Non Hodgkin's Lymphoma- Watch & Wait Approach

@scootermckim Welcome to connect and thank you sharing. I have the same lymphoma as you do and have been diagnosed since January of 2016. They found several enlarged lymph nodes on me. I have only had one pet scan since I was diagnosed. But I have had several CT scans since then.
My hematology Dr. said, that out of every 3 people who have low grade follicular lymphoma, only 1 ever needs treatment. You can have this disease and live a whole life time with it. Sometimes it can transform but not in all patients.
The lymph nodes will go up and down in size . When I was first diagnosed I had a ct scan every 3 months for the first year. The second year it was every 6 months then I went to once a year. They shrunk in size with each CT Scan. Except when they let me go a year without a Ct scan. Then One lymph node grew a little bit. Now I'm back to a six month CT scan. I go back in March for my 6 month check up.
If you have no symptoms then I would not worry about it.

I just want to check in with all the Lymphoma Warriors out there. How is every feeling lately?
@bordercolliecra @susanlim @ginpene05 @vonbaron36 @njnana @stephaniet @vcollins @chuck218
I travel quit a bit, and been on and off the last month. I haven't had chance to see how you are all doing?
I have my 6 month check up to monitor my Lymphoma next month.
How have all your check up's been going?
I do hope you are all doing well?
Jackie

Hi Jackie, thanks! I am in my first month of treatment (recent diagnosis). Today is infusion #2 of 4. Last week was 8+ hours and I had a reaction, so expecting today to be another long day. Was a bit taken aback by finally realizing that, however well this treatment works, I will ALWAYS have lymphoma. Good thing I love my oncologist! I am feeling well except for less energy than I like and anxiety(a bit) about...well, everything 😊. Overall, very grateful for excellent medical care and Insurance.

@travelgirl funny to be called a Lymphoma Warrior...my sister just sent me this shirt, along with WonderWoman socks...shirt says “WARRIOR”!

This is absolutely awesome! We all need to be warriors to remain strong!

Thanks to everybody for checking in. After surgery and chemo in 2017 for stage 1 Non Hodgkins Lymphoma found on a fluke, my doc in January 2019 says I am cured and just need yearly checkups with PET scan, unless I have symptoms. So I feel pretty good, but worry about recurrences no matter what he says. I hope all of you do well. You all sound so much more challenged and braver than I feel that I have been. Hang in there, Warriors. gp

Thank you for responding.
@stephaniet I love your shirt. That is great.. stay strong and keep a positive mind. You can get through this.
I understand the anxiety. I go through that too, like every up coming CT Scan..
@njnana if we can keep our minds strong we can bet this. I have read about people and met people living a very long time with this disease. We just need focus on life and let the disease rule us
@ginpene god bless the treatment worked. Now just try and keep a strong positive mind. That's what I try and keep doing. Although I will admit when I get my blood work and ct scans I tend to get anxious.
We are all going to live a long time cause we are all warriors.
🙂
Jackie

Great shirt and nice photo. My friend sent me a poem when I was in chemo with a roaring tiger (my nickname)

Fate whispers to the warrior,
"You can not withstand the storm."
The warrior whispers back,
"I am the storm."

Hang in there. gp

This is awesome! I am going to share this with others. For those of us on 'Watch & Wait", I believe God (or whatever higher power that guides you) has given me this 'wait time' to help and encourage others through their cancer diagnosis and treatments. Everyone handles treatments differently....both mentally and physically. Since my last infusion in the summer of 2016, I have been making plans to go places and to work on renovations about which my husband and I have only been thinking. No more procrastinating. For me, having lymphoma forced me to consider my real purpose of my earthly life. Stay strong and help others to stay strong!

Was just diagnosed with fl about 6 weeks ago, 57 yrs old, airline pilot. Watch and wait. Luckily the faa medical staff was understanding of my asymptomatic status and gave me a special issuance medical certificate that requires reinstatement every 6 months with blood counts and scans. At least my life is not completely turned upside down yet. As soon as I require treatment I will be done flying unless I ground myself before then, since I will not take on my responsibilitie to my passengers and employer when I feel unfit. The only problem with the “wait and watch” , being a fairly active 57 year old, is to determine whether the normal aches and pains of everyday life are lymphoma related or not. Also, has anybody ever had a second opinion with a different outcome? Just wondering! Thanks for any input.