Best Protocol To Beat Chronic Lymphocytic Leukemia?
Love the site!
No doubt, there's some smart minds around here!
About 8 months ago I (52 year old male-live in the U.S.) was diagnosed with CLL, stage 0, with NO symptoms (no night sweats, spleen & liver normal, lymph nodes normal, etc). However, have intermediate risk factors: CD19 87%+ of these ZAP70 1% & CD38 1%+, del(13q14) by FISH, IgVH mutated, VH2-5 family, beta 2 microglobulin elevated at 2.68 mg/L.
White blood cell count 23.4 (should be 2.8-10.8), absolute lymphocytes 18,603 (should be 850-3900), RDW 16.0 (should be 11.0-15.0), hs-CRP is 2.1, IGF 1 is 165 (in middle range), and Vitamin D 25 Hydroxy is 44 (normal but in low middle range). Everything else is normal.
I'm on Watch and Wait, which means my Oncologist monitors my blood every 6 months to see how I'm progressing.
Although CLL is a slow moving cancer there is no cure for it. In fact, there is only a 1% cure rate! Which stinks! From what I've been reading its tough to get these little buggers (they always come back after knocking them down), because they protect themselves in tissue and in bone marrow (stromal protection).
What mix would be the best bet to win the battle here?
Thanks a bunch!
Thanks for your nice words and welcome on this website!
Should I understand that in the Watch and Wait mode you are not taking any drug or supplement?
I am asking this so that I know what is the direction we have to think.
Thank You Daniel.
Yes, I am not taking any drug or supplement.
I can monitor my blood anytime I would like so whatever I decide to do, if it looks like something is going in the wrong direction, I could always stop or make an adjustment. The flip side is if something is going in the right direction, to continue on.
And obviously you guys and gals are just giving opinions, it ultimately comes down to decisions that I and my doctor/s make.
First, thank you for your donation. I very much appreciate that and will do my best to convert that into value for patients. I appreciate even more such gesture in the context in which that happens rarely (it's the second donation since March) while I am contacted by many people on e-mail asking for information on oncology. I do that as I can, with most pleasure and for free. Some I even help with money. But in order to be able to answer questions and do research full time (not only in my free time as I do now) I will have to search for an alternative source of income to my current full time job. I am actually busy with this and hope to find a sustainable way forward soon.
Here is an overview on CLL that could be helpful as a high level view https://www.ncbi.nlm.nih.gov/books/NBK66050/ and here is a more scientific paper on the same https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5336551/
While in the Watch-and-Wait mode here is what I would consider using:
- I would start using Metformin as proposed in this clinical trial on CLL https://clinicaltrials.gov/ct2/show/NCT01750567
This article may be interesting on this line https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4673187/
- I would start low dose Aspirin (100mg/day) https://www.cancertherapyadvisor.com/ash-2012/ash-aspirin-might-improve-survival-in-refractory-and-relapsed-cll/article/272437/
- Satins may also help https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5233806/ and http://www.umanitoba.ca/institutes/manitoba_institute_cell_biology/MICB/CLLMeeting/2014%20Presentations/Chow%20-%20Hypercholesterolemia%20in%20CLL.pdf and https://www.tandfonline.com/doi/abs/10.3109/10428194.2015.1088651?journalCode=ilal20
- Omega 3 could help as well http://mds.marshall.edu/etd/586/
- Based on the above I would consider using the complete anti-cholesterol strategy I put together here https://www.cancertreatmentsresearch.com/reduce-cholesterol-in-cancer-cells-to-fight-cancer/ that includes all the above elements (Metformin, Aspirin, Statins, Omega 3) shown to be of value in CLL
- Noscapine is also believed to help http://www.medicinacomplementar.com.br/biblioteca/pdfs/Cancer/ca-1753.pdf
- Ritonavir and metformin https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4868500/ Based on this study, a strategy that combines glycolysis inhibition (here with GLUT4 inhibitor Ritonavir) with mitochondria suppression (here using Metformin) works well in CLL. This can be achieved with other drugs and supplements as well and could be most effective with intravenous administration of the drugs.
- Amanita phalloides http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3151460/
- Here is a list containing multiple drugs with action against CLL discovered after analyzing a complete database. Among the identified compounds, 29 are antineoplastic agents, 5 are antibacterial agents, and others included drugs used for the treatment of hypertension, inflammation, rheumatoid arthritis and heavy metal poisonings. http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0075252 Of these, agents such as antirheumatic agent Auranofin may be very relevant. It has also been included in a drug cocktail proposed to tread brain cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3720600/ and it’s safety is discussed in this paper
All of the above can be easily implemented.
Others that I think is good to keep in mind if needed at any point, but more aggressive are:
- Thaliodomide https://www.ncbi.nlm.nih.gov/pubmed/22098228 I discussed Thalidomide here https://www.cancertreatmentsresearch.com/?s=thalidomide
- Diflunisal could be a much more effective way to treat CLL compared to low dose Aspirin, but it is given intravenous. Here is a post where I discussed Diflunisal https://www.cancertreatmentsresearch.com/?s=diflunisal
Please note that recently, Verastem Oncology has demonstrated good activity against CLL with their drug Duvelisib http://www.verastem.com/pipeline/duvelisib-pi3k-delta-pi3k-gamma-inhibitor/ . It is highly likely that this drug will be approved by FDA in the second part of this year and by the end of the year is expected to be available to the patients. Technical details can be found here http://investor.verastem.com/phoenix.zhtml?c=250749&p=irol-calendar I hope this will not be needed but is good to see progress in the field.
I hope this helps and if there are questions please let me know.
My pleasure Daniel.
You have a gift my friend! It would be terrible for you NOT to be able to do this full-time.
There is a wealth of information here. Impressive to say the least! Wow!
It’s going to take me a little time to go through all of this. Lol. Will be in touch.
Thank you! Btw, more good news from Verastem and their drug (used in combo) for CLL came out this weekend at Congress of the European Hematology Association (EHA) being held June 14-17, 2018 in Stockholm, Sweden https://www.businesswire.com/news/home/20180616005012/en/Verastem-Oncology-Presents-Duvelisib-Data-EHA-2018
Like you said, its nice to see progress in the field.
After going everything, I must say, it’s a very interesting approach. None of which I’ve come accross anywhere else. That being said, (if it was you) what would be your list: drug or supplement with dosses.
Also, what’s your opinion on lifting weights? I’d like to get back into shape like when I was in my 20’s & 30’s and put some muscle back on, but I certainly don’t want to help my CLL.
Thanks A Bunch!