New diagnosis Follicular and new to this group With questions

After examining an enlarged lymph node in May the doctor told me I have follicular lymphoma. The PET scan and bone marrow indicated the organs and bones are clear. This is indolent and non-aggressive. I am in the wait and watch mode.

The main question I have is what to expect in this time when all are indolent. Normal energy and health, or indications of the follicular lymphoma? If so, what would those signs be?

Also should I have a program as if the lymphoma is active - like lots of water, rest, whatever - or just carry on until it appears?

Better go easy on the acronyms I see. They still need translation for me.

Thanks.

Hey Tad-
Be assured that you are not alone, and that many others share these question and thoughts with you. I was in the watch and wait for over three years...and that's what it is. Watch and wait, and you will feel the way you do now. I was always a little tired, so the tireness just continued. This became a convenient way to really only do things I wanted to do, and eliminating when posible stressful situations. I guess I became selfish with my time, and removed negative thinking people from my interactions. You will probably see your Dr. every three months, and your blood counts will be monitored. I became anemic over time. Rest, eat healthly, maintain a healthy life style, keep postive thoughts, embrace upbeat people, and shun negativity are all ways to help.Some people never need treatment. Some need it sooner. Either way-now that i am on treatment, it's not so bad...my imagined treatment was far worse than the real thing. Treatment has come a long long way. Good Luck to you.
Geri
B-Cell, Outer margins,lymphoma,
Stage Three
Three out of Eights R-CHOPS completed.
still have hair

Thanks, Geri. Good perspective on this. Very helpful. I’m convinced that the mind affects the immune system, so your counsel fit right in. So far I have had no signs of illness - other than the biopsy. That wasn’t so long ago - May - so maybe I’m in a stage so early that the symptoms aren’t evident. I’m feeling in good shape. We’ll see. Lots of garlic, prayer, good attitude, and good things to do.

Glad to read that your treatments are not disturbing. I hope that continues.

Tad

I have been in treatment for a year with my follicular lymphoma, it is all about the swelling when it occurs, at least thats what my onc looks for. Symptoms can vary as with anything, your body is going to tell you when somethings not right, fever..aches..swelling..lack of energy.
As far as a program its common sense approach, try to stay away from sugars as best you can for sure. A good diet is not a bad thing in any aspect but just staying well hydrated
take care to stay away from sugars, well rested should get you started to a good frame while you decide whats right for you.
I hope you keep us posted on how your doing.

Thanks for writing, Linda. Yes, sugar doesn’t go well with anything! I’m getting lots of garlic and fish. I monitor what my body is telling me. So far no news and that’s good news. Your list of things to watch is helpful. Thanks. I hope your year gives you plenty of recovery time.

Tad

Hi, Tad, I also have FNHL and am doing watch and wait since last May when I was restaged to 3. I think W+W requires a high degree of discipline. In addition to eating right and getting the rest you need, you need to be monitoring yourself for subtle changes that may present, noting them and then communicating them to your care team. For example, I have a tumor in my right armpit which I can feel. Every 4 to 5 days, I re-examine that area. I have noticed that I now have more lumps and bumps in that area than I did in May. I will report this to my oncologist and, if past is prelude, he will schedule me for an office visit and do a physical exam and bloodwork. Based on the findings, we may do another PET sooner than planned (due in November).

Also, monitor your weight closely as a 10% loss is considered a B symptom and should be reported along with others such as night sweats if they occur.

The waiting part is counter intuitive in the face of cancer but if you are reasonably healthy and can maintain your normal lifestyle, it really is the right thing for a low grade FNHL patient to do, given the prognosis today.

btw, what stage are you? If Stage 1, did anyone mention the possibility of localized radiation to try and get a kill on the lymphoma? That is when that is possible and it is successful in about half the cases. I had two rounds of 20 each and it didn't work but I would do it again for another shot at killing the cancer at an early stage.

Good luck and good health,

kermica

A quick update for those interested...

I called my onc about the change in lump pattern I mentioned above. His office called today and they want to schedule another CAT and another PET/CT as soon as we can. Still working on the dates but it looks like another set of scans coming up. This is how things are supposed to work in watch and wait (more like watch and check) so I am pretty calm about it all. Its interesting that we moved right past the office visit but since it is the images that tell the story I appreciate the quick movement toward getting the facts.

Have a good weekend and good health,

hi Tad good luck with this. I am in remission since 1-08 or 32 months. Mine was stage 4 small cell. I went to 4 different doctors and hospitals looking for better answers. Each one found more concerous cells until I hit the stage 4 level. They all jointly decided on the RCHOP treatment. Looking back I was the agressive one. My first doc wanted to watch it and wait. Probably would not have hurt, but I keep pursuing diagnoses until that was the best option.
After the fact and now that I understand the lyphoma better I may have decided to wait because once you get aggressive by using RCHOP you take away the ability to use it again. RCHOP is the best treatment out there, at least to my understanding. Put it off as long as possible.
They could not do radition on my becasue it was so widespread.
I may have a few option in the future but one will be stem cell. I do not look forward to that one.
time is on our side because there is a lot of research being done. Put off and maybe in the short term we will continue to see great advances in our option for treamnets.
I have been clean for 32 months and plan on remaining that way for a long time to come.
Mentally thou it is always present in my mind that a lump can come up at anytime. That is the hardest part in dealing with this. That is gods will and out of my control.
A great site put on by a fellow fNHL survivor from Canada is http://www.lymphomainfo.net/nhl/follicular.html There is a small cost yearly fee of 25.00. But the information is worth it. He is a 20 year survivor after 2 remissions. Commen since approach. I am in no way affiliated with him but do enjoy his monthly letter and update of recent developments.
Sorry this is so long of a letter. We are out here with you and do understand what you are going through. Good luck,
Bob

My wife was diagnosed NHL B cell marginal indolent (not folicular) a couple of weeks ago. Pretty early but once the diagnosis was made, they moved agressively to attack it. She is getting 4 infusions of Rituxan only.

Has just completed the first treatment on Friday, no side effects other than fatigue and food tastes bad. They used a protocol for the first infusion of increasing the flow every 30 minutes starting at 50 ml. About 20 minutes into the treatment she reported tightness in her chest. They immediately stopped the treatment and ran straight dextrose for about 20 minutes and then restarted at 25 ml. They were then able to go the rest of the way without further issues. To counteract any other possible side effects she was given in the IV benedryl and something else for nausea.

The next morning she felt fine so she did an hour of exercise and then had to spend the rest of the day in bed (Yes, she is a smart ***)

Diagnosis actually took place over 6 months. An annual checkup disclosed anemia. Iron supplements didn't resolve so she had some upper and lower GI tests which did disclose an ulcer which could have caused it. That was treated, resolved but still didn't resolve the anemia so she swallowed a camera (not my good Nikon though) which also showed nothing. At that point whe was referred to a hemotologist who was able to have full tests including bone scan, pet scan and more specific blood tests to confirm diagnosis in a about three weeks total.

There was no question about treatment now. I don't understand this watch and wait stuff. Why would you wait when you have it early enough to kill it with Rituxan only instead of chemo?

Leeh

Leeh, every case is different. I did go straight to treatment after diagnosis and had 40 rounds of radiation in an effort to kill the cancer, which was not successful. The reason with follicular lymphoma to wait is that the disease tends to return and treatment options become limited as you use them up. So, the thinking is that, if lifestyle is not being adversely impacted and the treatment will have the same effect later as it will now, there is no compelling reason to impose the toxicity tax of treatment.

The other fact is, with FNHL, the standard treatment is a combination of chemo and rituxin so I don't get to dodge the chemo bullet, either way. They are both in my future, it is just a question of when. The studies indicate that there is no measurable difference gained in outcome whether one starts early or not. Given the fact that it will, in all probability return anyway I am happy with the decision I made to do watch and wait.

Good luck and good health to your wife. Will she be doing maintenance therapy after the treatments finish?

Regards,

kermica

Aha! Now I understand and it makes sense to me now. There are a lot of different kinds of NHL. It is harder to get a handle on it. I had bladder cancer with a radical systoprosectomy and neobladder (two years out now - no chemo necessary). Much simpler, not so many variations.

No maintenance therapy has been discussed yet. I suspect they will wait to see the response to the rituxan first. The Hemotologist explained that anything else at this point would be overtreating for now. Treatment decisions are recommended after a review committee.

My wife wanted to know how I get used to having had cancer. I told her I would let her know when I did. Frankly I would rather be on the patient side rather than on this side. It is alot harder to watch it play out.

Thanks,

Lee

Kermica - well stated and good luck with the tests and results. Glad you had the opportuinty to do the watch and wait a while. Maybe luck will continue on your side. I hate that aI have pretty well used up the rituxan. There are other options just not as good. Good luck.

Good comments all. You just need to be in tune with your body, monitor trends you note (weight loss, being more tired, changes in your appetite), and keep regular appointments for blood work etc. After my course of R-CHOP, and a negative pet, I have myself on a wholistic approach. I shun sugar, choose whole wheat over plain white,& eat a balanced diet with veggies and fruits. I read labels like crazy, because manufacturers put additives such as high fructose corn syrup & preservatives in everything-ketchup, barbecue sauce, etc. I don't believe any one thing causes lymphoma, but I try to approach things in their "natural" state. For myself, I take an fish-oil supplement, an antioxidant, & a good general bio-available vitamin. And I try to walk/hike a couple times a week.
Good luck--stay positive!!!!

The good new I suspect is you are a stage 1 or 2. My neice had stage 1, 12 years ago and chose to have radiation only due to being in nursing school and 2 kids. She is in total remission with nothing at all in 12 years. I would keep very positive.If its not in anything but a lymphnode or 2 i think you've got a great shot. I am stage 4 due to it being in my bone marrow and arm pits and groin. I dont have it in any organs. I think my case is more compliated. You have years to find new medicines and possible cures if you are a stage 1 or 2. Stage 3 and 4 seems to have a clock that tics a little louder, if you know what i mean. It sounds to me that it will all be ok. Find something to smile about and concentrate on that.

Hey everyone. Couldn't find the site and was too lazy to keep looking. (Hmmm, is laziness a symptom or just a personality flaw?) If it is, I've had this SLL all my life and didn't know it...LOL Getting ready for another check up first week of Nov. Last one showed no new growth in nodes, inspite of a summer of flare ups. I have been told to expect those, so now I don't freak as much when the nodes wax and wane. Little things in life seem to be causing more pain than the W&W now, like getting bucked off my horse and fracturing my fibula. That was last week and though no cast, trying to walk without a limp is causing me to limp more. Sooooo as time goes on, and if we can read this we are all thankful for that, I am positive on this W&W having now armed myself with all the info I could gather. As I wait for the "other shoe to drop" I find each day brings it's own specialness, as the song says, "Somedays are diamonds, somedays a stone". I will try to write sooner next time. Good Luck to all fighting these stupid mixed up cells who don't have a clue!

I guess I ***ume everyone knows me, (sorry I am a celebrity in my own mind). I am 55, have SLL, stage 4, no radiation (except by sun) and no treatment. Been off bread and cookies now for 4 weeks. (Not icecream though, this isn't hell you know!) Love this support site, great to hear from others dealing with this pain in the *** guest that doesn't know when to leave!

Hey KBeale-
You ARE a celebrity!! We all are.
Hope yer leg is better...I'm on my third week of my cold.(yuck)!!

Just got back from the Ortho and he said, "Wasn't expecting that knee to look so angry, hmmm, think we need to start some PT!" Was hoping to avoid that but maybe it'll be a good looking guy and I can pretend it's a massage. (Just kidding) NHL question, anyone else ever had the neck nodes shrink way down to hard lumps,(these were once the large ones before diag.) and they still remain tender? My last trip to MD Anderson they didn't scan the neck because now that I am staged they are mainly concerned with the organs. I have read that hard nodes a sign of the node being cancerous, and I am concerned that it might be a different kind which could spread differently than the SLL. Does that make any sense? My MD Anderson Doc has retired since my last visit so I get to break in a new one in Nov. Just wondering if I should push to have the upcoming scan do the neck also? Thanks!

Hi KBeale, As I understand things, lymph nodes are normally not tender if they have lymphoma involvement. I have read that indolent lymphomas sometimes regress spontaneously, which could be the reason for the node shrinkage. If it is lymphoma, they should feel kind of rubbery and not be tender. MDA is one of the best cancer centers in the States so you are at a good place with that. Regarding the PET scans, I have had 5 or 6 at this point and everyone of them was "ears to knees". Given the fact that lymphoma can travel literally anywhere in the body, I would be questioning my doctor if he/she said they were only going to scan locally when I was there for a status evaluation.

As far as the odds of a second type of cancer, I am sure that the odds are remote but not zero (I've had two, basel cell years ago and FL now). SLL is the variant of CLL that affects the marrow and lymphatic system primarily so I don't think it would be surprising to have nodal involvement with SLL.

I hope this helps, good health

kermica

ooo thankx for posting Kermica as I was looking for this post about the hard lump lymph node in the neck. My very first systom was a lump in the neck. Over the course of my w&w-thay and the subsequent lumps waxed and waned. Now, that I am 3/4 through treatment, the lumps have gone, but the original lump is still visible, but smaller. My Dr. believes that it remains as there is scar tissue. Makes sense to me, and I am just happy to have my neck back.