Hello folks,
Dad, age 64, smoker for last ~35 years, heavy smoker for last ~20 years, got a gift of NSCLC. The metastasis is in one of the lungs and at the base of the skull, supposedly in one of the lymph nodes too. The Oncologist categorized as 'Advanced' stage. He didn't specifically mentioned if its stage III or IV. Suspicion is, it has gone to the bones as well (high alkaline phosphatase).
He is in India, and I am not too sure of the drugs available for treatment in India. The oncologist recommended gemcitabine/cisplatin. Dad is getting admitted tomorrow. His health is not great. He is low on Vitamin D (just 18), A1c is 6.1 and weight is around 110 (but so is for last 30 years). CBC is normal. Thrombin test came out normal. I don't know how chemo is going to wreak havoc on his health, but how/what do you folks recommend me to plan for.
I am in the US and flying out in 2 days. Are there any supplements that I can take from here? I left India long time ago, and I am more well versed with the US system than the Indian system. I have absolutely no idea where I can find supplements. The drugs will be provided by the hospital.
More of a open question, what should be my plan of action, apart from just going to India and talking to his Oncologist? I am totally confused. Although I was suspicious for a long time that this is not going to end well, this news has rocked me for sure.
Any guidance is most appreciated.
Reply # - April 4, 2014, 04:25 PM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
I'm sorry your dad has been dx with lung cancer. If the cancer has progressed out of the lungs it's most definitely advanced/stage IV. In this case the cancer is still treatable but not curable. That means treatment is for making your dad live longer with the best possible quality of life, and less likely to take risks in treatment.
I think the best thing you can do is read what we have available in our library. Note that a lot of info is on genetic mutations that your dad may not be likely to have especially if he has squamous cell nsclc instead of adeno nsclc.
The 2 things to note about the treatment is that cisplatin is usually harsher than it's counterpart carboplatin so carbo is often used instead in first line stage IV disease. The second thought is gemcitabine is an appropriate choice as long as any radiation is given only after about a week off gem.
We have had a couple of members in India with whom I had much contact and it seemed like they used the same standard of care as in the US. As in anyplace US or wherever you'll find many differing opinions and more and more family and patient are able to play a bigger role in decision making.
Please don't hesitate to ask questions as you have them.
Janine
Here are a few links to get you started,
http://cancergrace.org/lung/2014/03/16/invisible-disease/
http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed…
http://cancergrace.org/lung/category/lung-cancer/core-concepts/metastat…
Reply # - April 4, 2014, 04:33 PM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
(answered at the same time as Janine, but consider it your first "second opinion"):
I'm sorry about your father's diagnosis. Unfortunately, what you're telling us conveys that he has stage IV disease, which is not curable, but which is certainly treatable with a realistic goal of improving survival and minimizing cancer-related symptoms over as long as possible.
A two drug combination like cisplatin/gemcitabine is a very fine standard (optimal) treatment for patients with advanced/metastatic non-small cell lung cancer if their cancer doesn't have a so-called "activating mutation", particularly an EGFR mutation or ALK rearrangement. These biomarkers are relatively uncommon, at least in patients with a smoking history.
Here is some additional information about management of advanced NSCLC:
http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…
There isn't any supplement that has any established role or demonstrated value in clinical trials, and most experts in lung cancer are more than happy to minimize the additional medications that have no proven value but add a potential variable that could be harmful as well as helpful.
It would be very appropriate to have a frank discussion with your father's doctor about what might be expected from his particular cancer in terms of symptoms, time lines, etc. so you can prepare for how best to handle things.
Good luck.
-Dr. West
Reply # - April 4, 2014, 06:00 PM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
Thank you Janine and Dr. West.
This is quite a lot to digest. I was considering Vitamin D because of its anti-proliferative effect. He is going to have a discussion with the Oncologist, and go from there. To be very honest, the doctors in India are not as open to discussion as the ones in the US. Majority of the times, there is a monologue and thats the doctor talking and the patient listening. I will try my level best to ask him as many questions possible, but I do not have confidence that I will get answers to my satisfaction.
Second point is, if its not curable, what quality of life are we talking about here. To what extent his quality of life will reduce? Once this cancer is contained (the spread?) is he going to take medication for rest of his life, and how those medications, if any, are going to affect his other vital organs? I am going to have this discussion with him too. His pain threshold is extremely low and chemotherapy as I know, he will have a pretty tough time. opiod derivatives are not as easily available in India as in the US. So what are the recommendations for pain killer?
Few questions I have asked my Dad to ask his oncologist
- Will use of anti-inflammatory like Advil or Baby Aspirin+Celebrex on daily basis help to keep little bit of inflammation in control?
- How about using Melatonin so that he gets enough sleep?
- How will this treatment affect renal system. I read that it can lead to kidney failure. AFAIK, he doesn't have any renal issues, still it is scary. (Dr. West's link talks about this a bit.)
- How about liver toxicity. I am assuming that these drugs pass through liver for metabolism purpose.
I am very sorry for putting so many questions out. I am trying to absorb as much as I can, and it is not at all easy.
Thank you so much again for very quick and informative replies.
Reply # - April 4, 2014, 08:07 PM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
There's no proof that vitamin D or any supplements help control cancer growth. But some are thought to keep cancer safe against treatment. So you'll want to do a search on any individual supplements he might consider and check with his doc or nurse. This is an excellent start, http://cancergrace.org/cancer-101/files/2009/02/dr-bufi-interview-trans…
Unfortunately stage IV cancer will need to be treated to keep it in check and any oncologist will give a break when it's needed whether it's a week or month for vacation or indefinitely until the cancer progresses. Many people live 5 and more years with it and live life slower but well. There too are unexpected problems that happen so know that there will be bumps. His oncologists will make treatment decisions accounting on your dad's wishes and comorbidities (other health issues). That makes cancer treatment very individual. There is nothing but experiences here from others with cancer. A read through the 2 pages of this thread will give you a good example of what's possible http://cancergrace.org/topic/a-new-stage-looks-like-brain-mets-damn . Reading any part of this long thread will show how things can move along for someone with advanced nsclc, start with the page I linked to first though because it shows really good news. http://cancergrace.org/topic/new-new-plan/page/32
Search our threads and the blog post library. Our search feature is good but you may need to log off first (depends on what type of browser you use) Some of your questions are basic enough to readily find on cancer.gov so try there too for toxicities
I'm not aware of a shortage of opiate pain meds for people with cancer.
Keep us posted,
Janine
Reply # - April 5, 2014, 03:49 AM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
A quick update, Dad started Pacitaxel about an hour ago and then he will be given carboplatin.
One more quick question, he was asked to have his regular lunch. I read that if you fast for 24 hours before your chemo, the healthy cells are protected from the chemo to an extent, but the cancer cells pick up what they should. Is it true?
Reply # - April 5, 2014, 09:48 AM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
Hi deltaforce,
Dr. West commented on the question of fasting prior to chemo:
"I don’t know of any data and would be more concerned about a patient becoming very weak after both fasting and chemo. I confess I’m not remotely enthusiastic about this concept. Anecdotally, my patients who happen to be fasting, or all but fasting, before chemo because of poor appetite seem to do more poorly rather than better than many of my other patients." - http://cancergrace.org/topic/progressed-on-tarceva-now-adding-alitma-an…
JimC
Forum moderator
Reply # - April 5, 2014, 11:54 AM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
I would say that there is no evidence to support anti-inflammatories, vitamin D, or fasting around the time of chemo, and I do not recommend them. I don't know that they're harmful, but I don't think that's high enough praise to justify doing a particular thing.
As for kidney or liver damage, there is a rather small risk associated with many kinds of chemotherapy. All treatments have some risk, and that's especially true for anything that can kill cancer. But the key question is whether the risks of liver or kidney problems or other side effects is so great that it's worse than the risk the cancer poses by progressing. You can either treat it or not, and for patients with advanced lung cancer who are fairly fit and have good organ function, the risks of chemo are lower than the risks of not trying chemotherapy.
Good luck.
-Dr. West
Reply # - April 5, 2014, 11:54 AM
Reply To: 'Advanced' NSCLC – treatment starts tomorrow, pointers
I would say that there is no evidence to support anti-inflammatories, vitamin D, or fasting around the time of chemo, and I do not recommend them. I don't know that they're harmful, but I don't think that's high enough praise to justify doing a particular thing.
As for kidney or liver damage, there is a rather small risk associated with many kinds of chemotherapy. All treatments have some risk, and that's especially true for anything that can kill cancer. But the key question is whether the risks of liver or kidney problems or other side effects is so great that it's worse than the risk the cancer poses by progressing. You can either treat it or not, and for patients with advanced lung cancer who are fairly fit and have good organ function, the risks of chemo are lower than the risks of not trying chemotherapy.
Good luck.
-Dr. West