Hemorrhagic Cystitis, irritible bladder, Interstitial cystitis and painful bladder syndrome all have similar symptoms and can be mistaken for each other. In this case, I’m writing about a long-term side effect I live with called chemotherapy-induced bladder damage. The damage caused by cytoxan/cyclophophomide.
My daily mantra is- “I wish I knew then what I know now.” On the one hand, no one ever dies from hemorrhagic cystitis. On the other hand, HC increases the risk of bladder cancer which can and does cause death. In addition, HC can cause pain. Lots of pain.
In short, hemorrhagic cystitis is real. Further, hemorrhagic cystitis can be minimized or even avoided completely with evidence-based, non-conventional therapies.
Keep in mind that I arrived late to this party. In other words, it took me several years to identify this side effect and then took me more time to research non-conventional therapies.
Eventually, my pursuits paid off. To be specific, my bladder pain is now a 5 (a couple hours post urination) whereas it used to be an 8-9 two hours post urination. Sometimes I can get 4-5 hours of sleep continuously before I wake and have to urinate. I used to wake 3-4 times every night.
The blog posts linked below document this side effect, my therapies, coping mechanisms, etc for HC aka irritable bladder.
Like all my other long-term and late stage side effects,
Benefit of this therapy?
There are toxic therapies that are “worth it.” Meaning, the benefits outweigh the risks. That is NOT the case for high-dose cyclophosphamide. There are several evidence-based non-toxic therapies available that I could have taken to boost my body’s stem cell production. The challenge is that these evidence-based therapies are not FDA approved.
Alternatives to cytoxan/cyclophosphomide therapy?
This treatment was prescribed to stimulate my body’s stem cell production. I was abut to harvest my stem cells for an ASCT. I would have preferred a session of hyperbaric oxygen therapy in order to stimulate my stem cell production. Further, my ASCT did little for me and I relapsed in less than a year. And cytoxan is cardio-toxic.
Therapies to heal Hemorrhagic Cystitis?
As I outline above, cytoxan is cardio-toxic, caused long-term damage to my bladder which may result in bladder cancer and could easily have been replaced by an HBOT session.
I wish I knew then what I know now.
Have you undergone cytoxan/cyclophosphomide? Do you have irritable bladder aka hemorrhagic cystitis? How do you manage?
Thanks for your time and attention.
“Chemotherapy — Various chemotherapeutic agents, including ifosfamide, cyclophosphamide, busulfan, doxorubicin, dacarbazine, fludarabine, and cabazitaxel, can cause either nonhemorrhagic or hemorrhagic cystitis (HC) (table 1). HC is most frequently described in patients receiving the oxazaphosphorine alkylating agents ifosfamide and cyclophosphamide [1,2]…
Patients undergoing hematopoietic cell transplantation — Patients receiving a cyclophosphamide-containing conditioning regimen prior to HCT are at risk for HC. In several reports, the cumulative incidence is 8 to 17 percent [27-29]. HC is reported following both autologous and allogenic transplantation, and it is more common after a myeloablative regimen than a reduced-intensity conditioning regimen …”
“Cyclophosphamide, an alkylating agent used in the chemotherapeutic treatment of neoplasias, is metabolized into active substances capable of damaging the urothelium when in contact with some enzymes. Amongst several alternative proposals for the treatment and prevention of hemorrhagic cystitis induced by cyclophosphamide the use of a mucolytic agent, N-acetylcysteine is found…”
“Conclusions: According to this animal study using hyperbaric oxygen as adjuvant therapy in humans may be a better tool than mesna alone for the prophylaxis and treatment of cyclophosphamide induced hemorrhagic cystitis.”
“Prior administration of curcumin ahead of cyclophosphamide challenge improved all the biochemical and histologic alterations induced by the cytotoxic drug. Based on these broad findings, it could be concluded that curcumin has proven uroprotective efficacy in this cyclophosphamide haemorrhagic cystitis model…”