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Follicular

Pwhitefl21
Posts: 15
Joined: Jan 2021

Recently diagnosed. Visiting oncologist Monday to discuss next steps.

 

Any advice of what to expect. Still shocked that my life can change from one minute to the next. No symptoms outside of a swollen lymph node. Active, and I thought I was healthy. No other heal issues in my life.

 

 

PBL
Posts: 291
Joined: Jul 2016

Hi Pwhitefl21 and welcome to the club!

With no symptoms other than a swollen lymph node, Follicular lymphoma can be managed with "Watch and Wait", aka "Active surveillance" - which means, no treatment other than regular monitoring (blood tests & hem/onc appointments) sometimes for many long years. Studies tend to show that this approach, counterintuitive though it may seem, has no impact on the course of the disease - and you get to keep your normal quality of life for as long as the disease behaves itself, while research puts out new, less aggressive treatments for your benefit when needed later on.

Think of Follicular - a slow-growing ("indolent") lymphoma that is prone to waxing and waning (alternating flare-ups and regressions) and can even go into spontaneous remission - as a chronic illness. Depending on what imaging and bone marrow biopsy will tell, if you are one of those lucky patients that are diagnosed at an early stage with just one (fortunately) conspicuous node, your oncologist may even tell you that the biopsy in effect removed the only detectable affected node, or might offer some radiotherapy localized to your biopsy site to rid you of any remaining cancer.

If it turns out that there is more to be seen, treatment nowadays does not necessarily mean going straight to chemotherapy. Rituximab, an immunotherapy drug that has now been around for over twenty years, can be the only treatment needed to keep the disease under control. Chemotherapy as such is generally only necessary when you are very symptomatic and/or have tumors that are pressing on or invading organs.

So, at this point, and based on what you tell us, there is really no need to panic. Take a deep breath and go about your usual business while waiting to meet that oncologist and hear what s/he's got to say on your diagnosis.

If you have any specific questions in the meantime, just ask and we will try to give some answers.

PBL

Pwhitefl21
Posts: 15
Joined: Jan 2021

Thank you so much. I hope to have some clarity soon, and as I have read "watching and waiting" can seem confusing, but I understand why its done. Hopefully it is isolated to that node.

 

Will respond, once I have some clarity for your thoughts, and I appreciate your time. Your email was comforting.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3604
Joined: May 2012

P,

Watching and Waiting, also called Active Survellence, is a treatment option given to some patients with indolent disease.  It is an OPTION.   Virtually any oncologist will also offer the patient to begin curative treatment instead, if they so choose.  Curative simply means a treatment toward the effect of eradicating the disease wholly from the body.  Oncologists seldom use the term 'cure' anymore, instead calling the absence of any detectable disease 'No Evidence of Disease' (NED) or 'complete remission' (CR).

You will have choices to make, in consultation with your doctor.  The approach most comfortable to the patient emotionally is often the one settled upon.

Pwhitefl21
Posts: 15
Joined: Jan 2021

Thank you. The doctor was very positive in the initial consulation, and as expected requested multiple blood test, and a PET Scan at the end of the month. Early next month, I will meet with him, and discuss a strategy going forward depsning whether localized, or a later stage. He was very optimistic since I dont have any other symptoms, and the swelling that initially created the need to seek consultation is gone.

 

 

ShadyGuy
Posts: 632
Joined: Jan 2017

I have been fighting follicular for 10 years and have undergone intensive R therapy and chemo. In my visits to MDA, Duke, Georgetown and locally the consistent word is that follicular, except in some very rare cases, is not curable with current approaches. The best one can hope for is to fight it back when it flares up and hope for an eventual cure while hoping it does not transform into a more aggressive form. The many years of treatments including CT/PET scans, along with aging, lead to a weakened immune system which can let in other diseases including secondary cancers and infections.  So, no Max, there is no truly curative treatment for follicular, only management. Mean survival is 10 years, but one can still survive for decades with good care. I know one man in his 80s who has had it for 26 years.

Pwhitefl21
Posts: 15
Joined: Jan 2021

I have heard the same as to a cure. Thank you.

PBL
Posts: 291
Joined: Jul 2016

Notwithstanding the above-expressed opinions, Follicular lymphoma is generally, due to its indolent nature, diagnosed at a late stage. But on occasion, it can be found out at an early stage, and then there seems - cf. the medical literature - to be a credible likelihood of it being cured.

Hoping such is the case for you. PET scan and Bone Marrow biopsy will define your status.

PBL
Dx 2016 - Stage IV, Primary bone fNHL - 6xR-CHOP + 12xMaintenance Rituximab
Currently in remission - some circulating rogue cells in peripheral blood

Pwhitefl21
Posts: 15
Joined: Jan 2021

Hope to know soon on my status by early to mid-February, and I am glad you are progressing well. 

Pwhitefl21
Posts: 15
Joined: Jan 2021

PBL:

 

Out of curiosity, how long after diagnosis, did you start R-CHOP?

PBL
Posts: 291
Joined: Jul 2016

... and my disease had taken hold of all of my left pelvic bones. I got a final diagnosis about six months after a spontaneous pelvic fracture, and started chemotherapy a few weeks later - after a cardiac ultrasound and getting my port implanted.

However, to maybe better answer your question, I think it necessary to say that I had had progressively worsening hip pain over the course of several years prior to the fracture. In fact, the problem was so clear to me that when we got our house built, I absolutely insisted that it had to be a one-level house, so I wouldn't have an issue with climbing and going down stairs - and we moved into that house six years before the fracture happened. That, and other unexplained symptoms that had been going on for even longer, and were, in retrospect, signs of lymphoma...

So, I guess you may say that I had had lymphoma for several years - unbeknownst to me as well as to my GP. If it had been diagnosed as lymphoma at an early stage, obviously, periodic monitoring would have very likely avoided letting it damage my bones so much, and some kind of treatment would have been initiated before that could happen. 

Pwhitefl21
Posts: 15
Joined: Jan 2021

Pet-scan came up with a node in stomach area. Node in the neck has gone back to normal. Outside of the node, all bloodwork normal. watch and wait was the recommendation. Will do a CT scan after 3 months to monitor size.

 

 

PBL
Posts: 291
Joined: Jul 2016

Hi again,

One active node in the abdomen with the initial site having returned to normal is pretty good news! How are you adjusting to your diagnosis and the proposed course of management at this point?

Pwhitefl21
Posts: 15
Joined: Jan 2021

I am sure that anyone that hears watch and wait is skeptical, but I had read sufficient on the subject, so I understood that it is an accepted treatment option. I feel optimistic based on all I have heard, and the conversations with the doctor. I guess the next stresful moment is when I will have the next CT scan, and wondering if the node grows?  

ShadyGuy
Posts: 632
Joined: Jan 2017

looked at any other cause beyond or instead of cancer? RA, Lupus, chronic viral infections and a host of other things can cause this. Why the fixation on lymphoma?

Pwhitefl21
Posts: 15
Joined: Jan 2021

They did. When they did an initial biopsy on the node in my nexk, it showed some cells consistant with follicular lymphoma.

PBL
Posts: 291
Joined: Jul 2016

... That's what it's called. If you feel too much apprehension as the date for your next imaging and/or appointment nears and you find that you cannot remain rational about it, you may want to open up about it with your GP and ask for a mild anxiolytic.

Rocquie's picture
Rocquie
Posts: 848
Joined: Mar 2013

I was diagnosed with Follicular lymphoma in September 2012. Because it had transformed and I had become very symptomatic, I was treated aggressively. About a year and a half after treatment, the oncologist called and told us the cancer was back. His plan was to scan again in 4 months as long as nothing changed. The follow-up scan showed no change, all my blood-work was normal, and the doctor felt my disease was stable. That was in 2016--5 years ago.

About 6 months ago, I had a CT scan for another doctor for non lymphoma reasons. The radiologist reading the scan noted that the mildly enlarged periaortic lymph node had not significantly changed. 

In essence, I have been in "watch and wait" for almost 6 years. I am not anxious or worried about this, despite my lymphoma history. I feel good and have no lymphoma symptoms. My hematology/oncologist follows me with regular checkups. And I have no desire to go through any more treatment unless absolutely necessary.

I wish you peace. . .

Rocquie

 

Pwhitefl21
Posts: 15
Joined: Jan 2021

Thank you Rocquie. Definately a whirlwind of emotions since November for me.

Pwhitefl21
Posts: 15
Joined: Jan 2021

Have any of you either researched personally, or discussed with your physician, in taking Matcha and/or Turmeric to help is living with Cancer. I have read some positive articles, but am curious as to your thoughts?

Rocquie's picture
Rocquie
Posts: 848
Joined: Mar 2013

I believe that if you want to enjoy Matcha tea or use turmeric in your cooking, you will be just fine. They probably have health benefits, but I wouldn't count on them to treat cancer. I believe in food as medicine and keep a very healthful diet. I use several nutritional supplements, but I took none while on treatment. My doctors are aware of everything I take.

Best,

Rocquie

 

 

Pwhitefl21
Posts: 15
Joined: Jan 2021

Thank you. I am on watch and wait, so no treatment yet. I have changed my diet and lost 10% of body weight.

 

I was just wondering if a healthy diet, and these supplements, will potentially lessen the change of the Follicular Lymphoma of becoming active and requiring treatment.

PBL
Posts: 291
Joined: Jul 2016

...is always a good idea - especially when facing cancer.

However, and I am of the same opinion as Rocquie:

No amount of "dietary supplements" is likely to eliminate your cancer. At best, they will not do much harm, although the money you put in those would be better invested in your diet. I would encourage you to discuss that point with your hematologist before you start buying and taking anything.

- A healthy varied diet (that means steering clear of industrially processed "food" and preferring home-cooked fresh produce, a little fresh fish, keeping meat - especially cured meat - to a minimum, eating organic whenever possible),

- maintaining a healthy weight,

- exercising with an aim to make a good percentage of that weight lean muscle mass

- practicing mindfulness on a daily basis...

that is what is most likely to help you keep your cancer in check, and if it ever comes to you needing chemotherapy, being healthy at your core is your best guarantee of coming out of it in relatively good shape.

I understand your need to feel like you are "doing something" against cancer, and a "quick fix" is a tempting notion, but there are no "magic pills", unfortunately...

Kind regards,

PBL

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