Dis Breast Cancer Survivors Part IV - GAGWTA

[Pea-n-Me]

Good morning all! Question on behalf of my friend (double mastectomy about 10 days ago).

Her surgeon recently prescribed nitro-bid ointment for some tissue saving hopes. She had a weird side effect from it and we were at the ER last night. She is going to be talking more with her surgeon today about continuing it but I thought I'd check in to see if anyone here had experience with it. If so, I can go into more detail. TIA!

What was the side effect? If it was a headache or flushing, that can be normal. They should’ve warned about it, though.

 

[Christine]

What was the side effect? If it was a headache or flushing, that can be normal. They should’ve warned about it, though.

It's a dilated pupil on the same side that the ointment is being applied.

The surgeon applied the first dose on Wednesday. Her husband applied the 2nd dose on Thursday night (gloved up, super careful, covered with Tegaderm). The third dose was Friday night. A few minutes after, her eye felt a little odd, like it was irritated. She didn't look at it though. Just went to bed. On Saturday night, her husband applied it again, and very shortly after, she felt the eye sensation again, but stronger. Looked in the mirror and saw her right pupil dilated. Called the surgeon and the surgeon directed her to the ER. I think they think she might have got in her eye, but she is clear that her husband was super careful and she never touched the ointment herself.

The ER checked for pressure (good) and did a CT scan (good). They all keep assuming she put it in her eye. The surgeon has directed her to force her way into an opthamologist tomorrow.

Honestly it seems as it is the nitro-bid is increasing blood flow on the right side which is then dilating her right pupil. Guess she needs to figure out if an opthamologist is going to consider this an "okay" side effect of using it or she's going to have to stop.

The surgeon seems to have never come across this issue with other patients. All very unsettling.

 

[Pea-n-Me]

Honestly it seems as it is the nitro-bid is increasing blood flow on the right side which is then dilating her right pupil. Guess she needs to figure out if an opthamologist is going to consider this an "okay" side effect of using it or she's going to have to stop.

Yes, generally that’s what happens, it dilates arterial blood vessels. Often causes headaches and a flushing sensation until people get used to it. We use it in cardiac care (though not nearly as often as previously, more so in pill form now) and give tylenol with it or put it farther away from the head, like on a leg (which your friend can’t do since it’s directed to be on her breast tissue). It would be unusual to dilate a pupil (personally have never seen that happen with many years of use), but strange and rare things can sometimes happen with some of these meds (which I have had happen myself with a different type of med).

How is her pupil now? Hopefully back to normal. I’m sure they told her to stop using the cream, right? No doubt the surgeon just wanted to rule out anything serious to the eye or a neurological event after the surgery, etc. And it’s prudent for her to be checked out by an opthalmologist. But hopefully it was just an unwanted side effect of the cream that won’t happen again if it’s not used again. She’ll have to talk to the surgeon about how that will affect the breast tissue. I imagine it’s used just to help blood flow through that area. (Have not had that experience myself.) Sorry that happened to her with everything else going on, I’m sure it was scary.

 

[Christine]

Yes, generally that’s what happens, it dilates arterial blood vessels. Often causes headaches and a flushing sensation until people get used to it. We use it in cardiac care (though not nearly as often as previously, more so in pill form now) and give tylenol with it or put it farther away from the head, like on a leg (which your friend can’t do since it’s directed to be on her breast tissue). It would be unusual to dilate a pupil (personally have never seen that happen with many years of use), but strange and rare things can sometimes happen with some of these meds (which I have had happen myself with a different type of med).

How is her pupil now? Hopefully back to normal. I’m sure they told her to stop using the cream, right? No doubt the surgeon just wanted to rule out anything serious to the eye or a neurological event after the surgery, etc. And it’s prudent for her to be checked out by an opthalmologist. But hopefully it was just an unwanted side effect of the cream that won’t happen again if it’s not used again. She’ll have to talk to the surgeon about how that will affect the breast tissue. I imagine it’s used just to help blood flow through that area. (Have not had that experience myself.) Sorry that happened to her with everything else going on, I’m sure it was scary.

So her surgeon instructed her not to use it last night (Sunday night). She was told not to remove it either from when it was applied on Saturday night and bandaged over. As of yesterday afternoon, her pupil was still a tad bit dilated compared to the left eye. Not sure what it will look like this morning.

It's so odd because when I went out with her on Saturday afternoon, I didn't notice it at all nor did she. She applied the ointment Saturday night and it happened pretty much within minutes. When we were at the ER probably about 2 hours after application, it was *very* noticeable to me. By the time we left 3 hours later, I'm not sure I would have noticed it unless someone had pointed it out. So there's a real cause and effect. Let's just hope it's harmless. I'm not sure they will be able to figure out if she should continue to use it though since the side effect seems so rare. This is for nipple-sparing surgery and one of them looked to be suffering post-surgery so I think this was the only hope of saving it.

I think the most frustrating part for her of all the discussions is that they are all assuming she got it in her eye. She didn't. Her husband has been almost fanatical about the application of it. She herself never touched the stuff and he's certainly not touching her eye.

 

[Christine]

Well, good news--she saw the opthamologist this morning. They couldn't find anything in the literature about the medication causing this but the doctor could see no harm in having it dilate the pupil. The doctor will continue to check with other doctors about this unique effect to see if anyone has heard of it before. So she continues on the medication!

Thanks for your input @Pea-n-Me! I appreciate it.

 

[Pea-n-Me]

Interesting. Well, it’s doing the same thing inside the head, you just can’t see it! It’s silly that anyone thought it was put directly in her eye. Obviously people don’t see it used much anymore and aren’t familiar with it. I used to put that stuff on multiple people every six hours (to prevent chest pain; and regularly got it on my hands, pre-glove days). We used to have to be careful not to leave it by the bedside as people would mistakenly use it as hand or other cream.

As long as the eye structures and neurological system all checked out normally then they must think it’s ok to use. She might want to wear sunglasses if outside.

When my son was young, my mother, who was well into her 70s at that point, was outside pitching whiffle balls to him when he hit a line drive to her eye. When I came home her eye was red and her pupil very dilated. They sent us to the Mass Eye and Ear ER. Eye was ok but pupil never went back to normal, which meant every subsequent time, as she aged, that we went to the ER - which was a lot - everyone freaked out seeing her one dilated pupil thinking she’d had a stroke or something. She’d just launch into one of her favorite stories about her grandson and what a good hitter he was, etc. Always gave us a few laughs. Sometimes you just have to laugh at the absurdity of it all.

 

[luvmarypoppins]

Happy November everyone. Always be thankful and look for the good!
I took pain meds and was able to go to dil baby shower. I sat in the wheelchair and the venue gave me a little ottoman to put my leg up under the table when needed. I struggled at the end.
This month finds me going for a ride on the struggle bus lol.
I have visits with eye dr. (Not getting better), cardiologist, regular oncologist, pre op testing and then on the 22nd I am having a bone biopsy. Under anesthesia. The reg. Onc. Is taking the other onc. Suggestion to see what kind of cancer cells are in my pelvis - thinks either thyroid or lung and that will determine treatment. I am strange for sure.
GAGWTA . Prayers appreciated.

 

[Grace&Carolinesmom]

lmp - BIG HUGS!! And many prayers for healing. You are truly an inspiration and your spirit is beautiful. Stay strong my friend.

 

[snappy]

LMP, you have a lot on you plate. Good thing you have a strong faith and will. I will be thinking of and praying for you.

 

[luvmarypoppins]

Happy December everyone!
Still on grand baby watch. 10 days or less.
Yest. Dil dad had a kidney transplant. Miracle as donor was a friends friends brother and the family only said the kidney for him. Nothing else.
Had Thanksgiving at ds1. 4 guys getting the wheelchair up his stairs. Felt like Cleopatra lol.
Medical stuff - had bone biopsy. Still waiting but might not be a great sample. Bad anesthesia side effects and I was awake a lot.
Onc. Talked about chemo pills. Said they would cover everything, stuff they can’t see and could help before possible new bone breaks. Reminds me I’m rare. Gee thanks. and can be stopped quick if side effects. Wants me to talk to rad. Onc. Gheesh
Had aortic ct. see that surgeon tues
Today is ophthalmologist for never ending tear duct inf.
Hope everyone is doing well.
GAGWTA

 

[leebee]

Hang tough, LMP. You have a strong and everlasting soul. Keep us updated on GrandBaby Watch!

 

[luvmarypoppins]

Happy Holiday Season everyone and almost Merry Christmas and Happy Hanukkah to all!
Happy Baby News….
Sweet grandson is here!! 7lb.2oz. 20 inches long. He spent 2 days in NICU because of blood sugar but home last night. Lots of black hair. I didn’t realize that’s dil natural hair as I always see her with brown hair. We are all managing with the name. Unfortunately none of us are fans of the name she picked but such is life. We never even heard of it before.
Yesterday I had to see a new radiation oncologist at the hospital so we also stopped in the NICU and I got to hold him. So precious!!
I got to see the head of the whole radiation oncology department as my assigned Dr. called out sick.
Now listen everyone because the song Grandma Got Run Over By A Reindeer is playing lol.
He said the biopsy showed cancer and now I don’t have a right hip. Technically a bone tumor is taking the place of my right hip and holding it together he said. So tomm. Ds3 is taking me for radiation planning. Of course he sees everyone he knows at the hospital . Depending on the testing I will have 5 or maybe 10 sessions to my pelvis after New Years. And I also have appts with the reg. Onc. And now and infectious disease Dr for my eye infection. It’s because the reg. Eye dr. Wants a med that works because I am allergic to everything. First one didn’t work.
And not to be outdone Ds2 has covid so we won’t be seeing him or dil for Christmas.
I am hanging on tight to my faith right now.
GAGWTA

 

[Grace&Carolinesmom]

lmp - Congrats on the new grandbaby!!! Tis the new generation to want a unique name....

Hang tight my friend. You are in our prayers and thoughts. Life is what you make of it and you are a rock star!!

 

[Dan Murphy]

I am hanging on tight to my faith right now.

Hang tight, LMP! You've hung tight for so long, keep it up.

Congratulations on your new grandson. Wonderful news!!!

Get those rad treatments knocked out and back on your way to feeling good. A Blessed Christmas Season for all. 's

 

[leebee]

Congratulations on your new grandson!! Babies are such an amazing blessing!
Hold on tight, LMP, and know that we are all holding on to you, sending prayers and love and hugs . Happy holidays to you and yours, and enjoy Baby's First Christmas!!

 

[#1hoosierfan]

LMP - Congrats on the new grandbaby. What an exciting time.
Wishing you well with the radiation treatments to come.

Just an update on me:

I started Kisqali in October. It was approved in September for early stage breast cancer (I was stage 3) that has a high risk of returning. Mine is grade 1 and low KI67 score but with multiple lymph nodes positive I am considered high risk for return. I am the first person my oncologist put on this drug that is not already stage 4. It is a 3 week on, one week off drug that I will take for 3 years. I had to get and EKG done before starting and have had 2 since. All is good. I have also went in for blood work several times to check my white blood cell count. That has been good too. I was crazy tired the first month on the drug, but that has gotten better. I have definitley noticed some hair loss, but my thankfully my hair grew back in very thick after chemo, so it is not noticable.

Back in September I was having some very bad stomach pain. I actually went to the ER it got so bad. I am only semaglutide and thought perhaps it could do that. Everything with my liver and pancreas checked out fine with blood work and the CT scan that they did. He diagnosed with either an ulcer and or gastritis and gave me 2 medicines that I took for a month. He did recommend an EGD and referred me to gastro. It literally took me until last week to be seen by a gastro. She was very nice and said she feels the ER doctor was probably right in his diagnosis but with my "history" recommends I have the EGD I had lobular cancer with does have a much greater tendency to spread to the gastrointestinal tract than ductal cancer. The EGD is set for Monday the 23rd. I am 99% sure that everything will be ok, but scans definitely increase the anxiety.

 

[Dan Murphy]

The EGD is set for Monday the 23rd.

Best wishes on the test, @#1hoosierfan. You'll do great! 's

 

[luvmarypoppins]

Happy New Year
Today I am putting on my Anna from Frozen dress and instead of her twirling around saying - It’s Coronation Day, It’s Coronation Dayi. It’s just me saying It’s Radiation Day, it’s Radiation Day.
Not sure we are happy with their plan. They only want to do one massive dose since it will be easier to line me up once and more accurate instead. We shall see. Say some prayers!!
Had delayed Christmas with everyone together yest. Made gingerbread houses.
Grandson was sweet and so cute!
Liked the new Dr. for my eye. She gave me a different antibiotic. Just an infectious disease Dr. Of course she said this was weird.
GAGWTA. Hope everyone is doing well.

 

[Grace&Carolinesmom]

lmp - Good luck with radiation today! Just relax and let your favorite tunes play in your head and it will soon be over.

Gingerbread houses sounds both fun and delicious. So glad you could spend quality time with family, especially that sweet little grandson.

 

[luvmarypoppins]

Happy Friday everyone!
Well the radiation was something else. They actually said it was radio surgery. My Dh looked stuff up. I think they gave me 8 grays. 10 grays could be lethal?
So many bad side effects. Nausea, gas, lethargy and horrible headaches for almost a week. Now I am still having new pain near where my first spine radiation was. Good thing is my pelvis is hardly hurting now except the r hip which they didn’t do. I really didn’t know how much pain I could take. Obviously a lot lol!
Now ds2 and dil have the flu after getting over covid.
Saw grandson once but I was too sick. I enjoy video visits right now.
See reg. Onc. End of month and he will be discussing chemo pills and eye is not all healed yet. Sigh.
Ds3 2 friends are travel nurses in Calif. right now. One moved to a safer location but is worried working the night shift. The other one said coworkers lost their homes and the hospital smelled like a fire pit for days. Prayers!
GAGWTA. Stay warm everyone.