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

@travelgirl

@susanlim Glad you are doing well. I was told the night sweats have to be drenching where you need to change the sheets and your clothes. Worse than a so called hot flash.
@vanveer21 I am happy all is good. I need the energy to head to the gym so bad. I been really bad with move. Only getting to the gym 1 or 2 times a month. Ugh. Been walking the dog but not enough it has been brutal hot outside. Good Job for quitting smoking. It has been 4 years for me now since I quit smoking. I do hate the 15 pounds I put on. I cannot seem to get rid of it.
@njnana having no energy is a problem. I take forever to get out bed each morning. If I could just jump up and go to the gym each morning. That would be good. When I overly exhausted I drink a sugar free red bull. That seems to help give me a boost of energy…I agree on the heat and humidity here. Even my Dog cannot handle it. Last week I took her for a walk and she couldn't handle the humidity. I had to call my husband on the phone to come and pick us up. She drank a bottle of water i brought along and just was panting so bad she couldn't even walk. So I get it I wanted to lay down myself. LOL..
@sograteful Awww your poor Kitty.. Nothing worse than a sick pet you feel helpless trying to help. Hopefully the dermatologist can help you heal your sore.
My mouth is killing me right now. Tomorrow morning I see another dentist. He will be able to tell if I have an infection I hope?

Thank you all for responding. It is always good to hear we you are all doing great for the most part.I hope to hear from the rest I tagged in our feed. We give each hope by staying in touch every few months. Strange as it maybe a toothache makes me wonder if this is caused by Lymphoma? I think hmm is there a glad swollen in my or something? Having a chronic illness makes me wonder with everyone ache and pain I get.

Talk soon.
Jackie

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If you can get to the gym it might help with the fatigue

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@chuck218

wish you the best. many more years on W & W

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Thank you. I believe the body has 600 lymph nodes. So I can’t worry all the time about 6 or so I know are enlarged.

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@sograteful

Hi Jackie. I just saw your reply of last April. I am still the same. I have the enlarged glands in my neck. I have also developed a small red lesion on my left lower leg. I really don't know if it is related to my gland issue. It initiated about 4 months ago. I have applied cortisone cream, but it persists. I have never had anything like it before. Other than that I feel fine, no night swears or weight loss. I will go get this lesion looked at, and see what the dermatologist says. We have a health drama with our cat, she at 11 yrs old has developed seizures. So it's been weeks of investigation and treatment, that has taken up all my time this summer!
Enjoy your new home. We moved 2 years ago, I know how exciting but also fatiguing that is. Good luck with your tooth, my husband is going to see our dentist tomorrow for an emergency dental problem, teeth can be a pain, literally. Keep us posted..
Bridget

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Hi Bridget,
I read your message about the small red lesion and wanted to share my experience. I wanted to let you know about an autoimmune disease I have called Morphea, a localized scleroderma. It first appeared as a faint red rash about the size of a quarter on one shin & eventually on the other several months later. Over the next year, the faint red become brighter and then looked like a bruise. It did not hurt, itch or burn. I knew I had not caused the bruising. After it began to spread toward my knees, my concern became greater, I pointed it out to my primary care physician who sent me to a dermatologist who monitored the 'rashes' for the next few months. He biopsied the middle of this rash on one shin and the pathology report showed the Morphea. This dermatologist continued to tell me I was 'a very lucky gal' as the only other patients (3 total) he treated for Morphea also had an underlying disease. Fast forward 5 years since that diagnosis…..my lymphoma was diagnosed in 2015. All oncologists with whom I have met believe the lymphoma existed for several years before the diagnosis was made. My intent is to not scare you, but definitely have your primary care doctor and oncologist take a look at the rash. If they don't think it is a big deal, you may still want to have a dermatologist check it. I hope it clears up and disappears for you.

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So I went to the dentist today. He claims nothing wrong with my tooth he can see. the xray looks normal. Tooth looks fine. He thinks it is traumatized from clenching down so hard from grinding my teeth. I may have a possible crack that they would need to do a root canal. But to hold off. Cause the pain is not constant.

He wanted to know if I was stressed or nervous about anything in life? Me, No not at all being diagnosed with 2 primary cancers two weeks apart. Why would I be stressed and nervous? I go well I suppose this is a side effect of having Lymphoma and cecum cancer? You grind the hell out of your teeth…

Seriously anyone else have issues with grinding teeth ,so bad while they sleep they end up, with a sore jaw, and teeth clanging together so bad it hurts to eat?

They told me to take 2 advil when my mouth starts to hurt. Try not to bite down on the left side of my mouth.

It hurts so bad I barely ate last week… UGH These Dentists are torturing me..

Any advice besides putting whiskey on tooth? That what my friends said to do.. LOL..
Thanks
Jackie

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The dentist (or a more skilled one) should be able to make you a special anti-grinding retainer to wear at night. They make them now if lightweight clear plastic. But it must be properly done, or you will grind more. It will discourage grinding and protect your teeth.

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Why are people with no symptoms getting ct scans once a year? This exposes the body to radiation. What is the purpose?

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@colleenyoung

I'd like to bring @vonbaron36 into this discussion, who I believe is also on "watch and wait" for non-Hodgkin's lymphoma.

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I have been watching a small node in my groin for six months. In two weeks I will have a PET scan to see if it has grown or metastasized. Will let you know the results.

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You need a second opinion from another dentist. Cracks in teeth usually do not show up on X-Rays. Telling you to relax while you sleep to ease up on the pain is ridiculous – it is unconscious – you cannot control the stress in your jaw like that. I used a bite guard (dentist-made) for years, but only really got relief from a new dentist who adjusted my bite by filing down a tooth which was throwing my bite off. She also sent me to jaw therapy with a PT (yes, there really is such a thing), and putting me on a soft diet for 6 weeks to rest my jaw.

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Please keep us posted on your tooth Jackie..

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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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@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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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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@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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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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@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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