with her. Good luck and I praying for you
- By HollyJo
- Posted September 23, 2009 at 6:47 pm
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Yangic,
Thanks for the info on the Beets, guess what my husbands getting starting tomorrow! lol I will drink it also, I promised I would drink/eat what he does, it can only be good for me!
Ellen,
LOL! Thanks for the warning! I will hold my nose and swallow!
How much fish oil and how much Turmeric do you use? I bought the spice, but I dont think I am using enough, and I did hear you need oil to help your body absorb it.
Thanks, Holly
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