Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Alumna Mentor @travelgirl, Jun 15, 2018

I would like to meet others who were diagnosed with a lymphoma and are on watch and wait treatment.

I have been on a watch and wait lymphoma watch now for 2 1/2 years. I currently get blood work done every 6 months and a CT Scan once a year.
Has or is anyone else having the cancer monitored like this? Are there people who lived their whole life without ever getting treated for lymphoma?
Would love if we could share our progress on here.
Jackie

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@stephaniet

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

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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

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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

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@travelgirl

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

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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

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

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@travelgirl

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

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

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@travelgirl

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

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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.

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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

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@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.

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I too was diagnosed with low grade follicular non Hodgkin lymphoma over 3 years ago November 2015 and was found by a fluke .I have 5 lessons mostly in my abdomen and 2 are quite large almost 5” but I am told they are slow growing low grade. Since my diagnostic I have had 6 PetScans and each one shows a growth of 1/4” but I am told that is slow growing. I have not had any treatment and am on the watch and wait since I have nosystems. My last PetScan showed no growth and it’s the first time in 3 years. My metibolic heat is lower than it’s been in 3 years too. My Oncologist says it could reverse. I am keeping my prayers going and fingers crossed. Has anyone else heard of this happening?
Scooter McKim

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@vcollins

Same with me. Diagnosed almost 2 years ago with NHL nodal marginal zone lymphoma. Bloodwork every 6 months and annual scans. Learning to live with it but is annoying. Many others are not so fortunate.

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21/2 years that’s good. I hope you have many more without a problem. Good luck

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