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Cheese Update

CheeseQueen57's picture
CheeseQueen57
Posts: 757
Joined: Feb 2016

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's picture
CheeseQueen57
Posts: 757
Joined: Feb 2016

I mean good wishes and you’re obviously. 

cmb's picture
cmb
Posts: 282
Joined: Jan 2018

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.

Jairoldi's picture
Jairoldi
Posts: 175
Joined: May 2017

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's picture
NoTimeForCancer
Posts: 2484
Joined: Mar 2013

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.  

derMaus's picture
derMaus
Posts: 504
Joined: Nov 2016

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's picture
ConnieSW
Posts: 1367
Joined: Jun 2012

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
Posts: 240
Joined: Oct 2017

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's picture
EZLiving66
Posts: 1286
Joined: Oct 2015

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
Posts: 176
Joined: May 2012

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
Posts: 168
Joined: Oct 2017

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

gbazyl's picture
gbazyl
Posts: 23
Joined: Feb 2018

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?

Scotgirl's picture
Scotgirl
Posts: 31
Joined: Oct 2016

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's picture
gbazyl
Posts: 23
Joined: Feb 2018

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
Posts: 8
Joined: Oct 2017

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.

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

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.

Soup52's picture
Soup52
Posts: 871
Joined: Jan 2016

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's picture
CheeseQueen57
Posts: 757
Joined: Feb 2016

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
Posts: 173
Joined: Feb 2004

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's picture
CheeseQueen57
Posts: 757
Joined: Feb 2016

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
Posts: 173
Joined: Feb 2004

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. 

CheeseQueen57's picture
CheeseQueen57
Posts: 757
Joined: Feb 2016

Well, I had my stent replaced yesterday and what a difference!  I still have some pain and I’m not running any marathons but this is much better. The doc said the previous stent wasn’t even working ( when were we going to find that out?) and was encrusted with calcium deposits and there was a lot of inflammation. No wonder the pain. But she said I’m destined for stents forever. I’ll have to check that out cause I'm not up for going under a general every 3 months  But for now much improved.  Looking forward to spending Mother’s Day with Number One Son!

 

 

 

 

derMaus's picture
derMaus
Posts: 504
Joined: Nov 2016

Wonderful news!! I'm so pleased that your crack medical team [ha!] finally figured this out and you're in less pain, not to mention the whole "it wasn't even working anyway" part. Criminy!!

Enjoy your mother's day, you've sure earned some fun and relaxation! B

oldbeauty
Posts: 176
Joined: May 2012

So glad that all indications are that you have achieved lasting pain relief.  Best wishes, Oldbeauty

ConnieSW's picture
ConnieSW
Posts: 1367
Joined: Jun 2012

I'm appalled they let you suffer this long without considering these possibilities. Did they say if your kidney function was compromised?

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1448
Joined: Jun 2015

Hey Cheese, Kathy had the same problem with having stents replaced every 3 months. If I am remembering correctly, she ended up having a permanent (something?) put in to replace the temporary stints. Hopefully she will feel well enough soon to come and in comment on this post. 

So glad your pain is better!

Love and Hugs,

Cindi

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Great news about the Megace! I hope you can find some pain relief. 

HorseLvr's picture
HorseLvr
Posts: 102
Joined: Nov 2017

Great news about the Megace! I hope you can find some pain relief. 

Harmony09's picture
Harmony09
Posts: 71
Joined: Aug 2017

Yeah Cheese! Woooooohoooooo for the Megace! Woooooohoooooo for the new stent!

I too can't believe they let you suffer so long without considering the possibility of a faulty "solution". I hate that it took being the squeaky wheel, but I am so grateful for the relief you found with the new one. There's got to be a better way! I don't know if you can research yourself, and you shouldn't have to...but maybe there's a better way.

Thanks for being here Cheese! I'm so happy for your good news:)

Sincerely,

Stacey

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