Yesterday I went to Sloan for my four-week Fasolodex shot and I saw a new Nurse Practitioner. I have a biz trip scheduled in March and I mentioned that I was concerned that for 48-72 hours after these shots my urine, sweat and tears smell. And I was thinking how it would be to hit the airplane bathroom, etc. Thinking I may ask the hotel to change sheets.
She said she had never heard of that. Never heard of this kind of smell as a side effect and it was because I was not drinking 64 oz of water.
I KNOW some of you have mentioned the same thing. And I am not crazy. Can you chime in if this happens to you with ideas/tips on what I can do?
I thought about delaying the shot a week, but when I looked at the four-week intervals for the rest of the year, it overlapped with lots else going on in my life. I sure hope this eventually is available in pill form. Any news on that?
Currently NED after one metastasis to the hip seven years after orig diag. Some pain now attributed to bone damage. And arthritis. Of course, I worry, but walk a ton and practice yoga 4-5 times a week.
Thanks!
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Absolutely! You are not crazy! Yes, Faslodex produces a definite unpleasant odor flushing out through all body fluids for first few days. However, as strong as it seems to us, my husband says he cannot tell after the first 12 hours or so, and then only if he happens to go into the bathroom immediately after I have voided. If the nurse has “never heard of that” it’s only bc no one told her.
Answers: I do drink extra water, and take quick-rinse off showers, and do a baking soda rinse for my mouth 2-times daily. Good luck on your business trips.
My nurse also said she never heard anyone else mention it. Hmmm...
What do you do for work? Do you get tired from your meds? Since my diagnosis, I feel like sometimes I cannot come up with the word I want. Wondering if it is stress, meds or getting older.
Absolutely urine had Oder for a few days after shots. I will tell you that even the doctors have no idea what some of these common side effects are from all these meds. I was just telling my dr that I’ve been feeling weak and asked him if it could be from my Faslodex, xgeva Or Verzinio he said no none have that effect am I depressed. Really pissed me off. Looked up side effects for all and Faslodex and xgeva both have weakness as side effect. I really think they should be more up to date on that or at least look it up when asked instead of answering blindly. I will let him know that next visit.
I take the same three as you do. Recently started (3 times) with the xgeva because they found two holes in my spine. I do not get tired on these meds like I did with the Ibrance. The difference to me is major. The only very upsetting thing is now I am having severe lower back pain and its affecting every aspect of my life. I live alone and do not drive. I cannot walk more than even 1/4 of a block (and I live in Brooklyn). I have to stop because my lower back is burning and I start tearing up. Then I have to find a wall or a hydrant or a light post to lean my back against until it stops. Then I start walking again and it happens again. I told my onco I barely leave the house. It only does not hurt if I am laying down. She is now also referring me to palliative care? Are they going to expect me to meditate or something. My onco had given me 800 mg. of ibuprofen for the tumor pain in my breast (before they found the holes). Then when my back started really hurting, I would take one before I left the house and that would dull the pain but after a year of using these for the tumor pain, they no longer help at all. I doubt the palliative care will give me any opiates at all, probably an injection or something. I'm getting severely depressed and I believe that is why I am taking naps. The constant crying which I never did before is because I feel so limited. And it's scary to think this pain can only get worse. What do they do for you if you do not mind my asking.
The ibrance knocked me out for naps every day. The falsodex I never had a problem with and I was so much happier with the lowest dose of Verzenio (50 mgs. twice per day) bc I didn't feel that fatigue. I think we all have different reactions to different meds.
I go for massage when my back starts getting bad or use a heating pad and a few exercise I learned at physical therapy. Maybe you can go for physical therapy just a thought.
Thanks. Not so sure about physical therapy. On top of all this, I have my left left is covered with a large red patch and that foot is swollen behind belief. I cannot even get it into a closed shoe or boot. I have an appt. with another doctor for that.
But the pain back started suddenly and I thought maybe I sprained it and it would eventually go away but it is not doing so and I am finding it harder and harder to walk without feeling that intense pain. I can deal with side effects of meds, but I cannot deal with the pain I feel from even walking 1/2 block.
I told my onco. I cannot deal with the back pain and it only makes me wonder how much worse it is going to get going forward. Thus, she is going to be doing a CT scan and start me with palliative care. I hope they can help.
Also because of this pain (and the surgery I had that took four months to recover from), I have had no physical activity so gained so much weight. So I am meeting with a cancer nutritionist. I am way way too heavy and it's taking its toll and if I can't walk, the weight is just going to continue to pile up. I am hoping maybe this is some kind of injection that they can put in to numb the pain. It's hard when you can't even walk to the store and you don't have anybody but yourself. This has brought me down mentally much more than anything else so far. Just started and now it takes a shorter and shorter amount of time when walking for the pain to start. I am so tired of feeling pain. Thanks for responding.
Ask your for Tylenol 3 it is one of the meds that is older and works great, they just added it to the opiat list. Never heard of anyone oding from it, I did really with it for 11 months now I take hydrocodone with tylenol. You need better pain management, palliative care docs should take of that if your doc won't sorry you are having so much and only ibuprofen.
I also had an increase in the "stench" of my urine when I went to the bathroom. I thought it was imagination at first and then realized it was an effect of the falsodex injections. But it was not that bad that I could not use say a restaurant bathroom or a bathroom at a friend's house. I could smell the stronger stench myself but that was it. I would not think it should be that big a problem using a plane bathroom or having a hotel have to change sheets every night. If you have slight incontinence issues, wear a pad and change it several times.
Well, they can't know how every med will affect each of their patients. I never suffered from it but when I was on Ibrance, I remember several ladies saying they got dragon breath. It was like a burp but green gas would come out. It turned out that several of them had it happen to them. I mentioned it to my onco but I never had it but mentioned I was surprised how many women mentioned it happened to them occasionally on the Ibrance. My onco was surprised and made a note of it. She said I learn something new every day.
Plus, when we get these meds, we always get a pamphlet that I now read about side effects. All my onco told me when I started Ibrance and it was my very first treatment was that food may taste different. Then my first week off came and I was in bed for the whole week feeling like I was going to die. I only lasted three weeks on that. I had no warning from her that I might feel wiped out but then again on a forum board I seen ladies like me and other ladies who felt exactly the same on their off week as their on week or ladies who felt better on their week off. I guess it depends on one's health to begin with and what, if any, other meds they are taking.
The urine smells pretty bad. I don't know how they can ignore this side effect. I have come to grips with it deciding that that's the smell of living. I've come to grips -- not enjoy! I wouldn't let that stop you from doing anything. Just think of all the people in airplanes that have farted in the bathroom! Not any worse.
And here's my final thought. I wouldn't let strangers' opinions in anyway influence my health -- get your shots on time and let the rest of the world sort out how they feel about it, don't give them a single thought.
Huh. I went off Fasolodex as it wasn’t working. Am on Letrozole now. Just had a PET scan and my oncologist said I am stable. I have Mets in the lining of my stomach and rectum.
I live in Rochester N.Y. and go to Sloan for second opinions. I looked up PET scan prep on their website and they the information was accurate and detailed.
Hope this helps. Reenie
I don’t get Falsodex shots but my urine and sweat are rank. I am assuming it is the Letrozole or Ibrance. Maybe it’s the Letrozole as it’s in the same family as Falsodex. It’s not like we don’t have enough things on our plate. 😞
I have also noticed a different smell just after having my Faslodex shots.
(Kind of like when you eat asparagus, your urine has a “distinct “ odor.)
Then it lessens a few days later.
And the more I think about it, my urine does smell stronger than I remember. Never attributed it to any of the drugs, I take Faslodex, Ibrance and Xgeva).
Thanks all, for sharing your experience. I have a great oncologist, but when I come up with a side effect I’m experiencing she usually says, Hmmm, that’s not listed as a side effect of the drugs you are on. Thankfully she does attribute the muscle aches, insomnia, and fatigue to the meds.
I experienced the same thing. The nurse also had never heard of that. I don't think many of us mention it. I was on Faslodex and Ibrance for 4 years. I hated getting Faslodex because of the smell. It lasted for 4 days. I was very conscience of it but my family did not notice.
I have the same experience with the smelly urine which gets better in a few days. I have an idea for you all to try after you have talked to your pharmacist or doctor or both. I have done a lot of dog showing, training and animal behaviour. Of course there was a problem of females coming in heat.
I was told at a seminar that chlorophyll tablets given to the female would mask the odor and they are harmless. Used it many times on females in heat and it worked.
Good for the bad breath also.
Ask your doctor or pharmacist if it is ok to take along with your regular meds. I don't see why it wouldn't work for us also.
The other tip I was told by the oncologist was flushing the toilet twice after using. Ok as well.
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