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

@sograteful Swollen glands does not always mean lymphoma. The three major symptoms when it is active is drenching night sweats, weight loss without trying and a fever that will not go away.
In order to find out why my lymph nodes swollen? They have to biopsy the fluid inside of the swollen lymph node. Then they will do a Pet Scan and if the lymph nodes light up on that scan. The biopsy confirms the type of lymphoma. Which is what they did to me.
Then every 3 months for the first year they want blood work and CT Scans. So they can watch what the glads are doing. Mine shrunk with each scan.
Then they move you out to every 6 months. blood work and Ct scans. If it all looks stable. You get moved to 1 yrs. scans and every 6 months blood work.
After 3 years if everything is stable you visit the Hematology Dr. once a year.
I am guessing will go on, till we are 110 years old?
Cause with some lymphomas you can live that long. 🙂

I wish you the best..
Jackie

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Thank you so much Jackie. It's so informative to hear the actual diagnosing procedure from a veteran.
I also imagined that there would have to be more than swollen glands. I weigh little anyway – 98lbs at 5.3in. I did lose a little more in the fall. Now I am back to normal.
I really would have not rushed to "investigate" at all, but I see this doc anyway, every 6 months, so I am bracing myself for April 1st. He seemed concerned in September.

I wish you a lifetime more of symptom free, great health.

I will keep you posted on what the doctor decides.

Thank you again..
Bridget

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@sograteful

I have an appointment with my endocrinologist on the 1st April. 5 months ago, he noticed that I had swollen glands in my neck. I see him every 6 months as I have hypothyroidism. I had a bout with tonsillitis last summer, and they have been swollen since then.
Long story short, he said he didn't like the feel of my glands, particularly on the left hand side, saying it was more than 2cms. He insisted that the tonsillitis was long over with, and my glands should have returned to normal. He wanted to do an ultrasound and maybe a biopsy. I was leaving for Europe in October, so I postponed.
I feel fine, no night sweats etc, and my blood work was okay in Sept. My glands currently are still swollen. I know he will whisk me in for an ultrasound at my next visit.
I have been reading your informative and enlightening forum. Thank you for sharing your experiences with us all. I really appreciate all the information and advice you offer in such a warm hearted way.

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@sograteful I just wanted to check in and see how your Dr's appointment went on 4/1?
Hope it was all good news?
Jackie

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Thank you so much for checking on me Jackie.
I waited for over 90 mins to see the doc. He spends so much time with every patient. I got an ultrasound on my thyroid gland by the technician. It was okay, no change from last yr. This doc is an endocrinologist, he was talking about a host of other subjects, he gave a quick look at my neck in my thyroid area, and checked my blood work. He didn't examine my neck lymph nodes.
I know the doctor to return to is my ENT who diagnosed my tonsillitis last summer. That's when the swollen gland situation began.
I will be honest, I didn't persue the swollen glands etc with my endo. He seemed to have forgotton his mission last Sept of a biopsy.
He concentrates on my thyroid, and that was okay with me on Monday.
I have to make an appointment with my ENT next. In a way, I was happy to delay the issue for another bit. I know, I am only postponing it. I will let you know what the ENT says when I visit him. I also have discomfort in my diaphragm area, so I will call to make an appnt soon
Thank you so much again..I really appreciate it.
Bridget

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@sograteful Well that is good news. If there was an issue he would of picked it up in the blood work. At least your thyroid is good.
Has the lymph node changed in size? Lymphoma lymph nodes go up and down in size.
I would not worry too much. Wait to hear what your ENT says?
I wish you the Best!
Jackie

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@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.

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Just had my yearly C A T scan. I have a small tumor in my groin area. Too small to treat. Will wait six months and have a P E T scan to see if it grows or has moved.

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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 @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

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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Thank you for asking. Still on watch and wait. Hot flashes that sometime worry me—don’t know how to distinguish them from possible lymphoma sweats. ?? Some ups and downs psychologicalky, but manageable. Good luck with the tooth!

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Same here, follow up scan detected no growth of nodes in last 6 months. Blood count was excellent. The way I understand the sweats is that they need to be really severe before having to worry about it, like waking up soaked to the extend that all your clothes and bedding need to be changed. Picked up my exercise regimen a little, bought a kayak so me and my son go places where no man has gone before in the swamps in GA, started biking again, still play tennis and go on hikes. And quit smoking, vape a little to take the edge off initially, but am at 6 weeks without a cigarette after 45 years of doing that nasty stuff. Considering getting a second opinion though about my FL. I don't like an oncologist being in control of my future. Thanks for asking.

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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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Congratulations on your new home, Jackie! It sounds like you may have an infection in your mouth, so it would be a good idea to get checked in case medication is needed. I have been stable and continue on 'watch & wait'. I return to the oncologist for a 6 month exam in late September. My obvious symptom continues to be the fatigue. The heat and humidity make it worse at this time of the year. I just know I need to be disciplined and go to bed at a reasonable hour. Hope you are doing well other than the toothache, which will hopefully be gone quickly!

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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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@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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@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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I should add that while the old enlarged nodes in armpits (not palpable) and neck are unchanged, two new enlarged nodal tumors were found on the sides of my abdomen, about 1.5 cm. They are not causing me any problems and do not change my status, according to the doctor, who has treated FL patients for over 30 years. Still low grade indolent, still watch and wait. I would be happier if it hadn’t spread to below the diaphragm, and this depressed me for a bit. But I’ve had to let it go. I have no symptoms, need no treatment, and must get on with life.

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Good to hear you all. I have been on wait and watch since diagnosis of CLL last year. Like others, I share in the fatigue factor. Blood tests today and oncologist next week. Very fortunate indeed. It really helps to read your posts. Haven’t been to gym in three months . Foot fracture healing and boot /cast/ knee scooter is finally over with. No complaints because I have you all to identify with. Quiet time/meditation, whatever keeps it simple helps a lot. Hugs to all.

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@susanlim

I should add that while the old enlarged nodes in armpits (not palpable) and neck are unchanged, two new enlarged nodal tumors were found on the sides of my abdomen, about 1.5 cm. They are not causing me any problems and do not change my status, according to the doctor, who has treated FL patients for over 30 years. Still low grade indolent, still watch and wait. I would be happier if it hadn’t spread to below the diaphragm, and this depressed me for a bit. But I’ve had to let it go. I have no symptoms, need no treatment, and must get on with life.

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

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