Cheese Update

It's good to hear that the Megace is still working! All of these treatments effect people so differently. It's so hard to know what is the right thing to do. I questioned the radiation and my radiologist said it was the best chance for a good outcome. I was thinking why not wait until I had a recurrence. 

Sounds like you are giving everything a try. Too bad you didn't at least have fun with the medical marijuana since it didn't work to relieve your discomfort.

I will have to visit the other board to see what the pink bus is all about.

CheeseQueen57 said:

I mean

I mean good wishes and you’re obviously. 

I'm happy to hear that your tumors are stable, but so sorry that you're still in such pain from the kidney problem. I do so hope you're able to find some relief with the urologist's help.

I did think long and hard about the possible side effects before going ahead with radiation after my chemo last year. As the radiation oncologist said, I could make a decision either way and no one could fault my choice since there is no definitive proof that radiation extends survivorship for my type of cancer, although it could reduce the chance of recurrence to the pelvis area. Although I finally decided to have radiation, I must admit that I was also influenced by my mother's cancer experience.

Nearly 40 years ago my mother refused radiation after her chemo treatment for cervical cancer since, as a nurse's aide, she had seen some really bad side effects from the radiation methods they used in those days. But as she continued to suffer from cancer, she became more incapacitated with additional chemo treatments and multiple surgeries, including a colostomy.

She later told me that she regretted that she hadn't done radiation. While she was finally able to reach remission with a newly approved chemo drug some years after her initial diagnosis, she still suffered from the chemo treatment/surgery side effects until she died several years later. So while she avoided possible radiation side effects, she had many others that were equally painful and debilitating. Would radiation have helped her avoid the later chemo and surgeries? No way to know.

It's natural to question a decision when things go wrong later, but all we can do is make the best choice as we can at the time, knowing there are risks, no matter what path we choose. I wish we all had better information to judge if radiation will/will not help in our specific cases. It seems so arbitrary when some people like you have such bad side effects from radiation while others don't.

I ditto derMaus. She said exactly what I was thinking only she words it better. 

I haven't checked the pink bus for a couple years. I'll pay a visit. 

I'm so glad to hear the good news and I hope this works for a long, long time.  That stent sounds awful and hopefully, your urologist can come up with a better idea.

Love,

Eldri

Good news about the megace. I hope the stent issue gets solved soon.

I hate pain. Fortunately, I haven't had much yet myself. I am wishing better pain management for you. Happy to hear the Megace seems to be keeping the cancer at bay for the moment.

Scotgirl said:

Yes, yes and yes to Claritan

Third day after my first chemo I experienced bone pain that on a scale of 1 to 10 was off the charts. I wasn't even sure how to identify it since it started in my feet and ankles and stayed in my legs. I wandered the house that night unable to sleep for the ach and pain in my legs. It subsided after about 2 sleepless nights. I was furious with my healthcare team for not giving me a heads up but I learned a really important lesson early on in my treatment, be proactive in your treatment, etc. So, long story short, I realized if I wanted to know exactly what I might experience during this cancer journey I could depend on this community to tell it like it is. So, I asked my medical oncologist about Claritin, she looked puzzled and said she couldn't speak to it because there were no studies, ha, first lesson! So I asked her PA and she told me go ahead and try it, that it was benign but to take regular Claritin not the one with D. Well, no one had to twist my arm, I would try anything not to suffer that bone pain again. #2 Chemo, started 24 hr tablet 2 days before chemo, day of chemo and 2-3 days after chemo. Now this is my personal experience, it turned out to be my wonder drug for bone pain. Reduced my bone pain on all remaining chemo treatments to a 2 on the 1-10 scale! It felt like a miracle and still baffles me why my med onc would not advocate it. So read and research carefully and be your own advocate every step of the way. I want to thank all the women that show up on this discussion board with your experiences and advice,  you have all helped me navigate my cancer journey. Currently NED and living my life.

Thank you!   I go Thursday so I will start this on tuesday....I heard it really helped but did not know when to take it!

Yes for Claritin! Positive experience for me too after painful bone pain with first chemo. Back to the radiation and kidney problems. Are they sure the radiation caused your kidney problem Cheese? Just wondering because I had radiation and have only one kidney due to donating the other to my daughter and my kidney remains in good shape. I know many people blame radiation to various problems but I think at times it’s hard to determine what causes our various side effects. I have bowel problems not the diarea type and really as time as gone by I really feel the docs including gastro people think it’s due to my numerous abdominal surgeries. I know this doesn’t help you, unfortunately ... I’m sorry. I hope you get some answers,

Glad to hear the Megace is keeping the cancer at bay.  Sorry to hear about your continuing kidney issue and hope the shorter stent does the trick to relieve your pain.  Does your radiation oncologist also believe this problem is from the radiation? 

FYI, I have radiation cystitis and have been experiencing intermittent blood in my urine, among other symptoms.  I went through some testing and my urologist referred me to a hyperbaric oxygen therapy (HBOT) treatment facility for evaluation.  HBOT is FDA-approved for 14 indications, one being radiation tissue damage, including radiation cystitis and proctitis.  I've been reviewing the HBOT statistics online and, depending on what study you're looking at, HBOT appears to be successful in reversing radiation damage to the bladder and ameliorating symptoms like mine in about 75-95% of the cases.  I would be interested to see if your urologist thinks this might be something that could be of benefit in your situation.  

Wishing you all the best. 

I didn't know I had radiation cystitis until 2013, 14 years after completing my treatment.  I've had episodes of blood in my urine on and off since 2013, sometimes with several years of being fine inbetween.  HBOT also has good stats with radiation proctitis, which was found on my colonoscopy, so I'm hoping that I'll be able to kill two birds with one stone.  I haven't started treatments yet (want to get checked out by an ENT first), but should be in a position to start relatively soon.