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Thread: "Desperately" Seeking Primary Bone Lymphoma Mates!

  1. #31
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    Apr 2019
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    Hi PBL, thank you for the message. Yup just got to look on the bright side whenever possible. There are people far worse off, just on here. You're probably right about the emotional side of it, I saw the oncologist yesterday and it was pretty intense so maybe that's why I feel like rubbish today.

    The first biopsy was needle aspirated and they couldn't diagnose beyond it not being osteosarcoma. The second one they were looking for lymphoma and took a much bigger sample, they actually diagnosed me with lymphoma then but werent sure of the type so I need a third one. It's been a bit of a mess getting a diagnosis, im 6 weeks out since the first biopsy but understand it's a difficult beast to diagnose.

  2. #32
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    Mar 2017
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    I confirm it is a lengthy process! I, too, had three biopsies over a three-month period - the first one (a core biopsy) showed lymphoma, but there wasn't enough material to nail it more precisely. The next two were surgical biopsies, but for the first of those the surgeon decided to dig at the fracture site, and got nothing but newly-formed bone… On the last biopsy, the surgeon was guided in the scanner by the radiologist to the hottest spot they had previously located on the PETscan, and they got it: in my case, it proved to be Follicular Lymphoma, but PBL is generally DLBCL, so this is what you can reasonably expect.

    Although I have an indolent strain of lymphoma, I was treated as if it was aggressive, with R-CHOP.

    Yes, it is difficult to diagnose, but it is essential to get it right, as diagnosis determines therapeutic choices.

    If you are in the U.S. and are not being treated at a National Cancer Institute you may want to ask for a second reading of your pathology slides at one such facility. You may also want to consider getting a second opinion from a specialist hematologist.

    For the time being, you can reassure yourself with the idea that you've been through most of the diagnostic phase, and you should very soon know where you're headed. One other positive point you can repeat yourself is that DLBCL is generally eradicated by treatment - so if it is confirmed, this should be a one-of event in your life.

    Please feel free to ask any questions as things move forward.

    PBL

  3. #33
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    Quote Originally Posted by PBL View Post
    I confirm it is a lengthy process! I, too, had three biopsies over a three-month period - the first one (a core biopsy) showed lymphoma, but there wasn't enough material to nail it more precisely. The next two were surgical biopsies, but for the first of those the surgeon decided to dig at the fracture site, and got nothing but newly-formed bone… On the last biopsy, the surgeon was guided in the scanner by the radiologist to the hottest spot they had previously located on the PETscan, and they got it: in my case, it proved to be Follicular Lymphoma, but PBL is generally DLBCL, so this is what you can reasonably expect.

    Although I have an indolent strain of lymphoma, I was treated as if it was aggressive, with R-CHOP.

    Yes, it is difficult to diagnose, but it is essential to get it right, as diagnosis determines therapeutic choices.

    If you are in the U.S. and are not being treated at a National Cancer Institute you may want to ask for a second reading of your pathology slides at one such facility. You may also want to consider getting a second opinion from a specialist hematologist.

    For the time being, you can reassure yourself with the idea that you've been through most of the diagnostic phase, and you should very soon know where you're headed. One other positive point you can repeat yourself is that DLBCL is generally eradicated by treatment - so if it is confirmed, this should be a one-of event in your life.

    Please feel free to ask any questions as things move forward.

    PBL
    That's strangely reassuring to know you have had similar issues with diagnosis. How is your treatment going? How has the chemo been? I know its variable fron person to person but would good to hear your view.
    Are you also having any radiotherapy?

    Both the biopsies have been CT guided for me, second biopsy was a surgical biopsy and showed lymphoma but they were unable to fully diagnose. I'm going to have the next (and final, finger crossed) biopsy next week. Definitely started feeling "funny" I would say over the last couple of days, had a stiff neck and been really down on energy.

    Did you have bone pain as your main symptom? That's literally all I had and since the first biopsy the pain has gone. The oncologist said this is likely due to the lesion being penetrated during the biopsy and the bone no longer being under pressure. Did you experience this? Thank you so much for responding.

  4. #34
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    I can definitely relate to your feeling reassured in a way by finding out that someone else has had a similar experience.

    Rather than go into too much detail regarding treatment, I suggest waiting until you have your final diagnosis and treatment plan - you will then be able to seek answers that are relevant to your own situation - there's already so much information for you to take in at this point!

    For the time being, I will just give you an overview of my own experience to answer your questions.

    As already mentioned, I have had R-CHOP. That was from early March 2016 to end of June 2016 - six infusions, 21 days apart. Due to my having an indolent form, the chemotherapy itself was followed by two years of maintenance immunotherapy (i.e., Rituximab every eight weeks with an aim to delay relapse).

    I did not have any radiotherapy, as my lesions pretty much filled all of the left half of my pelvis, and the treatment would have caused quite a lot of damage to my bladder and descending colon.

    I resumed full-time work beginning of April, 2017.

    My last treatment was almost a year ago (end of April 201, and I have since then been moved to biannual surveillance (quarterly blood work, imaging every six months and hematologist's appointment every six months). As a matter of fact, I am due to see my hematologist next week, and would have posted an update then.

    Hip and lower back pain was an ongoing issue for several years leading up to a spontaneous fracture in June 2015 - and that event was what eventually brought about my diagnosis. That was not my only symptom, however, as I had also been experiencing random outbreaks of hives since 2009 as well as struggling with fatigue over the last couple of years.

    Unlike you, I can't say the biopsies gave me any relief from the pain, which lasted long after I was done with chemotherapy and had achieved remission. I am still not pain-free at this point; as a matter of fact, I spent all of January 2019 at the hospital's Physical Medicine and Rehabilitation ward to work on improving that situation.

    Do not let that worry you, however, as the few other PBL folks I have been in touch with seem to have recovered very rapidly after they got started on treatment.

    I hope this answers your latest questions!

    Fingers crossed for your third (and hopefully final!) biopsy next week.

    PBL

 

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