Cheese Update

CheeseQueen57

Hi Ladies:

Got some good news today. Apparently the Megace is continuing to hold my metastatic tumors at bay according to my CT scan today. And the incredibly painful renal stent has solved my kidney problem. My surgeon really thinks the kidney problem is a result of the radiation so I’m going to expedite my appointment with my urologist to find a better solution because I can‘t live with this stent. 

BTW, I’ve jumped on the medical marijuana bandwagon and am very disappointed with the lack of results. Despite spending more than $500 I’ve got no pain relief and not even a little high. 

After much reflection, I wish I would have thought more carefully about the radiation. I suppose I had to have it because of the positive lymph nodes but it has caused me some serious problems. 

Was on the breast cancer forum browsing for a friend. I liked their pink bus. Maybe we could get a bus going here. Sounds like a riot. 

Good she’s to all my fellow warriors. Your in my nightly prayers. 

CheeseQueen57

I mean

I mean good wishes and you’re obviously. 

Jairoldi

Good to hear

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.

NoTimeForCancer

CQ - yeah for Megace helping

CQ - yeah for Megace helping you, so good to hear.  I think we are all pulling for a better solution for the stent as well.  It sucks to hear the marijuana didn't do anything.  I agree with Jairoldi, it is too bad you didn't get buzz out of it in the least.  

cmb

CheeseQueen57 said:

I mean

I mean good wishes and you’re obviously. 

I think we all wonder…

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.

derMaus

Cheese, your post brought me

Cheese, your post brought me such joy! Good news is sometimes scarce so it's wonderful to be reminded that things do WORK sometimes, like Megace. Of course I'm unhappy at hearing that the stent-from-hell continues to plague you, but that, at least, is mechanical - not cancer - and I firmly believe you stand a good chance of a solution with a competent doctor. Many hugs, B 

ConnieSW

Hey, Cheese,

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. 

SF73

Hello Cheese

So good to hear that Megace is working. I am also on it. I never used any birth control pills prior to my hysterectomy for the fear of increasing my breast cancer risk and now I have no uterus or ovaries and am taking progesterone. Isn't that ironic? But whatever works. 

Good luck with the stent. I am sure you will find a good solution. 

 

EZLiving66

I'm so glad to hear the good

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

oldbeauty

Wonderful news!

Hello CheeseQueen, based on  my own personal experience, I am a big fan of progesterone and radiation. I've had pelvic radiation twice and, altho' I've had recurrences (lung), the radiation seemed to do the trick for me with no new tumors in my pelvis or abdomen.  My high-dose progesterone seems to have aided in a 5-year remission for me. I do have some radiation effects on my bladder (frequency) and bone loss in my lumbar and sacral spine, but nothing disabling.  I wonder whether a "do-over" of your kidney stent is a possibility.  It would seem that the procedure would not be common in the face of resultant pain like you've been experriencing. I hope a fix is in your future.  I don't know anything about how cannabis functions as a pain reliever; it's a shame it did nothing for you.  Best wishes in your continued positive response to Megace and that you find pain relief with your urologist.  Oldbeauty

barnyardgal

Good news about the megace. I

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

gbazyl

Hi Cheese...wonderful happy

Hi Cheese...wonderful happy news!   Glad to hear this is working for you.

 

Sorry no high on the weed!!   I have my gummies and real stuff ready.....Start my brachy and chemo this week...so I might as well get all the help I can get LOL   Anyone taking Claritan for bone pain?

linmk

You are in my thoughts

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

gbazyl said:

Hi Cheese...wonderful happy

Hi Cheese...wonderful happy news!   Glad to hear this is working for you.

 

Sorry no high on the weed!!   I have my gummies and real stuff ready.....Start my brachy and chemo this week...so I might as well get all the help I can get LOL   Anyone taking Claritan for bone pain?

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.

gbazyl

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

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!

DKK

gbazyl said:

Thank you!   I go Thursday so

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!

Claritin

my doc said to start two days before.  I was taking Claritin to stop the bone pain from neulasta and it made a big difference.

Soup52

Yes for Claritin! Positive

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,

CheeseQueen57

Soup52 said:

Yes for Claritin! Positive

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,

Sure

Of course, no one is sure of anything. But apparently I’ve got a lot of scarring that’s putting pressure on that right ureter. She’s going to replace it on the 8th with a shorter one and if that doesn’t work we’re going to pull it and look at other options (whatever those are). I just hope the shorter stent will be better. 

MoeKay

Glad to hear the Megace is

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. 

CheeseQueen57

MoeKay said:

Glad to hear the Megace is

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. 

HBOT

Thanks for the info MoeKay and I’m glad that therapy is helping. I had radiation cystitis too but it eventually resolved thank God. That was  miserable. My issue is more of a fibrosis that is putting pressure on the ureter so I’m not sure HBOT would be much help with that. 

MoeKay

Radiation Cystitis

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.