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    Old 06-08-2021, 03:55 AM   #1
    miniguy
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    stage

    From CT scan, I have enlarged nodes in the neck as well as some in the lower abdomen. No organ involvement seen. Biopsy shortly and assuming due to my age, 73, this will be lymphoma. Antibiotics of no value. Can I assume since these are on both sides of the diagram I am already Stage 3 ?
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    Old 06-30-2021, 01:03 PM   #2
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    Re: stage

    Hi, have you had your biopsy results back and do you know if it is lymphoma or not? if it is then you will be stage 3 or 4, but that's not really important as stage only informs treatment and blood cancer staging is not like solid tumour cancer staging. I was stage 4 back in 2009.

    Let us know how you get on.

     
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    Old 06-30-2021, 01:22 PM   #3
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    Re: stage

    Thank you John, it is follicular lymphoma sorry to say. PET scan showed no organ involvement or bone marrow. Bone marrow biopsy also clear. Having a lymph node excision tomorrow as core biopsy was a bit confusing as to grade, although mostly 2, maybe some 3A, maybe. Oncologist discussed careful watching as a possibility as I am not having symptoms and blood work is fairly normal. Not sure I am on board with that, any thoughts?

     
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    Old 06-30-2021, 01:31 PM   #4
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    Re: stage

    Hi, I had an aggressive type called DLBC but over the 12 years have come to know many people who have follicular NHL. Yes it does sound odd to be told you have cancer but its not being treated, odd as it sounds that is good news and I know people who have gone years without needing treatment. One way of thinking if you can get your head around it is see it like a chronic disease, when it flairs up its treated and when it behaves its left alone, a bit like asthma or diabetes.
    Not surprised the core biopsy was unreliable, they often are and good the bone marrow is clear.
    Have you read up about the disease yet and treatment options when they are needed?

     
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    Old 06-30-2021, 01:56 PM   #5
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    Re: stage

    Thank you for your comments. Diffuse Large Cell.......
    I have done considerable reading now over the last month and have read about the various treatments. It is mind boggling, which is best? Which causes the least damage, which will allow you to live a reasonable quality of life? Perhaps watchful waiting is the best? My oncologist was highly recommended and I understand the advantage and possibility of doing nothing at this point, it just seems difficult to let it go as is....... Will the bone marrow remain clear, the internal organs also?

     
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    Old 06-30-2021, 02:08 PM   #6
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    Re: stage

    Good you have managed to read about FNHL and have some understanding, re treatment they normally start with the mildest form if they can, however a number of newer drugs are available now so some newer regimes are being used, though they will always use a monoclonal antibody as part of it, this used to be rituximab but the are newer versions which don't cause the reactions rituximab does. The likelihood is you bone marrow and organs will remain clear but you can never say never, your disease would need to flare up and become active for new sites to appear.
    Once your specialist has the full picture thats the time to discuss options and what's best, the benefit of having an indolent type is you have time to decide when it comes to having to make a choice. One bit of advice is to discuss what impact Covid 19 is having on their thinking and the impact of treatment as most of the drugs you may be given will weaken or wipe out your immune system.

     
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    Old 06-30-2021, 02:18 PM   #7
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    Re: stage

    Thank you for your comments John. I have an appt. with the oncologist in a week giving time for pathology to read the sample and provide a full report. I suspect at that time we will talk about treatment options with more knowledge at hand. No doubt Covid has a consideration in current treatment and care. I will post additional information as it becomes available.

     
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    Old 07-02-2021, 01:19 PM   #8
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    Re: stage

    Received the pathology report from the lymph node excision I had yesterday.
    It came back as 3A, The Ki-67 proliferative index is approximately 50%. I believe that there is some confusion about how to treat 3A, is it grouped with 1, 2 or with 3B in terms of aggressiveness. A good question for my oncologist....or anyone having any thoughts or experiences.

     
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    Old 07-02-2021, 01:24 PM   #9
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    Re: stage

    From what I have read its grouped with 1 & 2 and here is the explanation from a UK lymphoma charity:

    Grades 1 to 2 and 3A follicular lymphoma are all slow-growing and are treated in the same way. The grade does not affect the likely outcome of treatment.
    Grade 3B follicular lymphoma is usually fast-growing. Under a microscope, it looks like a type of high-grade non-Hodgkin lymphoma called diffuse large B-cell lymphoma (DLBCL). It is treated the same way as DLBCL.

    hope this helps you

     
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    Old 07-02-2021, 04:45 PM   #10
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    Re: stage

    Thanks John.
    Yes I have seen that explanation, also seen 3A and 3B both grouped together and treatments inconclusive as to a preference for one or the other. Unfortunately what I see on the web is probably out dated by now. I would hope that grouping 3a with 1 and 2 is the reality of the situation. This will need to be a point of discussion with my oncologist.

     
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    Old 07-07-2021, 11:07 AM   #11
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    Re: stage

    I met with my oncologist this morning and we chatted about the pathology of my recent biopsy as 3A and my Stage 3 status. Ultimately we talked about a choice of watchful waiting or a treatment course of rituxan and bendamustine to achieve a durable remission. At this point we are thinking of the latter as a better choice in that I am fairly fit and 73 years old.

     
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    Old 07-07-2021, 11:21 AM   #12
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    Re: stage

    The important point is that you are happy with the choice when its finalised and it does sound like it was an informed discussion, B & R is a better tolerated regime when compared to RCHOP which I had. Also all the research shows it offers most patients a longer remission period than some of the other regimes which no doubt was discussed.

    Sadly the is no B & R thread on this site so you could if you wish record your experience for others to read in the future. On the sister site which I used to moderate the were many but that was closed and all users signpost to this one.

     
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    Old 07-07-2021, 11:53 AM   #13
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    Re: stage

    I think of the options I had both from my own research and what was presented to me by the oncologist this was probably the best. Watchful waiting just seemed to leave too many unanswered questions. My feeling is that if treatment was not too far away, I might just get on with it rather than experiencing a lot of problems with enlarging nodes which I believe I may now have in my neck. He suggested that he would be happy to facilitate a second opinion but given what was presented and what I have read, I am not uncomfortable with this. I will have a chat with my internist and likely begin the process.
    Thanks for the suggestion of starting a thread, I may do so. I started a thread several months ago on lumbar spinal stenosis for which I had surgery three months ago that had a decent following.

     
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    Old 07-29-2021, 11:35 AM   #14
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    Re: stage

    Finished my first treatments yesterday, Bendamustine and Rituxan. Two days, both drugs first day, administered slowly to watch for side affects, Benda, yesterday done quickly. Neulasta box on my stomach to inject today. This regime was pretreated with various other drugs and well tolerated, a bit tired this morning but got out and walked 5 miles, no doubt the steroids I will finish tomorrow, are helping out.

     
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