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

@vonbaron36

Three and 1/2 years ago I had a large tumor on my neck and a small one by my groin, both cancerous.I had radiation on both. A pet scan showed no cancer. There was nothing to do but watch and wait to see if and where it would occur again. I knew my follicular lymphoma was incurable at the time. I did not want to just wait until it came back, and with no other options I decided to research other options on my own. I decided to try curcumin. Over three years later and two PET scans and a CT scan last month found no cancer. I know that it can go into remission on its own, but it makes me feel better doing something that might be helpful. Next PET scan next March.

Jump to this post

Hi, May I ask how much curcumin you took? I am trying 1200 mg per day with 10 mg black pepper Bioperine. Thanks.

REPLY

I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs every morning for breakfast. Its been four years now and no cancer. As a bonus I also have no arthritis problems and I am 82 years old. Still have my fingers crossed. Good luck.

REPLY
@vonbaron36

I take 1000 mg. curcumin, once a day, Also I sprinkle turmeric on my boiled eggs every morning for breakfast. Its been four years now and no cancer. As a bonus I also have no arthritis problems and I am 82 years old. Still have my fingers crossed. Good luck.

Jump to this post

Also my curcumin has BioPerine for absorbtion. And I use pepper on my eggs also.

REPLY
@vonbaron36

Also my curcumin has BioPerine for absorbtion. And I use pepper on my eggs also.

Jump to this post

Thank you! About the same. I hope it helps, but I figure it cannot hurt. Wishing you continued good health.

REPLY
@susanlim

Thank you! About the same. I hope it helps, but I figure it cannot hurt. Wishing you continued good health.

Jump to this post

They would not consider radiation for me because possible region too big (neck and both armpits). So watch and wait.

REPLY

@susanlim Welcome to connect @vonbaron36 Do either of you take Vitamin C ? When I was first diagnosed and my lymph nodes were enlarges I started taking that. Vitamin C is good immune booster. One food I ate regularly was Sweet potatoes that has some good vitamins to help boost our recovery. Lots of lean proteins. My lymph nodes shrunk by themselves and with NHL they do go up and down in size. I was told by my Dr that Radiation and chemo does not cure or extend a persons life with NHL. They found a watch and wait to more effective since the lymph nodes are known to go up and down in size. Exercise helps us. Which I have trouble staying consistent with. Read about Vitamin C and ask your Dr about trying to take a larger dose will benefit you?

I wish you the best Jackie

REPLY
@travelgirl

@susanlim Welcome to connect @vonbaron36 Do either of you take Vitamin C ? When I was first diagnosed and my lymph nodes were enlarges I started taking that. Vitamin C is good immune booster. One food I ate regularly was Sweet potatoes that has some good vitamins to help boost our recovery. Lots of lean proteins. My lymph nodes shrunk by themselves and with NHL they do go up and down in size. I was told by my Dr that Radiation and chemo does not cure or extend a persons life with NHL. They found a watch and wait to more effective since the lymph nodes are known to go up and down in size. Exercise helps us. Which I have trouble staying consistent with. Read about Vitamin C and ask your Dr about trying to take a larger dose will benefit you?

I wish you the best Jackie

Jump to this post

Thanks!

REPLY
@travelgirl

@susanlim Welcome to connect @vonbaron36 Do either of you take Vitamin C ? When I was first diagnosed and my lymph nodes were enlarges I started taking that. Vitamin C is good immune booster. One food I ate regularly was Sweet potatoes that has some good vitamins to help boost our recovery. Lots of lean proteins. My lymph nodes shrunk by themselves and with NHL they do go up and down in size. I was told by my Dr that Radiation and chemo does not cure or extend a persons life with NHL. They found a watch and wait to more effective since the lymph nodes are known to go up and down in size. Exercise helps us. Which I have trouble staying consistent with. Read about Vitamin C and ask your Dr about trying to take a larger dose will benefit you?

I wish you the best Jackie

Jump to this post

No I didn't take vitamin C. In fact I don't take any vitamins.

REPLY

Hi. I am in England. I was diagnosed with Follicular NHL in August 2000. I had to start treatment as I was stage 3 as my GP had said I was having an early menopause – I was 46 at the time). I had 5 rounds of FMD as Rituximab was too expensive then. I went into molecular remission. In 2011 a lump came up on my head. My GP said it was a cyst but it grew so large I was referred to the Sarcoma specialist. Long story short it was extra nodal NHL. I had bendamustine first but the tumour regrew and I had radiotherapy. Two years ago I started with abdominal pain and only a slightly enlarged spleen was obvious on an ultrasound. I was diagnosed with IBS!! Forward to this August and I started having pains in my left side and between my shoulders. A new GP sent me for an ultrasound which showed a Splenic Cyst and slightly enlarged liver. I have also had a colonoscopy and that was clear. Hopefully I will get answers after the CT scan and seeing my Haematologist next week.

REPLY
@bordercolliecra

Hi. I am in England. I was diagnosed with Follicular NHL in August 2000. I had to start treatment as I was stage 3 as my GP had said I was having an early menopause – I was 46 at the time). I had 5 rounds of FMD as Rituximab was too expensive then. I went into molecular remission. In 2011 a lump came up on my head. My GP said it was a cyst but it grew so large I was referred to the Sarcoma specialist. Long story short it was extra nodal NHL. I had bendamustine first but the tumour regrew and I had radiotherapy. Two years ago I started with abdominal pain and only a slightly enlarged spleen was obvious on an ultrasound. I was diagnosed with IBS!! Forward to this August and I started having pains in my left side and between my shoulders. A new GP sent me for an ultrasound which showed a Splenic Cyst and slightly enlarged liver. I have also had a colonoscopy and that was clear. Hopefully I will get answers after the CT scan and seeing my Haematologist next week.

Jump to this post

How can I delete my posts as I put it on the wrong board. It shouldn't be on Watch and Wait?

REPLY
@bordercolliecra

Hi. I am in England. I was diagnosed with Follicular NHL in August 2000. I had to start treatment as I was stage 3 as my GP had said I was having an early menopause – I was 46 at the time). I had 5 rounds of FMD as Rituximab was too expensive then. I went into molecular remission. In 2011 a lump came up on my head. My GP said it was a cyst but it grew so large I was referred to the Sarcoma specialist. Long story short it was extra nodal NHL. I had bendamustine first but the tumour regrew and I had radiotherapy. Two years ago I started with abdominal pain and only a slightly enlarged spleen was obvious on an ultrasound. I was diagnosed with IBS!! Forward to this August and I started having pains in my left side and between my shoulders. A new GP sent me for an ultrasound which showed a Splenic Cyst and slightly enlarged liver. I have also had a colonoscopy and that was clear. Hopefully I will get answers after the CT scan and seeing my Haematologist next week.

Jump to this post

This is fine here.. I think it's ok?

REPLY
@bordercolliecra

How can I delete my posts as I put it on the wrong board. It shouldn't be on Watch and Wait?

Jump to this post

@bordercolliecra I think it is fine being posted here. But I will tag Colleen and she can make the final call @colleenyoung

REPLY
@bordercolliecra

Hi. I am in England. I was diagnosed with Follicular NHL in August 2000. I had to start treatment as I was stage 3 as my GP had said I was having an early menopause – I was 46 at the time). I had 5 rounds of FMD as Rituximab was too expensive then. I went into molecular remission. In 2011 a lump came up on my head. My GP said it was a cyst but it grew so large I was referred to the Sarcoma specialist. Long story short it was extra nodal NHL. I had bendamustine first but the tumour regrew and I had radiotherapy. Two years ago I started with abdominal pain and only a slightly enlarged spleen was obvious on an ultrasound. I was diagnosed with IBS!! Forward to this August and I started having pains in my left side and between my shoulders. A new GP sent me for an ultrasound which showed a Splenic Cyst and slightly enlarged liver. I have also had a colonoscopy and that was clear. Hopefully I will get answers after the CT scan and seeing my Haematologist next week.

Jump to this post

Hi @bordercolliecra, you can copy and paste your message to this discussion:
– Non Hodgkin's lymphoma https://connect.mayoclinic.org/discussion/non-hodgkins-lymphoma-2c0eb7/

Once you've done that I can delete it from this discussion. Although, @travelgirl is right. It's okay here too.

REPLY

Jackie, I was just told yesterday my treatment for marginal zone lymphoma will be watch and wait. The only symptoms I have is swollen lymph nodes. I am really happy about that decision. I am glad to hear you are going on two & half years and hope many more for you.

REPLY

@chuck218 That's great you are on watch, and wait. It is my understanding some lymphoma patients can go an entire lifetime without ever needing a treatment. Let's hope you and I can be those patients 🙂 ..
My lymph nodes go up and down in size too. My last ct scan showed a few had increased a couple millimeters. So now I need anorher ct scan in six months. My last scan was a yearly scan.
How often are you getting CT Scans?

REPLY
Please login or register to post a reply.