Non Hodgkin's Lymphoma- Watch & Wait Approach

Posted by Jackie, Volunteer 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

Liked by beckyjohnson

@chuck218 I am now 3 yrs on a watch and wait routine. Through the course of these three years I have had all kinds of feelings and thoughts. And to make it even worse I was also diagnosed at the same time colon cancer. How do you survive double trouble, 2 cancers?

The word cancer itself is frightening.. I have always associated that when you get cancer your done with life. It is very difficult to cure this disease. Most people do not make it. That was what I believed or knew. Especially sitting on the internet reading. The information is outdated and god only knows what truth is. I had to stop reading everything I came across.

The day I was diagnosed with cancer time stopped. I put several things on hold to see how was this all going to pan out. Everyone I knew personally with cancer had passed away. I own my own business. I made a few calls in tears to see what it will take to close my company? I find it difficult to plan too far out. However I try and remind myself I feel fine. So Plan that trip..

I started doing things that I always dreamed of doing. Some crazy things and some not so crazy. I had to pull myself up from that couch and move. Go out and do things. Get off of the internet and only pop on once in while reading about the disease.

I can tell you what I have learned in three years of watch and wait. It means we are not dying anytime too soon. It just like having any other disease You now have to have a team of Dr's who check on you every few months. If we had diabetes we would be on a watch and wait too. Except we would be given insulin pills or shots to manage the disease. I have friends with Diabetes and they seem worse off than I am with my cancers. They have had amputations and now confined to wheelchairs.

Live your life as nothing is wrong, Some people on watch, and wait never have an issue. Maybe you are that one person, who lives a lifetime with this disease, and never needs a treatment.

Dr's are not good at telling us this. They get so wrapped up in the disease they forget they are dealing with people and our emotions. They don't realize to a layman telling us we have cancer is beyond devastating. It really messes with our minds.

Now I did make a few changes No More Smoking on and off. I gave that up completely now, and I don't drink very often. Just once in a blue moon. My acid reflux has cured me of drinking. But I know others who still drink with NHL cancers.

Ok I have to run to a meeting this morning. But I will be back on later …

The last few weeks I been beyond busy. Which I prefer to sitting around. 🙂

Jackie

Liked by njnana

REPLY
@travelgirl

@chuck218 I am now 3 yrs on a watch and wait routine. Through the course of these three years I have had all kinds of feelings and thoughts. And to make it even worse I was also diagnosed at the same time colon cancer. How do you survive double trouble, 2 cancers?

The word cancer itself is frightening.. I have always associated that when you get cancer your done with life. It is very difficult to cure this disease. Most people do not make it. That was what I believed or knew. Especially sitting on the internet reading. The information is outdated and god only knows what truth is. I had to stop reading everything I came across.

The day I was diagnosed with cancer time stopped. I put several things on hold to see how was this all going to pan out. Everyone I knew personally with cancer had passed away. I own my own business. I made a few calls in tears to see what it will take to close my company? I find it difficult to plan too far out. However I try and remind myself I feel fine. So Plan that trip..

I started doing things that I always dreamed of doing. Some crazy things and some not so crazy. I had to pull myself up from that couch and move. Go out and do things. Get off of the internet and only pop on once in while reading about the disease.

I can tell you what I have learned in three years of watch and wait. It means we are not dying anytime too soon. It just like having any other disease You now have to have a team of Dr's who check on you every few months. If we had diabetes we would be on a watch and wait too. Except we would be given insulin pills or shots to manage the disease. I have friends with Diabetes and they seem worse off than I am with my cancers. They have had amputations and now confined to wheelchairs.

Live your life as nothing is wrong, Some people on watch, and wait never have an issue. Maybe you are that one person, who lives a lifetime with this disease, and never needs a treatment.

Dr's are not good at telling us this. They get so wrapped up in the disease they forget they are dealing with people and our emotions. They don't realize to a layman telling us we have cancer is beyond devastating. It really messes with our minds.

Now I did make a few changes No More Smoking on and off. I gave that up completely now, and I don't drink very often. Just once in a blue moon. My acid reflux has cured me of drinking. But I know others who still drink with NHL cancers.

Ok I have to run to a meeting this morning. But I will be back on later …

The last few weeks I been beyond busy. Which I prefer to sitting around. 🙂

Jackie

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Jackie. Thanks for sharing your story. 3 yrs on W&W is good to hear. I will pray you stay on it a lifetime. Your story is helpful to me. I just started W&W three months ago so it is all new to me. I try to look at it as another challenge in life.
Thanks again and best of luck

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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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@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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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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@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.

Liked by scootermckim

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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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@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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@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”!

A260900B-5E49-45DA-8892-8BF7439D16C8

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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

Jump to this post

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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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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@stephaniet

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

Jump to this post

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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@ginpene05

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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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!

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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.

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