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Thread: "Desperately" Seeking Primary Bone Lymphoma Mates!

  1. #31
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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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    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

  5. #35
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    Greetings PBL and Phyla 101,

    I too am in this small group. My diagnostic journey was similar to PBL's in that I had three bone and bone marrow biopsies before one of the top treatment centers in the country and probably world accurately diagnosed me with Diffuse Large B-Cell Lymphoma that had likely started as Follicular and transformed at some point. Initially, I was being treated for what was thought to be a rotator cuff injury to my right shoulder. By the team I got to a proper diagnosis, the cancer had spread through-out my left iliac crest (hip) and other bones and bone marrow and I was in a lot of pain and limping. Anyway, long story short, once I got to MD Anderson (I also live in CA, Phyla 101) in Houston Texas, they got me correctly diagnosed and into treatment quickly. My hip pain went away as soon as the treatments started. I went through 6 rounds of DA-R-EPOCH (similar to R-CHOP, but with one more variety of poison), 2 consolidation rounds of High Dose Methotrexate, and 11 intrathecal (lumber puncture) chemo treatments. None of it was much fun, but I tolerated it and have been in Remission now for 14 months. I am also happy to share any of my experiences on this journey if you want. I completely agree with PBL on everything she posted, but especially the part about getting a second opinion from a Nationally recognized treatment center. my hometown folks were not up to the task and they did not get the correct diagnosis and did not offer the most comprehensive treatment plan for me. My team at MDA is amazing and I trust them 100% with my life! Stay Strong, Ladies!

    Cheers,
    Diane

  6. #36
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    Welcome back Diane,

    Sorry I haven't replied sooner - very busy period at work, and literally all of my energy goes into doing everything that is demanded…

    Good to read that your remission continues - as does mine. Fatigue and pain is still my main issue at this point. I saw my hematologist on April 16 and remain on a semestrial appointment schedule, so my next MRI and CT are due in October. I assume such is the case for you as well.

    I hope Phyla's bone marrow has been 100% successful and that she will soon have a complete diagnosis.

    Regards,
    PBL

  7. #37
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    Hi guys,

    Firstly just want to say to you both and the hosts of this site that it is such a comfort being able to chat with you both directly about your experience. It's awesome to hear that you are both doing well and in remission. Being able to speak with you who are going through this and hear first hand the reality of the treatment is invaluable and, seriously guys just thanks for starting this thread and continuing to input.

    I had a Major expletive show today with the 3rd, and what I am still hoping will be, final bone biopsy. The radiologist wasnt prepared to perform the biopsy based on the imaging available to him, because this has taken so long to get to where I am, the images are now 3 months old. I was on the table, line in, drugs prepped to go in but the ct images show very little abnormality it's only the mri and bone scan that are pronounced so he wasn't prepared to do the biopsy as it may be none diagnostic. I do understand that but dont find it really frustrating as I said to my onco we should do some new images while I'm being lined up for the biopsy so there was a 2 week wait. I Was close to losing my head today with them, the team seem completely incompetant but I understand this is difficult to diagnose and they are ultimately trying to help me. That hasn't stopped me losing a lot of confidence in them today.

    On the plus side my symptoms have completely gone, no bone pain whatsoever, managed a 1 hour bike ride yesterday with no pain. The general sick feeling I had a few weeks ago coincided with 2 family members suffering from vomiting and diarrhea so it genuinely looks like that was a bug rather than PBL related. Anyway had some more images done today, a full set of mris, ct, x ray and bone scan so now we shall see what the course of action is. Have to stay positive and I genuinely do know there are a lot of people out there suffering, so I cannot complain. Hope you both continue to go from strength to strength.

  8. #38
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    Hi Phyla,

    I am so sorry you are - understandably - finding the whole process a bit overwhelming, but you need to keep faith in your medical team, otherwise how are you going to entrust them with your life?

    So, if I get you right, they did in the end proceed with the biopsy, but they did so without any "visibility"? Couldn't they retrieve your MRI/bone scan and base themselves on those images to try and make sure they got a proper sample?

    It does seem like a good sign - although puzzling to me - that your symptoms seem to have subsided. Maybe that is because you have been put on some form of treatment, such as prednisone? What does your hematologist say about it?

  9. #39
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    Greetings Phyla & PBL,

    PBL it is great to hear that you continue to be in remission! I hope the fatigue and pain becomes less intense over time. I also continue to struggle with fatigue and have to pace myself too, especially since I am still working full-time! I am still trying to adjust to a "new" normal even at 15 months after my last treatments! You are right, I am a 6 month cycle now for my scans and check-ups and my next milestone is reaching the two yr. mark staying in remission, which will increase my odds against a relapse! I am looking forward to a trip with two of my closest girlfriends from high school this summer and going to a tropical local with my husband, two sons, and daughter-in-law also this summer. I may go SCUBA diving again for the first time since my diagnosis almost two years ago (July/Aug 2017)!

    Phyla, I do hope your team has reached a definitive diagnosis for you! With NHL, it can be important to determine the pathology to get the most effective first-line treatments. I am also curious about your symptoms subsiding...did they start you on any treatments? My pain from my hip disappeared as soon as I started my first round of DA-R-EPOCH and some hypothesized that it was due to the very high doses of Prednisone. Prior to treatment starting, the scans showed a huge lesion and significant damage to my left iliac crest, which is why I was in so much pain. Thankfully, the hip pain has never returned to date.

    Stay strong ladies and I hope you both have an enjoyable week-end!

  10. #40
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    Scuba & PBL - Glad you are both doing well as we three are all part of the same "summer of 2017" class of NHFL. FYI, my maintenance continues until the end of the year, but I'm feeling great and long ago resumed all my normal activities.

    Phyla - Glad to hear you're not in panic mode. As we three will attest, there are good outcomes.
    Age 55 at Diagnosis
    6/2017 - Fell off a ladder. Incidental finding
    7/2017 -CT shows "Innumerable" enlarged nodes up to 2.2cm in mesentery, retroperitoneal, mediastinum, SCV node. No symptoms blood work normal--including LDH.
    7/2017 - Biopsy confirms Lymphoma of Follicular center origin WHO 1-3a. Also some diffuse areas highly concerning for DLBCL.
    7/2017 - PET confirms Stage III. SUVs to 9.3. Bone marrow biopsy negative. Remain Stage III.
    8/2017 - Begin RCHOP 21. Neuts to zero after treatment. Neulasta moving fwd. Neuts rebound.
    10/2017 - Mid point CT shows treatment effective. RCHOP continues.
    11/30/17 - RCHOP concludes
    1/2018 - PET shows zero SUVs and complete response to treatment. Rituxan maintenance begins
    7/2018 - CT shows NED. New coronary artery calcification to be investigated.

 

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