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Thread: Seeking Advice on energy drinks

  1. #11
    Super Moderator Top User po18guy's Avatar
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    I really don't remember that so much (although it happened) as I do it attacking my skin. Tweezing flaking dead skin off of painful, inflamed body parts was not my favorite side effect. There was no sleep without a healthy dose of pain killers then.
    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.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    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.

  2. #12
    Moderator Top User HighlanderCFH's Avatar
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    Quote Originally Posted by potatosoup View Post
    Red bull, Monster, Rockstar, 5 Hour Energy, etc.

    almost like a punch-line to a joke. Several days ago, I walked into a gas station convenience store and while waiting for the clerk to ring up my bottle of water I started looking around and noticed all the 'energy' drinks.

    I've never tried an energy drink in my 50+ years of life and now am wondering if they might help me with energy levels. I've been on Romidepsin for almost 10 months now and it is working well to keep my PTCL in check. My major complaint in the quality of life department is low energy, I sleep 8 to 10 hours most nights but some days just getting dressed and hanging out at home is all I can do. Other days can be pretty good with being able to work in my garage or yard up to 6 hours taking breaks every hour or 2. I'm wondering if an energy drink on the slow days might help me? Or would it hurt me? I try to take the minimum of meds or anything that may affect the chemo the day prior and for a couple days after so would consider the drinks more on the 3 middle days between infusions.

    I've searched the forums and find very little mention of these energy drinks. Please let me know what your experiences and concerns would be.

    I'm not sure if this is the best forum so could admin move this if required.
    I can offer an answer that is laced with some humor. A few years ago, after my annual physical at Mayo Clinic, I was walking down the hallway with my doctor as I was leaving his office.

    I asked him about the five-hour energy drink being advertised all the time. And, in paraphrase, he chuckled and told me, "If you believe in that stuff, I've got a bridge that I've got to talk to you about." LOL
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  3. #13
    Administrator Top User ChemoMan's Avatar
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    Quote Originally Posted by po18guy View Post
    I really don't remember that so much (although it happened) as I do it attacking my skin. Tweezing flaking dead skin off of painful, inflamed body parts was not my favorite side effect. There was no sleep without a healthy dose of pain killers then.
    Blimey that's bloody awful

    What surprised me was how fast it got to my bladder. I had a bag of MabThera Then the Dox ( I think...could have been after the Vincristine ??) Anyway 10 minutes after the IV was started I had to pee and it was blood red...in 10 minutes
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  4. #14
    Administrator Top User ChemoMan's Avatar
    Join Date
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    "If you believe in that stuff, I've got a bridge that I've got to talk to you about."

    I think I know the bridge...I think it is in Kermica's area. It is close to a big statue that you might also be interested in
    Age 62
    Diffuse Large B cell Lymphoma
    Stage 2a Bulky presentation
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011

    NED AND DECLARED CURED on the 2/01/2013

    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    Still alive in 2019 !

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  5. #15
    Moderator Top User HighlanderCFH's Avatar
    Join Date
    Nov 2011
    Posts
    7,129
    Nope, I blew all my $$$ on the last statue I bought. LOL
    July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA 9/ 2011 = 5.7.
    Local uro DRE revealed significant BPH, no lumps.
    PCa Dx Aug. 2011 age of 61.
    Biopsy DXd adenocarcinoma in 3/20 cores (one 5%, two 20%). T2C.
    Gleason 3+3=6. CT abdomen, bone scan negative.
    DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
    Surgeon was Dr. Matthew Tollefson, who I highly recommend.
    Final pathology shows tumor confined to prostate.
    5 lymph nodes, seminal vesicules, extraprostatic soft tissue all negative.
    1.0 x 0.6 x 0.6 cm mass involving right posterior inferior, right posterior apex & left
    mid posterior prostate. Right posterior apex margin involved by tumor over 0.2 cm length,
    doctor says this is insignificant.
    Prostate 98 grams, tumor 2 grams.
    Catheter out in 7 days. No incontinence, minor dripping for a few weeks.
    Seven annual post-op exams 2012 through 2018: PSA <0.1
    Semi-firm erections without "training wheels," usable erections with 100mg Sildenafil.
    NOTE: ED caused by BPH, not the surgery.

  6. #16
    Administrator Top User Didee's Avatar
    Join Date
    Jun 2010
    Posts
    11,461
    Rats. Cman and I know of a coat hanger looking one here that features every year in the New year's eve fireworks. I heard it is going pretty cheaply. We would only charge a small commission on the sale.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

  7. #17
    alright i got you all beat on bridges for sale..... mine is golden but in actuality looks more like Cmans pee. LOL
    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.

  8. #18
    Quote Originally Posted by po18guy View Post
    I would ask your hematologist, as some energy drinks may contain natural substances that, while producing temporary energy, are known or suspected to suppress the immune system. Another subject to broach with doctor: After about a year and a half on Romi, my dosage was reduced to two infusions per 28 day cycle, rather than three. This helped appetite and energy levels. A year or so after that, dosage was reduced once again to a single infusion in each 28 day cycle. That made a huge improvement in quality of life, although the lymphoma defeated it about two years after that. But that applies only to my case, and most on long-term Romi did experience a relapse at some point. Since this is a new drug, and records are still being compiled, it might be worth asking about a dosage adjustment, especially if/when you are in full response.
    I do plan to talk to my onc next time I see him about energy drinks. Having done the chemo that I have, I'm wary of anything I add to my body. I asked him at last visit about dosage and cycle changes and he was reluctant to discuss anything yet. Now that there is a second patient responding at the same treatment hospital I attend, they may have more discussions and be willing to try. I haven't found any literature on dose changes except due to low platelets or neutrophils and no response from Celgene yet.
    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

  9. #19
    Quote Originally Posted by shaww View Post
    energy drinks are nothing but caffeine and sugar.
    I've checked out the ingredients on a few and in addition to the caffeine and sugar are B vitamins, taurine, ginseng and many other chemical sounding names. Some of these now claim to be sugar free to eliminate the sugar crash.
    I'll wait for my Dr's opinion before testing any. In the meantime I just finished a great breakfast of streaky bacon, basted eggs (a Western Canadian term), toast and a cup of coffee. Banana to come when I'm off the keyboard. And this is after chemo yesterday with minimal anti-nausea drugs.
    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

  10. #20
    Quote Originally Posted by po18guy View Post
    For its color, Doxorubicin is known colloquially as "Red devil" or "Red Bull" Its festive coloring well-known to members of the lymphoma club. Always seeking variety, I was able to enjoy its refreshment in both types: original formula, and liposomal encapsulated!
    I only had the original Dox as part of my ABVD 10 years ago and that was a treat. My oncologist was at a city cancer center but I was allowed to get my chemo at a rural cancer center near home so I could cut my travel time in half, no parking fees, all the advantages of more personal care. The difference was no restrooms on the 75 km drive back home so I decided to try to 'stain' some fence posts red. No luck, even after several applications the red didn't stay, due to the minimal rain or sunlight, not sure. I recall lots of IV fluid being part of the protocol to flush the kidneys and the recommendation to drink plenty of fluid for the first 24 hours as well so there were up to 3 stops in my 45 minute drive. I never was able to create a full Canadian flag in the snow though, one rectangle was about it.

    The interesting memories we have!
    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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