Naturopathic approach

[KHuff]

Anyone here doing non-traditional treatment for their CLL? Looking for those who are taking a more naturopathic route.

[AussieNeil Partner Administrator]

You'll find plenty of relevant reading in this post and all the enclosed references!

healthunlocked.com/cllsuppo...

Neil

[crystalsky]

I'm sorry, but discussing such things here is frowned upon. We get scolded for talking about such things. I will say however, after my husband had a heart attack brought on by most likely having been on Ibrutinib (my husband had pre-existing heart issues), we are now treating his CLL holistically. Who knows how long it will last. But, his current blood work has been normal.

His enlarged lymph nodes have not returned. He follows a very strict diet, we juice, and he takes supplements. It's hard. We follow a vegetarian, plant based diet, and many people find it unappealing. However, my husband is of the mind set, that he wants to live, and will do whatever it takes to do so. He may need treatment again down the road. That terrifies me, because he is very sensitive to pharmaceutical drugs, and conventional medicine is not personalized. It's a one size fits all unless you fight for something different.

Holistic living certainly won't kill you. It will keep your body strong. But realize, down the road you may need assistance from conventional medicine. You can be in the driver's seat in that regard though, by deciding what treatment you want to do.

My husband's CLL doctor incredulously wanted my husband him to restart Ibrutinib after he healed from his heart attack. Since my husband is in the driver's seat of his health, he said absolutely not. And here we are, ten months later, still back on watch and wait.

You decide what is best for your situation, and your health at the end of the day. Again, living holistically can only serve you well, until it doesn't.

[AussieNeil Partner Administrator in reply to crystalsky]

Crystalsky, KHuff asked if anyone here was doing non-traditional treatment and you replied once more about your husband's experiences without your post being reported, moderated or deleted. Once again this highlights how you regularly choose to misinterpret how this community works in an attempt to find fault. You know very well by now that we try to keep content evidence based, but sharing of personal experiences is encouraged - just as you have regularly shared of your husband's experiences. It's great to hear that he continues to do well.

We do ask of members that they "Please do not promote the use of alternative treatments.", per item 29 of our community guidelines: cllsupport.org.uk/cll-suppo...

Finally, you said that "conventional medicine is not personalized. It's a one size fits all unless you fight for something different." To the contrary, CLL treatments are becoming increasingly personalised as evidenced by the regular discussions in this community on what treatments work best with which prognostic markers.

Neil, on behalf of the Community admins and volunteers

[crystalsky in reply to AussieNeil]

Perhaps Neil, I should have been more specific regarding my comment of, "conventional medicine is not personalized. It's a one size fits all unless you fight for something different." What I meant was, if someone has side effects from treatment, or even if you know you are highly sensitive to drugs, doctors don't usually personalize your treatment (lower dosages, etc.), unless the patient insists. This is our experience anyway through two heart attacks (cardiology), and cancer treatment. Doctors would rather prescribe another drug to try and deal with the side effects rather than help the patient regain some quality of life.

I read here about how so many people are suffering from side effects and how these are impacting their quality of life, and I am empathetic, and get frustrated that often their doctors simply want to add another drug, rather than tackling the why of their suffering.

And, I really thought discussing personal experiences with holistic living, etc. was also taboo. Thank you for the clarification.

[AussieNeil Partner Administrator in reply to crystalsky]

Thank you for expanding and clarifying where you are coming from with regard to your personalised medicine comment. From the doctor's perspective, in addition to the risks to the patient from deviating from a proven treatment protocol, there is the very real financial risk of litigation in the event of an adverse outcome for the patient. I think you can appreciate the challenge for a doctor getting medical indemnity insurance coverage if a distraught relative engaged a lawyer in that circumstance.