Need feedback please

[Oxajil]

Hi everyone,

A friend of mine is in a difficult situation at the moment, and I would greatly appreciate any feedback you may give.

His father is suffering from cancer. Last november lung cancer was found and he went through chemotherapy and radiation. His lung cancer cleared up a great deal, but last saturday I believe, cancer was found in his lymph nodes in the lung area, as well as in the stomach/gut. (He also stopped smoking after the lung cancer was found out.)

The doctors told them that his father can either go through with the chemotherapy or that they will give him another drug, which is new and is currently being tested on patients. The name of the drug is bms-936558 or nivolumab. Here it says that: "According to the researchers, nivolumab works by honing in on PD-1 cellular receptors located on immune system T-cells. These receptors are known to function as immune system "gatekeepers," and by working to open such gates the patient's immune system is triggered into cancer-fighting action."

Coming tuesday they would have to make a decision as to which approach they will go for. Either chemotherapy or the drug mentioned above. What do you guys think they could best do?

Another thing I would like to ask feedback about is that my friend has a little brother of about 10 years old. They didn't tell him yet about his father having cancer, however he does know that his father is really sick. My friend doesn't really know how he should go about this the best way for everyone involved. Would it be a considerate thing to do to tell his little brother about the situation and his father's condition? Or would it be best to leave it as it is now?

Any input is welcome! Thank you for reading.

 

[Iron]

What an awful situation...

Well, I don't know the PD-1 receptors, as my area of research is not immunology. But, the way I see they are concerned that the chemotheraphy will not be enough to stop the methastasis or they wouldn't suggest the new compound.
I have no information as to what is best, I dont know how this drug would perform, I can only hope for a safe healing for him regardless of what is choosen.

As for the little kid, he already knows that his father is very sick. Perhaps by stating its cancer may put kind of a death label in the mind of the kid.
I think its best to not state that he has cancer for now, but keep the boy informed of the general situation.

 

[Buddy]

Hi Oxajil.

Like Iron, I don't know about the medical treatment. Maybe someone with knowledge in that area will chime in.

About the boy, I also agree with Iron. You could tell him it's cancer but what would that mean to him? If he asked, you'd probably just explain the process you already described, anyway. Cancers can go into remission too, so I would certainly not project anything less than hope for a recovery until there's no other choice. But I'm just saying how I would try to initially handle that.

 

[Gaby]

He has lung cancer and I understand he will have it treated with mainstream drugs. Then the milder of the two options in terms of side effects sounds more practical.

If I where them, I would talk again with the doctor and ask specifically if there are preliminary reports of its efficacy? Why is currently being offered? Does the ethics committee approves of this drug? Is it because chemotherapy does not work? You know, genuine questions they might have. Then I will write them down in case of forgetting.

If he is going to go through the mainstream route, then it is his doctor's job to make things clear and explain all the details of the two therapies and to be quite helpful so as to not leave doubts in this difficult time. If the doc is not being helpful, then it is the patient and the families job to make themselves be treated fairly and to have explained what is being offered in language terms they can understand... Or ask a second opinion.

My 2 cents!

I'm sorry for the little one. I think that general info will work best? He is taken into consideration, but as nobody knows really what is going to happen, it leaves things open.

 

[Oxajil]

What an awful situation...

Well, I don't know the PD-1 receptors, as my area of research is not immunology. But, the way I see they are concerned that the chemotheraphy will not be enough to stop the methastasis or they wouldn't suggest the new compound.

The doctors recommended this new medicine, because they said his father is in a good physical state, and because the cancer has only spread to one area. They also received a letter with more information, it said that they don't know whether it will work or not, or whether it will have any effect at all. So yea...

As for the little kid, he already knows that his father is very sick. Perhaps by stating its cancer may put kind of a death label in the mind of the kid.
I think its best to not state that he has cancer for now, but keep the boy informed of the general situation.

About the boy, I also agree with Iron. You could tell him it's cancer but what would that mean to him? If he asked, you'd probably just explain the process you already described, anyway. Cancers can go into remission too, so I would certainly not project anything less than hope for a recovery until there's no other choice. But I'm just saying how I would try to initially handle that.

I'm sorry for the little one. I think that general info will work best? He is taken into consideration, but as nobody knows really what is going to happen, it leaves things open.

Thanks guys, reviewing what you guys have said, keeping it as it is, may be the best thing for the boy.

He has lung cancer and I understand he will have it treated with mainstream drugs. Then the milder of the two options in terms of side effects sounds more practical.

If I where them, I would talk again with the doctor and ask specifically if there are preliminary reports of its efficacy? Why is currently being offered? Does the ethics committee approves of this drug? Is it because chemotherapy does not work? You know, genuine questions they might have. Then I will write them down in case of forgetting.

If he is going to go through the mainstream route, then it is his doctor's job to make things clear and explain all the details of the two therapies and to be quite helpful so as to not leave doubts in this difficult time. If the doc is not being helpful, then it is the patient and the families job to make themselves be treated fairly and to have explained what is being offered in language terms they can understand... Or ask a second opinion.

This is very helpful. I will forward what you have said. Thanks Iron, Buddy, and Psyche!

 

[LQB]

If he is willing to try a little alternative on the side, a friend sent me this last night on IP6:

http://www.naturalnews.com/025975_IP6_cancer_treatment.html

Based on what the article says, some folks add this to more conventional treatment in attempts to rob cancer of iron. Maybe a quick iron panel would be a good thing to do.

 

[Olesya]

Hi Oxajil, I do agree with LQB that the alternative approach would be more prudent. Sorry, I couldn't find any data that would indicate something specific that would work in this case, but according to what Roberta Crawford wrote in her Iron Elephant book , p.24-25,

A Swiss study shows that lung cancer was 7,5 times higher than expected in patients with hemochromatosis...

Cancer research in 1988 published a study that described decreased tumor growth in iron-deficient mice...

At each observation the largest tumors were in the normal iron group. Tumor growth in the iron-deficient group continued to be sufficiently slower, and tumors remained smaller.Metastasis was seen in six of the normal iron group and only one of the low iron group

They suggested that 'iron supplementation in cancer patients or older people at high risk of cancer might enhance tumor growth'. They said 'this knowledge should be considered when designing treatment for patients with cancer. Iron oversupply in cancer patients might enhance tumor growth and adversely effect cancer therapy.'[Hie-Won L. Hann, Mark W. Stalhut and Baruch S Blumberg].

.. if the cancer had not already made the patient iron-deficient, let's go ahead and reduce the iron burden. And before cancer appears let's remove all excess iron, taking the ferritin to below ten, and deny the essential iron to any opportunistic cancer cells.

And, so the question that needs to be answered is: was this man given some kind of iron supplement or iron raising drug for anemia that usually associated with primary cancer treatments? If yes, he should definitely stop taking it and try to unload his iron, osit.

On this, 'wonder' drug Nivolumab, I found that it is usually is given in combination with chemotherapy drugs. I got the impression that when it's used as a monotherapy, it used almost as a control group : _ http://clinicaltrials.gov/show/NCT01454102 , because it said there they evaluating it's safety and tolerability, not so much the effectiveness against cancer.

When Nivolumab was used in combination with Yervoy® (ipilimumab), there were serious immune-mediated adverse reactions link here: _http://www.fortmilltimes.com/2013/06/02/2730405/bristol-myers-squibb-announces.html

YERVOY can result in severe and fatal immune-mediated adverse reactions due to T-cell activation and proliferation. These immune-mediated reactions may involve any organ system; however, the most common severe immune-mediated adverse reactions are enterocolitis, hepatitis, dermatitis (including toxic epidermal necrolysis), neuropathy, and endocrinopathy. The majority of these immune-mediated reactions initially manifested during treatment; however, a minority occurred weeks to months after discontinuation of YERVOY.

In addition, about this nivolumab trials, it says here: _http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/06/additonal-info-on-mdx-1106-or-bms.html:

On May 20th I blogged my on take on the abstract of an article talking about the BMS version of anti-PD1. The article was finally published on June 2, 2012 in the New England Journal of Medicine...Safety, Activity, and Immune Correlates of Anti-Pd1 Antibody in Cancer. Written by the same cast of characters already noted.

Patients with non-small-cell lung cancer, melanoma, and renal-cell cancer demonstrated some response. Patients with prostate and colon cancer did not. All these patients were very ill and "the majority of patients were heavily pretreated; 47% had received at least three prior treatment regimens." A maximum dose was not defined and researchers deemed the drug well tolerated (PER RESEARCHERS!!!!! though the dead people and those suffering with side effects may not agree!!!!!), though "15 of the 296 patients discontinued treatment owing to treatment related adverse events....As of the date of analysis, 62 patients (21%) had died; disease progression was the most common cause of death....[though] there were three drug-related deaths (1%) due to pneumonitis..."
[...]

However, perhaps the biggest news from the study/article is the significance of the presence of PD-L1 in the tumors of patients treated.

[...]

25 of the 42 patients had tumors that were positive for PD-L1. "Of these 25 patients, 9 (36%) had an objective response. NONE of the 17 patients with PD-L1 negative tumors had an objective response.....These preliminary results must...be interpreted with caution.

[...]

So, it would seem that if you have PD-L1 on the surface of your tumor....you have a 36% chance of a response to the BMS anti-PD1 product. That number is better than the 30% chance that is showing up in most of the anti-PD1 data (limited though it is) thus far. On the flip side, if you do not have that particular ligand...it appears that it is extremely unlikely that anti-PD1 therapy will help you at all. To that end...BMS is taking this info very seriously. They are paying for all the patients at Moffitt, in my study, to have their tumors tested for that very biomarker. You do not have to agree to this testing to remain in my study, but they are requesting it of all of us, and I signed the agreement for mine to be tested Friday. For those of us in the study, it is of no consequence. We either have it or we don't. We have already been treated and we will respond or we won't. But, perhaps our data will help others. First: We need to see if this data holds. Second: If it does, perhaps it will help others make better treatment choices. If this is true, and anti-PD1 cannot help you if your tumor does not express PD-L1, there is no need for you to waste precious time, money, and risk significant side effects seeking this particular treatment. Obviously, time will tell....hopefully progress and knowledge will be attained soon.

Well, I think this man should evaluate all these points very carefully and check everything very thoroughly.

And finally, maybe he can e-mail to Mike Vrentas and ask him questions about Cellect-Budwig Protocol? The information is on cancertutor website here :
_http://www.cancertutor.com/Other/Lung_Cancer.html

 

[Carl]

Yet if you refuse chemotherapy for your child, out of knowledge and love, they'll be on you in a heartbeat.

 

[pete02]

I'm sorry to hear about your friends situation Oxajil. I didn't see it mentioned but has his father stopped his sugar intake? When my mother had breast cancer she ended up having the breast removed but they still recommended chemo for her to kill what was left. I had her drastically lower her sugar intake and she only went for a couple of chemo treatments (a quarter of what they recommended) but thankfully now she is fine. I think the sugar made a big difference. She also lost some weight while doing it which made her feel better also.

As for the young one, I would say that to keep him informed is the best thing to do. Whether or not they tell him its cancer is up to them but they could also explain to him that many people do survive cancer and its not necessarily the end.

 

[luc]

Even though I cannot give any medical advice, I'd like to share the story of an elder co-worker (67 years old) who passed away about two years ago because of lung cancer.

Since he didn't have many people around, I visited him often in the hospital during his treatment and we continued to work on some projects via phone when he felt okay. He had a little son, aged 9 or 10 if I remember correctly.

So here is my observation: I think the chemotherapy made things worse for him, it actually was the beginning of the end. However, after it got really bad, there was a brief period of relief - we thought it's going well. Then came the radiation. His doctor - one of Germany's top experts in an expensive private hospital, I might add - basically said he absolutely needs the radiation therapy, "just to make sure there's nothing left". Soon, my colleague passed away. Both his ex-wife and I thought that the radiation therapy actually finished him.

I mean, he had a little son, so even if he had lived for just another two years, or even one year, that would have been so important to his son. At the time I thought that he shouldn't have received any treatment at all, since they discovered the cancer during a routine check, as far as I remember, he didn't even have any symptoms! And since these kind of treatments cost so much money, and he had great private health insurance, one begins to wonder...

What I took out of this episode was to NEVER trust one doctor alone when it comes to important decisions about treatments, regardless of his or her reputation. I would always get second and third opinions from different experts, check out alternative therapies, etc.

FWIW

 

[Oxajil]

If he is willing to try a little alternative on the side, a friend sent me this last night on IP6:

http://www.naturalnews.com/025975_IP6_cancer_treatment.html

Based on what the article says, some folks add this to more conventional treatment in attempts to rob cancer of iron. Maybe a quick iron panel would be a good thing to do.

Thanks LQB, seems that iherb.com sells IP-6. Yes, an iron panel seems like a good idea.

Hi Oxajil, I do agree with LQB that the alternative approach would be more prudent. Sorry, I couldn't find any data that would indicate something specific that would work in this case, but according to what Roberta Crawford wrote in her Iron Elephant book , p.24-25,

[...]

And, so the question that needs to be answered is: was this man given some kind of iron supplement or iron raising drug for anemia that usually associated with primary cancer treatments? If yes, he should definitely stop taking it and try to unload his iron, osit.

I'll ask him about that. Also, if ferritin levels seem to be high, I'm not sure if he would be able to donate blood. Perhaps EDTA could be a solution then.

On this, 'wonder' drug Nivolumab, I found that it is usually is given in combination with chemotherapy drugs. I got the impression that when it's used as a monotherapy, it used almost as a control group : _ http://clinicaltrials.gov/show/NCT01454102 , because it said there they evaluating it's safety and tolerability, not so much the effectiveness against cancer.

When Nivolumab was used in combination with Yervoy® (ipilimumab), there were serious immune-mediated adverse reactions link here: _http://www.fortmilltimes.com/2013/06/02/2730405/bristol-myers-squibb-announces.html

YERVOY can result in severe and fatal immune-mediated adverse reactions due to T-cell activation and proliferation. These immune-mediated reactions may involve any organ system; however, the most common severe immune-mediated adverse reactions are enterocolitis, hepatitis, dermatitis (including toxic epidermal necrolysis), neuropathy, and endocrinopathy. The majority of these immune-mediated reactions initially manifested during treatment; however, a minority occurred weeks to months after discontinuation of YERVOY.

In addition, about this nivolumab trials, it says here: _http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2012/06/additonal-info-on-mdx-1106-or-bms.html:

[...]

So, it would seem that if you have PD-L1 on the surface of your tumor....you have a 36% chance of a response to the BMS anti-PD1 product. That number is better than the 30% chance that is showing up in most of the anti-PD1 data (limited though it is) thus far. On the flip side, if you do not have that particular ligand...it appears that it is extremely unlikely that anti-PD1 therapy will help you at all. To that end...BMS is taking this info very seriously. They are paying for all the patients at Moffitt, in my study, to have their tumors tested for that very biomarker. You do not have to agree to this testing to remain in my study, but they are requesting it of all of us, and I signed the agreement for mine to be tested Friday. For those of us in the study, it is of no consequence. We either have it or we don't. We have already been treated and we will respond or we won't. But, perhaps our data will help others. First: We need to see if this data holds. Second: If it does, perhaps it will help others make better treatment choices. If this is true, and anti-PD1 cannot help you if your tumor does not express PD-L1, there is no need for you to waste precious time, money, and risk significant side effects seeking this particular treatment. Obviously, time will tell....hopefully progress and knowledge will be attained soon.

Well, I think this man should evaluate all these points very carefully and check everything very thoroughly.

So it seems that if he would go for that new drug, the doctors should atleast check whether he has the ligand PD-L1... Reading about those side-effects, and the small effect it has on the tumor, I'm getting a bit weary about it.

And finally, maybe he can e-mail to Mike Vrentas and ask him questions about Cellect-Budwig Protocol? The information is on cancertutor website here :
_http://www.cancertutor.com/Other/Lung_Cancer.html

Interesting website. However I'm not sure they would opt for alternative treatments. But will let him read this if he wants to.

I'm sorry to hear about your friends situation Oxajil. I didn't see it mentioned but has his father stopped his sugar intake? When my mother had breast cancer she ended up having the breast removed but they still recommended chemo for her to kill what was left. I had her drastically lower her sugar intake and she only went for a couple of chemo treatments (a quarter of what they recommended) but thankfully now she is fine. I think the sugar made a big difference. She also lost some weight while doing it which made her feel better also.

As for the young one, I would say that to keep him informed is the best thing to do. Whether or not they tell him its cancer is up to them but they could also explain to him that many people do survive cancer and its not necessarily the end.

Thanks Pete for the tip. Since sugar feeds cancer cells, it makes sense. And yea about his little brother, I spoke to him about it, and he also thinks that for now it may be better if he doesn't say it's cancer. Last year, a mother of one of the boy's friends passed away because of cancer, and he got really sad because of that. So maybe it is better not to mention this, atleast for now.

What I took out of this episode was to NEVER trust one doctor alone when it comes to important decisions about treatments, regardless of his or her reputation. I would always get second and third opinions from different experts, check out alternative therapies, etc.

Thank you for sharing, luc. Asking for a second opinion does seem to be more of a safer option, and of course checking out alternative therapies. In any case, I will show him all of this, so he can decide what he'd like to do/advise his father. Thanks LQB, Olesya, Pete, and luc for your input, and for the links and quotes! They are very helpful, and I will forward this to him.

 

[Kaigen]

This thread reminded me of the article on Sott.net from February.

http://de.sott.net/article/10272-Der-Fall-Dr-Burzynski-und-der-Krieg-der-Krebsindustrie-gegen-alternative-Krebstherapien

Best wishes to the family!

 

[Olesya]

Hi, Oxajil, in Alpha Lipoic Acid thread http://cassiopaea.org/forum/index.php/topic,12791.0.html low dose naltrexone protocol was mentioned http://www.ldners.org/index.htm by Incognito:

LDN treatment has helped over 50,000 people with Multiple Sclerosis, Rheumatoid Arthritis, Crohn’s Disease, other autoimmune disorders, Cancer and HIV...

Project LDN: Funding Clinical Trials is the conference theme this year and represents a call to action for all those interested in seeing LDN treatment advance as a mainstream protocol. The current agenda now includes presentations by Dr. Burt Berkson, Pharmacist Skip Lenz, and author Mary Boyle Bradley.

The off-label protocol referred to as Low Dose Naltrexone (LDN) modulates the immune system and promotes healing. Relying on clinical trial results and interviews with the leading LDN researchers worldwide, we describe the history of LDN and explain its biochemical and molecular effects. In clinical trials, LDN has been shown to halt disease progression in Crohn’s disease and certain cancers, including pancreatic cancer, and to reduce symptoms in multiple sclerosis (MS) and autism. Ongoing trials are evaluating LDN in fibromyalgia and HIV/AIDS. Anecdotally, LDN has been shown to improve almost every autoimmune and neurodegenerative condition, including Parkinson’s disease and amyotrophic lateral sclerosis (ALS).

Well, to good to be true? Maybe.

A possible effectiveness of LDN with ALA, specifically, for the treatment of lung cancer was mentioned by JohnPaul here http://cassiopaea.org/forum/index.php/topic,18157.msg168330.html#msg168330, but unfortunately no follow up. He wrote:

August 08 my wife was diagnosed with NSCLC lung cancer stage 4. A death sentence and given 2 to 6 months to live. I got on the net to find something that just might help and found LDN Low Dose Naltrexone and Alpha Lipoic Acid. The combination is said to be great. Well December 08 our Oncologist said no more Chemo and sent us on our way to die. The next day I started on LDN to see if it had any side effects and the following day my wife started on it and a week later I decided to start keeping track of people who use LDN and set up the site www.ldndatabase.com

June 2009 we started taking ALA after a chat with Dr Berkson we decided 1200mg a day was the target. Its now 22 months later and most of my wife's cancer is gone. We have a scan in a few days, the first in 6 months and I am very hopefull that the last of the 2 tumors of the original 5 are gone.

Here _http://www.lowdosenaltrexone.org/ldn_and_cancer.htm is stated that, according to Dr. Bihari, one of the cancer that apparently responds to NDL is Lung Cancer (Non-Small Cell) (18 cases in apparent remission).

The successful LDN-only group includes five breast cancer patients, one patient who had widespread metastatic renal cell carcinoma, three with Hodgkin's disease and six with non-Hodgkin's lymphoma. Other such cases, some now on LDN for as long as four years, include a score of patients with non-small cell lung cancer, as well as patients with ovarian cancer, uterine cancer, pancreatic cancer (treated early), untreated prostate cancer, colon cancer, malignant melanoma, throat cancer, primary liver cancer, chronic lymphocytic leukemia, multiple myeloma and some others.

And then, here _http://www.lowdosenaltrexone.org/ldn_latest_news.htm I found this:

As of May 2001:

Dr. Bihari has now been contacted by the Rand Corporation, which is under contract with the National Cancer Institute. It is Rand's intention to come to Bihari's office in the near future and to spend the weeks necessary in order to help locate and collect the many old pathology specimens and past radiology studies on selected patients. These are the patients with cancer who have benefited from LDN and who have agreed to have their stories presented to the NCI by Dr.Bihari. Items needed include all original pathology slides as well as the actual MRI's, CT scans, X-rays, and other necessary evidence which now reside at a variety of far-flung hospitals and physicians' offices.

That's just stopped me completely. I don't know what to think of it. Maybe, someone on this Forum knows more about it. My apologies for the confusion.

Please send my best wishes to your friend and his family.

 

[Oxajil]

This thread reminded me of the article on Sott.net from February.

http://de.sott.net/article/10272-Der-Fall-Dr-Burzynski-und-der-Krieg-der-Krebsindustrie-gegen-alternative-Krebstherapien

Best wishes to the family!

Hi Kaigen, unfortunately my German is not that good :) But thank you for posting it, as it may help German readers who may be going through the same problem.

Oleysa, thank you for looking into this further, that is very interesting information. Will pass it on :)

 

[Olesya]

You're welcome, Oxajil :)