(Checked June 2017)
Here are the key issues from a survivor’s standpoint that count the most, day by day, year by year in overcoming follicular lymphoma.
Please be sure to review this page in conjunction with the Follicular Lymphoma Core Concepts which covers the all-important BIG PICTURE, particularly the section on The Development and Resolution of Follicular Lymphoma if you are newly diagnosed.
All survivors/caregivers are encouraged to review the “breakthrough” content in the June 2017 newsletter.
1 . Is a cure likely to be found for follicular lymphoma?
A permanent cure for any form of cancer will require correction of faulty genetics. Drugs, new or old are able to kill a certain number of cancer cells but cannot repair genetic errors, so unfortunately, responses are usually only temporary and relapse is common.
In 2017, procedures are in development whereby damaged genetic DNA can be replaced with “splice ins” involving a gene “editing/repair” procedure known as CRISPR.
The CRISPR procedure is revolutionary. By one means or another, “gene therapy” is essential to cure cancer, whether it is in combination with immunotherapy or not. So CRISPR is on the right track as far as that requirement goes. But there are numerous uncertainties. Adverse “off target” side-effects on the body’s normal cells is a serious concern. This has already become apparent with immunotherapy approaches using manipulated T-cells, notably CAR-T.
Progress using CRISPR will be rapid if outcomes are favorable. However, cost, already forecast to be horrendous at over $150,000/year in the case of T-cell immunotherapy, perhaps as high as a million dollars per patient, will obviously be a significant factor influencing general and practical acceptance.
The outlook described above, while holding some promise, still remains rather grim. Fortunately, for many survivors of follicular lymphoma there is another way to create “gene therapy” by applying the latest scientific research in epigenetics. We cover this with our Four Pillar Gene Remediation Strategies (4P-GRS) program. Further details are included in FAQ’s 11~14 below.
Our Pathway to Cure page will provide inspiration in this regard.
2. Do all follicular lymphoma patients need treatment?
As things now stand, most follicular lymphoma (fNHL) survivors require conventional treatment at some point, but not necessarily when diagnosed. If this becomes necessary, it is very important that these treatments be chosen wisely and applied correctly in consultation with one’s clinical oncologist. We provide information covering the various treatment options, both old and new. We have an article on Optimizing Chemotherapy and another on Nutritional Strategies During and After Treatment.
Many members here have not required treatment for 10 years and longer. Several have experienced spontaneous (natural) regression. See FAQ #10 below.
3. When does a follicular lymphoma patient know he or she needs treatment?
New research based on the m7-FLIPI genetic test for follicular lymphoma (not yet commercially available) suggests that as many as 75% of newly diagnosed survivors should be “watched” or followed on “active surveillance” (which in 2017 is increasingly common with prostate cancer). The other 25% would likely benefit from early treatment.
In general, the time to treat is when the lymphoma begins to interfere in one’s normal activities, such as from pain or not feeling well, or for cosmetic or psychological reasons.
4. I’m on chemo and looking forward to maintenance rituxin afterwards to stop my cancer from coming back. My doctor has now changed her mind and says more rituxin isn’t a good idea. Should I seek a second opinion?
No. You are fortunate to have a good doctor. She has probably read recent information from prominent specialists indicating that maintenance rituximab is now considered optional. She may also have other patients who have experienced problems.
In response to many questions we get regarding maintenance rituximab, we have prepared a summary of the pros and cons. It includes several direct quotes from prominent specialists.
As a member of the Lymphoma Survival group, you can request a copy of this summary by emailing us at Robert@LymphomaSurvival.com Type MR Summary Request in the Subject line.
Problems with maintenance rituximab will likely also apply to Gazyva. (Newsletter details are available).
This should help you in understanding the present concerns and in making the right choice in consultation with your doctor.
5. I’m confused about conventional therapy and so-called alternatives. Do alternatives actually work?
Recent advances in genetics have enabled alternative medicine to become far more scientifically based. A new field in medicine has emerged known as epigenetics. Certain features of alternative medicine can now be matched with a degree of precision to specific genes driving lymphoma (and other cancers) never before possible. The US National Institute of Health under the title Epigenetics and Lifestyle acknowledges and lists many lifestyle behaviors that can create epigenetic effects within the human body.
See FAQ’s 11~14 below for details on our Four Pillar Gene Remediation Strategies (4P-GRS) program. Please also review our Follicular Lymphoma Flow Chart page.
6. Given that follicular lymphoma is considered incurable, why can’t the same treatments be taken over and over again?
Everyone becomes resistant to repeated use of the same chemotherapy drugs, including monoclonal antibodies such as rituximab and obinutuzumab (Gazyva).
New drugs such as ibrutinib and idelalisib (Zydelig), including T-cell immunotherapies (still in trial) are intended for ongoing use. However, as expected, early indications are that resistance sets in with accumulating side-effects causing the survivor’s normal cell population to malfunction.
[Note: Ibrutinib abd idelalisib (Zydelig) have now been discontinued in many applications, primarily due to adverse side-effects].
The best way around this problem is to improve the health of our normal cell population. Research from 2004 indicates that the survivor’s tumor “microenvironment” is the main factor determining overall survival time with follicular lymphoma, not the number, sequence or type of treatments taken.
A “healthy” microenvironment arises from the creation of favorable gene expression in our healthy cells.
7. Why do you emphasize the need for long – term planning for 20++ years of active healthy survival?
As long as follicular lymphoma remains incurable and since all conventional treatments develop resistance upon repeated use, it is very important to use the limited number of treatments judiciously and only when needed. Some treatments, such as those for transformation, can be used only once.
The patient, as overall manager of his or her case, will need to factor all information about available treatments into the total plan based on the latest scientific research covered in depth on our site when making treatment decisions.
The informed survivor, most likely to succeed, is the survivor who can choose treatments strategically if and when needed in consultation with their clinician.
8. What is the main barrier blocking long – term survival with follicular lymphoma?
Transformation. All follicular lymphoma survivors should be fully aware and knowledgeable regarding transformation.
Transformation refers to some but not all of the follicular lymphoma cells becoming aggressive. It is often misdiagnosed. Treatment is required in virtually every case. Due to the complexity of diagnosing and treating this serious event, we provide survivors with complete information about transformation in our Article #4.
It is very important to get the full benefits of treatment at this time. We have “chemo optimization strategies” in Article #8 and in Article #9 we cover everything you need to know to optimize diet and promote healing and recovery during and after treatment.
9. Are there new conventional treatments on the horizon for treating follicular lymphoma?
Yes, but they are very different than in past years.
Other than for work on re-formulating platinum-based chemotherapies (which we fully support) to make them less toxic, virtually all research on chemotherapy has ceased.
In keeping with the genetic “revolution”, most of the new research applicable to follicular lymphoma is focused on gene-based drugs such as ibrutinib (Imbruvica), idelalisib (Zydelig), ABT-199 (Venetoclax) and many others.
Some of the above-mentioned drugs, still being extensively tested in clinical trials, are not yet approved for use in patients with follicular lymphoma, or are approved only for relapsed patients. The approval status of these new gene-based drugs changes rapidly. Approval usually comes first in the USA. Overall, based on trial data so far, we see obvious issues with these gene-based drugs both with regard to their initial effectiveness, durability and specifically the cumulative side-effects resulting from having to take them on a never stop basis. Costs are horrendous at over US $100,000 a year ongoing.
Details on these gene-based drugs are covered in various recent newsletters. We strongly recommend that survivors interested in these drugs check our Topic Index.
[Note: Ibrutinib abd idelalisib (Zydelig) have now been discontinued in many applications, primarily due to adverse side-effects].
10. You mention “spontaneous regression” with follicular lymphoma. What is this?
ALL follicular lymphoma survivors should become fully informed regarding spontaneous (natural) regression.
Spontaneous regression, also known as natural regression, means that the lymphoma begins to reverse and shrink in the absence of conventional treatment. The word “spontaneous” implies that this reversal occurs, “out of the blue”, for no known reason. We disagree — NATURAL regression is the predictable result of applying gene remediation strategies.
Natural regression can occur at any time in one’s journey with follicular lymphoma – both before and after treatment. Once it occurs, it is generally permanent in that location.
Years of experience indicate that follicular lymphoma survivors who experience natural regression have a much better long-term outlook. Read the What the Members Say page for comments from members who have experienced natural regression as a result of applying our 4P-GRS program.
We now see that it IS possible to extend the permanent shrinkage of a single lymphoma node to all nodes. This ongoing process over an extended period can lead to eventual resolution of the disorder.
[Note: Regression and remission are two completely different things. Remission is a clinical term, referring to a period of time where the lymphoma is “quiescent”, not requiring treatment.
Note also that natural (spontaneous) regression and the frequent occurrence of so-called “wax and wane” are NOT the same thing. Regression is usually permanent in a specific location.]
11. What exactly is this 4P-GRS program you have here?
FAQ #5 noted that the US National Institute of Health under the title Epigenetics and Lifestyle acknowledges and lists many lifestyle behaviors that can create epigenetic effects within the human body.
Many people are unaware (understandably) that the expression of our genes (known as epigenetics) is regulated up or down 24/7 based largely on lifestyle practices and environmental exposure.
People may also be unaware that when things are in proper balance, our body has ways to regulate cancer growth and even to repair faulty DNA in our genes. (Powerful stuff!).
Applying the latest research linking lifestyle to optimal genetic expression as precisely as possible, our Four Pillar Gene Remediation (4P-GRS) program was developed. Articles #3, 10 and 11 contain recommendations on nutrition, diet, exercise, sleep, stress management and optimal year-round vitamin D.
The 4P-GRS program is biologically sound, potent and flexible. The emphasis at all times is on balance and quality of life. It is now available for the first time ever for adoption by proactive follicular lymphoma survivors.
12. Are you implying that all I will need to do is apply the 4P-GRS program and not consider conventional treatments?
No, not at all. Knowledge regarding BOTH conventional therapy options and science-based natural strategies provides survivors with the BEST chance for achieving extended, healthy survival out past 20 years without ongoing side-effects.
13. How long does it take before a survivor experiences noticeable results after adopting the 4P-GRS program?
It is highly variable, as one would expect, depending on many personal factors that are different from one patient to another. It is likely that with a full adoption of the suggestions in Articles 3, 10 and 11 that initial benefits should become apparent after approximately three months.
14. How did you develop your “Four Pillar” program of natural strategies targeting gene remediation?
As fellow survivors will well understand, it is a shock to learn upon diagnosis that follicular lymphoma is clinically incurable with a median survival time of 10~12 years.
Following my diagnosis in 1988, it was apparent that “watch and wait”– just going home waiting for things to get worse — was nothing more than a form of benign neglect. Totally unsuitable! Opting for aggressive therapy, trying to blow it out, blindly going for a cure that no one had ever achieved would be even worse.
So I read the research on follicular lymphoma, spending many hours in medical libraries. Then one day the most incredible thing jumped out:
Research from Stanford University in 1984 showed that 80% of follicular lymphoma survivors were still alive out past 15 years, NOT by taking treatments, but by withholding treatment. Not only that, but about a third had experienced spontaneous (natural) regression.
More than anything else, that data gave me hope from a source I could rely on. There it was in black and white, in the New England Journal of Medicine no less. Commonly held beliefs that overall survival time was only in the 10 year range (still held to be true in many quarters) was “not exactly accurate”!
For the first ten years after my diagnosis my interest in natural strategies grew as I was determined to do everything I could to help myself and increase my odds of experiencing extended healthy survival.
With the advent of the internet, LymphomaSurvival.com took shape in 1999. It covered the ideas and suggestions on what I had learned over the years regarding both natural strategies and treatment considerations.
Until about 2008 many of my natural strategies were developed from the field of alternative medicine. Hundreds of options were available. There were some new ideas (714X, hydrazine sulfate, IV vitamin C, LDN, ++>), but many others were just carryovers from folklore developed over the decades. Some of the alternative medicine advice appeared to help, but most of it didn’t. You learn, and hopefully still live.
Fast forward to around 2010; now a different view of cancer emerges, coming from research done primarily by geneticists and biochemists. This new research revealed that cancer does not occur just because of “bad luck”. Cancer is a genetic disorder regulated partly by initial mutations but mostly by gene expression following diagnosis. Accordingly, our natural strategies program was altered to include the new research.
In 2014 we changed the name of our program from Targeted Natural Strategies (TNS) to the Four Pillar Gene Remediation (4P-GRS) program.
15. How do I join LymphomaSurvival?
We admire survivors who take steps to become proactive in helping themselves.
We support these people 100% with a willingness to share things we have learned ourselves from knowledge and personal experience accumulated over nearly 30 years.
Our team looks forward to having you as a member. You can register here .
Best in Health,
Robert G. Miller