Dear Rene and Eddy,
Thank you for everything you have done and are doing. Feeling grateful to read your book and to be a part of this forum.
- My Mom had surgery to remove a 2.2 cm tumor from the left side of her tongue in Dec 2017. The surgeon removed additional tissue from the floor of her mouth near her original tumor.
- Her pathology report came back clear (yay!) but with severe dysplasia . Also the tissue from the floor of her mouth had severe dysplasia. The tumor was squamous cell carcinoma, HPV negative.
- On a recent checkup in Feb, a biopsy to her lymph node came back cancerous.
- She underwent a neck dissection removing 28 lymph nodes in early March 2018. Our surgeon also took more tissue from her tongue because she is still in pain near the base of her tongue and at the floor of her mouth near her original tumor and the appearance looked different. During the procedure the surgeon was able to analyze the removed tissue and unfortunately it was invasive cancer again, which he removed as much as he could.
- The pathology for this 2nd round of surgery came back clear, but again with severe dysplasia. Only 1 out of 28 lymph node had squamous cell carcinoma and it was encapsulated. Our radio oncologist said it was the best result we could ask for.
- Her radiation oncologist said my Mom is going through the "field effect" meaning the severe dysplasia exists, then converts to invasive cancer, gets cut out and it happens again
- Our surgeon said he believed the lymph node had cancer long before it was detected.
- Her chemo and radiation oncologist advised they can not treat her with any therapies due to she does not have any detected cancer at the moment.
My mom is 77 and otherwise in good health. Her 1st surgery back in Dec 2017, she recovered quickly this 2nd surgery was a lot more difficult and recovery has been slower. Her voice is still very hoarse and she has lymphodema. It’s been about 6 weeks since her surgery and she still has a lot of pain in her mouth. We fear it’s indicative of the severe dysplasia converting.
We went to UCSD to see if she could participate in clinical trials and she is not eligible since she doesn't have an active tumor. However, Dr. Cohen gave us a little hope that he may have a clinical trial in 6 months for her severe dysplasia. My Mom is taking baby aspirin and curcumin and fish oil along with a broccoli supplement at the moment.
She has classic TP53 Squamous Cell Carcinoma and HPV negative. I had her tumor and germline sequenced and her report showed "thiosemicarbazone drugs can restore wild-type strcture and function to TP%# p.R136H and induce apoptosis of cell lines carrying this mutant p53 molecule" Pubmed ID 22624712. The strange part of this is that she never smoked, chewed or barely even drank.
I am writing this from the "Immunotherapy Center" in Tijuana and we are enrolling in their program due this center seems to have the best chance for my Mom to get therapy to boost her immune system. They have a program outlined for her and they want to do the following things below for her for 3 weeks. The doctors are very receptive to me asking questions and tailoring my Mom’s program based on my questions. I am nervous about the B16 and low dose chemo they want to administer, they don't offer low dose radiation which I would have preferred over the low dose chemo. I am researching as much as I can while I’m here but if you have any thoughts I would greatly appreciate it. Also they want to make a stem cell vaccine for her, but I thought stem cells typically aren't good for cancer or previous cancer patients within 5 years because it can activate good cells and or cancer cells.
• IPT/DPT/B-17 – 3xs (have you heard of B-17 and what are your thoughts?)
• Whole Body Hypothermia – 2xs
• Stem Cell – 1x (I thought this was not indicated for someone who has/had cancer?)
• NC – 1x
• Drops P. – 5
• Sono Dynomic -8
• Hypertermia – 20
• Mag Ray – 20
• Lasser – 20
• Biomagnetic – 30
• Rife
• UBVT – 1x a week
• Bemmer 8/8
• Halo Light
• Halo Water
Today is our first day here and starting to meet so many amazing people. I am sharing with everyone here your book and highly recommending as an absolute must read.
Maximum blessings,
Mi Hyun
We’re very sorry your mom has gone through so much. It’s very good that you’re taking action now before the cancer fully returns.
A few things that came to our minds for your mom’s situation:
1) Find out the efficacy of the surgery your mom had, and also the efficacy of treatments that the oncologist is thinking about prescribing when the tumor appears again. It’s important to know how effective (or ineffective) the treatments prescribed by the doctor are. Because sometimes surgery alone, or various conventional treatments can keep certain cancers under control. It’s important not to miss out on treatments that are effective.
2) Find immunotherapy clinical trials that treat patients with no visible tumor (there have been trials like this before), and also immunotherapy trials that your mom would be eligible for when the tumor returns. Do not be afraid to contact clinical trials where it may seem your mom doesn’t qualify (for eg, if it’s for other kinds of cancer). It’s worth it to contact them anyway, as sometimes there are leeways and they may accept other cancer types. Make connections with the trial coordinator now so that if you need the trial in the future, you can quickly enroll your mom. Chapter 16, "Driving your own cure", has practical guidelines on looking for clinical trials.
3) Look for doctors that are willing to prescribe off-label PD-1. If there are no immunotherapy clinical trials, off-label immunotherapy is a possible way to get treatment if the doctor is willing to prescribe it and you’re willing to pay out-of-pocket as insurance will not cover it. Usually melanoma oncologists are more familiar with PD-1 (since PD-1 was first tested in melanoma). Chapter 16 again has practical guidelines for this.
4) We’re not able to comment on the treatments at the Tijuana clinic, but we recommend examining the evidence and science behind any treatment that your mom receives. Chapter 16, Table 3, lists out various treatments, many of which are accessible in the US now, that can be combined for an effective immune response.
5) Fish oil - The dosage of omega 3 and the amount of omega 6 in the diet matters for the anti-cancer effect of omega 3. The case study of Patient DH’s dramatic remission solely with high omega 3 and low omega 6 illustrates this clearly (Chapter 15). Some resources:
case study of Patient DH:
http://www.thedcasite.com/Omega3_Fatty_acids/Nutritional_Intervention_Wi...
Info on omega 3 supplementation:
http://www.curingcancerbook.com/diet/high-omega-3-supplementation
Info on omega 6 diet:
http://www.curingcancerbook.com/diet/low-omega-6-diet
Deary Rene and Eddy,
Thanks so much for these suggestions. All of her oncologists and surgeon advise surgery is the choice for therapy if/when it the cancer returns. However, the surgeon told us if he had to preform surgery again would need to do reconstructive surgery. My Mom tells me if it returns, she would opt out for surgery again, since the last surgery was pretty brutal (neck dissection). We haven't found an oncologist yet that will explore prescribing off-label PD-1 inhibitors. Her doctor and UCSD mentioned she might qualify for a dysplasia clinical trial in ~5 months, and we are staying tuned for that. But, we are considering that if she enters it there is also a chance she could get a placebo and if she is in a trial, she would not be able to deviate from their protocol.
At the TJ clinic we are currently at, they started her on 50 mg of docetaxal (low dose chemo through IV) and prescribed 3 doses, 2 more each Sat. She had her blood drawn yesterday (CBC and chemistry panel) and her blood glucose went from 100 to 147. Her blood sugar has been stable for the past 3 weeks roughly 100, but yesterday was 147. The only thing that changed in her therapy was the addition of what they are telling me is low dose chemo. In doing a little research online on Pubmed, I found some information stating acute hyperglycemia associated w/ Anti-Cancer medication and possible toxicity. When I spoke to her doctor about toxicity he said, her liver enzymes would be elevated so chances are very low. We will repeat a fasting glucose tomorrow. Are you familiar with this and should we consider being more conservative with the chemo? She didn't have too many side effects from it, aside from feeling tired after. They admiinstered DMSO prior to her chemo they mentioned this targets the cancer, and then the chemo targets the DMSO.
Thanks in advance,
Mi Hyun
For off-label PD1, you can try contacting Dr. Peter Boasberg at the Angeles Clinic (Santa Monica). The clinic he's at has run checkpoint inhibitor (CTLA4, PD1) trials for a very long time and they're experienced with it.
One thing to keep in mind with PD1 is that monotherapy (just PD1 by itself) sometimes may not be effective - you need to have T cells against the cancer for the PD1 to be effective. Chapter 16, Table 3 is a good summary of the various immunotherapy treatments that can be combined.
I forgot if I shared with you the lecture I gave on immunotherapy. It's a 1 hr summary of how we tried to achieve a complete immune response. May be a good way to refresh the concepts for an immunotherapy strategy. http://www.curingcancerbook.com/blog/videos
I haven't done low dose chemo before. DMSO is a general solvent - I don't know how it will affect the chemo or cancer cells. It might increase the permeability of the chemo into cells in general, but I don't know if it's selective for cancer cells.
I hope your mom is doing well.
Great lecture, thank you.
Thank you for the recommendation in Santa Monica.
The chemo my Mom received came with some extreme side effects. She had neutropenia and we had to go to urgent care. They gave her neupogen for 4 days and her WBC fortunately returned but quite high but better than being low. She is recovering now and continues with taking your recommended dose of fish oil.
Thanks again for your all your recommendations and for your time.
Best,
Mi Hyun
We're sorry to hear your mom had neutropenia. We hope she is on the mend and feeling well.