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

What kinds of pain are you suffering travel girl and salving grace?

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My hematologist sent my results to the nearest lymphoma center and they concurred, watch and wait. I was worried about what seemed to be high suv scores on the pet scan but the proliferation index, Ki-56 I think, on the biopsy was extremely low—so a low grade or indolent diagnosis. I have my next blood work and physical exam ( no more Ct scans unless absolutely necessary—radiation exposure) in two weeks. If all is well I can wait six months for the next. I have a small palpable tumor on my neck (not visible)—I call it my “worry bead” but it seems not to grow. My diagnosis in August shook me badly, and while I still have difficult moments—above all when I worry about possibly not being there for my kids—I am getting used to it. I take curcuma and cbd oil (at bedtime for better sleep) and eat more kale and spinach—togive me the feeling I am doing something. A pity is that I have shoulder problems which seem to be a post operative complication of the neck biopsy. This is being worked out with physical therapy and Orthopedic treatment but is a real downer. I think apart from that I would feel very well and not know I had this.
For all of those newly diagnosed, you will feel better over time I am sure. The first months have to be gotten through.

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@susanlim @mrsalvingraves3 One thing I see we all have in common is Anxiety? This was brought on by being diagnosed with cancer. I think its a fear of the unknown? At least it is for. I also notice that is something I am not able to control. I been a control freak my whole life. So a cancer diagnosis is very difficult to handle. I can't control it's destiny. So that creates the anxiety.

When I was overly stressing, back when I was first diagnosed, I had pains that came from nowhere. Everything hurt on my body. I think I made it worse by reading so much online. The more I read, the more pain I felt. I had to start taking sleeping pills to get through the night. This way i wasn't up all night reading nonstop. I searched how does one die from lymphoma or colon cancer? I kept thinking back to my Grandpa's, and my Mom's deaths related to cancer. And I found myself doing nothing but focusing on dying. I had to change this. There were days I didn't get out of bed. Just read and cried all day. I would compose myself just enough to plan a client trip. Then when I finished that I went back my hysteria state.

It took a good year and half to stop freaking out. It has taken another year to get my confidence back. Going to the gym and working out helped. Taking long walks helped. I stopped focusing o,n my illnesses and started focusing on my life.

Do I have pain? I do every now and then. At times my I get chest pains, pains in my arms and headaches. Now are they related to lymphoma, I don't know the Dr says no. Lymphoma does not cause pain. Have I thought they just told me that so I don'y worry? Yes the thought has crossed my mind. I take a couple of Tylenol when it gets too bad.

We have sluggish working lymph nodes. I think at times they are going to hurt? I just start taking extra vitamin C, enchinacea, turmeric and a couple of Tylenol.
Drink lots of water, get a lot of rest, and a few days later I am usually feeling better.

I firmly believe anxiety plays a big part in the pain I am feeling. So my advice is try and exercise more walk a lot. Just try it and let me know if that helps?
Get out of the house and away from the computer.

Talk to you later,, It's time for me to get some exercise in and off to work..
Jackie…

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@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

Jump to this post

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!

Jump to this post

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

REPLY
@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

Jump to this post

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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