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Non Hodgkin's Lymphoma- Watch & Wait Approach
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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@loribmt thank you thank you ! This makes me feel sooo much better !!🧡🤎🤗
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4 Reactions@dani349. I’m a firm believer that knowledge is power. The article I recommended is a good primer for information from a credible source to let you know a little more about your condition. But not everything mentioned in it will be directed at you…it’s more of an overall educational article.
You don’t have to worry that you’re not staged. I’d look at it as a good thing…it hasn’t progressed to the point of even being staged or needing any treatment. From what I’m reading with your posts, you have a great doctor who is concerned and not dismissive. You have labs at reasonable intervals to keep an eye out for any possible changes. CLL/SLL develop very slowly and some patients never have to be treated. By checking your labs your doctor will look for trends in the results. Seldom does one test determine a diagnosis. I know it can be unnerving waiting to see blood results and you’ll most likely be antsy each time. I’ve had literally hundreds of blood tests over the past 5 years. Each one is a mystery trip! But if there’s something skewed, then I talk to my doctor and we work it out together. I fear nothing anymore except…heights. Still not a fan of being on the edge of a cliff. ☺️
There are so many amazing treatment options of CLL. I’ve shared this story before with other members. There’s a young neighbor next door who developed CLL sometime in his 20s. He found that out after he and his wife were married. It was 10 years before he needed to begin a daily pill form medication and of course he was scared! He’s been on that about 5 years now and doing fabulous! He and his wife have 4 little kids! He’s out there daily, jogging, riding bikes, playing football…nothing slows this man down! It’s that way for most people who have SLL or CLL. They get treatment and recover. You really don’t need to live in fear of this disease. Yes, it’s a ‘cancer’ word but it is one of the most highly treatable forms of this disease. ‘’Stuff’ happens and we learn to face it head on…deal with things as they come but don’t let the fear of the unknown destroy the amazing life you have right now! Fear just robs us of our precious time!
I want to share a bit of my life with you. I want to infuse you with hope!
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/
I hope today is filled with positive energy for you!
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5 Reactions@loribmt I should not have read that healthline article . It kind of made me worry because I haven't been given a stage . So I that a good or bad thing?
@loribmt thank you so much for the information. So I didn't update my status, but my lab work that came back indicated that I was in the intermediate risk group which means I would need treatment between 1-5 years.
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2 ReactionsHi @Dani359, I hope I can offer you some information and reassurance about your diagnosis of CLL/SLL. Both are a common form of non-Hodgkin’s lymphoma…a slow growing cancer in the immune system of the body. CLL occurs when the cancer cells are found in the blood, while SLL occurs when they are found in the lymph nodes. CLL can progress to SLL as cancer cells grow and spread.
I know that sounds frightening as heck! But this is very slow to develop. Doctors tend not to treat in the early stages because it has been shown not to add any benefit. And treatments for both are the same. None of this means the end of the world though. The watch and wait period, or active surveillance is a good thing. It means nothing is changing rapidly. Even having a 3 month period between labs is a good indication that things aren’t changing rapidly.
This is a good informational article to read about your condition:
https://www.healthline.com/health/sll/symptoms-treatment-sll
I’d also like you to read through this thread (posted below) in another discussion with, @joeeduffy and myself, about her husband’s early diagnosis of CLL. She was also very frightened about the unknown. Keep reading through several of the comments because they’re filled with great information about CLL and that you don’t have to fear this condition. As others in the forum have said, “This is something you’ll die with, not from.”
~https://connect.mayoclinic.org/comment/1007608/
~https://connect.mayoclinic.org/comment/1007740/
It’s important to fill your mind with forward thinking and positivity and to live each day to the fullest. Please try not to think of negative ‘what if’ thoughts…bad energy there! 😉I know, I sound like the good fairy but I’ve lived through a very aggressive and difficult form of leukemia…that was 5 years ago. Now I’m healthy and cancer free…no meds! So let’s get you in a good place with this, ok?
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5 ReactionsThank you for your response. I appreciate any suggestions and thank you
for your time and support as it helps.
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1 ReactionI forgot to say my biopsy showed Large B cell Lymphoma. In addition to this “watching” I have a ground glass lung nodule, and a menengioma in my head that is being “watched”. When my fears take hold of me — I imagine each of these problems require attention at the same time, or similar. But, what can I do?
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3 ReactionsI have been in Watchful Waiting for 2years after docs at National Jewish Health found my enlarged lymph nodes on their powerful ct scan. I went there for my chronic coughing up phlegm (which I still have!) Now I have blood work and see a doc every 4months. No symptoms and sometimes I manage to forget about it— especially if I am coughing a lot!
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1 ReactionHi Jackie. I just found this discussion about watch and wait. I was diagnosed with extra nodal marginal zone lymphoma in October 2023. I had 12 treatments of radiation to my tongue and palatine tonsils in December. I will see my radiation oncologist and have another PET scan next month to see how well the radiation worked. She told me this type responds well to radiation so I am hopeful that it is gone. My staging PET scan also showed some cervical and axillary lymph nodes that lit up, but they were indeterminate as to wether they were reactive or lymphoma. I am supposing if my next scan is clear, I will enter the watch and wait phase. I can relate to all the anxiety this can bring as it is certainly affecting me. My anxiety is made worse since I have a host of other issues like Sjogren's Syndrome, lymphocytic interstitial pneumonia, and lung nodules. A lot of my symptoms can overlap with the other illinesses so it's hard to know which is the culprit. It's good to be able to talk to others that are dealing with similar situations. Thank you for sharing. Mickey
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4 ReactionsGood morning, @rubles. Hi Pam, It would be best if you could get an appointment with an hematologist oncologist. However your primary care physician can also order the tests needed to diagnosis NHL
They may start with blood work, imaging such as CT or MRI or bone marrow biopsy. First they would likely begin with blood work. Here is a good source of information for you! https://www.mayoclinic.org/diseases-conditions/non-hodgkins-lymphoma/diagnosis-treatment/drc-20375685
I know in past conversations you’ve been concerned about having thrombocytopenia (low platetlets). Did you followup with a hematologist?
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