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Hyperbarics oxygen

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

hello ladies,

just wondering have any of you been referred to or heard of Hyperbarics oxygen treatment for after effects of radiation? I have been dx with radiation cystitis and pelvic radiation disease. I know nothing about this intervention.  My quality of life has suffered greatly since radiation and it only gets worse. I’m hoping to get some information from you all. You have such a great resource with vast knowledge. Thank you in advance. 

zsazsa1
Posts: 288
Joined: Oct 2018

Roses, I am SO sorry that you are going through this!  A quick search showed some papers indicating that hyperbaric oxygen therapy did help with healing in about 2/3 of patients.

Did you have 4 field whole pelvic radiation?  Did you have intensity modulated radiation (IMRT) directed at the pelvic node fields?  How high up were they trying to treat?  When did you finish treatment?  When did your symptoms start?  What are your symptoms?

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

It was aimed at pelvis. 2 Tattoos on hips in line with my crouch & 1 in the lower part of pubic hair. I finished treatment mid June 2018. I had complete bladder retention after radical hysterectomy and had to self catheterize all the way through 26 treatment with 3 degree radiation burns at end of treatment. In December 2018 my bladder decided to start dumping on its own.  I have Had horrid bladder and abdominal pain Since the middle of radiation. I have been dx with radiation cystitis and pelvic fibrosis which I assume is Pelvic radiation disease. I now have total incontenience which causes constant painful rashs. My uro gynecologist will not do bladder bulking due to the bleeding cystitis. The uro dynamics show my bladder will not expand and urethra is too weak to hold urine in bladder. 

I know there are so many others who suffer greater side effects for which I feel awful and I don’t want to sound like a baby but,, my quality of life is severly compromised.

i‘ve beentold I have a very unusual and complex case (not always good to be special). My oncologist is saying I need to do the least invasive interventions because I’ve had changes she’s never seen. Sooooo, she is referring me to Hyperbaric oxygen treatment. My sorry if this TMI. I just had a ct scan which was sort of clear. I’m open to any and all suggestions. 

Thank for asking. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2541
Joined: Mar 2013

Roses, I am sorry to hear all this.  I really hope you can find someone who can help you.  It's not TMI, you may be helping others who will come along.  

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

I’ve been reluctant to post this because I don’t want to discourage others from external radiation treatment but I sure wish someone would have warned me. I would not have had it!!

thank you for your kind words

zsazsa1
Posts: 288
Joined: Oct 2018

It is good that you are posting this.  I made the decision to go with external pelvic radiation, IMRT, and it was a very, very difficult decision.  I'm suffering through it, with pretty bad diarrhea (although the probiotics have helped), mild cystitis, and terror of what may be to come.  And it may not have been necessary, or it may have saved me, or it may have been for naught.  Such an awful decision.

Meanwhile, I hope that the hyperbaric oxygen therapy helps.  If you are in constant pain, would a cystectomy and urinary diversion be more appropriate at this point?  I mean, that sounds horrible, too, but if you're in constant pain, and terrible rashes from incontinence, it might be a better option.

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

thank you for the suggestions but those interventions are too invasive at this point. I may be forced to do something more drastic Later. 

I wish you an easy course with your radiation again odds are you won’t have any long term difficulties. Please keep me posted. Sending good vibes your way. 

MoeKay
Posts: 196
Joined: Feb 2004

Here's a link with some information on HBOT, including indications and possible side effects:

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/complications-of-hyperbaric-oxygen-treatment. 

I haven't had HBOT (see my response to your earlier post on radiation cystitis), but my urologist who referred me as well as the physician I had a consult with at the hyperbaric center indicated that they have seen a fairly good response rate after treatment. 

Good luck with getting some relief.  I hope you will be able to get all your questions answered at your consult. 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

As others have pointed out, please do not feel bad about telling us about your radiation problems. It helps greatly to know the side effects, even if they are rare, and any treatments offered to you. You are going to be helping someone now or in the future to make an informed decision. We are here for you and hope the treatment gives you some relief. Keep us posted. 

xxoo

Denise

 

CheeseQueen57's picture
CheeseQueen57
Posts: 781
Joined: Feb 2016

It must be awful. urinary tract stuff ruins your life. We are thinking of you and hoping you get some relief. Makes my pee bag seems pretty minor. 

MAbound
Posts: 828
Joined: Jun 2016

I'm so sorry you are going through this Roses. This is what everyone fears as a possibility of having radiation and it's just awful that it got you. Has anyone suggested using A&D ointment to the areas that you get the rashes? It's healing and also a barrier to further irritation from incontinence. 

zsazsa1
Posts: 288
Joined: Oct 2018

Makes complete sense that diaper rash ointment should help.  Balmex is my favorite for infants, because it can be washed off pretty easily with soap and water.  I think you should try them both.

evolo58
Posts: 293
Joined: Dec 2017

Calmoseptine. I had a nasty rash in an awkward rear area from the Doxil, and I found that helped the most of the ointments I tried. The pharmacist recommended it. It helped for other Doxil rashes as well. 

If any ad exec wants a spokesperson, I'm happy to try out! :)

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

I have used all the products discussed & I particularly like Calmoseptine with Bag Balm over the top. I too would do an ad for them,,, no pictures please!

i just received the results of my urine culture. 3 bacteria,,, give me a break 3. My uro gynecologist said he’s never seen 3 in a UTI. No wonder I’ve been feeling so awful. 

I have hyperbaric consult  Wednesday. Fingers crossed. 

Thank you all you ladies for your kindness & response. 

zsazsa1
Posts: 288
Joined: Oct 2018

mixed flora often means just a "dirty" catch, skin bacteria.

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

ive had the mixed flora several times this time it’s 3 distinct bacterias  

Eschirechia Coli, enterococcus and Citrobacter freundii ( spelling may not be right)

i can’t find any research on this. Maybe you know something you can share. Thx

zsazsa1
Posts: 288
Joined: Oct 2018

Congratulations, those are all three bacteria that can cause UTI's, not just skin bacteria.  I'm assuming that you did a good clean catch, where you used the antibacterial wipes, and then caught a midstream urine sample?

ConnieSW's picture
ConnieSW
Posts: 1415
Joined: Jun 2012

how did the consult go?

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

Thank you for asking. The consult was very interesting. It’s a huge tube like chamber that I’m in for 2 1/2 hours 5 days a week (that doesn’t include travel time) The doc did say he thought it would help with pain. He explained that the 100% oxygen creates new blood supplies all over the body but for me in my bladder & pelvis. The treatment is used for many ailments which insurance will pay for.  Again he’s never seen a woman with the level of damage I have but many men. It’s a huge commitment of time but it’s the least invasive treatment option at this time. I’m hopeful but not overly optimistic. My first treatment is this Friday. Thx again for asking. 

BluebirdOne's picture
BluebirdOne
Posts: 191
Joined: Jul 2018

Good luck to you and let us know how it goes. 

Denise 

lovemyhubby
Posts: 25
Joined: Jan 2018

I am currently undergoing hyperbaric oxygen therapy. I have had 30 of 40 treatments so far. the treatments have helped with the bleeding but not so much with the pain yet. It has not helped with frequency and urgency either so I will most likely have additional surgery next month. Still hoping for more progress during last 10 sessions

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

You’re the first person I’ve talked to who has had or is having Hyperbaric treatments. I’ve only been approved for 30 or the Hyperbaric doc is recommending 40 to 60. I’ve had 1 treatment. I’m concerned about the time involved as I work and treatments are after work. Do you have them 5 days a week? Also if you don’t sharing what kind of surgery are you anticipating? My bleeding stopped but the pain & incontenience certainly interferes with my quality of life. Please feel free to private message me. I would love to follow your progress. sending you best wishes. Thank you for sharing. 

MAbound
Posts: 828
Joined: Jun 2016

Don't forget to keep the rest of us in the loop! You never know who you're going to help now and into the future with what you share here. It matters!

Rosesforever's picture
Rosesforever
Posts: 31
Joined: Sep 2018

Only 2 treatments but my ears feel like I have water in them. as the oxygen is going to 100% it feels like ice picks going into my ears. It lasts about 5 minutes out of the 2 hour treatment. I guess every cancer treatment has a trade off. For me it’s all about quality of life. i will have to decide if i can do this for 28 more visits. No guarantees. I hope YOU are all good today. 

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