just diagnosed - what can i expect? Follicular Lynmphoma

genejohnson11

Follicular Lymphoma grade 3A/Stage 3

had cyst removed from scalp - found the cancer, cat scan from Jan 14th 2022 revealed spread throughout lymph nodes.

looks like we will start with CHOP chemo then radiation - but i have no start date or exact meds to be used...

would be be wise to cancel the trip to Germany next month and possible spring break in April - assuming I am staring Chemo very soon?

thanks any any and all comments or question - i am new to this and very scared.

Hilde

Hello Gene,

after my diagnosis : same as yours, in June 2018 after CAT scan, lots more tests, I started chemo in September 2018, 2 days every month for 6 treatments. Good tolerance and reaction (everyone is different).

I would have been able to travel in between treatments. If that helps your mental condition and doctors don't discourage you, Do It.

I am in survivor mode and hope to be comfortable for a long time, well-no spring chicken at 77.

Pluck up your courage, have a good trip!

Hildegard

genejohnson11

Thanks Hildegard, so they didn't start any treatment right away...interesting. so its not a big time sensitive rush to start the treatments then. i just turned 60 and just wanna make sure i make it to 77....

thanks for input!

Gene

PBL

Hi Gene,

I was diagnosed with stage 4 Follicular Lymphoma in late 2015/early 2016 and had 6 R-CHOP21 (i.e. infusion every three weeks) in the first semester of 2016. As Hildegard said above, there is generally no hurry starting chemotherapy for asymptomatic or paucisymptomatic Follicular Lymphoma.

One thing I think is worth mentioning straight away is the impact of the disease itself, as well as the treatments, on your immunity - immediate and long-term. Whether you consider travelling abroad or not, you may want to make sure you are up to date on your vaccines before you embark on any treatment scheme - especially in the current pandemic situation (but not just with respect to that).

What intrigues me is that you mention CHOP, without R (Rituximab), which is generally given for CD20+ lymphoma such as Follicular. Was that discussed at all?

genejohnson11

https://csn.cancer.org/discussion/comment/1692454#Comment_1692454

Hi,

yes, treatment will be R-CHOP…

good to know treatment start urgency does Rt matter much…was getting anxious.

and yes, I am up to date on everything my gp recommended prior to this diagnosis.

I did decided to cancel upcoming trips till after treatment course.

thanks for your comments!

PBL

OK, that makes sense. Since you say it will be R-CHOP, one practical piece of advice for you regarding that particular regimen is to discuss side effect management with your hematologist and/or nurse beforehand.

The Vincristine in R-CHOP, especially combined with the anti-emetics (and you absolutely need those to stay ahead of nausea) often causes severe constipation, which you must be aware of and have the appropriate arsenal to counter it immediately.

Increasing your daily hydration level (plain water only!) will contribute to managing that side effect, as well as helping your kidneys process the higher amount of waste (from all the dead cells) and wash out the Doxorubicin (the "H" in CHOP) which can damage your bladder if it lingers too long.

The 5-day course of steroid at the start of each chemotherapy cycle is often a source of complaint (although I haven't personally found it so bad myself) as it can affect your sleep and mood, and the withdrawal will leave you drained. It is part and parcel of the CHOP (it is the "P" in the acronym) as it plays a role in killing off cancer cells and sustaining you during treatment, so should not be tampered with.

As a rule of thumb, all events and side effects should be discussed with your medical team, and any change in treatment (even change in diet or supplements) must not be decided without them.

I hope this helps.

Hilde

I can see every treatment has variations. Steroids: one pill before intravenous (6 weeks). Followed by 8 treatments, intra-muscular , over 2 years, of Rituximab, called "maintenance".

I totally repressed in my mind, the present situation (COVID). You want to enjoy your trip to Deutschland. Better wait for " gutes Wetter".

Hildegard

genejohnson11

https://csn.cancer.org/discussion/comment/1692459#Comment_1692459

That helps a lot!! I meet Monday with the nurse to review all the above, next is the iv port

Max Former Hodgkins Stage 3

Welcome to you, Gene. The most important thing you can expect from R-CHOP against Stage 3 follicular is being cured. Although oncologists for many years have avoided the word 'cure,' if you go straight into full remission after treatments, and never see the disease again, why trifle over definitions. Follicular is one of the most indolent, or slow-moving, of all of the 60 or so strains of NHL. And while it is statistically less likely to remain in full remission than many other strains of NHL, MOST patients with it do not relapse after full remission. And even those who do are mostly well controlled in various maintenance programs later, for years or even decades. While there is definitely no need to rush beginning R-CHOP, I would make treatment my lead priority until it is over. Just me, but I would not travel to Germany, or much of anywhere at present. And as another wrote on this thread, travelling on R-CHOP, or any harsh chemo regimen, is a risky adventure, logistically, at least.

ShadyGuy

since the #1 actual cause of death in FNHL patients is infections and considering the current pandemic you may want to seriously consider delaying your overseas trip. According to NCI 33% of the people who die of FNHL die from infections. Just a thought with some numbers.

genejohnson11

Yes good advice, I have cancelled both trips…

gene

tgyphilly

+1 on the importance of staying hydrated. I was not provided that guidance with my ABVD treatments and I definitely suffered because of it. Good luck!

genejohnson11

Thanks, good advice, something would not have though of

gene

po18guy

Sorry to hear of your diagnosis. It may not be as dire as you suspect. Lymphoma spreading to the lymph nodes is bad news with most cancers, but it is where lymphoma lives, so to speak. It can be treated successfully at all stages, and research into follicular lymphoma is active and on-going. Knowledge is power. Have a look at the information pages at the Leukemia and Lymphoma Society:

https://www.lls.org/sites/default/files/file_assets/PS50_Lymphoma_Guide_2020_rev.pdf

The Lymphoma Research Foundation:

https://lymphoma.org/wp-content/uploads/2021/12/LRF-Non-Hodgkin-Lymphoma_Factsheet.pdf

The more you know, the more confidence you will have in this fight.

Rocquie

https://csn.cancer.org/discussion/324644/just-diagnosed-what-can-i-expect-follicular-lynmphoma

Hi Gene, and welcome to the site. I hope you get the support you need and want. I sure have! My Doctor tells me Follicular lymphoma is not curable but is treatable. Mine has been in remission 10 years and he tells me the longer I go, the less likely I will ever relapse.

What can you expect? You have gotten some good reports from others. One thing I have not seen here is: expect to lose your hair--all of it.

As you go a long, you will learn much more. I was treated with R-CHOP 8 times, followed by 2 years Rituxan maintenance. I will be more than happy to talk with you about any part of it.

Meanwhile, take it easy on yourself!

Hugs,

Rocquie

ShadyGuy

Gene

Rocquie and Evarista are both very experienced, very sharp, articulate and knowledgeable of FNHL. Also no BS from either. They have both helped me. Max also has very wide knowledge of lymphoma in general and is very well versed in locating info and sources of support.

Myself I was diagnosed with FNHL in late 2011. Mine was stage 4 including bone marrow, I have relapsed but i am still kicking and enjoying life. There will be down days during treatment but try to stay positive! Your longterm outlook is very, very good.