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Thread: Nabilone/Cesamet

  1. #1

    Nabilone/Cesamet

    Has anyone had experience with this drug? I've had low appetite issues for quite some time while on Romidepsin and after talking with my oncologist and GP, was prescribed this as an appetite stimulant. From what I've read so far, it is a synthetic THC (marijuana) that is usually prescribed for chemo related nausea and vomiting relief but is also sometimes prescribed off label for pain or appetite stimulation.

    I plan to start it this weekend and am looking for other peoples experiences.
    Male 52.
    dx Hodgkins Lymphoma IVB (mixed cellularity) July 2004, successful ABVD (8 cycles) completed March 2005, 'cured' March 2010.
    dx NHL PTCL-NOS IVB June 2012 - 4 x CEOP, poor response. 2 cycles of GDP then ASCT in Nov 2012, relapse in April 2013. 6 cycles GDP ending Oct 2013.
    Started Romidepsin/Istodax May 2014. 11 cycles finished March 2015. Relapse March 2015, one 'mass', 20 days rads ended May 4

  2. #2
    Administrator Top User Kermica's Avatar
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    No idea, potatosoup, sorry. I wouldn't expect much of an issue though, the side effects should be minimal.

    Good luck with it and good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #3
    sorry potatosoup...i don't know that one. I hope it does the trick for you.
    I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing.

    Only I will remain.

  4. #4
    Super Moderator Top User ddessert's Avatar
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    A former member named Gerber posted this in the pancreatic cancer forum in 2013:

    Turns out that the Nabilone (synthetic marijuana) they had put him on for appetite was just making him stoned and not helping with appetite.

    Not a ringing endorsement, but there is a lot of individual variation in responses to treatments.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  5. #5
    Regular User
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    Best of luck with your rounds of treatment. I've heard these drugs are effective at stimulating an appetite, so hopefully it does the trick.

  6. #6
    An update on the Nabilone. I've tried varying doses and times of day and received very little appetite stimulation. What I found awesome is the sleeping aid of Nabilone, I take 1 mg about 9:30 PM, get to be bed around 10 and am usually comfortably asleep within 1/2 hour. I tend to sleep an awesome 7 to 8 hours, up for the bathroom and back to bed for another couple hours of napping. Of course having just finished radiation, I've needed lots of sleep and this is wonderful.

    I'm now fully licenced for medical marijuana and am trying my first purchase. I went with a low THC but moderate CBD content and it is working great so far, almost double appetite in the last 2 days.
    Male 52.
    dx Hodgkins Lymphoma IVB (mixed cellularity) July 2004, successful ABVD (8 cycles) completed March 2005, 'cured' March 2010.
    dx NHL PTCL-NOS IVB June 2012 - 4 x CEOP, poor response. 2 cycles of GDP then ASCT in Nov 2012, relapse in April 2013. 6 cycles GDP ending Oct 2013.
    Started Romidepsin/Istodax May 2014. 11 cycles finished March 2015. Relapse March 2015, one 'mass', 20 days rads ended May 4

 

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