Treatments

[Sharipisc]

What are some good holistic treatments instead of the oral chemotherapy?

[Cllcanada Top Poster CURE Hero]

How are you defining holistic?

Ibrutinib, idealslisib and venetoclax are all non-chemo CLL treatments... not sure how holistic they are.

Wiping out the CLL B cell population, and unfortunately most good B cells, which is the key to CLL treatment tends to run contrary to holism in my view...

~chris

[Sharipisc in reply to Cllcanada]

Exactly what you said. Non chemo therapy treatments. I am newly diagnosed and have so much to learn! Thanks.

[mariemascio in reply to Sharipisc]

I don't know if this helps much, but I started a list of drugs to try to understand which are which (I'm a biologist by training, I have to put things into categories . . . ).

This list just consists of drugs I've seen here to help me understand what people are talking about. It's not exhaustive by any means and I don't guarantee 100% accuracy but it's a start. It'd be great if someone has a better source than this they could link.

Of course, this list could change almost weekly, feels like. I hate having cancer, but I take comfort in the amazing science happening on our behalf right now.

Chemotherapy:

Fludarabine - the "F" in FCR chemotherapy or FR chemotherapy

Cyclophosphamide - the "C" in FCR chemotherapy

Bendamustine - the "B" in BR chemotherapy

Chlorambucil

Immunotherapy, monoclonal antibody therapy:

Rituximab - the "R" in FCR and BR and other combo regimes or as a single-agent therapy

Gazyva/Obinutuzumab/Afutzumab - can be used in combination with Chlorambucil

Ofatumumab/Arzerra

Ublituximab/TG-1101 (in trial) - two trials with 1) Ibrutinib and 2) Umbralisib

Immunotherapy, immune checkpoint inhibitors:

Ibrutinib - BTK inhibitor

Venetoclax - BCL-2 inhibitor

Idealslisib - P110δ inhibitor

Acalabrutinib (in trial) - 2nd generation BTK inhibitor

Umbralisib/TGR-1202 (in trial) - PI3Kδ inhibitor in trial with Ublituximab

Duvelisib (in trial) - dual inhibitor of PI3Kδ and PI3Kγ

Voruciclib (going into trial) - MCL-1 inhibitor, may counter Venetoclax resistance

Angiogenesis inhibitor:

Lenalidomide (in trial for CLL)

Chimeric antigen receptors (or CARs):

CAR-T Kymriah (limited FDA approval)

CAR-T Yescarta (limited FDA approval)

Many other variations in development

[Sharipisc in reply to mariemascio]

Wow! Thank you. It's definitely a great start. Actually more than a start.

[Cllcanada Top Poster CURE Hero in reply to mariemascio]

Hi Marie its a good start... a few suggestions...

I think you need to indicate first or later lines of treatment.

These are primarily drugs available in the U.S. market the list will be shorter in other countries... 😯

I would add Corticoid steroids they are often used in CLL ... Prednisone and dexamethasone etc

In CD20 monoclonal you are missing Ofatumumab, it was recently approved for maintanance therapy in CLL.

I would also include Lenalidomide... not FDA, but used in combination trials.

There are the TG Therapuetics, PI3K inhibitor and they have a CD20 monoclonal as well, going to the FDA soon for approval.

~chris

[mariemascio in reply to Cllcanada]

Thanks Chris! I added the ones you mentioned, fabulous!

My understanding is that whether these drugs are first line or second line treatment depends on the genetics of each patient's cancer cells, their co-morbidities and general health, and also the leanings of the oncologist, yes? With some oncologists leaning toward new immunotherapy drugs for first line even for healthier patients who could tolerate chemotherapy. And it's also dependent if the drug is even available in that country (in trial only or as a general prescription) . . . which I don't have a good handle on. Does that sound right?

[Cllcanada Top Poster CURE Hero in reply to mariemascio]

The FDA basically says a drug can be used for a certain indication, and you can market it...

An example...

Venetoclax is FDA approved for second line use in the U.S. for 17p deleted /TP53 mutated.

However doctors can use it for firstline or any way they wish, and it is termed 'off-label'. But the insurance companies tend to stonewall these situations and often they will refuse to pay... this is where a CLL expert can make an iron clad case to the insurer that the drug needs funding.

Outside the U.S. there is some off label use in some countries, but it is extremely limited... managed healthcare tend to follow standard of care protocals dogmatically.

How a drug is used and when.. is based on many factors, genetics is one, age and comorbidities also play a large roll, and sometimes a patients does not want a pill a day forever, , but would rather have a limited treatment of chemoimmunotherapy, then get on with there lives..

Treatment looks at the big picture, with specific aims and objectives... patients should have a major input into this decision...

~chris

[Hidden in reply to mariemascio]

Thank you for that. Very interesting.

[caven]

Sharipisc:

Please, please, allow that I've possibly misinterpreted your term "Holistic Treatments" as a counterpoint to chemo/pill-treatments. But since some of my best friends are words, I tend to want to know more about them before I fully invest.

'Holistic therapeutic treatments' is often a code for activities that are altogether unlike standard, medically-supervised treatments. And, what that implies is that they've yet to be tested to be sure that they actually work, that interpretations of their effectiveness are more than just anecdotes, that they're proven safe (or at least the benefit outweighs the cost), and that the promoter of the 'treatment' isn't compromised by a conflict-of-interest.

Now those are tough standards to meet. I for one tend to place my confidence in proven, tested, audited, effective approaches ~~ even if that means dealing with the 'white-coat' brigade.

Candles, pyramids, copper bracelets, herbs from the Amazon (or anywhere that's a long-distance from your hometown), chants, hot-stones on the spine, 'cleansing' with purgatives, mono-diets, exotic aromas, rare-earth mudpacks, reiki, flotation tanks, cannabis, acupuncture, 'therapeutic supplements', totally hot-food (...or all cold-food) ~~ all of these and more will probably do you no long-lasting harm. [So long as you keep a tight grip on your money when they're promoted to you as a sure-fire cure].

*** Something I've noticed ... the longer one battles this insidious condition, the more confirmed one becomes in reliance on evidence-sourced decision-making that's guided by peer-reviewed studies in prestigious 'white-coat' journals. Just my thinking ... ***

[Sharipisc in reply to caven]

I am 55 years old and was diagnosed last year by accident when I had a lump biopsied. Needless to say it scared me to death. My WBC's have been steadily rising but over the last several months have dpubled over the last 3 months. The doctor wants me to come every 2 months now for blood work and started talking about treatment when he initially stated it would probably be years before I needed any. The word chemo also scares me so I was just looking for other ways to help my body help itself. I have been reading all your posts and everyone seems so knowledgeable and in control.

[Cpt_N in reply to Sharipisc]

Don't mean to be a "one-upper" but I'm 25 and diagnosed this last September. I am optimistic about many of the non-chemo combinations of inhibitors and antibiotics that have been made available in the last few years.

What are your FISH/mutational status results? Personally as poorly prognostic as I am I feel lucky to be diagnosed with this disease during this time, and I'm not even a candidate for chemo!

For arguments' sake, how can you determine the cost/benefit of doing a chemo regiment which has a chance of curing an otherwise incurable disease? What are your hangups?

[Sharipisc in reply to Cpt_N]

It's not that I have a hang up but I am a little concerned with doing chemotherapy. I am afraid that it will do more harm than good. I am hearing on this site that there are other non chemo therapies which I am happy about. I have a lot to learn and am just asking questions for knowledge.

[Cpt_N in reply to Sharipisc]

I understand. Trust me I am exploring many other "alternative" options to the Western standard of medicine. As caven commented earlier, however, there is a reason why people follow this line of medicine.

What it ultimately comes down to is what works. If doing holistic medicine works then fantastic. My sister is dating our friend from India who has his whole family praying for me every Saturday because of my birthday/year/moon. A relative on my dad's side died of fright which an alternative doctor in India predicted without meeting me. Alongside traditional medicine, these coincidences have been giving me hope as I pay more attention to them.

The way I've been thinking about this disease is like a video on YouTube. Sometimes when you play a video the video catches up with the buffering and stops playing. CLL is like the video playing and the buffering is treatment. I think we are at a point where treatment is close to disease performance where as you get treatment, disease performance will be met by newer treatments, and the video of our lives will keep playing.

[Sharipisc in reply to Cpt_N]

Thanks for the info and hope you feel good. Who knows, maybe all that birthday/year/moon will work.

[Hidden in reply to Sharipisc]

I felt the same way and I told my oncologist that I would not take the IV drip treatment that I've seen and so many of my friends and relatives had and they did not do well on it, to say the least. When he told me there was a pill I could take, Imbruvica, without knowing much about it, I said yes, I'd try that. Thank goodness I did as I've had very few side effects and my blood results are now normal after a year and a half. Don't know how long the Imbruvica works, but..........as they say, so far so good.

[AussieNeil Partner Administrator in reply to Sharipisc]

If we are honest, I'm sure most of us would acknowledge being scared at our diagnosis and when we are told treatment may soon be required (and lots of times in between...

This post may give you some helpful background in your evaluation of what you can do to gain (at least a feeling of being in) control: healthunlocked.com/cllsuppo...

Then this post contains the collective wisdom of many of us on what does help: healthunlocked.com/cllsuppo...

Neil

[Sharipisc in reply to caven]

I am grateful for your information. I meant non chemo therapies. I have a lot to learn.

[Hidden in reply to Sharipisc]

You'll learn, and you'll choose the best treatment for you! Talk to your oncologist about which treatments are available to you. Imbruvica is very expensive, from my own experience the pharmacy, Diplomat Pharmacy in the US anyway, finds funding for you for the treatment.

[Ellieoak]

Mary mascio gave a great description but most likely they will be old history by the Time you need treatment. When I was diagnosed there was only bone marrow transplant. By the time I needed treatment it was Treanda 2011. Now I’ve been on Imbruvica for 5 yrs. Not so bad.

[Sharipisc in reply to Ellieoak]

Once you start the medications, do you have to take them forever or until the WBC's normalize? Any side effects?

[GMa27 in reply to Sharipisc]

I am getting second opinion in a few months. My doc said chemo might be best treatment for me. That is why she is sending me for second opinion, which I would have done anyway. She asked me to think about having chemo and being done or having to take meds the rest of my life. I look forward to none of those choices, as we probably all do/did. But the idea of chemo scares me but thinking meds rest of my life not reassuring. I did try lots of holistic herbs. I go to acupuncture to build my immune system. That is a huge help for me around cold/flu season. But none of the herbs or homeopathic remedies have helped my CLL. For 5 months it stabilized my WBC but then it shot back up. Was worth a try. Good luck. Thanks for asking questions. Helpful to me wanting to know same things!

[Ellieoak]

Yes there are side effects but like I said before you probably won’t need them. I had tried all the other holistic treatments which didn’t work. Such is life. But I’m doing ok. Good luck!

[Sharipisc in reply to Ellieoak]

Thanks for the information. I'm glad you're doing okay!

[Hoffy]

CLL Society site is very good to get educated,

The book N of 1 discusses a diet/ supplement approach.

See the Mayo Green Tea study as well;

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

I have found Healthy origins Teavigo is the best according to Consumer labs ECGC - but you need to work with a doctor to watch your ALT and AST.

I am Trisomy 12 and 17P Deleted so Green tea did not work for me,

Hoffy