Active monitoring for follicular lymphoma: Louize's Story

In this video, Louize, diagnosed with follicular lymphoma in 2015, talks about her experience of being on active monitoring (watch and wait) and of having chemotherapy treatment. Louize talks about how she has continued to live her life fully with follicular lymphoma and how she refuses to let this impact upon her work or on her role as a mother.

[Pam-njuk]

My husband has just been diagnosed with follicular lymphoma this week. Colorectal cancer in 2019 but so far he feels good, looks good, energy good, appetite good. I'm not seeing God showing up. I don't want to lose him. He is just 53. Waiting for referral to hemologist. Prayers for anyone fighting cancer of any kind. 😢

[roykinder]

I was diagnosed with Follicular Lymphoma in May of this year, they found it when I went for my yearly exam at my GP doctor. I was tired all the time, no energy, fatigue with a small amount of exercise, and in general just worn out most of the time. I'm 75 years old, my life has been very active as a Scuba diver, motorcycle rider, worked hard and played hard. I just thought I was getting older and that was the way of it, never even gave Lymphoma second thought. I've been put on the wait and watch plan also, no enlarged glands, no night sweats, no weight loss, just the damn fatigue.

[chrisj]

If I may say, Louise, you are very well spoken and made insightful points such as that you have accepted the lymphoma as your lymphoma, but it does not define you. That seems a good way to view it! Thanks for your little presentation!

[SidneySmith]

Thank you for sharing your story. I truly admire your positivity.

[vanessapage]

Thank you for sharing your story with us I found out this year I have Follicular Lymphoma I choose not to watch and wait even tho I to have no symptoms I staying frim in my Faith with God that this is the right decision for me.

[denisebaines]

I was diagnosed in 2015, 6 rounds of R Chop chemotherapy 2 yrs of maintenance took its toll on me . I'm doing great now my consultant & specialist nurse are absolutely amazing couldn't have done it with out them .

[tammyslaughter]

It's appreciated and so helpful that people share their story. I was diagnosed with Marginal Zone Lymphoma last May and since it's indolent I'm on a watch and wait protocol as well. Since it's stage 4 it does seem a bit strange to just wait. It's strange but the biggest fear I have is losing my hair when I eventually have to have treatment. My hair is very thick, red, waist length and I'm terrified to lose it. Strangely I survived a usually lethal stage 4 colon cancer with months of radiation and a year of chemo 5 years ago and I did NOT lose my hair. I was thin but generally other than friends and family people did not know I had cancer. I know it sounds vain but I've been through severe treatment and survived so I'm not afraid of treatment just afraid of losing my hair!

[PUAlum]

I just finished my sixth and final round of chemo for follicular lymphoma. Oddly, i didn't do much research while i was in it. Once it was done, i started looking up videos like this. Yours was so well and carefully made. I found it reassuring. Thank you.
(And greetings from Los Angeles).

[dspjpdd]

It’s good to hear your story I hope you’re feeling and doing well

[trevorcuthbert]

I am just now going through the early stages of my journey, with exactly the same type of follicular lymphoma, I to have been a very active person & was very surprised on my diagnosis
It is very reassuring to here of your journey
It sure changes your view of life
Take every day at a time

[Lordkhaors]

Thank you for sharing your story. I hope you recover well. Greetings from Colombia.

[jennas]

My mom just got diagnosed with this. She’s 71. I’m terrified but I don’t let her know that. I need to be strong for her.

[iswarlallguzadhur]

Very helpful with the precious clarification and explanation. Many thanks

[grahamrobinson]

Hi - Wow what a powerful and positive view you have and thank you so much for sharing your story. It is so long since I have been in touch with you (Debs tracked you down !). Best Wishes - Graham

[lisabullock]

Thank you for your story xoxo from San Diego California

[emotionalreleasecoachjde]

What scan did you have as all they do for me is a ultrasound on 1 or 2 spots. Not a full MRI seeing as i have discomfort everywhere.

[delmapayne]

I too have follicular lymphoma diagnosed 2010, two lots of chemo , just getting on with life

[kevinbraden]

Thank you for your story very helpful and informative

[russellstuart]

Hi Louise, I am awaiting a biopsy to confirm a diagnosis of cutaneous T cell lymphoma and your video has been very helpful to me . I am a 73 old male and have been fortunate to have had a relatively good life health wise ...eye problems, high blood pressure but, hey, I am now in my seventies . I am told that the cancer won’t effect my natural life span but I am more concerned with the quality of life I have to look forward to. Your video puts a positive slant on what has been upsetting news, for my family as much as myself - but I trust that you and I both enjoy what time we have left with lots of time for family and friends . COVID 19 throws yet another challenge into the mix which has truly changed the world and I suspect that having an immune system disorder is not good news with Covid ....more challenges ahead . Does anyone out there have a view re Covid and this blood cancer ..?