Help For Husband Suffering With Painful Radiation Cystitis Following Treatment

My husband finished 7 weeks of radiation (33 treatments) at the end of April. He also had chemo each week to enhance the radiation, and now has 5 cycles of chemo to go every 3 weeks. He has been on pain medication because at first the tumor was pressing against a nerve and caused considerable pain. He has taken oxycontin and hyrdrocodone daily for three months. At one point, however, before the end of the radiation treatments, he was "weaning" himself off of the pain medication since the pain was much less. Then he completed the radiation and has what I believe from reading in books such as THE GUIDE TO SURVIVING CHEMOTHERAPY AND RADIATION "radiation cystitis". He has tried several drugs to rid himself of the intense pain and burning in his bladder, especially after urination, including Pyridium, Pyridium Plus, and B & O Suppositories, as well as increasing the strength of the Oxycontin. Nothing seems to work, and this is causing him to be very depressed. It is affecting his sleep and appetite which were not good to begin with. When he went in for his last chemo, he was drained and thought that he should skip treatment that day. The doctor reviewed his blood counts and said everything looked good. The medical oncologist and the radiation oncologist both have said he's doing well, though he wonders how they know, and if he's doing so well, why is he in such pain? He has said that if he could just get rid of this intense pain and burning, he could function better. As it is, he has taken to bed and seems to be clinically depressed. (He just started taking Paxil.) Has anyone suffered with cystitis following radiation therapy, and if so, how did you treat it? Have we just not given the drugs time to work? We would appreciate any advice.

Only yesterday did I register at this website. Almost three years ago I had endometrial cancer - surgery and radiation (internal & external). The first and best thing you can do is educate yourselves which sounds like exactly what you're doing. Second, since you are adults, you can make the decision of whether to begin, continue, or end any treatment for anything. I stopped the external radiation only after 7 treatments because it caused so much pain. How your husband lasted through 33 treatments is amazing! Is he almost over the chemo? Third idea is to seek a second opinion whenever, doesn't have to be before you begin treatment. Who began the Paxil? Depression is quite common among cancer patients. I also suffered depression which really needs to be assessed by a therapist as well as a psychiatrist (maybe the laws are different in your state as who can dispense the medication). Besides being a patient, I was studying nursing, so I've been on both sides of the fence. If you birthed children and used any natural techniques for pain relief, maybe that would help your husband. Letting the sunshine in the room, taking him out on a porch, having him listen to music on headphones to drown out the other sounds so he can put all his energy to the music, for example classical, or jazz, and putting a blanket in his room of a soothing color. These can all help him relax and focus on healing and strengthening. With chemo his RBC will needs rebuilding. His best medicine is You! You also take care of yourself, have You time every day. Good luck!

My husband has been suffering from radiation cystitis in 2005. Radiation was 3 yrs ago but spring 2005, began bleeding from bladder as well as worsening of lack of control of urination. His urologist cauterized the bladder lining but bleeding did not stop. In May, following a blockage and trip to ER, he began hyperbaric oxygen therapy. Spent June in hospital with catheter, & daily treatments then home and continued 5 weeks of 2 hr. daily treatments. This has helped heal the bladder lining but bleeding still not stopped completely. Hyperbaric oxygen has high success rate for healing. Other patients in chamber with him, w/ other problem areas, are having success. He is not in pain, but we are also trying vitamins & a supplement Hesperidan which is a bio flavonoid from citrus fruits which strenthens capillaries to see if this will help stop some bleeding. It is very frustrating with no good options for treatment. Still searching for treatments which have potential to heal and not make things worse. Janraye

In October 2002 I underwent a radical Prostectomy for prostate cancer. Surgery did not get it all so I underwent 33 radiation treatments over 7 weeks. All subsiquent PSA tests since treatment have been negative. Last December I was diagnosed with Radiation Cystitis. I underwent three CYSTO/TURBT surgerys. Nothing improved so in May of this year, I was started on a drug called Elmiron. I take 100MG capsules 3 times a day for the cystitus and take Bactrim 400/80MG to help my immune system fight the bladder infection. It has helped dramatically. After about 4 weeks I began to realize the spotting of blood was becoming less noticible and the pain was getting less severe. Now I am begining to regain more baldder control and very infrequently experiance any pain. I understand that Elmiron is not normally used for radiation cystitis and was told this from the start. All I know is that it has helped my ability to live a more normal life. Talk to your Urologist and discuss this option.

I just came across your huband's severe problem with radiation cystitis. I hope by now that the problem and pain have been addressed and your husband is well once again. I have radiation cystitis within the bladder and have just started Hyperbaric Oxygen Therapy. You may wish to look in to this and I believe this could be the way to go. Howard

 

On 8/22/2006 Gunny wrote:

I just came across your huband's severe problem with radiation cystitis. I hope by now that the problem and pain have been addressed and your husband is well once again. I have radiation cystitis within the bladder and have just started Hyperbaric Oxygen Therapy. You may wish to look in to this and I believe this could be the way to go. Howard

 

I had 3D conformal radaiation to the prostate area a year and a half after having a radical prostitectomy. 2 years after the radiation, I started to see blood (streaks) in my urine and several months later, had major bleeding episode and was passing clots.

 In February of '07, I had a cystoscopy - the area was cauterized, a tissue biopsy done, and my urologist seemed confident that I would be back to normal in no time.

Here it is, four months later and I'm having frequent urination, some minor burning, pain after sex, but the big deal is having to wear a pad to avoid embarrasing accidents. My Dr. has me taking Oxybutrin and I will be seeing a bio-feedback specialist to help train my muscle spasms.

The medication is helping, but at 46 years old, my goal is to find a more permanent solution to this problem.It is affecting my life, my marriage, and my mood.

I have heard some info on Hyperbaric Oxygen Therapy, but would like to know more from someone who is trying it.

 Anybody??

 

On 6/13/2007 Lance wrote:

 

On 8/22/2006 Gunny wrote:

I just came across your huband's severe problem with radiation cystitis. I hope by now that the problem and pain have been addressed and your husband is well once again. I have radiation cystitis within the bladder and have just started Hyperbaric Oxygen Therapy. You may wish to look in to this and I believe this could be the way to go. Howard

I had 3D conformal radaiation to the prostate area a year and a half after having a radical prostitectomy. 2 years after the radiation, I started to see blood (streaks) in my urine and several months later, had major bleeding episode and was passing clots.

 In February of '07, I had a cystoscopy - the area was cauterized, a tissue biopsy done, and my urologist seemed confident that I would be back to normal in no time.

Here it is, four months later and I'm having frequent urination, some minor burning, pain after sex, but the big deal is having to wear a pad to avoid embarrasing accidents. My Dr. has me taking Oxybutrin and I will be seeing a bio-feedback specialist to help train my muscle spasms.

The medication is helping, but at 46 years old, my goal is to find a more permanent solution to this problem.It is affecting my life, my marriage, and my mood.

I have heard some info on Hyperbaric Oxygen Therapy, but would like to know more from someone who is trying it.

 Anybody??

I had radiation in 2004 and developed blood in the urine and then
clots resulting in blockage.  Had the usual treatments with no significant
improvement. 

In the summer of 2007 I had Hyperbaric Oxygen treatment (HBO) consisting of 50
treatments and what a difference!  No more blood red urine, blockage, no clots, and only an
occasional touch of pink in the urine after heavy physical activity every few weeks. By all means talk with your urologist about HBO. 

I had mine at Akron General Medical Center and they are great.  The RN, Vicky Erdman is the best.

 

Take care and good luck

Richard of Norton Ohio 

 

RE: Your inquiry for others who have experienced radiation cystitis, subsequent to cancer radiation therapy....My radiation was 3 years ago.  Some of the pain has decreased, but, apparently, will never be ABSENT. I am currently trying very hard to discontinue Fentanyl (durgesic) pain patch use. Fentanyl has been extremely addictive, and i am having some difficulty with that.

 Initially, I had EXTREME hematuria, with a HUGE amount of blood in the urine, and much greater trouble with pain, frequency and overall management. Has your husband tried hyperbaric oxygen therapy? I underwent 55 sessions of that with remarkable results. The bleeding was completely stopped, some improvement with pain. Hyperbaric oxygen therapy is an intense process, but, in my opinion, it is worth the inconvenience.I could elaborate upon the process here, but, perhaps you have already heard about it from your doctors.

 Since I am informed that additional and possibly, more severe bladder involvement is possible to present many years (15 years, for instance) after the radiation, that is my strongest worry regarding bladder involvment. Since the bleeding has stopped, and the pain is decreased, I am oftenreminding myself that these could be only TEMPORARY improvements, and are not to be mistaken for real or permanent victories.

 Regarding pain, You have already mentioned the pitfalls associated with the drugs. They are very effective with bringing pain relief, but can be difficult to discontinue.

 Best of luck to you.

Barbara

I am another firm believer in hyperbaric oxygen therapy to treat radiation cystitis. Between Nov 2005 and Feb 2006 I completed five weeks of external radiation and a seed implant to treat prostate cancer. I experienced no immediate (short term) radiation damage but began experiencing cystitis, proctitis, prostatitis and an inflamed urinary tract--all accompanied with frequent strong urges, frequency problems, incontinence and and excessive BMs (up to 12 to 14 daily), commencing in April 2007. My oncologist/radiologist, urologist and gastroenterologist diagnosed my problem as side-effect radiation damage and told me that there was no effective treatment for the problem. They explained that they could treat the symptoms and pain, but that there was no cure. I tried several of the bladder medicationss -- Sanctura, Oxybutynin , Enablex and Vesicare and bowel meds -- Canasa, Hyoscyamine (Levsin, Levbid), Loperamide (IModium) and Metamucil. None of the bladder meds were effective for incontinence or frequency problems, and the bowel meds were effective only to the extent that I could withstand associated pain and misery. Then I learned outside my medical support team about hyperbaric oxygen therapy as a possible solution for radiation cystitis. After completing 114 HBOT 2-hour treatments between Oct 2007 and June 2008, I am completely off all associated bladder & bowel associated meds and have a new lease on life. I estimate that I have regained about 90 percent of my pre-radiation damage bladder and bowel functions. Remaining symptoms include the occasional bladder dribble and more frequent BMs (3-5 daily, on average). I am convinced that HBOT saved my life because my health was on a steady downward track from April to Oct 2007. Once more, I am now enjoying life! Larry

On 2/17/2008 usalady wrote:

RE: Your inquiry for others who have experienced radiation cystitis, subsequent to cancer radiation therapy....My radiation was 3 years ago.  Some of the pain has decreased, but, apparently, will never be ABSENT. I am currently trying very hard to discontinue Fentanyl (durgesic) pain patch use. Fentanyl has been extremely addictive, and i am having some difficulty with that.

 Initially, I had EXTREME hematuria, with a HUGE amount of blood in the urine, and much greater trouble with pain, frequency and overall management. Has your husband tried hyperbaric oxygen therapy? I underwent 55 sessions of that with remarkable results. The bleeding was completely stopped, some improvement with pain. Hyperbaric oxygen therapy is an intense process, but, in my opinion, it is worth the inconvenience.I could elaborate upon the process here, but, perhaps you have already heard about it from your doctors.

 Since I am informed that additional and possibly, more severe bladder involvement is possible to present many years (15 years, for instance) after the radiation, that is my strongest worry regarding bladder involvment. Since the bleeding has stopped, and the pain is decreased, I am oftenreminding myself that these could be only TEMPORARY improvements, and are not to be mistaken for real or permanent victories.

 Regarding pain, You have already mentioned the pitfalls associated with the drugs. They are very effective with bringing pain relief, but can be difficult to discontinue.

 Best of luck to you.

Barbara

 

On 8/9/2005 Janraye wrote:

My husband has been suffering from radiation cystitis in 2005. Radiation was 3 yrs ago but spring 2005, began bleeding from bladder as well as worsening of lack of control of urination. His urologist cauterized the bladder lining but bleeding did not stop. In May, following a blockage and trip to ER, he began hyperbaric oxygen therapy. Spent June in hospital with catheter, & daily treatments then home and continued 5 weeks of 2 hr. daily treatments. This has helped heal the bladder lining but bleeding still not stopped completely. Hyperbaric oxygen has high success rate for healing. Other patients in chamber with him, w/ other problem areas, are having success. He is not in pain, but we are also trying vitamins & a supplement Hesperidan which is a bio flavonoid from citrus fruits which strenthens capillaries to see if this will help stop some bleeding. It is very frustrating with no good options for treatment. Still searching for treatments which have potential to heal and not make things worse. Janraye

 

My Dad is going though this right now. Can you give me any more information. I feel like we are at a stand still. What was your out come.