Year later moving backwards.

I am 78. I finished one round of chemo and bracky in 2017; recurrence in 2018. more chemo, external rads and more bracky. Last one was in April 2018.  As a result, I have weeks of feeling "normal" and then have a week or two where I am so tired I have to drop back and rest. I have joint pain and neuropathy but I just force myself to exercise - adopted a dog so I have to walk 4 times a day, volunteer at things so I have to show up. I do think it is expected that one has ups and downs for several years after treatment. Try and rest when needed and also talk to your doctors.  Try and resume as much a normal life as you can but don't be afraid to ask for help or talk to someone. Hugs!

Is that you once upon a time?  Love the pic

lovemyhubby said:

Radiation cystitis

Any current readers here who are suffering from cystitis? What are your symptoms, when did they begin and what has been your treatment plan? I have been working with a urologist and am taking Keflex low dose daily. This has kept the UTIs from recurring but is not helping with the other symptoms. I brought up hyperbaric oxygen treatment last month and he said I was not a candidate for it. This month he brought it up saying that will be the next line of treatment. Any information would be greatly appreciated. 

I suffered from this horrid condition. Constant infections always e-coli. My urologist referred me to an infectious disease specialist. We treated with high dose antibiotics and seemed to wipe the infection out. He said either the original infection wasn’t completely going away with treatment or I was reinfecting. Seeing an infectious nfectious disease specialist might be warranted. I also felt that Vitamin E vaginal suppositories relieved some of the burning because you get this because of the general dryness in the area. You can get them on amazon and they are relatively inexpensive. Of course I also used pyridium but don’t like the stain and you’ve got to be careful about liver damage. Thankfully it eventually subsided but it was horrible. Good luck. 

lovemyhubby said:

Radiation cystitis

Any current readers here who are suffering from cystitis? What are your symptoms, when did they begin and what has been your treatment plan? I have been working with a urologist and am taking Keflex low dose daily. This has kept the UTIs from recurring but is not helping with the other symptoms. I brought up hyperbaric oxygen treatment last month and he said I was not a candidate for it. This month he brought it up saying that will be the next line of treatment. Any information would be greatly appreciated. 

Oh and I forgot... I also take d-Mannose powder 1tsp every day. Also obtained from amazon. It’s supposed to prevent e-coli from adhering to the bladder wall. You just mix it in any beverage. I can’t remember who recommended it on this forum. I’ve been taking it for over a year and have had no infections despite all the urinary tract issues I’ve had with my stent. I usually don’t believe in this kind of stuff but I believe this works. 

Hi, I just joined this forum, so I'm a little uncertain if I'm replying in the right place, but don't think I am. This goes to "KrisMM". I finished chemo in February of 2018 and radiation in March of 2018. My recovery has been rather 'bumpy'. Overall, I am doing relatively well a year later, but a lot of not feeling well, and now I'm hearing that there may have been radiation damage to my bowel area as I've just had so much trouble with them since, so I don't know how one is supposed to feel a year later, but I would expect there to be some bumps and off days. 

ConnieSW said:

Dragon Lady, I'm sorry

that you are dealing with the aftermath of treatment but am sending my best to you on your one year anniversary. Here's to many more. 

Thank you kindly, Connie. Much appreciated. I am glad to get to have that one year anniversary!

Donna Faye said:

Where you are

I am 78. I finished one round of chemo and bracky in 2017; recurrence in 2018. more chemo, external rads and more bracky. Last one was in April 2018.  As a result, I have weeks of feeling "normal" and then have a week or two where I am so tired I have to drop back and rest. I have joint pain and neuropathy but I just force myself to exercise - adopted a dog so I have to walk 4 times a day, volunteer at things so I have to show up. I do think it is expected that one has ups and downs for several years after treatment. Try and rest when needed and also talk to your doctors.  Try and resume as much a normal life as you can but don't be afraid to ask for help or talk to someone. Hugs!

Faye, I would agree with your approach.  You have to "help yourself" to recover your abiities.  There will be days to give in to, but we own our recovery for the future.  

DragonLadyHere said:

I've struggled with those,

I've struggled with those, but I am now on an estrogen cream and haven't had one since. It's extremely lowdose estrogen and my oncologist approved it because of my early menopause history, and I was having a horrible time with them. I haven't had one since and I use it about once a week.

DragonLayd, as an FYI, for those of us who have UPSC, we cannot take any hormones.  Hormones feed our cancer so it is off the table.  In fact, there is a thought that the body processes soy as a hormone, so I read labels and avoid soy (especially the highly process soy protein isolates) at all costs.  I post this as information for any future woman, or their loved one, who finds this site and wants to know about agressive, uterine papillary serous carcinoma (UPSC).  

KC, I am sorry to hear this.  If you are interested in clinical trials you can always look for yourself at:  https://clinicaltrials.gov/  - sometimes  you have to be your own advocate, but I don't know of any real clinical trial that does NOT involve at least one form of a drug.  Taking care of yourself is important, so there was nothing wrong with what you were doing and will probably continue to do to help yourself.  

Kcosta617 said:

Greetings all.  I have just learned that my cancer is back...again...and my oncologist is going to recommend chemo...again.  Are there no other options? chemo or nothing?  I've been taking supplements, getting accupunture, exercising, all to keep my immune system boosted.  but it's obviously not enough to ward off the cancer.  I've consulted with UCSD about clinical trials, but that's just more/different chemo.  I have great oncologists, it's not that. Maybe I'm just hoping for a silver bullet but I keep wondering if there is something else I can DO!   Any thoughts or suggestions would be welcomed. KC

The options probably depend upon where your recurrence is.  I've had 6 rounds of chemo twice over the years.  I'm finding out on Thurs. if it's spread anywhere else, like the intestine.  If it is there, I'll have surgery, radiation, possibly chemo since I'm still sensitive to it, and  may also be given Avastin.  If it isn't there or anywhere else the CT didn't show, it'll be radiation and maybe Avastin, too.  My cancer has come back in multiple sites, and now it's in two abdominal muscles.  My GYN/onc. tried to remove some of it there the last time I had surgery in 2017, but he couldn't get it all.  He was hoping chemo would get it, and it appeared to have done that, but now the little monster is back.