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Thread: New symptoms to be worried about?

  1. #1
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    Aug 2017

    Lower back pain, new symptom to be worried about?

    Hi all
    I posted here a while back when my mom was initially diagnosed with a brain tumor, biopsy revealed it was primary cns lymphoma. I've realized that symptoms and behavior wise cns lymphoma has more in common with other brain tumors than it does with lymphoma so I'm posting my query here.
    She finished her treatment in February which included 4 weeks of radiation in December. An mri done in Jan following persistent headache showed no new spots and only the scarring left by radiation. Now since feb she again started getting headaches, docs say it's because of the changes caused by radiation so prescribe her 2 mg twice a day dex for 3 days then 2 mg once a day for 3 days then stop. This has been going on since then so she has been unable to completely come off dex. Once she stops the headache comes back in a few days, it's not severe though and the drs say it can take months for these changes to settle down. The real cause of worry now is that she's been complaining of lower back pain since the last couple of days. This has me completely freaked out. Her follow up is due in late april. I should mention that this lower back pain isn't too severe and otherwise she's doing fine, just a little wobbly on her feet(been so since the surgery)and a bit too emotional (i heard dex can do that?)
    Am i worrying too much about it or maybe not enough? She's getting treatment in a different city and all the flight tickets are booked otherwise we would already have bumped up the appointment. Any insights on this guys?
    Last edited by Hopewins; 03-28-2018 at 07:21 AM. Reason: changing title

  2. #2
    Moderator Top User
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    Mar 2012
    Dex should be tapered off, not stopped abruptly, otherwise the body's natural steroids may not kick back in. Suggest to her doctors that she goes back on the dex and see if that stops the headaches, and may also stop the back pain - the spine is part of the central nervous system. Then if so try gradually reducing it, 0.5-1mg at a time. 2mg of dex should not have too many side effects, some people here are taking over 10mg.

    Is she being seen by a specialist neuro oncologist? Primary brain tumours are not like other cancers.
    Wife died from a GBM, November 2012. The full story in this thread

  3. #3
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    Aug 2017
    She's being seen by a haemato-oncologist to whom we were referred to by her neurosurgeon. It still confuses me though whether this is brain cancer or being lymphoma in brain would be called blood cancer?
    As i mentioned before that she got her treatment in a different city, so when she develops any symptoms (headache mainly) we call her dr (not her primary onc, his associate) and he prescribes 3 day 4mg, 3 day 2 mg course of dex. I guess reducing it 2 mg at a time is his idea of tapering off. This has happened 3-4 times since feb. I do worry about this rather abrupt course of dex. It's been around 12 days since she's stopped taking it this time.
    Her lower back pain comes and goes on its own and her headaches are fine for now. But she's on pain meds for a completely different reason (toothache, getting RCT) so i suppose those could be the reason of back pain and headache staying under control.
    Hope she does not have to back on the dex but if she does then will reduce it 1 mg at a time and not the 2 mg suggested by the doc. 23rd April can't come soon enough when she has her mri scan. The lower back pain suggesting the possibility of something really bad is terrifying.

  4. #4
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    Dec 2011
    Reducing 2 mg at a time seems like kind of a fast taper for dex.

    I don't know if neuro-oncologists treat lymphoma in the brain or not; they do tend to be experts on dex though. Sounds like the regular doctor isn't. It's such a difficult drug.

    Sometimes lower back pain is just lower back pain. Hope that turns out to be the case with your mom.

  5. #5
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    Aug 2017
    I hope so too Gbmsibling. But the uncertainty of it all is scary, it's as if we're living in a suspense novel trying to guess what's going to happen next. Today she again complained of a mild headache but the painkillers she's taking due to her dental problems take care of it. And now I'm left wondering whether its edema and the painkillers are just hiding it while the edema goes unnoticed and gets worse? Then there's the swelling in her feet for the past 2-3 days, we were going to call her dr today but it looks better now. Does anyone have any idea what could be causing the swollen feet. She's been off of dex for over a week now.
    Other than these Mom is doing fine, getting into a routine- she sometimes cooks, takes care of her plants, goes for walks etc.

  6. #6
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    Dec 2011
    Ordinary painkillers probably wouldn't mask pain from cerebral edema.

  7. #7
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    Aug 2017
    So here's an update. Mom had her first post treatment scan and I'm happy to share that it was clear. Also the docs are now taking a more systematic approach towards dex because her headaches haven't stopped and i suppose they saw some radiation damage or edema on the scans, i dont know the details. So they're starting her on 2mg and will gradually reduce it over a period of 2 months.

  8. #8
    Super Moderator Top User po18guy's Avatar
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    Feb 2012
    Your mom had lymphoma that occurred in her brain (CNS). Yes, it was a tumor, but that tumor was made of lymphocytes, not of brain cells - huge difference. Lymphoma is a tumor of either B or T Lymphocytes, white blood cells which are integral parts of the immune system and travel freely throughout the body fighting infection - even in the brain. For some unknown reason, when a single lymphocyte mutates and begins making clones of itself (cancer), they take up residence in the brain, spine, eyes, skin, pancreas, kidneys, bladder, liver, lungs, you name it. Wherever blood flows, lymphoma may occur. No rhyme or reason as to where they choose to take up residence. CNS lymphoma is very rare, but is nothing more than lymphoma. It is not and never has been brain cancer as we normally think of it.

    Secondly, inflammation caused by the tumor presses on portions of the brain and causes behavioral and bodily function to change in unpredictable ways. The lymphoma tumor (or any other type) can cause symptoms/behavioral changes both in its expansion as well as in its contraction. The brain tissue was compressed and is now expanding. At some level, it produces symptoms going both ways. A crude analogy is if you walked on fresh cement and suddenly realized it, stopping in your tracks. You look back and see your footprints. You made damage walking into it, and you cannot walk back out without also leaving damage/evidence of your presence.

    At some level, there is pain or other symptoms both in the injury as well as the healing. If you have had a broken bone, for example, you have experienced this. I hope that this helps explain why mom still has symptoms. As to worry, it is useless, counterproductive and 100% natural. It cannot and does not help - so why do we do it? Facing the unknown, we oftentimes do not know anything else to do. Worry can be replaced by confidence, if we choose to allow that. Just my take on it.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
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    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  9. #9
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    Aug 2017
    Thank you so much po18guy for your very kind reply. I had my exams which kept me busy for the better part of last month.
    We are learning as we go, adjusting to our new normal. Learning to make the distinction between what's a symptom and what's just side effects or after effects. It's not easy not wanting to run to get a scan everytime something new pops up, but we're trying (actually it's just me, rest of my family members are more cool headed about it mom included).
    Lastly, I'm in awe of the kindness, wisdom, knowledge and eloquence of the mods here. You guys are incredible for doing what you're doing. Thanks!

  10. #10
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    Aug 2017
    Ok it seems as if i started this thread under a very appropriate heading, because despite all the assurances and adjusting to the new normal I'm not able to 100% let go of these worries.
    So mom's short term memory seems to be a little worse lately. It wasn't as bad before. My question is that can all these side effects and after effects crop up months after ending the treatment in the form of new issues? Or they would be there from the beggining and anything new months later would be a legitimate cause of worry?
    I'm sorry , i know I've been repeating the same thing over and over again and it's annoying. But this seems to be the only place where i can get some answers and guidance and I'm very grateful for that.


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