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Thread: "Desperately" Seeking Primary Bone Lymphoma Mates!

  1. #1
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    "Desperately" Seeking Primary Bone Lymphoma Mates!

    Hi All,

    I was diagnosed with Grade 2, Stage 4, Primary Bone Follicular Lymphoma a little over a year ago following a spontaneous pelvic fracture in June 2015, and received six R-CHOP21 from March to June 2016. I am currently in remission, undergoing 2-year, 8-weekly Rituximab maintenance.

    Now, eight months out of chemo and despite six months of physiotherapy which yielded great progress, I still have some bone pain in the initial site as well as new bone pain, relatively limited endurance, and a conspicuous limp.

    I have read here and elsewhere other contributors stating that they, as I do, really wish they could exchange on all things specific to that presentation (on top of "general" follicular (or not) lymphoma considerations) with others who have experienced it.

    Hoping to find penfriends in this particular category!

    PBL

  2. #2
    Top User RobLee's Avatar
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    Sorry I can't be your penpal, but I have been posting here for several months regarding primary bone lymphoma... most recently in this thread: Father newly diagnosed today.

    Here all this time I felt like I was the only one who knew anything about this particular variant. Now that my wife's DLBCL-PBL is in near full remission, I wish I could find someone who can tell me how long after getting an AMS800 implant I must heal before I can begin salvage radiation. We're trying to plan the year ahead!
    Me: Age 66, 62 when this started
    Oct 2012 & 2013: PSA=4, DRE negative
    Mar 2014: PSA=9, TRUS biopsy negative
    Mar 2015: PSA 12, Oct: 20, lots of Cipro
    Mar 2016: PSA 25, changed Uro

    Jun 2016: MRI fusion biopsy, tumor right base, 2 cores 100% +2x40% all G8 (4+4)
    Aug 2016: DaVinci RP (-)margins & 11 lymph nodes(-) 53g 25% involved, pT3B n0m0
    Grade group IV, 6mm extraprostatic extension w/PNI, bilateral seminal vesicle invasion
    Jan 2017: one year Lupron ADT initiated, uPSA's ~.03
    May 2017: AMS800 implanted & revised 5/15-7/21
    Aug 2017: 39 fractions RapidArc IMRT 8/14-10/6

    Mrs: Age 64, Dec 2016 Dx stage 4 NHL/DLBCL, Primary Bone Lymphoma
    spinal RT, 6X R-CHOP21+intrathecal MTX via LP. Only 1% of lymphomas are Primary Bone
    "Everyone you meet is fighting a battle you cannot see"

    Read our story at Cancer Couple Blog

  3. #3
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    Hello RobLee,

    And thank you for taking the time to reply to my post. I am sorry to find - but perfectly understand - that you have other, more urgent preoccupations now with your own prostate cancer, and I must admit I can be of no use regarding that.

    Perhaps at some later time, when that is sorted out, you or Mrs Lee may be interested in exchanging on our common issues.

    I will, in all likelihood, still be looking here for correspondents.

    In the meantime, I wish both of you well.

  4. #4
    Top User RobLee's Avatar
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    Thanks PBL. I showed your post to my wife and she confirmed that she is not interested in corresponding. But she was curious about your "2-year, 8-weekly Rituximab maintenance." Does this mean that you receive Ritux every 8 weeks for the next two years, or that you will receive Rituxin four times a year, for a total of 8, or is it something else? She is fearful that once this is over she may have to go on some sort of maintenance program.

    If I haven't mentioned it already, this past week was her next to last R-CHOP and also now just have one more lumbar puncture. Her mid course scans showed all tumors had shrunk by 50% so we're guessing they will take more scans in about a month, a week or so after the last RCHOP+LP to see if the tumors have fully disappeared. She was also concerned because her scans revealed a previously unknown iliac fracture, and I told her that you had mentioned a spontaneous pelvic fracture.

    Recently at one of her infusions we ran into one of the nurses who remembered her from when she was first admitted and commented that she remembered the difficulty they had identifying her condition because it was so rare. I can just imagine a team of doctors saying "well, it could be this, but since that is so rare, then it must be something else". The really good news is once they identified what it was, the treatment was pretty much by the book.

    We went thru so much anguish in the weeks and months before her hospitalization, as everyone was treating her pain as the result of a muscle strain or bruised rib. I was adamant that it had gone on far too long. But at present stage her limp has disappeared and I'm wondering why you still have yours. Also I'm curious... are you M or F? I'm guessing F... or am I allowed to ask that?

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    Hello again RobLee,

    I hope you won't feel offended if I begin by expressing some amusement at that mix of unwillingness to correspond and curiosity... This seems to me to reflect our ambivalence towards the disease which has hit us - wishing it away, and yet trying to learn more about it in order to optimize our chances of that wish being granted.

    To answer your questions as best I can, from the easiest up:

    I am "F", 52 at diagnosis, and my post-chemo maintenance treatment consists of Rituximab once every eight weeks for two years. Regarding this fear of Mrs Lee's, I believe it is mainly a matter of her doctor's personal beliefs, so maintenance is not as systematic in DLBCL as it is for indolent (or slow-growing) lymphomas. This has something to do with the notion that, while DLBCL is an acute illness, it is considered curable, whereas Follicular (my brand) is deemed treatable but incurable - therefore requiring some sort of prolonged treatment to delay relapse. This being said, Rituximab is not chemotherapy, once every 8 weeks is not too much of an inconvenience, and in my case at least, it is worth the regular reminder that I am indeed not as healthy as I should wish to be - but (hopefully) not as sick as I could be...
    ... Not that my body will allow me to forget, since I have those persistent issues - which are the main reason why I have come here seeking other people with the same presentation. I am trying to figure out why this pain and limp are so stubborn, and what are my chances of ever being rid of them. My explanation at this point, based on what the hematologist and rheumatologist have told me, is that my indolent strain of lymphoma has had years (to be quite clear, about seven years complaining of left hip pain) to weaken all of the left half of my pelvis, so that by the time the fracture which finally led to diagnosis occured, the pain had been so long-standing that it cannot seem to stop. Also, even though I am now in remission, my mid-treatment MRI showed no difference with the pre-treatment MRI, and the PETscan which was done after my fourth R-CHOP infusion still demonstrated active disease – albeit, much less avid. So, perhaps my disease is also slower in responding to treatment. This, of course, addresses only the bone lesion identified at diagnosis, but does not give me any clue as to why I am now experiencing bone pain at other sites... Nevertheless, I find it reassuring to find that Mrs Lee seems to be returning back to normal, as this gives me hope that I may too, at some point.

    Finally, I agree with your comment that diagnosis is a long and difficult process due to the rarity of PBL, but that once it is nailed, treatment is routine. That's one positive aspect!

    Wishing you both the best possible outcome.

    PBL

  6. #6
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    Greetings PBL,

    I am a 53 yr old female and brand new to this forum as I just today received news of my 2nd biopsy results indicating "B-Cell Lymphoma of Follicular Origin." This is after undergoing multiple tests during the month of July after receiving completely unexpected news on July 6th that an MRI of my shoulder found a rather large mass that was worrisome for Metastatic disease. I had the MRI to investigate what we thought was a rotator cuff injury or tear. Please review my post from yesterday for most of the information of the tests done etc... if interested.
    Your post caught my eye b/c I think I have PBL. I also am walking with a pronounced limp and some pain. My pain started in my right shoulder and test results show most bones are there are involved. Ironically, my shoulder r is not bothering me much, but I think it may be b/c I had a cortisone injection at the end of May just before getting referred to an Ortho Surgeon.

    Then, my left hip started hurting and when they x-rayed it, a lesion was reported on my Pelvic bone. My right femur also was extremely painful for about a day. I could not bear weight on it without a lot of pain. That dissapated, but my energy level and speed with even walking has been very worrisome. The full body bone scan revealed multiple areas of involvement including several focal abnormalities in my skull, my left iliac crest, left iliac, both femurs, a couple of fractured ribs, and some involvement with my right iliac region too. They kept telling us I had Multiple Myeloma or a metastatic cancer until the results from the first biopsy came back with "positive for atypical lymphoid infiltrate" and a probable presentation of NHL B-Cell. The Dr. today, who is filling in for the Oncologist I will be seeing, thinks it is CLL, but I don't have most of the symptoms for that. I am trying to make sense of this and get to treatment. They now have me finally getting a PET scan, but the only machine near me is broken right now. They think it will be operational soon, maybe by tomorrow, so I should be able to get that done in the next few days.

    How did you finally get diagnosed with PBL? Also, how are you doing now? I hope this post finds you well and enjoying some of the activities you did prior to symptoms. I am holding out hope that I will be able to go road biking again, dive or jump into a pool or the lake, and Scuba dive again😄☀️.

    Cheers,
    Diane/Scubamom

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    Hello Diane,

    Sorry to welcome you under your present circumstances. I apologize for my tardy reply - I must say I had little hope of ever seeing my post from almost half a year ago ever surface, so I do not check the forum on a daily basis...

    However, I can see that Po has already reached out with reassuring words. As he has stated in his reply to you, and although it may seem difficult to accept, there is no need to panic.

    Some aspects of your account do puzzle me, particularly the number of your bone lesions and how widespread they are. I remember how bewildered the radiologist seemed to be at the extent of my tumor, and that was "only" half of my pelvis! Also, I wonder why the oncologist you have seen says CLL when the pathology lab says Follicular - but I am just a patient, not a hematologist. Anyhow, Follicular and CLL are both indolent (or slow-growing) lymphomas, so they do not ordinarily require urgent treatment. The only issue here, given the state of your bones, is the possible consequences of a fall, so do heed your doctors' advice.

    I will try to share what I have learnt so as to help you understand your illness, and hopefully, feel more on top of the situation.

    Primary Bone Lymphoma (PBL) basically is lymphoma (any lymphoma) with a peculiar presentation. In order to be called PBL, the lymphoma must present as bone tumor, without any distant lymph node involvement or other organ involvement within six months of diagnosis. Some neighboring lymph node or soft tissue involvement is to be expected, but no distant tumors. Some definitions only accept monostotic (in a single bone) presentation as PBL, while others consider polyostotic (in several bones) disease to be PBL as well - as long as the aforestated rule is respected.

    More often than not (in approximately 80% of cases, if my information is correct), PBL is Diffuse Large B-Cell Lymphoma (DLBCL) - an aggressive (meaning fast-growing) type of lymphoma. However, any type of lymphoma can present as PBL.

    Follicular lymphoma or CLL, both being indolent lymphomas, develop over long periods of time, and often become detectable at a late stage - as seems to be your case as well as mine). As Po has stated, this does not mean that they are any less treatable. Actually, they usually respond well to treatment. In your case, I imagine that you will be undergoing immunochemotherapy, since those doctors will not likely let you keep walking around with active bone lesions. But let us keep that for later.

    Regarding how I was diagnosed and how I am doing now:

    I have Follicular lymphoma, had been every now and then complaining of left hip pain over the course of several years, and had had several X-rays done, with nothing showing. In the spring of 2015, I once more went to my PCP with the same complaint, had another "unremarkable" X-ray... and then all of a sudden the pain worsened in June. I was very busy with my work then, but starting July 1st, I started seeing my PCP every few days, until he ordered an MRI. He had come to believe that I had a pinched nerve in my lower back. The MRI, which was finally done in late August, showed that all of my left pelvis was very low signal and that I had a semi-recent complex pelvic fracture. She made a tentative (and unconvinced) diagnosis of Paget's disease and my PCP sent me for a bone scan which showed no other significant bone involvement. As in your case, the radiologist then went on to a whole body CT to rule out a primary solid cancer, found nothing, and urged my PCP to refer me to a rhumatologist, whom I saw in October. He ordered a CT-guided bone biopsy which came back suspicious for lymphoma but with insufficient material, then a PETscan which showed high uptake (some advice on that later, since you are due for one soon), then two surgical bone biopsies... Final pathology report came in February, and chemotherapy was started in early March 2016.

    The chemotherapy put me in remission, and I am now on maintenance immunotherapy. I have resumed my work since April this year, I still have pain and other issues, but as you will easily conclude from my story, you can harbor an indolent lymphoma for quite a long time, have a lengthy diagnostic period, and still be around to talk about it !

    Regarding PETscans, it is essential that you starve those cancer cells of sugars (and carbohydrates) and that you do not stimulate your muscles for at least 24 hours prior to the test, as it is based on the particular avidity for glucose of cancer cells as compared to normal ones. So, on the day before your PETscan make sure you stick to an all-grilled meat or fish diet, stay well hydrated with pure water only, and refrain from any strenuous exercise. You also will have to fast (water only) for at least the six hours prior to the test. Do not expect to read or do anything else than rest while waiting for the imaging to be done after they inject you with the glucose – the test is that sensitive.

    I hope this long post answers your questions and helps you with the next few steps. Do keep me posted on any developments, and take care.

    Roz/PBL

  8. #8
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    Hi Roz,

    Thank you so very much for your reply. I truly appreciate the valuable information you shared. I did complete a response yesterday, but I guess I did not get it to post correctly, so I am going to try again now. I am glad to hear that you are in remission and I hope that the residual pain subsides soon. As a newbie, I too am puzzled by the Locum Onc's belief that I have CLL when the biopsy results are finding Follicular. From what I have learned from a variety of sources, the NHL's can be difficult to diagnose correctly down to the sub-types, even for the experts. My biopsy results did stain positive for some of the markers for CLL. I am still waiting for the appointment to have the PET-CT that was ordered last Wed.morning. Apparently, my Onc office did not submit the documentation needed to my insurance co. until Friday morning, even though they wanted it done stat. Now, my insurance is waiting for the Dr. to Dr. communication before they will approve it and if that does not happen by 8/8/17, the approval process has to be started over. The Locum Onc who ordered the PET-CT was not in the office Friday afternoon, so hopefully she will talk to the insurance Dr. on Monday. My next appointment with my local Onc is this Friday, so I hope we can get the PET-CT done in time for him to see it. After hearing back from Po and also connecting with a friend/colleague who is currently receiving treatment in Texas and after my husband and I having done some research, we connected with MD Anderson in Houston and I have an appointment with Dr. Nathan Fowler later this month. Have you by chance heard of him or is that a naive question? I saw that he is a Nationally reknown expert on Follicular Lymphoma. Since learning that one can have FL for many years without discernible symptoms and that it can put one at risk for other cancers and that getting an accurate diagnosis is so important regarding getting targeted treatment, we decided to get a second opinion from a reputable source. We did research some well-respected treatment centers on the west coast and while there are many reasons they would be better, we were most impressed with how professional and prompt MD Anderson was. I already cleared their financial dept., they are requesting all my relevant records and the biopsy materials, and I already have an appointment for later this month. Normally, I am not this high-maintenance, but we really want to get this diagnosis nailed, so I can get the best treatment to combat it. Thank you again for sharing your experiences

  9. #9
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    Hello Diane,

    I can see that you are very proactive about getting proper diagnosis and treatment, which is good.

    I do not personally know Dr Fowler, but I am sure his competences will provide you the best possible care - which is essential. In such situations as ours, it is important to feel that we are putting ourselves in the right hands.

    I hope all goes well for you and will be looking forward to reading your news.

    Roz

  10. #10
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    Hi Roz,

    I met with my local Onc yesterday and he confirmed my diagnosis of PBL of Follicular origin. Because there are multiple sites (throughout my skeleton) and b/c I have pain, he is recommending treating it as a grade 3 and wants me start on 6 rounds of R-CHOP as soon as the Echocardiogram can be done and the port gets installed. He also mentioned that I might have to have a bone marrow transplant in the future, which I hope does not become necessary. Of course, I will cross that bridge if I have to. I also picked up what seemed like a small pharmacy of medications! I am still going to MD Anderson to get an independent diagnosis and to find out what their team of experts recommends for treatment, although as I suspected, it will delay the start of my treatment by a week or two. He said I need to start the treatment asap as I am at high risk for more bone fractures, but I do agree with the advice that you and Po gave. My immediate family (my "A-team") is also supportive and in agreement with this decision.

    You were right on the mark regarding getting some short-term medication to deal with anxiety and I actually did already have that from the first Locum that I saw back on 7/22/17. I just have not taken very many. I did take one before the formal bone marrow and bone biopsy and I think it did help some. At that time, I also got some Hydrocodone/Acetaminophen as well to use when I cannot take NSAIDS. I am now trying to alternate so I reduce the chance of having kidney or liver problems. Next steps for me are getting the Echocardiagram done, getting the port installed, seeing my dentist for a check-up, and taking the trip to Houston. I am not sure if the port can get done before I head to Houston. I did not realize there was so much to getting that. I am working when I can right now b/c there are things I should get done and b/c I only want to use my sick days if I really need to. Anyway, that is my cancer update.

    I hope you continue to feel well and that you are able to do most activities that you enjoy . I do have a question, if you don't mind too much:

    Do you have any experience or information about taking Bisphosphonates to reduce skeletal related events/additional bone fractures and pain reduction with our type of cancer? Based on my research of the published scientific studies, there are some promising results for those diagnosed with Multiple Myeloma upon initial treatment. I asked my local Onc about this and he said that was a very good question and that he had thought about that for me, but he was only aware of data for use in "solid cancers." He further said that we could consider it later in my treatment. I am going to ask about this at MD Anderson to see what they think as well.

    Cheers,
    Diane

 

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