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My Hemorrhagic Cystitis aka Irritable Bladder

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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 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 can cause bladder damage which can and does cause death. In addition, HC can cause pain. Lots of pain.

With evidence-based but non-toxic therapies, hemorrhagic cystitis can at least be minimized if not completely avoided. I think I have minimized my bladder pain over the years but the pain will always be there to some extent. 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.

The 6 blog posts linked below document this side effect, my therapies, coping mechanisms, etc for HC.

Like all my other long-term and late stage side effects,

  • I was not told about the likelihood of this side effect before my therapy
  • I had to figure out the side effect, the seriousness and possible therapies
  • I wrote about the experience in PeopleBeatingCancer.org over the months and years following treatment

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. 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cytoxan is cardio-toxic, caused long-term damage to my bladder which may result in bladder cancer and could easily have been replaced by an HBOT session.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.

David Emerson

  • MM Survivor
  • Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


Chemotherapy and radiation-related hemorrhagic cystitis in cancer patients

Chemotherapy — Various chemotherapeutic agents, including ifosfamide, cyclophosphamide, busulfan, doxorubicin, dacarbazine, fludarabine, and cabazitaxel, can cause either nonhemorrhagic or hemorrhagic cystitis (HC) (). 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 [28]…”

Multiple Myeloma Survivor- Hemorrhagic Cystitis, Bladder Cancer

Cyclophosphamide increases the risk of developing some kinds of cancers, which can occur years after taking this medication…Bladder cancer is the most common cancer related to cyclophosphamide”

In the case of cytoxan, an MM patient can experience short-term (nausea, hair loss), long-term (hemorrhagic cystitis, irritable bladder) and late stage (bladder cancer) side effects…

I understand that conventional oncology uses chemotherapy regimens that cause side effects. What bothers me is that there are evidence-based, non-toxic therapies that can reduce or even eliminate many of these side effects…

Multiple Myeloma Side Effects- Chemotherapy-induced Bladder Damage

These results suggest that taurine offers a protective effect against Cyclophosphomide-induced urinary bladder damage… Moringa leaves play an important role in ameliorating and protecting the bladder from CP toxicity”

Got Cancer? Chemotherapy is toxic- less is more

“Patients treated with chemotherapy for a solid tumor are at much higher risk than was previously thought of developing a highly lethal blood cancer as a result of that treatment.”

No matter what cancer you have, solid tumor, blood cancer, the more chemotherapy you undergo, the greater your risk of adverse events. Common side effects of chemotherapy and radiation run the gamut. From short term side effects such as nausea, hair loss, anemia, etc. to long-term adverse events such as chemotherapy-induced nerve damage, to chemotherapy-induced cognitive dysfunction (chemobrain) to chemotherapy-induced heart damage…”

Saw Palmetto- Kill Multiple Myeloma, Urinate, Sleep Better-

Urodynamic Investigation of Cyclophosphamide-Induced Overactive Bladder in Conscious Rats

“Overactive bladder (OAB) can be caused by many factors such as inflammation, bladder outlet obstruction, neurogenic factors. We performed an intraperitoneal (ip) injection of cyclophosphamide to induce cystitis in rats, which causes their detrusors to overact, to provide a valuable disease model for discussing OAB pathogenesis and to study effective curing methods…”

NAC (N-Acetyl Cysteine)-Heart, Bladder, Chemobrain, Kidney

“To be specific, NAC helps me manage my:

  • chemotherapy-induced Cardiomyopathy (heart),
  • hemorrhagic cystitis (irritable bladder),
  • chemotherapy-induced cerebral dysfunction (chemobrain)

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