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

@njnana

I have a rare form of Hodgkins lymphoma which was treated as if it was a Non-Hodgkins form 2 years ago. My only treatment was the immunotherapy drug called Rituximab (which is the 'R' in the chemo treatment called R-CHOP). Although there is no cure for the type of lymphoma I have, I could live a long time with this. The treatment reduced the size of the lymph nodes by 50%. Some were as large and slightly larger than golf balls and should be the size of a pea. It took me about one year following my last infusion to not allow the cancer to control my life. Yoga has helped this. I continue to do what I like to do and am more conscious about my eating. Exercise is important to maintain strength and for the mental benefits. Choose an exercise plan you enjoy. As far as the 'watch & wait', you certainly do not want chemo treatments unless absolutely necessary. Your body can handle a limited amount and type of these drugs. If you have not gotten multiple opinions from doctors at top institutions, I would suggest that you seek at least 3 opinions to make sure all lymphoma teams agree with the one you are currently using. Best of luck to you and continue to enjoy life without allowing the cancer to control your life! As I said, this was not so simple for me to do for more than a year, but it has changed what I now do on a daily basis!

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Hi – is the rare for of Hodgkin lymphocyte predominant by chance?
Thanks.

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@njnana

I was diagnosed in the fall of 2015 with a Hodgkin lymphoma that responded to treatment usually given to those with Non-Hodgkin lymphoma. This type is called Nodular Lymphocyte-Predominant Hodgkin Lymphoma. My only treatment so far was Rituxan in the spring & summer of 2016. Since then, I have blood drawn (which never showed an abnormality) every 6 months, have exams with oncologist every 6 months and for the first 18 months following treatment, I had CT scans every 6 months. That reduced to annually and now every 18 months for the CT scan. I am on Watch & Wait and thankful for this. Those who aggressively want to receive a full chemo treatment (such as R-CHOP) should know that you can only receive so many treatments that will do the job, and each one is stronger and more weakening to the body. Be glad your doctor does not want to treat you before absolutely needed. I was lucky in that Rituxan targets the CD20 antigen on normal and malignant B-cells. The body's natural immune defenses are recruited to attack and kill the marked B-cells. My lymph nodes were the size of golf balls (in my abdomen/behind the intestines). The Rituxan shrunk the lymph nodes by 50% and more in about 4 months. Because the lymph nodes have not changed size since then, and because the disease has not affected additional lymph nodes or my organs, no more treatment is scheduled for now. I will continue with the Watch & Wait approach and am thankful for this. My one recommendation is to all patients with lymphoma —- if your insurance covers it, have another oncologist (or several) from a different medical group review your reports/tests, etc. and see if that doctor agrees with Watch & Wait. I was fortunate in that 4 different lymphoma teams reviewed my biopsy reports, scans, lab work and symptoms, and 3 of the 4 agreed with the Rituxan only treatment rather than a full chemo treatment. The 4th group believed I should receive R-CHOP. Be conscious of your symptoms and keep a journal to keep record of any changes that may occur during the waiting period.

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Hi – I had replied to an earlier post asking if it was LP Hodgkins- I see from this post that it is. Very helpful information.

My now 27 YO son was diagnosed with LP Hodgkins in the fall of 2017. Although he did’nt have much in the way of symptoms – a significantly enlarged underarm lymph node led to the eventual diagnosis. It was pretty advanced at that point – stage 4 in spleen and bones. He went through a course of Rituxan. That reduced the extent of disease significantly. After a few months though it grew again so 6 RCHOP treatments which he handled well. Went into remission. Fast forward 6 months and PET scan shows a few areas of increased metabolic activity.

We’re now sorting out options – whether to biopsy again, just repeat scan in a few months, etc, etc.

You provide good advice re: seeking multiple opinions. We may see if we can get insurance approval for an evaluation at Mayo. As you know, because this type is so rare not a lot of experience out there in treating.

Best to you!

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The NLP Hodgkins Lymphoma typically affects males in their 20's and 30's which is your son's age range. I was diagnosed at the age of 53 and am a female! I did learn since my diagnosis that this type of lymphoma affects the body differently if below the diaphragm versus above (in chest area and head). It seems that the disease is more likely to be more slow growing (or remain 'dormant') below the diaphragm than above where it may become more active. Because this type of lymphoma can respond well to Rituxan (which targets the CD20 antigen on normal and malignant B-cells), many have maintenance treatments of Rituxan several times throughout the year. Since your son has now received the RCHOP treatments, his doctors may not want to have him go through this again in the very near future. Have his doctors discussed only Rituxan again & possibly weekly for maybe 4 weeks? Please also be cautious that doctors do not request an over abundance of CT scans. My oncologist told me that he prefers to never have me undergo a PET scan again (unless my health drastically changes) because of the high dose of radiation exposed to the body. In fact, as long as my symptoms remain 'calm', my oncologist has now recommended a CT scan every 18 months, so this is my first 6 month span without a CT scan. I have my 6-month visit next week. I sometimes imagine that every little 'pinch' or 'cramping' in my abdomen is the result of enlarged lymph nodes. My blood work has always been normal, so having normal blood work this coming week will not be an indicator. I definitely recommend contacting your son's insurance company to see if they cover multiple opinions. Gather his reports (I keep hard copies and also scan and save to a flash drive so I can easily provide to whichever doctor needs the information). Have your son gain access to all doctors' patient portals to access information easily. Ask him to also give you access so that you can help him should he not feel well. Cancer centers (especially those affiliated with large teaching institutions) have a 'second opinion' process which has been very helpful. Oncologists and hematologists expect you to obtain multiple opinions and they actually admire you for doing so! Depending where you live, I was very pleased with my visits to Johns Hopkins in Baltimore and University of PA in Philadelphia. I live in central NJ so I have the benefit of being within 3 hours of many teaching institutions…..unfortunately not close to Mayo. Your son is lucky to have you helping with decisions. I will keep your son, you and your family in my prayers. I have 3 sons all close in age to your son. I am sure he needs you more than ever at this time. Hoping for great results!

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@zellheff

Hi – is the rare for of Hodgkin lymphocyte predominant by chance?
Thanks.

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Yes —- I just saw this message and replied to your next message.

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I was diagnosed in 2002 with nhl…I was put on watch and wait and have NEVER had any treatment for lymphoma. I had pet scan blood work and bone marrow biopsy for about the 1st three years after diagnosis at MD Anderson in Texas which always showed no progression of diseaseI got tired of traveling to Texas since I had no symptoms of active disease. so I stopped the pet scans have been since to oncologist close to me showed no active disease I will also say when I went to my first oncologist for first visit after biopsy results in I asked him ( not really knowing much about nhl) what my prognosis was he said well in 2-3 years you will need treatment and in 12 yrs you will be dead.I just about died in the office, I said whoa you don’t know me or my body I want a second opinion at MD Anderson in Texas, 7 days later I was at. MD Anderson and they were also in shock he had said that
And look no treatment and I am still here! When I went to a different oncologist some years later to make sure my status was still not active I told him I had had this for so long I was scared I would run out of time before Cure was found he said NO look how many years it’s been inactive now I expect it to be many more before you need treatment, we are so close to a cure, if we could figure out why some people like you do not have an active disease but it stays dormant for many years we could cure it

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@pammyzammy

I was diagnosed in 2002 with nhl…I was put on watch and wait and have NEVER had any treatment for lymphoma. I had pet scan blood work and bone marrow biopsy for about the 1st three years after diagnosis at MD Anderson in Texas which always showed no progression of diseaseI got tired of traveling to Texas since I had no symptoms of active disease. so I stopped the pet scans have been since to oncologist close to me showed no active disease I will also say when I went to my first oncologist for first visit after biopsy results in I asked him ( not really knowing much about nhl) what my prognosis was he said well in 2-3 years you will need treatment and in 12 yrs you will be dead.I just about died in the office, I said whoa you don’t know me or my body I want a second opinion at MD Anderson in Texas, 7 days later I was at. MD Anderson and they were also in shock he had said that
And look no treatment and I am still here! When I went to a different oncologist some years later to make sure my status was still not active I told him I had had this for so long I was scared I would run out of time before Cure was found he said NO look how many years it’s been inactive now I expect it to be many more before you need treatment, we are so close to a cure, if we could figure out why some people like you do not have an active disease but it stays dormant for many years we could cure it

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Great to hear!

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@njnana

The NLP Hodgkins Lymphoma typically affects males in their 20's and 30's which is your son's age range. I was diagnosed at the age of 53 and am a female! I did learn since my diagnosis that this type of lymphoma affects the body differently if below the diaphragm versus above (in chest area and head). It seems that the disease is more likely to be more slow growing (or remain 'dormant') below the diaphragm than above where it may become more active. Because this type of lymphoma can respond well to Rituxan (which targets the CD20 antigen on normal and malignant B-cells), many have maintenance treatments of Rituxan several times throughout the year. Since your son has now received the RCHOP treatments, his doctors may not want to have him go through this again in the very near future. Have his doctors discussed only Rituxan again & possibly weekly for maybe 4 weeks? Please also be cautious that doctors do not request an over abundance of CT scans. My oncologist told me that he prefers to never have me undergo a PET scan again (unless my health drastically changes) because of the high dose of radiation exposed to the body. In fact, as long as my symptoms remain 'calm', my oncologist has now recommended a CT scan every 18 months, so this is my first 6 month span without a CT scan. I have my 6-month visit next week. I sometimes imagine that every little 'pinch' or 'cramping' in my abdomen is the result of enlarged lymph nodes. My blood work has always been normal, so having normal blood work this coming week will not be an indicator. I definitely recommend contacting your son's insurance company to see if they cover multiple opinions. Gather his reports (I keep hard copies and also scan and save to a flash drive so I can easily provide to whichever doctor needs the information). Have your son gain access to all doctors' patient portals to access information easily. Ask him to also give you access so that you can help him should he not feel well. Cancer centers (especially those affiliated with large teaching institutions) have a 'second opinion' process which has been very helpful. Oncologists and hematologists expect you to obtain multiple opinions and they actually admire you for doing so! Depending where you live, I was very pleased with my visits to Johns Hopkins in Baltimore and University of PA in Philadelphia. I live in central NJ so I have the benefit of being within 3 hours of many teaching institutions…..unfortunately not close to Mayo. Your son is lucky to have you helping with decisions. I will keep your son, you and your family in my prayers. I have 3 sons all close in age to your son. I am sure he needs you more than ever at this time. Hoping for great results!

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My doctor told me that CT scans also have radiation and that in the absence of B-symptoms, or complaints, they are also unnecessary.

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@pammyzammy

I was diagnosed in 2002 with nhl…I was put on watch and wait and have NEVER had any treatment for lymphoma. I had pet scan blood work and bone marrow biopsy for about the 1st three years after diagnosis at MD Anderson in Texas which always showed no progression of diseaseI got tired of traveling to Texas since I had no symptoms of active disease. so I stopped the pet scans have been since to oncologist close to me showed no active disease I will also say when I went to my first oncologist for first visit after biopsy results in I asked him ( not really knowing much about nhl) what my prognosis was he said well in 2-3 years you will need treatment and in 12 yrs you will be dead.I just about died in the office, I said whoa you don’t know me or my body I want a second opinion at MD Anderson in Texas, 7 days later I was at. MD Anderson and they were also in shock he had said that
And look no treatment and I am still here! When I went to a different oncologist some years later to make sure my status was still not active I told him I had had this for so long I was scared I would run out of time before Cure was found he said NO look how many years it’s been inactive now I expect it to be many more before you need treatment, we are so close to a cure, if we could figure out why some people like you do not have an active disease but it stays dormant for many years we could cure it

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Congratulations and many more years for you. Do you have swollen nodes or no symptoms at all?

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Hello, I have Mantle Cell Lymphoma, just heard a mention of indolent MCL. I did not know it existed. Another example of who you talk to and what info comes out of the conversation. I have been happy with my Dr. and I feel he is doing his best but it seems to be a learning process for both patient and
Dr. I now have a new dilemma. I am relocating to Arizona from the east coast and need to find insurance and Dr.(Kaiser Permanente is not in Az.) Need
some advice but not sure where to look for it. Dr. is primary and whatever is needed for insurance. I was diagnosed 2 years ago and after treatment I am
in remission. Thank you

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@pammyzammy Welcome to connect and Thank you very much for sharing your story. It brings much hope to those who been diagnosed with NHL. I have been on a watch and wait approach for a little over 3 yrs now.

I just had my followup check up and since it has been over 3 yrs now, I been told that I only need blood work and Ct scans once a yr . I have had perfect blood work the entire time. The lymph nodes near my aorta are enlarged and are considered on the smaller side. I do not have night sweats, weight loss or unexplained fevers. If it wasn't for a CT scan you would never know I have signs of this disease.

I had colon cancer which is how they found the NHL. The cancer marker for colon cancer show no evidence of disease. So they are fairly certain that is was all removed.

The first 3 years after diagnosis is a tell tale sign if these diseases will become troublesome according to my hematology Doctor. So far so good for me too. He feels that my Follicular Lymphoma will not require treatment for years to come. He can't rule out I wont need a treatment at some point. But as of now not to worry having NHL.

I hope both our stories inspire others with NHL.

Again thank you for your post.
Jackie

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@travelgirl

@pammyzammy Welcome to connect and Thank you very much for sharing your story. It brings much hope to those who been diagnosed with NHL. I have been on a watch and wait approach for a little over 3 yrs now.

I just had my followup check up and since it has been over 3 yrs now, I been told that I only need blood work and Ct scans once a yr . I have had perfect blood work the entire time. The lymph nodes near my aorta are enlarged and are considered on the smaller side. I do not have night sweats, weight loss or unexplained fevers. If it wasn't for a CT scan you would never know I have signs of this disease.

I had colon cancer which is how they found the NHL. The cancer marker for colon cancer show no evidence of disease. So they are fairly certain that is was all removed.

The first 3 years after diagnosis is a tell tale sign if these diseases will become troublesome according to my hematology Doctor. So far so good for me too. He feels that my Follicular Lymphoma will not require treatment for years to come. He can't rule out I wont need a treatment at some point. But as of now not to worry having NHL.

I hope both our stories inspire others with NHL.

Again thank you for your post.
Jackie

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Thank you. A hopeful story. 7 months since my diagnosis.

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I too was just diagnosed. Scary. I go for scans Friday to determine stage

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@dianebrumbach

I too was just diagnosed. Scary. I go for scans Friday to determine stage

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Don't be alarmed by stage once you know. It depends on location and if organs are involved. So many types of cancer cells are very treatable for a quality life. Years ago Stage 4 did not have a positive outcome, but today thanks to research and more treatment options, it is a number that helps doctors determine best treatmentfor you. Wishing you the best results!

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@dianebrumbach

I too was just diagnosed. Scary. I go for scans Friday to determine stage

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@dianebrumbach I see you are new here on connect. I would like to welcome you to the community.
If you don't mind me asking, How was your lymphoma found? Did they by any chance, mention which type? There are about 65 different lymphomas.
Many are super slow growing. You could live an entire lifetime and never need a treatment.
@njnana is correct staging is just a number.

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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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