Looking for an integrative medicine oncologist in the U.S.

[montieth]

I would like to find an Integrative Medicine Oncologist for consultation for Cll in the U. S, The ones I have found so far are not in my network for insurance. Looking for one that uses evidence based testing and techniques. There is a book called "Life Over Cancer" by Keith Block that describes some of the ways to use lifestyle changes, nutrition and supplements to slow down cancer growth.

[Katie-LMHC-Artist]

I worked with the Block Center before I started treatment. I did pay out of pocket. I also bought and tried many diets before treatment. I finally got to a place of acceptance and intuitively knew I had all the information I needed which was to eat more plant based foods, make sure I consumed healthy proteins, exercise, surround myself with great supports, take a breath, reduce stress, and find something everyday to laugh about!!! Honestly, my best friend and I can spend hours together laughing at things. That has been helpful in my own journey. I wish you well!👩‍🦳

[montieth in reply to Katie-LMHC-Artist]

I have been considering the block center because they seem to be very thorough. I would also have to pay out of pocket since they are not in network for insurance. I would like to find a center very similar to them that does the hair analysis and recommends diet and supplements that are specific and covered by insurance.

[Katie-LMHC-Artist in reply to montieth]

I think if it is important to you then I would support your decision to pursue integrative oncology. I think with my journey I came to a point to tap into my intuition. I was in W&W for 12 years. In the beginning, I thought if I found the right diet, the right supplements, the right energy workers, and so forth then I could stay in W&W forever and never need treatment. It was a noble path but time-consuming. What has worked for me is to live my life and stay in the present. If I want an ice cream then I go out and get one. I came across this printout the other day while getting ready to move in a few months and continue to find it inspirational. It was written in 1979 (45 years ago). I tend to keep sayings, poems, and inspirational writings.

------------------------------------------------------------------------------------------------------------

Erma Bombeck-Author

“If I had my life to live over...

Someone asked me the other day if I had my life to live over would I change anything?

My answer was no, but then I thought about it and changed my mind.

If I had my life to live over again I would have waxed less and listened more.

Instead of wishing away nine months of pregnancy and complaining about the shadow over my feet, I'd have cherished every minute of it and realized that the wonderment growing inside me was to be my only chance in life to assist God in a miracle.

I would never have insisted the car windows be rolled up on a summer day because my hair had just been teased and sprayed.

I would have invited friends over to dinner even if the carpet was stained and the sofa faded.

I would have eaten popcorn in the "good" living room and worried less about the dirt when you lit the fireplace.

I would have taken the time to listen to my grandfather ramble about his youth.

I would have burnt the pink candle that was sculptured like a rose before it melted while being stored.

I would have sat cross-legged on the lawn with my children and never worried about grass stains.

I would have cried and laughed less while watching television ... and more while watching real life.

I would have shared more of the responsibility carried by my husband which I took for granted.

I would have eaten less cottage cheese and more ice cream.

I would have gone to bed when I was sick, instead of pretending the Earth would go into a holding pattern if I weren't there for a day.

I would never have bought ANYTHING just because it was practical/wouldn't show soil/ guaranteed to last a lifetime.

When my child kissed me impetuously, I would never have said, "Later. Now, go get washed up for dinner."

There would have been more I love you's ... more I'm sorry's... more I'm listening... but mostly, given another shot at life, I would seize every minute of it ... look at it, and see it ... try it on ... live it ... exhaust it ... and never give that minute back until there was nothing left of it.”

― Erma Bombeck, Eat Less Cottage Cheese And More Ice Cream Thoughts On Life From Erma Bombeck

[montieth in reply to Katie-LMHC-Artist]

Hi Katie, I like the writing by Erma Bombeck also and have read it before. Just wondering did you feel the testing and supplements you received from the Block center were helpful and worth the money? I think it is possible for me to go with the protocols of a place like the Block Center AND live by the words of Erma Bommeck. If I can delay treatment for even a few years it will be worth it and I feel obligated to do everything I can at this stage of the disease.

[Katie-LMHC-Artist in reply to montieth]

I understand your mindset! The Block Center supplements are on the expensive side. They will tell you that they are high grade and control how they are made. The supplements are part of their business. I am sure there are other places that have high grade supplements a little cheaper. The one flag I had was when Dr Block was telling me he was part of a separate business that makes an immune tincture in Mexico and believed if I purchased the tincture it would help protect me against Covid. I decided that I had to go with science based vaccines for Covid protection and realized I could put together my own plan of action to stay healthy . As I said before, I just get up everyday, try and eat healthy, work on stress reduction, walk, connect to supports, read books and materials that are inspiring, and try and find humor in life to laugh at. Hope my feedback was helpful!👩‍🦳 Take care!

[AussieNeil Partner Administrator in reply to montieth]

Based on my observations of clinicians recommending supplements, etc., only available through their clinic, I would be very suspicious of the quality of medical advice you are being provided. Having clear separation between prescribing clinician and provider, typically doctor and independent pharmacist, gives you access to another highly trained professional who should be able to advise you on potential drug interactions, as well as suggest a range of similar products to choose from. You also avoid the potential conflict of interest by the clinician, in selling you a marked up product for which there is no competition.

Neil

[Vlaminck in reply to AussieNeil]

that always makes me suspicious too -- if they are selling product. I'm finding that often with chiropractors here. They always want to sell products. Never run into that with a doctor (what are supplements? is more likely their approach). Did have a doctor way back for my lyme disease who was from Cuba who prescribed many vitamins and a few supplements plus a compound -- made elsewhere. Sold nothing. Valued his advice.

[Bobby9toes]

You don’t say what state you are in. Oregon Health and Science University (OHSU) has the best cancer center in the state. I would highly recommend you look into their doctors. I have SLL and my hematologist/oncologist is from there.

[neurodervish in reply to Bobby9toes]

Bobby, I wonder if you know about Dr Stephen Spurgeon at OHSU? He's the only CLL/SLL specialist there. I noticed, in your comment from 17 days ago healthunlocked.com/cllsuppo... , that you're seeing an onc who's on maternity leave, so that can't be Dr Spurgeon. Or are you seeing the nurse practitioner who works with him (Pamela St Clair, who is amazing)

[Bobby9toes in reply to neurodervish]

While she was on leave, I saw a different oncologist from out of state who was filling in for her. OHSU has opened up several cancer treatment centers in other Legacy hospitals. I see Dr. Banerjee at Mt Hood Medical Center. She is a hematologist as well as an oncologist. I have SLL, not CLL.

[neurodervish in reply to Bobby9toes]

I have SLL too. They're basically the same disease, just a slightly different presentation of where the lymphocytes congregate in the body. But the treatments are the same. In your post from 18 days ago ( healthunlocked.com/cllsuppo... ), you mentioned that a lymph node was surgically removed. I was concerned for you, because that is not a normal treatment protocol for SLL/CLL. That's the kind of treatment a regular oncologist who just remove tumors follows (because, as the old saying goes, "when you're a hammer, the whole world looks like a nail"). CLL specialists know that we have drugs to melt those nodes, so surgical removal really is not the standard protocol.

I could see any number of local hematologists/oncologists, but I drive all the way to Portland to see Dr Spurgeon because he very well may save my life.

[Bobby9toes in reply to neurodervish]

The node was removed to send out for testing in order to determine what was going on. I am aware the treatment for both is essentially the same. My lymphoma is only in my lymph nodes and not in my blood.

[neurodervish in reply to Bobby9toes]

Thank you for clarifying. If you ever want to read more about the CLL/SLL relationship, this link has a pretty good explanation. patientpower.info/chronic-l...

Wishing you the best

[Bobby9toes in reply to neurodervish]

Thank you. I will definitely do that. By the way, my name is Jan. My husband had to have his big toe removed years ago, so that’s why I use Bobby9toes. Silly, I know. He passed away 6 years ago.

[AussieNeil Partner Administrator]

Montieth, you are wise to look for an Integrative Medicine Oncologist "that uses evidence based testing and techniques", because the integrative/holistic/complementary/unconventional/alternative, etc., health industry offers many products and services that might make you feel better, but when you have cancer, they mostly do little to nothing to slow progression and can even exacerbate it. My replies to the following post are specific to what members have asked about claimed interventions that purport to help with CLL. healthunlocked.com/cllsuppo...

The best evidence for a lifestyle change that can improve your quantity and quality of life when you have CLL, is keeping physically active, though undoubtedly, many of us can improve our diets healthunlocked.com/cllsuppo...

I'd also add that the post about Navigating Complementary Cancer Treatments was written 7 years ago, at the beginning of the revolution into targeted therapy treatments for CLL. We now have unprecedented access, particularly in the USA, to proven non-chemo treatments that many are able to take with little to problems with side effects. Members who are doing well on their treatment, have little reason to post!

Neil

[montieth]

That is interesting that you say there are little to no side effects from the new treatments. Some of the these new treatments are effective and some are effective for a time until there is a relapse. There are studies now that show lifestyle and diet make a huge difference in all chronic illness including cancer. There are also evidence based studies that have shown effectiveness for CLL such as olive oil, green tea and feverfew to name a few. These are evidence based studies and since they don't have huge funding from pharmeceutical companies they are often smaller studies. That does not mean they are without merit.

[AussieNeil Partner Administrator in reply to montieth]

The chronic nature of CLL does allow time for us to look into opportunities that may enable us to extend our time in watch and wait. We do, however, need to appreciate that CLL remains incurable, even with the latest, highly selective and effective targeted therapies. CLL treatment guidelines have been honed over the last 30 decades to allow for the commonly experienced impact of even targeted therapies on our bone marrow production. If our platelets drop too low, we become at risk of fatal internal bleeds; too low haemoglobin and we risk organ damage, insufficient white blood cells put us at increased risk of infection. When we get to the point where the world's best CLL researchers recommend starting treatment, that's the time when we need to go with a proven therapy. Encouragingly, there's been an explosion of research into targeted therapies in the last 10 years healthunlocked.com/cllsuppo... As you'll read in posts to this community, continuing research into combination fixed therapies is extending remission times and CLL researchers are confident of a cure being found.

With respect to olive oil, I expect you are referring to this 2022 study;

The Effect of Dietary Intervention With High-Oleocanthal and Oleacein Olive Oil in Patients With Early-Stage Chronic Lymphocytic Leukemia: A Pilot Randomized Trial

ncbi.nlm.nih.gov/pmc/articl...

"Conclusions

The complex mechanisms regarding the progression of CLL disease appear to benefit from the anticancer properties of oleocanthal and/or oleacein. Specifically, it is the first time that we were able to show that oral administration of a daily dose of 25 mg oleocanthal and oleacein through the consumption of 40 ml of EVOO could be beneficial for CLL patients, inducing the apoptosis of their cancer cells and improving the metabolism of the patients.

Further investigation of both mechanisms of negative CLL progression and effect of oleocanthal and/or oleacein, in long term dietary intervention studies with greater number of participants is necessary. In this manner, it could be possible to clarify the precise role of oleocanthal and the capacity of such dietary interventions, to increase life expectancy and to stabilize the development and progression of neoplastic blood diseases such as CLL.

The results of this pilot study should not be used as a proof of efficacy but as a proof that the study can and is worthy to be expanded to a multi-center larger trial."

MDEdge's report on the trial mdedge.com/hematology-oncol... stated

"The study findings were limited by several factors including the small sample size, short intervention time, and pilot design, the researchers said. Other limitations include the possible effect of other unmeasured properties of olive oil.

However, the results reflect previous studies showing the benefits of a Mediterranean-type diet, and they represent the first clinical trial to indicate possible beneficial effects from oleocanthal and oleacein on the progression of CLL. Therefore, the authors concluded, the study is worthy of a large, multicenter trial."

That study is fairly high quality. Unfortunately, more often studies into supplements are poor quality, such as this one on turmeric healthunlocked.com/cllsuppo...

There's extensive posting on green tea in this community (active ingredient EGCG), but the crow sourced study was done on a pharmaceutical grade green tea extract made by Mitsui Norin, which they no longer produce for oral use. Dr Neil Kay, the principal author of the phase 1 and 2 studies, subsequently warned people with CLL, not to take green tea capsules, "because we don't know what's in them". I took it for nearly 11 years, but could only manage half the recommended dose, as a higher dose began poisoning my liver (transaminitis). I did so with the full knowledge of my CLL specialist and doctors, which is how I found out my liver couldn't tolerate the dose. (See attached) The risk of transaminitis was reported in the trial reports, with one trial temporarily halted to resolve FDA concerns about transaminitis management.

The Feverfew research is with respect to Derivatisation of parthenolide to address chemoresistant chronic lymphocytic leukaemia

pubs.rsc.org/en/content/art...

As reported here: news-medical.net/news/20190...

"The researchers used both established and modified methods to prepare parthenolide derivatives by adding primary or secondary amines to the compound. The drug-like properties of these derivatives were computed and then screened for the anti-leukemic activity against the refractory MEC1 CLL cell line." (my emphasis)

The screening was done using a CLL cell line (that's unusually good) with the in vivo study using murine models, not human trials. Importantly, this is a study on the impact of a chemically modified extract from feverfew, not an investigation into whether taking the feverfew herb has any worthwhile effect.

Neil

EGCG from high doses of green tea can poison your liver. Watch for ALT and AST increases

[montieth]

I would like to find an integrative oncologist or even an oncologist that has an interest in integrative medicine. I found one in the Chicago area. So far, the ones I have found in Michigan where I live say they are Integrative Medicine doctors but they do not deal with cancer. I may have to do telehealth.

I found that Conventional doctors are also always pushing their products which are pharmeceutical drugs and tests.

[AussieNeil Partner Administrator in reply to montieth]

When you say that "Conventional doctors are also always pushing their products which are pharmeceutical drugs and tests", be aware that while there is much in conventional medicine that doesn't have an evidence basis, approved CLL treatments are evidence based. That's independently done by the FDA in the USA and similar government organisations in other countries. Gaining approval from these organisations is not easy and it can be revoked.

Case in point is what happened with one of the breakthrough targeted therapies for CLL. Eleven years ago, there was a race between idelalisib (a PI3k-delta inhibitor) and ibrutinib (a BTK inhibitor) for approval. Dr Sharman, a CLL specialist covers this in his blog post: cll-nhl.com/2013/10/the-rac...

As Dr Sharman noted, "The FDA is charged with determining if a new therapy is both, "safe" and "effective." The absolute best way to do that is perform a randomized / blinded / controlled phase III study in which half of patients are given a "standard of care" and the other half are given the experimental treatment. If patients do better on the experimental treatment the drug can be approved."

As it happened, both idelalisib and ibrutinib were FDA approved for CLL treatment, but long term monitoring by the FDA has resulted in the approved use of idelalisib being increasingly restricted, due to what the FDA considered to be a higher than acceptable risk of lung infections and the FDA looking long and hard at clinical trials for other PI3k-delta inhibitors.

Non-conventional treatments don't have this oversight and the evidence for their effectiveness isn't all that robust, or they would be better accepted.

Neil

[CycleWonder]

I am alive today because of pharmaceutical drugs and medical tests. Not everyone with CLL needs treatment but after 5 years on watch & wait after my diagnosis, if I hadn’t had treatment, I would have just faded away. When my Hg dropped below 10, my platelets below 100, I just had little energy to do anything. I was losing weight because of an enlarged spleen and swollen lymph glands.

I had exercised regularly and faithfully, eaten a healthy diet, slept 8 hours almost every night. My Vitamin D levels were normal.

And yet, my disease progressed. And if the research had not been done on treatments for CLL, my husband would be a widower now.

None of us like to have a diagnosis of cancer. And I believe that life style changes can help us. I don’t believe that exercising, eating well, and sleeping extended my time until I needed treatment. Vitamin D may have.

I would recommend finding a CLL specialist that you like that is within your network, and be open to not only life style changes, but treatments if and when you need them.

[CoachVera55]

I agree that all modalities should be tried especially in the early stages of the disease. So I cheer you on as you search for & find that Integrative Medicine Oncologist.

Improving your health by lifestyle changes at least helps you maintain some autonomy & will delay your need for treatment. I am grateful that my life was spared but I believe in quality of life over quantity. I don’t want to say I survived CLL to now have permanent heart disease, lung disease or kidney problems requiring dialysis, that’s not an acceptable trade off. I also don’t want to be tortured especially if death is inevitable.

I hated my experience with cocky doctors uninterested in what I wanted or needed but just trying to push treatment down my throat on our first meeting. Or completely ignoring my symptoms until they could see them on a CT Scan, Echocardiogram or a Pulmonary Function Test & then still not offering an adequate plan of care.

Honestly I am still traumatized because I did not feel like I was in America. I study & present my case with relevant diagnostic evidence & we decide on a plan that works for me now. I am the Captain of this ship!

My CLL Specialist again was ecstatic about my numbers 6 weeks off treatment & wanted to know why I wasn’t more excited. I said this experience has left me very pessimistic & waiting for the next shoe to drop. Only when pushed did she reluctantly admit that I may not need another treatment for a year. At that announcement I felt a weight lifted off me, I hunged & thanked her, told her how much I appreciate her & how I apologize for being difficult but that is me & I ain’t changing.

I have a philosophy I live by, the first time you do me wrong then shame on you but if I let things go out of order, after knowing better, than shame on me🙅🏽‍♀️ When you know better than you do better. Smart Patients get Smart Treatment. More like trusting patients can lose their life… I trust GOD not man🙌🏾 #GODSPEED🙏🏾