FAQ Updated April 2020
Here are the key issues that count the most toward achieving long term success in overcoming follicular lymphoma. Please be sure to see coverage of natural (spontaneous) regression (#10 on this page) and on What the Members Say
After reviewing the FAQ’s below, read the Core Concepts Page to receive vital “big picture” knowledge re the confusing, controversial nature of follicular lymphoma.
Refer to our Home Page for guidance on the Lymphoma Survival copyright Four Pillar Epigenetics Program (4PEP) developed over 20+ years, constantly updated based on the latest scientific research. Survivors can derive benefits from this practical program right away.
April 2020 Newsletter
CORONAVIRUS COVID-19 UPDATE SPECIFIC to LYMPHOMA
Follicular Lymphoma FAQ
1 . Is a cure likely to be found for follicular lymphoma?
Consistent with the statement from the National Cancer Institute (NCI) that “cancer is a genetic disease”, a permanent cure for any form of cancer will require correction of faulty genetic signaling.
Drugs, new or old are able to kill a certain number of malignant cells. For this purpose they are helpful and often essential (when the right ones are used at the right time). But treatments (including radiation and immunotherapy) cannot repair genetic mutations or correct ongoing daily imbalances in genetic expression. So unfortunately, benefits from treatments alone are temporary with relapse being common. That is why follicular lymphoma remains incurable.
HOWEVER, many things can be done in addition to standard treatments. When properly implemented, these initiatives can significantly extend survival time with follicular lymphoma while simultaneously enabling the survivor to live a healthy, active life free from side effects.
Details on our Four Pillar Epigenetics Program (4PEP) are covered in FAQ’s 11~14 below.
The Pathway to Cure page will provide inspiration in this regard.
2. Do all follicular lymphoma patients need treatment?
As things stand now, most follicular lymphoma (fNHL) survivors require conventional treatment at some point, but not necessarily when diagnosed. (See #3 below). 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 indicates that about 75% of newly diagnosed survivors should be “watched” or followed on “active surveillance” (which is now common with prostate cancer). The other 25% could benefit from early treatment.
Newly diagnosed survivors should become familiar with this data on who should be treated early and who can defer treatment until later (if needed at all).
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 rituximab 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 no longer the “standard of care” since it does not increase overall survival time and often results in serious immune suppression afterwards that can be permanent.**
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 (obinutuzumab) and so called “biosimilars” to rituximab that are now becoming available. Newsletter details are available here.
This should help you in understanding the present concerns and in making the right choice in consultation with your doctor.
** Four prominent lymphoma doctors have now officially stated, quote: “MR can’t be recommended as a standard for the treatment of FL”. This may finally mark the end of MR. If taking MR, or planning to do so, you should be aware of this development for follow up discussion with your clinician. More info is available on this site.
5. I’m confused about alternatives. Does alternative medicine actually work?
Certain features of alternative medicine can now be matched with a degree of precision to specific genes driving lymphoma (and other cancers).
A new field of medical science has emerged known as epigenetics. Simply put, epigenetics refers to environmental influences, including lifestyle practices that trigger changes in gene expression. This field, based in both medicine AND health is advancing rapidly LINK
As a result of scientific advances in epigenetics, alternative medicine is not regarded as a valid way to manage follicular lymphoma.
See FAQ’s 11~14 below for details on our Four Pillar Epigenetics Program (4PEP). 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 some 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 and idelalisib (Zydelig) have now been discontinued in many applications, primarily due to “off-target” serious side effects].
The best way around this problem is to improve the health of our normal cell population. Research going back to 2004 indicates that the survivor’s tumor “microenvironment” is the main factor determining overall survival time with follicular lymphoma, not the 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 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 –> and then follow up with a scientifically-based program of recovery; from there, going on toward extended, healthy survival as the ultimate goal.
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. Despite research over many years, transformation remains a confusing matter, often misdiagnosed. Treatment is usually required. Due to the complexity of diagnosing and treating this serious event, we provide survivors with the latest information on transformation.
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 what 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. They are very different than in past years.
Other than for work on re-formulating platinum-based chemotherapies (which we support) to make them less toxic, virtually all research on chemotherapy has ceased.
Nanotechnology, still in its infancy, holds promise.
In keeping with the genetic “revolution”, research over the past few years applicable to follicular lymphoma focused on gene-based drugs such as ibrutinib (Imbruvica), idelalisib (Zydelig) and ABT-199 (Venetoclax); more recently on duvalisib, copanlisib, tazemetosat and others.
Some of the above-mentioned drugs, still being 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 off-target side-effects resulting from having to take them on a never stop basis. Cost may exceed US $100,000 a year, sometimes far more.
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 and recently updated Article #6, When to Treat and With What Including Relapse Treatments.
[Note: Ibrutinib and idelalisib (Zydelig) have now been discontinued in many applications, primarily due to off-target serious side effects].
In 2019, the appeal of these narrowly focused gene-based drugs appears to be waning.
There is currently a great deal of publicity regarding immunotherapy applicable to lymphoma (PD blockers and CAR-T). Trials are in progress. These drugs, if approved, will likely be for relapsed cases as a last resort (salvage therapy) where further standard conventional therapies are not deemed suitable, including stem cell transplants. Expect frequent, often serious side effects, coupled to horrendous cost, likely about $450,000 with one-time CAR-T and $150,000/year, in some cases ongoing (as with PD blockers).
[New information on immunotherapy is coming forward rapidly. It is currently hard to obtain balanced, unbiased data on CAR-T from reliable sources. Those interested should investigate further, using search terms such as pros, cons, immunotherapy, CAR-T, follicular lymphoma]. The June 2019 Newsletter has an item titled “Where are we at with Immunotherapy”.
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 what takes place when faulty expression of genes driving lymphoma is brought back into proper balance.
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 4PEP 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 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 Four Pillar Epigenetics Program (4PEP) you have here?
FAQ #5 noted research linking lifestyle behaviors to gene expression in the human body.
By way of general background, all humans have the same genes. So it’s not a matter of having a gene or not having it. It is so-called “variants” within a gene that make each of us different.
IN ADDITION, and equally if not more important, it is the EXPRESSION of our genes (known as epigenetics) that is regulated up or down 24/7 based largely on lifestyle practices and environmental exposure.
When things in our life are in proper balance, our body has many (wonderful) 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, the Four Pillar Epigenetics Program (4PEP) was developed. Articles #3, 10 and 11 contain recommendations on nutrition, diet, exercise, sleep, stress management and optimal year-round vitamin D.
The 4PEP 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 for adoption by proactive follicular lymphoma survivors.
After many years in development, the 2019 update to the 4PEP program in Article #3 captures better than ever the latest scientific research linking lifestyle to the corrective expression of genes driving lymphoma (and perhaps most other cancers).
12. Are you implying that all I will need to do is apply the 4PEP 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 4PEP 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 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 the New England Journal of Medicine. 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.
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 30+ years.
You can read details about our site on the Home page where you can also click on the Registration button to become a member.
Best in Health,
Robert G. Miller