1. < Blood Cancers & Disorders

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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kittykiernan | @kittykiernan | Sep 4, 2019
In reply to @kittykiernan "Nope no one does nothing for me" + (show)
@kittykiernan

Nope no one does nothing for me

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Chronic Epstein barre causes it , I have it and I am brca 2 positive had full mastectomy and hysterectomy

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kittykiernan | @kittykiernan | Sep 4, 2019
In reply to @gingerw "@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer..." + (show)
@gingerw

@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger

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Nope no one does nothing for me

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 3, 2019
In reply to @kittykiernan "I know I have this from my chronic Epstein barre virus plus had breast cancer Barca..." + (show)
@kittykiernan

I know I have this from my chronic Epstein barre virus plus had breast cancer Barca 2 positive, have every symptom, I feel like I’m dying and NO one will test me for this

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@kittiekiernan Have you been examined and tested for this? If your primary dr will not refer you to a specialist, can you appeal to your insurance for help?
Ginger

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 3, 2019
In reply to @travelgirl "I just want to check in with all the Lymphoma Warriors out there. How is every..." + (show)
@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 @beckyjohnson @scootermckim @vanveer21 @mrsalvingraves3 @zellheff @pammyzammy @roberthall0452 @dianebumbach @sograteful
I recently moved and been on and off the last few months. Doing new house stuff and work has picked too.
I haven't had chance to see how you are all doing?
I been tired like usual but not sure if its from moving, working or a toothache I been dealing with.
Both me and my husband have had issues since going to the dentist to get our teeth cleaned. UGH.. Nothing worse than a toothache.
How have all your check up's been going?
I do hope you are all doing well?
Jackie

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@travelgirl This is my first post on this group. Last week i went to my new hematologist-oncologist. In Oct 2017 my oncologist told me I had MGUS, after a bone marrow biopsy, and had been monitoring it every three months. Last December she decided to wait for six months. Wrong thing to do. All my blood values went wonky. I also am Stage 3b kidney disease, and those values were off their normal, too. In the midst of all this, I moved to another state. My new h-o told me "I see you have low-grade Non-hodgkins Lymphoma for 2 years, so you've had a while to get used to this, and now these possible complications". I was so stunned I didn't tell him the other h-o hadn't told me that, ever. All I was ever told was MGUS. I have a bone marrow biopsy in 2 weeks, with a consult with new nephrologist next week; hoping to not repeat the kidney biopsy. Because of the complicated case of NHL + kidney issues, they have to look at everything. No drama from me, I want the facts.
Ginger

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kittykiernan | @kittykiernan | Sep 2, 2019

I know I have this from my chronic Epstein barre virus plus had breast cancer Barca 2 positive, have every symptom, I feel like I’m dying and NO one will test me for this

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2 replies
chuck218 | @chuck218 | Sep 2, 2019
In reply to @vonbaron36 "I've been on watch and wait for four and one half years, with Non Hodgekins lymphoma,..." + (show)
@vonbaron36

I've been on watch and wait for four and one half years, with Non Hodgekins lymphoma, no treatments in five years.

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Hope you have many more years of W & W.
I was on W & W for a year and started treatment in July because nodes were getting larger. Treatment of Rituxin & bendamustine is not to bad. Nodes shrunk after first treatment.

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vonbaron36 | @vonbaron36 | Sep 2, 2019

I've been on watch and wait for four and one half years, with Non Hodgekins lymphoma, no treatments in five years.

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1 reply
fwpoole | @fwpoole | Aug 31, 2019
In reply to @ginpene05 "I was also having routine testing, an endoscopy because of chronic nausea and weight loss, when..." + (show)
@ginpene05

I was also having routine testing, an endoscopy because of chronic nausea and weight loss, when a node was found. The biopsy was unremarkable, but the Md insisted to the insurance company that I needed a Pet scan. It showed an egg shaped mass in the small intestine. It was removed with resection of part of the small intestine, and the biopsy showed both indolent follicular and large diffuse lymphoma. So I had surgery. They said I had Stage 1 NHL and recommended chemo, which I did. Now they say I am cured. But I think that if it had only been follicular that they might have suggested the watch and wait. I know it is scary not to have them throw everything they've got at it, but I also hear lots of folks do the more conservative approach. As long as the nodes are shrinking, I would probably watch and wait, too. I hope you contine to do well. gp

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@Ginene05 - Just curious, did you have 3 cycles of RCHOP or 4? The NCCN "guidlines' for stage 1 or 2 NHL is 3 cycles + radiation. But, since your tumor was removed, I assume your didn't have radiation. Im asking because Im in the same boat, having a NHL tumor removed from my large intestine with no metastasis, so nothing to radiate. Ive finished 3 cycles of RCHOP and consider my treatment done. My oncologist says one more cycle is necessary. Ugh!

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sograteful | @sograteful | Aug 17, 2019

Thank you Njnana, for describing your rash experience. Mine is suspicious as it just doesn't change, whatever I rub on it. I also thought ringworm when the cortisone cream had no effect, so I used an antifungal, no change. It is aboutvthevdize if a quarter. It gets redder after a shower or bath. I will go get it checked and let you all know.
If it wasn't for my swollen neck glands, that started last July, 2018, I would never have suspected anything out of the ordinary. I have never heard of Morphea, I will research it now.
Jackie, I read the news about your tooth. I hope it's improving, keep us posted.
Bridget

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sograteful | @sograteful | Aug 17, 2019

Please keep us posted on your tooth Jackie..

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