Integrative Medicine or Alternative Therapies

[LovingWife]

My husband has just been diagnosed with Stage 4 NSCLC Adenocarcinoma, there is spread to his lymph nodes in the chest and lymph nodes in his abdomen. He is 31, non-smoker and overall healthy guy. 

I wanted to see if anyone has tried alternative therapies or has integrative medicine as part of their cancer treatment. Such as acupuncture, Pulsed Electromagnetic Field Therapy (PEMF), photobiomodulation, or controlled oxidative stress therapies?

These are some things we are doing as part of his healing journey:

My husband has a naturopath we met with and it’s been quite helpful in terms of changing his diet, how to consume the most protein and supplements he can take. I would be happy to share what they recommended.

He is currently on Carboplatin + Pemetrexed + Keytruda. 4 cycles every 21 days, just had his first cycle on 5/15. For his supplements, he’s taking Folic Acid and Turkey tail extract. 

He is also taking Curcumin, Omega 3, Wheat Grass and L-Glutamine. We also made a paste of black seeds and honey, 1 tablespoon a day for any inflammation. 

We have switched to an all organic anti-inflammatory diet with minimal sugar and almost no processed foods at all. 

He’s been drinking a lot of herbal teas specifically sour sop leaves tea and we also found a Chinese ancient herbal doctor who has put together a concoction of herbs for him. 

Topically, he’s been applying a castor oil pack and CBD oil to help with any pain management.

[LilyMir]

Hi, sorry to hear about your husband. Herbal teas and supplements may interact with cancer treatment drugs including reducing their efficacy.  Highly recommend you clear every single one with your husband's oncology team before starting. Restricted diet may lead to some nutritional deficiency so ensure a healthy and varied diet whenever tolerated.

Have heard of intermittent fasting possibly being helpful for cancer but not just no sugar diet; we had a discussion on this issue recently on this forum. I don't think this is something doctors believe in.

[Karen_L]

Welcome to this wonderful support team. You and your husband are hitting this stupid cancer with everything you’ve got! With the specific treatment regimen you’ve mentioned, I’m assuming they’ve done biomarker testing with tissue samples, or at least a blood biopsy? 

I echo Lily’s cautions. Curcumin, for example, is a great anti-inflammatory but interferes with the efficacy of TKIs. A friend of mine who’s lived with Stage 4 for 16 years used to make a horrible looking concoction with turkey tail and curcumin. He’s ditched the curcumin, not sure about the turkey tail. At my cancer center, I was instructed to use L-glutamine during chemo & radiation. People in my local support group talk about vitamin C infusions, which got too costly for them to continue. I think we all do what we think is best, but there’s a lot of misinformation out there. Here’s my contribution to the recent discussion we had about sugar: 

Quote

…I find Cancer  Research UK to have comprehensive articles. This piece on sugar gets into some interesting nuances about sugar and cancer. Most interesting is the video that appears part of the way down the page, called "Ten Persistent Myths About Cancer, Debunked." 

Have your oncologist and ND had a conversation? 

BTW, @LilyMir, FWIW, I was just in a webinar yesterday where one of the hotshot EGFR researchers (Dr. Janne) said there is no evidence to support intermittent fasting. 

@LovingWife, please keep us posted about what you learn. Best of luck to you and your beloved. 
 

Karen

[LovingWife]

@Karen_L and @LilyMir

 

Thank you both. We got everything cleared with his oncology and integrative medicine team. We were actually taking Turkey tail extract but his Naturopathic Dr provided a Canadian brand that is more pure. She said for his current Turkey tail helps the chemo/immuno treatment.

She also mentioned she couldn’t find any study on Curcumin interacting with his meds..  “ No good evidence for interaction, small clinical evidence indicating benefit.”

It’s hard to tell what works anymore with all the theories on Google. I’ve heard of the vitamin C but we were told not to take an excessive amount. PEMF Therapies have some studies on it working for brain tumors and some on breast cancer. But I couldn’t find anything on lung cancer.

[LilyMir]

2 minutes ago, Karen_L said:

BTW, @LilyMir, FWIW, I was just in a webinar yesterday where one of the hotshot EGFR researchers (Dr. Janne) said there is no evidence to support intermittent fasting. 

Hi Karen, yes that anonymous patient asking the question was me 😆 . I have read some small studies observing benefit, and the premise makes some sense, but I am not sure fasting is a solution that is practical in any case (nor of interest to be studied by big Pharma!).

[JHP]

Quote

It’s hard to tell what works anymore with all the theories on Google.

I'll chime in. Trusting random theories without any scientific basis or without understanding fully what the unknown is is dangerous. There will never be perfect, fully comprehensive data to work with. For example is butter good or bad. They say dousing cell lines in bleach will kill it but also humans, so read cell line data warily. I think the best anyone can do is to understand the science and studies available and base their decisions on what level of evidence they're comfortable with, because obviously, the doctor's bar of evidence is required to be different. As you may have already seen from googling, there will be evidence for in vivo, in vitro, observational studies, retrospective studies, etc. Obviously, the gold standard is double blind as much as ethically possible in design and this is what the doctor recommends. Sometimes they find out that animal studies don't translate well to human studies, or you come across a successful animal study with promising results and no evidence of harm BUT for whatever reason, funding or whatnot, there's no human study. That's a decision people have to make.

With these adjuvants, more open-minded oncologists may use the words "there is insufficient evidence at the moment" for example, when I asked about the findings report by a major center about the role of allergy medications being beneficial. The oncologist said they saw that report too. The evidence for this is on the level of a theory + retrospective study. But science doesn't understand the mechanism enough enough yet, and there are some people who this won't help. Is it even effective? What if it causes harm in some people under some circumstances? Is it just correlation?

Same with fasting. The oncologist said they would not recommend it. It has shown good results in mice as an adjuvant in the context of chemo/radiation treatments, and there is a human study showing some benefits. Does random 12-14-16 hr IF have benefits outside of the chemo or radiation protective benefits, who knows? What kinds of fasting (there are several kinds), to what extent are its benefits, what percentage of people can it benefit, can it cause harm (paper mentioned fasting before but not after radiation otherwise potentially harmful), these are all unknown. People who don't do this can do fine too. Doctors probably wouldn't recommend it. Given this information, whether one wants to try or not is a personal decision. I don't know in what context a doctor would mention "no evidence".   

For mushrooms which used to be standard in Asia but "alternative" here until more studies came out...Before those studies came out, people had to decide if it has been used for many years (which precludes harm for most people), and it seems to provide some benefit, should they take it? Well, studies have come out and people taking it do experience some immune benefits and slightly increased LE. Science thinks this benefit comes from immuno-modulation. Some TCM plants has been disproven by modern science, some have been proven or has potential and continues to be studied.

A lot of the theories would be study shows _e.g. antioxidants/plant/greentea__ are beneficial, but it's discovered that taking them in supplement form overall or in conjunction with standard treatment is harmful. While reading, there was a case study of a man in Korea Stage 4 who cured himself via IV ginsenosides but that hasn't been replicable so that's why it remains one case study. On the other hand, one of the TCM adjuvant recs for lung cancer is sanghuang which is fairly unheard of here. Supposedly, it calms lung inflammation and was used to treat SARS patients.

There are people who follow such and such protocols but these are unstudied off-label uses. 

[Karen_L]

The Curcumin doesn’t interact with everything. It interacts with at least one specific targeted therapy, which is osimertinib; there is peer-reviewed stuff that indicates contraindication.  

It sounds like you have a thorough team that works together effectively. I appreciate hearing about the combination of treatment paths you are following, especially since it’s all been given the OK by your care team. Acupuncture is often mentioned by LC people I know. 

Your mention of PEMF sent me looking. My first hit (“PEMF therapy has been reported to produce anti-inflammatory and bone-healing effects by decreasing the production of free radicals and stimulating osteoblasts.“ From: Biologics in Orthopaedic Surgery, 2019) sparked my interest. Without doing much more research, my guess is that this therapy would be especially significant for someone with bone mets. Is there a particular reason you’re seeking out info about it, and about the other therapies? 

FWIW, the only stuff I rely on is peer-reviewed literature, or stuff on official sites like hospitals, cancer centers, research centers, etc. People’s interpretation of research studies may be tricky. Unless they have a research background, they tend to draw broad brushstroke conclusions from very small studies, or to misinterpret findings. So, take care with what you read and give credence to. 

Finally, may I add one caution? Dealing with lung cancer is a lot like doing a marathon— or an ultra-endurance event. I hope you’ll give your husband’s body a chance to absorb and adjust to a treatment before adding another one. I believe you will need the respite of a measured pace as well. 

Thanks for sharing all the information! I look forward to hearing from others. 

 

 

 

[Karen_L]

35 minutes ago, LilyMir said:

yes that anonymous patient asking the question was me 

Hahaha. I was thinking I wish I’d posted about the webinar so that other folks (especially you) could watch. I shoulda known you’d find it….

[LilyMir]

I posted a note on our forum about the event a while back. The organizers said they will post the recording so that will good for anyone interested who missed it.

[Tom Galli]

LvingWife,

I'm glad you cleared the naturopath's prescriptions with the oncologist. That is essential.

There is a lot of discussion about diet, what to eat, when to eat, and even if not to eat in the cancer community. When I was receiving chemotherapy, I recall my oncologist simplifying cancer nutrition by explaining I had an "eating in order". I had to have calories in order to replace cells that were being killed by chemotherapy. 

Stay the course.

Tom

[LovingWife]

15 hours ago, Karen_L said:

I’m assuming they’ve done biomarker testing with tissue samples, or at least a blood biopsy

They did do biomarker testing. But to be honest, we didn’t know what kinds of questions to ask. We don’t even know what of it means. Any recommendations? 
Are there any questions we can ask when he goes in for his second chemo/immuno treatment? How can we ensure we are getting the best treatment option? 

[LilyMir]

Do you know which mutation(s), if any, they found? Are any actionable mutations present (meaning mutations for which a targeted therapy currently exists)? How much PD-L1 was expressed (which is usually a predictor how well immunotherapy may work).

[LovingWife]

1 hour ago, LilyMir said:

Do you know which mutation(s), if any, they found? Are any actionable mutations present (meaning mutations for which a targeted therapy currently exists)? How much PD-L1 was expressed (which is usually a predictor how well immunotherapy may work).

@LilyMir

His PDL1 score was 4.. as far as mutations he didn’t have any that she mentioned. 

Some of his biomarkers were but have no idea what this means

PDL1 IHC

ATM exon 33

FGF23 amplification 

FGF6 amplification 

KRAS amplification 

 

[RJN]

Just a few pennies from a relatively long term Keytruda patient: Please do not make any assumptions about what is harmless. For example, you mention CBD oil. While it may not exactly be harmful, my oncologists are very clear that CBD and curcumin can suppress Keytruda effects. I know there is some conflicting evidence, but the point is that Keytruda is a powerful immunotherapy and many, many supplements are contra indicated. So please make sure that the advice is coming from a health professional with a deep knowledge of this particular treatment…

I actually have a Chinese medicine doctor living across the street from me - who did my acupuncture when things were rough. She refused to supply any other treatments or supplements since immunotherapy is so unproven in terms of interactions.

[LovingWife]

14 minutes ago, RJN said:

So please make sure that the advice is coming from a health professional with a deep knowledge of this particular treatment

@RJN thank you so much for your advice. I’ve been extra paranoid so definitely triple checking everything with the doctors. We’ve been using CBD oil topically but I’ll definitely double check again. 
We have been blessed to also have integrative medicine and my husbands Naturopath has reviewed/approved all supplements and teas. We are only getting ancient Chinese herbs for teas.

[BridgetO]

Hello! You've gotten some good advice from folks on here about caution. I've had 3 primary cancers. My most recent was a stage 1 NSCLC, which needed only surgery (lobectomy) and ongoing surveillance. My second one was a rare and aggressive gynecologic cancer, stage 3, for which I had a huge surgery, concurrent radiation and chemo and additional chemo. My first was a stage 1 breast cancer, with lumpectomy and radiation.  Beginning with my first cancer diagnosis and then again with the other two, I went to a local clinic that offered complementary therapies. I had acupuncture two or three times a week, supplements and Chinese herbs, and shiatsu massage twice a month. The treatment was directed by a naturopath, who knew a lot about cancer and conventional treatment and who was very supportive ov conventional treatment. I ran all my supplements and herbs past either my doctor, or when I was having chemo, through the oncology pharmacist.  The onc pharmacist advised against one supplement because it contained a raw animal ingredient, not a good idea when immunity would be impaired by chemo, and my thoracic surgeon advised against one Chinese pill because he didn't know what was in it. In both cases I followed advice.

I found acupuncture helpful with side effects of chemo, especially nausea, and also great at combating anxiety.  The herbs and supplements? I'm not sure whether they helped or not, but today, 15 years after my first cancer, I've had no recurrences and I'm NED on all 3 cancers.  With my gyn cancer especially, which had a "dismal prognosis"  this is remarkable.  I really didn't expect to live so long, (12 years after that Dx)  much less be NED all this time.   So I'd use these complementary therapies again.

Everybody's different in their comfort level with things that are "unproven" in a Western scientific sense and I think each of us needs to make our own decisions about this stuff. I do have some things to suggest for people who want to try complementary therapies of any kind

1.  Think of them as "complementary" to your conventional medical treatment, not  as "alternative". For example don't abandon your chemo in favor of "green drinks".

2.  Avoid anything advertised as a sure cure. There really isn't any. I  like to think in terms of what might make me feel better or might be helpful.

3. Beware of anything that seems too far outor is illegal. I know that "too far out"  is  not an objective criteria, but do use your common sense.

4. Be careful of spending TOO much money on these therapies, Again this is an individual thing. But don't use the rent money.

5. About diet-- Healthy food is great, but some treatment regimens, like chemo or radiation, can make eating a problem (some foodsmay taste/smell awful, problems swallowing, nausea, diarrhea, etc, etc). In that case getting enough calories and fluid needs to be the priority, even if it means not following what might otherwise be your " ideal "diet. If all you can eat is ice cream, do it.  If it's long term, see a dietician.

So, here's more of my history and opinion than you probably want! Best wishes to your husband, and to you, too. Be sure you take care of yourself, too.

 

[Kamoto]

He just started.  I sure do hope that when he hits his bottom, you don't stick to this no sugar nothing good diet.  i wanted to be able to taste.  i was getting only 400 calories a day, and a box of sweet tarts may have helped me stay alive.  sometimes my only tolerable food was a McDonalds Filet o Fish.  he will need anything he can tolerate.  Being naturopathic while battling chemo radiation sounds good, but staying alive is more important.  Tread lightly down this road. 

[RJN]

@LovingWife Out of the mutations you list, I know that some FGR and some KRAS mutations have targeted therapies that may be possible, so definitely worth asking about.

It sounds like they are going all out on the chemo/immuno combo though, so hopefully he won’t need it for now, but good go know these things for your back pocket. Personally, I have got my main cancer and lymph nodes under control for now, but already have 3 separate action plans/lines on the  table in case of recurrence. Helps a lot mentally, I find. 
all the best for it, Rikke

[LovingWife]

On 5/28/2023 at 12:19 AM, RJN said:

FGR and some KRAS mutations have targeted therapies that may be possible, so definitely worth asking about.

@RJN thank you, I’ll definitely bring this up next week with his oncologist.

[LovingWife]

On 5/26/2023 at 5:33 PM, Kamoto said:

He just started.  I sure do hope that when he hits his bottom, you don't stick to this no sugar nothing good diet.  i wanted to be able to taste.  i was getting only 400 calories a day, and a box of sweet tarts may have helped me stay alive.  sometimes my only tolerable food was a McDonalds Filet o Fish.  he will need anything he can tolerate.  Being naturopathic while battling chemo radiation sounds good, but staying alive is more important.  Tread lightly down this road. 

@Kamoto thank you for the feedback. He’s definitely getting natural sugars from fruits, agave syrup, honey and maple syrup. He’s just making a life long commitment to eat better and live a long healthy life as an active 30 year old.
But we will definitely try to stay clear of over processed foods and refined sugars. It’s been recommended by several oncologists that are in the family as well as his current naturopath.