I have just read a long article addressing possible concrete responses to Covid-19 by a doc specializing in integrative oncology. It was written for lay people (thank goodness!). Is there anyone in this group who sees an integrative oncologist for CLL? If there is, I would be interested in hearing from you.
(I will post the link to the article only if encouraged to do so by administrators, because there are detailed suggestions and links to a specific hospital program are mentioned in it. Please note that I have absolutely no connection to the doc, his associates or the hospital mentioned. The curious or interested can send me a private message.)
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Please send me the link to the article. Thanks! I was seeing an integrative oncology doctor 2 years ago, for the CLL and a second cancer. It was a very useful experience and expanded my knowledge in ways I am grateful for today.
My top search hit for "COVID-19 Integrative Oncology" returned the following reference to a preprint paper from 20th March, co-written by 24 authors, including one well recognised Australian CLL specialist and endorsed by 12 stakeholder organisations in Australia and New Zealand.
Managing haematology and oncology patients during the COVID-19 pandemic: interim consensus guidance
Thank you for your kind response. It is very informative but doesn’t address integrative oncology. Am I to understand that you do not hold any stock in it and its supportive approaches?
I haven't yet seen your reference, I just shared what I found when searching for what you may have found. In theory, Integrative Oncology sounds ideal. Practically, from my life's experience which includes 11 years with my quality of life significantly impacted by CLL, not so much. The problems are:
CLL is recognised as an orphan cancer in many countries, because it is relatively rare.
It's also a blood cancer, best understood by haematologists, not oncologists, as the latter develop and maintain their expertise in common solid tumours that metastacise, not cancerous lymphocytes that are distributed throughout our body.
CLL has gone through huge treatment changes in the last five years. Seeing any specialist that can't find the time to keep up with the fast evolving management and treatment best practices, will likely result in a sub-optimal outcome.
Assuming that you are able to find an integrative oncologist who specialises in blood cancers, you hit the next big problem - the vast number of blood cancers of which CLL is just one of the many Non-Hodgkins Lymphomas. Integrative oncology approaches by someone not aware of the differences in how CLL can respond compared to other blood cancers, can do more harm than good by prescribing treatments that can accelerate CLL growth. I've seen quite a few instances of that being done over the years.
Finally you have the challenge of what someone who calls themselves an Integrative Oncologist actually does. Do they provide you with a holistic approach, incorporating the best evidence based approach to managing and treating your CLL, while taking into account mental and social factors, or will it be some form of alternate therapy, where there is questionable evidence regarding its efficacy?
The blog provides good generic advice, which is unfortunately not CLL specific. Also as the blog notes "It is important to mention that the recommendations we are currently able to make are not based on clinical trial experience with COVID-19, but rather on extrapolations from studies of pandemic influenza, colds (some of which are caused by different types of coronavirus), viral or bacterial pneumonia and similar conditions." So I see it more of a marketing exercise - you would have to book an appointment to be provided with CLL specific recommendations. With only two oncologist-haematologists in the centre, I consider my reservations above apply.
Good points Neil. I'm always on a quest to keep myself as well as possible while in treatment. I've been reading an interesting book on diet and cancer, but it had occured to me that it's mostly geared towards helping to control solid tumors.
Unfortunately, the way CLL adversely impacts our immune system and sets us up for a higher risk of secondary cancers, does make it nigh impossible in my opinion to cure it by dietary changes as I explain here:
That said, lifestyle factors including diet do increase our risk of (in our case) secondary cancers, so it does make sense to adopt a healthier lifestyle.
Yes. Lifestyle choices CAN make a significant contribution to health and wellness. Unfortunately, confounding factors make research difficult—especially on specific rarer diseases .... Still, if particular ways of eating and other approaches fall within what is considered as broadly acceptable as part of a “healthy lifestyle”, they are worthwhile considering AND discussing with one’s CLL doc/team.
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COVID-19 Vaccinations Opinion from Dr. R. Furman MD (cross posted from CLLSLL@groups.io with his permission )
Exercisedduring and after Cancer Treatment,
Latest COVID-19 guide for immunocompromised blood cancer patients from the International COVID-19 Blood Cancer Coalition (ICBCC)
Eat fish to help protect yourself from COVID-19?
Looking for an integrative medicine oncologist in the U.S.
