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@maggie15 and @iacmelis11 - thank you both for posting what you went though. It does make the rest of us aware about se from radiation. And the fact that you experienced side effects months/year later came as a huge surprise to me. I was never told that at the time of the radiation.

I have radiation (10 sessions) in April '25 to treat mets to C2 and C4. About half way through, I developed a sore at the back of my mouth just above and to the right of my uvula and was not able to eat. Tylenol with codeine and Sucralfate helped but it did take quite awhile to heal.

Now, I am undergoing radiation to my mandible (right side) and am having issues initially with a very unconformable feeling first in the area between my tongue and the bone/gum of my lower teeth. Last night (yesterday was session 6/10) the side of my tongue is feeling a little numb and the inside of my lip is sore and puffy. My RO said these a normal se to the radiation and suggested gargling with warm water, salt and baking soda. It does help somewhat. Hope it doesn't get to the point that I can't eat.

Wonderful, GailMary, Maybe taking that Paxil is helping!!! Why would you need to add chemo when its working so well? The studies they are looking at probably didn't have an anti-depressant in the mix..

@alden722 sorry about your recent diagnosis. I’m on Zometa because of a met on my L4 and a history of osteoporosis. I don’t have side effects from it. It’s pretty easy for me.

I listen to that podcast too. Sometimes it’s a little repetitive but I’m enjoying the series about long term survivors. Very inspiring. I’m 2 and ½ years since stage 4 diagnosis.

@alden722 Welcome to this thread! We have a great group of women who chime in often. So sorry to hear about you recent diagnosis. I am just 1 year out from MBC diagnosis after 15 years cancer-free following my original BC diagnosis in 2009. It's also very rough to go through all of this with young children. I am fortunate that this second go-around I am retired. LOTS of appointments to go to.

I will be getting my 5th PET next week. I just try to keep very busy and distracted as much as possible in the days leading up to the scan. My PCP was kind enough to prescribe me Ativan. I only take it 1-2x/week about 1.5 hours before I go to bed. It does relax me and I get a fairly good night's rest. Maybe that's an option for nighttime worry??

Regarding Zometa… MY MO and I are still on the fence about whether or not I need to start it. I had one bone met in my sternum that should be gone due to my radiation treatment in April. (Will find out when I get PET next week). My DEXA scan last year showed mild osteopenia in a few areas, but those were there 10 years ago and haven't shown remarkable progression. However, now that I am on anastrozole, lower bone density may occur more rapidly. I may ask my PCP (who ordered the DEXA scan last year) if I should get another one this year.

I hope someone can answer your Zometa question. I do know there are lots of other threads that discuss Zomota, which have been helpful to me in trying to determine my path with this drug.

Wishing you all the best!

Hugs, Pam 💗

Hi all - Hope you are enjoying your day :) I am not sure where to post this. To make a very long story short, I have bone mets dx late 2023. I am doing well - nothing active on my last 4 scans and as of yesterday tumor markers still well below normal - thank goodness. I am on verzenio, anastrozole and xgeva / zomata (I will explain why both) My reason for not knowing where to post this is - My mets were discovered when I fractured 2 of my cervical spine bones. C3 and C5. I had a fusion from C2-T2 and 5 days of high dose radiation after the surgery. The side effects from the radiation to the neck were brutal for a few weeks after but then I thought everything healed because I went back to having no issues eating or drinking etc. In April of this year (so over a year after my radiation was completed) I started struggling to swallow and was in a lot of pain in my throat constantly. My Rad onc blew me off and said there is no way this is from radiation and to call an ENT. Two months of misdiagnosis ensued and during that time I took 2 rounds of antibiotics, 2 rounds of antifungals and Antacid type meds. Finally my Gastroenterologist said she would do an endoscopy. Turns out I have what she is calling a "radiation induced ulcer" right under my voice box. Which explains why the ENT never saw it when they scoped my sinuses and the higher part of my throat multiple times. My Rad onc is finally taking me seriously and has me on a medicine called Pentoxifylline as well as high dose vitamin E. She also suggested Hyperbaric Oxygen Therapy. I met with the team that does HBOT at my local hospital and although it's a big commitment (2 hours a day for at least 30 days) they think it can help. The meds "might" be helping too but I am also now having another issue which is making everything confusing. Whenever I do get some food down (I have lost 11 lbs since April. I am on a liquid diet at this point) my jaw really hurts too! I am now worried this is from Xgeva or Zometa? I had to do one dose of Zometta in May of this year (which I had never done before) because my new onc couldn't get Xgeva approved by my insurance. That one round made me sick for 2 days and honestly my jaw hasn't been the same since! I know this is a lot but if anyone knows anyone who might have had a similar situation, tried HBOT and it worked for jaw necrosis or even radiation related ulcers or things of the sort - or can direct me to a different thread - I will take it. I am at a loss!

@alden722 welcome to the thread . I can’t help with the zometa as I don’t take it but just wanted to say hi and to say sorry you are here as well. I was just diagnosed right before you in Nov 2024. My heart goes out to you going through this with 3 kids still in school. I’m 54 and my daughter is 29 this year although I did have another type of cancer previously at 38 ( Hodgkin’s lymphoma) and was cancer free for 15 years before this stage 4 diagnosis. Keep posting the ladies on here are wonderful to talk to.