Zometa is a bisphosphonate, zoledronic acid, used commonly as a bone strengthening drug. That is its main purpose and bisphosphonates are commonly used for both osteoporosis and osteopenia. It may provide some protection against bone mets in breast cancer, but its main purpose is as a bone strengthener. That is exactly why your doctor has prescribed it, not because of metastatic bc. This is very, very common. That being said, like most meds there are potential side effects but developing osteoporosis is likely worse. As I have said many times, all treatment choices are up to you. I firmly believe that but please make those choices from a position of fact and not the erroneous conclusion you jumped to on Zometa. I can’t post links, but if you go to drugs.com, they give a clear, simple explanation of this drug. As to side effects, they must legally state them, even if they are very low incident. That doesn’t mean you will experience all or any! It’s a bone strengthener as stated but it has other uses. Your doctor is making her recommendation based on your osteopenia, nothing else. Take care
My Chemotherapy Journey
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I am also taking calcium and vitamin D. I'm supposed to take it twice a day but I'm only taking it once. I had low vitamin D when I was diagnosed and apparently that's a risk factor for breast cancer. I had my port taken out the week after my last Kadcyla infusion.
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Thanks so much Maggie!! I know SEs vary you either get lucky and have next to nothing or you don't and be really sick. But nice to know you tolerate Arimidex (anastrozole) for the most part. I hope I do too.
Yeah I actually just messaged my onco on mychart coz the calcium PLUS vit d my husband got is more than she prescribed. I also am supposed to take it 2x a day. But she probably will tell me to take mine once a day with the larger dose that I got right now. Honestly, I probably will also only take it once a day even if she tells me to take it 2x a day. LOL.
Yeah I don't think they ever tested me for vit D deficiency. But I had been taking vit d since covid started.
Wow, I feel like we have almost identical treatments although I did neoadjuvant TCHP. And I have radiation currently. It seems you didn't, lucky you.
Ya, can't wait to take my port out. I just hope it didn't stretch my skin too much.
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I have been on Arimidex (anastrozole) for 18 months. For the first 3-4 months I had some joint pain- for me it was knees and hips. They felt achy at times (mainly at night or first thing in the morning) but not too bad. It did not stop me from working out, etc. After that, I have not had any joint pain. My biggest SE is hot flashes. if your hot flashes are really bothersome there is some medication they can put you on to help with them, but mine have not been that bad- plus I only will go on another med if I feel I have to.
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YAY!. Thanks Ann! You and Maggie gives me hope and alleviates my fear big time in taking Arimidex (anastrozole)! God willing, I have same mild SEs. SEs are my biggest fear in anything pharma makes. UGH.
Actually kadcyla already is making me feeling sore on both legs on the back of my knees and me waking up with achy hands. Fortunately it's tolerable.
I was prescribed 1mg of Arimidex (anastrozole). Glad it's really a small dose.
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So my onco nurse replied on my question. She said it's ok if I bought an OTC combo of calcium plus vit D in slightly over dose. And she still wants me to take it 2x a day. But I think I will do what Maggie did which was just take it once a day.
I am just glad I am taking care or making my bones strong with bone supplements before I start taking Arimidex (anastrozole) which my onco did tell me that it weakens the bones. Great.
And that's why she makes me take dexa scan coz she will now monitor its effects on my bones.
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Did your dr also tell you that Magnesium supplements are important for your bones? Mine told me after hysterectomy 40 yrs ago.
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No she didn't. She just explained that Arimidex (anastrozole) blocks hormones and that the effect is bone disease. She named couple of them and ask me if I know what it is. I said ya it makes your bone brittle. And so she prescribed those supplements to me.
I told her but my multivitamins have those and she said that's not enough. And actually she made me stop taking my multivitamins. And just take those calcium + vit d supplement.
But thanks, Gail. I did just message her if I also should start taking magnesium to strengthen my bones.
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OK so my onco's nurse replied to my question. She said for now I only need to take calcium + vit D. I actually have 4 more radiation treatments to go. YAY. I had 16 treatments total. I declined the +4 boosters. And I ask my radiologist if she's OK with that, and she said yes.
Next week is my last week of radiation. Jan. 15 to be exact. The only SEs I noticed which started ALL this week:
feeling light headed when I get up after my treatment. Both my onco and radiologist and even the assistants says I am probably just dehydrated.
I definitely notice my right breast is red and some spots have darkening.
Also red dots on my right breast and some on my left.
I didn't experience the ones I read on the threads here that they can't wear their bra. I have no problem at all wearing my bra and I actually even sleep with my bra now. Since my breast surgery and they wanted me to sleep with my bra on. And I believe I will sleep with my bra always now. I actually used to do it before and when I stopped wearing my bra when I sleep, I did notice my breast sag more. LOL.
I think, my opinion anyway, showering with warm water at most helped with me not irritating my radiated breast more. Since I did read, that after u have radiation treatment that you have to put sunscreen on your radiated part of the body every time now since it's sensitive to the sun now so that sucks.
And they don't want you to do cold or hot compress on the radiated part. So if you shower using hot water on your radiated breast then ya I believe your breast/skin will be prone to blistering. Just my opinion, anyway.
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pneuma,
You do not need to apply sunscreen to radiated skin areas unless those areas will be exposed to the sun which is unlikely if it’s your chest/breast area. Makes sense, no? This is from UPMC ‘s site:
“ If the area being treated is exposed to the sun, apply sunscreen routinely to the treatment site whenever you are outdoors for more than 10 minutes during the summer or winter. ”
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Yes exbrnxgrl. Your last sentence is what I meant. You don't need to put sunscreen everytime just outdoors.
But you know what? My dermatologist once told me you NEED to put sunscreen even indoors? I was like why? She explained why and I forgot now. LOL.
Oh I re read your post The one I read said exactly the same thing but it stated including the ones hidden by your clothes. I don't know about you but when me and husband are motorcycling in the heat of the summer, I kid you not I can feel the sun burning my thighs through my jeans.
Just saying..
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Ok, My radiation treatment was going smoothly until yesterday. This is EXACTLY what I sent to my radiologist on mychart just now:
Hi. I feel I need to document this because I am VERY worried and this is my biggest fear that happened yesterday. So I hear the radiation is on because of the long beeps. I only hear it after they told me to hold my breath ALWAYS. Then the beeping turns off when they told me to breathe.
Well that did not happen AT ALL yesterday, I probably should have stopped and asked them about my worry the first time. I only get 2 radiation hits. I should have stopped them and asked on the first hit, But I didn't.
So it happened again on the 2nd hit of radiation. What happened on my 2 radiation hits yesterday is:
They told me to hold my breath. I hear the radiation beep. They told me to breathe out... the radiation beep DID NOT STOP! And I was told to breathe in and out and hold my breath while the radiation is beeping THE WHOLE TIME!!
This happens both times on my 2 radiation hits/treatment yesterday. So I am like what's the point of me holding my breath and breathing in and out if the radiation is ON the whole time?!
I asked Lily(?) why was the beeping did not stop? I don't know she explained it but I did not get it. Why was the radiation beeping did not stop? I want an answer because yesterday after I shower, I always clean both my ears with Qtip and my right ear has some blood in it! Then after I brush my teeth last night, there's some blood!
Was I a victim of radiation leak yesterday? I want answer please! This is my biggest fear and it happened yesterday which sucks coz I have 3 treatments left. It was doing good and smoothly until the fiasco yesterday.
I don't know if I had a radiation leak yesterday, What happened was the usual girl that does my radiation was not there yesterday. So I don't know if the 2 girls that were left there yesterday were inept or what but wow. This really is what my nightmare is made of and once again…. I am experiencing yet another living nightmare with this cancer treatments.
I really hope it did not damage my body. My God.
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So I talked to the radiologist and the radiology girl who was there on my last treatment. The radiologist said if I got radiology overdose it would show but she said the dose was just the right amount that day, OK.
Then the radiology girl explained that even though I can hear the radiation beeping they can control when to stop and start it. OK?
Both her and the radiologist said they programmed the treatment so that the radiation won't start until it sense the breathing hold, Whatever I somehow doubt them but just hoping against hope that they are not saving their asses. I documented it anyway so I have record if my internals got damaged somehow.
I actually originally planned to just stop the treatment altogether but of course my husband went apeshit again even made my sister who is a doctor call me. When my sister heard my symptoms she said you probably have the flu.
Oh wow what a coincidence that I am flu free my ENTIRE cancer treatment and my last treatment possibly gave me radiation exposure then BAM! suddenly I have flu. Whatever, shit.
Anyway that's what the nurse and doctor told me too. And so I asked the doctor well if I stop the treatment what will happen? She said well it's like you didn't have the treatment at all. So ya great.
So I asked her, so if I indeed have a flu is it safe for me to have radiation treatment? She said yes. LOL. Watev.
Well I have 2 more treatments so just grin and bear it,
And what do you know they suddenly did it right this time. And this is the same girls that treated me last Friday. Whatever.
What's hilarious is the girl who gave the radiation exposure said she has been doing this for 20 yrs. LOL. And she looks like she is in her 30s. So she has been doing this since she was 10 yrs old. What a joke.
I should have asked for her age to caught her in her lie, I suppose.
Whatever. This fucking cancer treatments… that's the one that's gonna kill me.
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I finally finish my radiation. It was going smooth, pain free and really well until the January 10 living nightmare experience happened. Literally it was brutal. I really hope it was just a coincidence that I got the flu the very same day I had what I believe was a radiation exposure.
After it happened, I am in pain especially at night when I am trying to sleep. In my last day of radiation, I literally have tears in my eyes coz I had to stretch and hold onto something above my head and it's painful. Ugh. I was asked by one of them the day before my treatment ends if I would ring the bell I said nope!
Why should I? I am in no mood to celebrate when I am in pain. It's bittersweet when I finally finished. Emphasis on BITTER.
Anyway, I got a call from some lady she said she's supposed to talk to me on my last day of treatment but she won't be able to make it so she will just give the pamphlets to the ladies so they can hand it to me. And that if after I read the info and I have questions, I can call her. Sure enough I was handed those in a folder with my like 'graduation' certificate or completeness cert, I don't know.
Anyway I skimmed on it. It's called survivorship something. I don't know I don't think I will call her. Not sure if I want to read any of it, LOL.
Also I am pretty sure I was supposed to meet the radiologist on my last day but bitch bailed on me, I guess. LOL. It says on my appointment info treatment with the Dr. whatever.
And then the receptionist said she has to sked me because the Dr. is supposed to see me in a week. So I was surprised I was given an appointment almost a month from now. LOL.
So today is actually day after my last treatment. Surprisingly and fortunately and thankfully, I was not in aches and pain last night. Allelujah.
I thought yay! finally my living nightmare is over… again. But is it? NOPE!
While I was showering today, what do I find in my radiated breast? a blister! it's only one and I hope against hope it's the only one… oh wait there actually is another one on my SNL node stitch. GREAT!
And my radiated breast is now really darkened this started like a day after the radiation exposure incident. GREAT!
Those are usual SEs of radiation treatment I know. But I can't help but wonder…… would I have those if the Jan. 10 incident never happened? That will forever be my what if scenario.
Would I also really have flu or experience these aches and pains?
Thank God, flu has run its course. all I have left is phlegmy cough now.
As always, I am STILL surprised I am still alive. In spite of these cancer treatments….. trying REAL hard to kill me!
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Yesterday, Jan 18. I started taking anastrozole. Last night I also was forced not to wear bra for the first time since my surgery. I had to because a long line of blisters line my underboob. What in the actual fuuuuck, I can't get a break.
I hope these blisters don't pop. because just don't. OMG. So I have one blister near my nipples, one blister in my node biopsy stitch and a long line line under my boob. I think it's the friction of my bra so I have to go braless for awhile. I hope my breast won't sag. gosh. what the hell.
I just checked the test result of the hormone blood test I got. It's supposed to be for flu viral panel test but I was tested this hormone thing instead that no one told me about what the hell.
Anyway - the only test I recognize is called FSH - it just says I have enough value for post menopause. Great.
Same with the other 2. One is I am over post menopause value, the other one not so much.
I think it's a test of my post menopause stage.
I used to google everything but honestly after my radiation exposure I don't care anymore shit. Whatever.
I have to remember to sked my dexa scan tomorrow. That would sure be fun.
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So… I just message the radiologist who NEVER answer my mychart messages by the way. But I still message there because I want to document what happened. The title of my message - BLISTERS. This is word for word what I sent:
Just want to document what my radiated breast looks like. It looks sun burnt. Really dark tan. I have 3 blisters. One in node biopsy stitch site. Now it looks like I had vitiligo there. One under my boob. It started as one long line of clump of blisters, became one large blister. When it pop I felt the area is wet so I know it pop. Now again it looks like I had vitiligo there. I am thinking now it's 2nd degree burn not sure what degree, but my radiated breast definitely looks burnt complete with these blisters. Wow.
And the 3rd one is near my nipple. This is the last one to pop. And last night when I was showering it looks like the blister is growing again what the hell by the time I was finish showering it pop again by itself. Like what the hell I feel like it's lava blister and my right breast is a volcano. Not to mention it hurts now non stop since the January 10 incident that I feel like they failed to turn off the radiation when I am doing the breathing in and out. It is upsetting me. Up to now. It does not help the therapist she told me her name I forgot but when she said she has been doing it for 20 yrs. I actually got more upset. Coz how can you mess up my treatment in that 1 day!
Now I can't even wear my bra because I am afraid I will develop more blister that I now have a breast that's acting like a volcano with blistering popping in and out. I hope this is just temporary because this is unacceptable.
In fairness to the nurse, she did call me the other day asking how I am so she knows about the blisters. But I didn't like that they don't reply to my mychart messages like my oncologist.
I guess I am also disappointed that I didn't get superhero powers from my radiation exposure. All I get is pain and blisters and probably 2nd degree burn not sure what degree but my breast is burnt. It literally is like in the movie when I was showering I see the blister growing then by the time I finish showering it went flat again. WTF.
Thanks science. And that therapist with 20 years experience. LOL. You should be ashamed of yourself girl and I also might sue you.
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pneuma,
My heart continues to ache for you. You seem to have experienced everything anticipated and/or known about treatment side effects as well as some that you’ve associated with treatments that are not known/expected. Of course, this hasn’t been helped by your medical team who you note don’t care and don’t respond to you. So I will ask again; why haven’t you switched doctors/providers? Why do you keep going back to providers who treat you so badly and don’t meet your needs?
Switching health care providers is common (I myself did it early on) and to your benefit considering that you’ve had nothing good to say about your care.
I am not sure what therapist you are considering suing, but what would you sue for? This is not a case of medical malpractice as burns/blistering are possible known se’s of radiation.
I don’t give medical advice but I can tell you that treatment becomes a lot easier when you and your providers are working together. Please consider switching medical providers as feeling confident in and supported by your medical team can make a tremendous difference in your overall emotional/mental health which in turn will make this period of tx easier. Take care.2 -
Ok. So the radiology nurse called me today. I told her - oh wow I am surprised you call me you guys never reply to my mychart message. She said they try to read them well ok then. Anyway so she told me they want me to come there today anytime I would like. And so I did.
Ok… so of course they said it's normal. Yeah ok. And then they gave me some foamy adhesive and they want me to use it for 9 days. She only gave me 3 packs and she wanted me to reuse 1 pack 3x. She use that 1 pack today and put it on for me. Well…. when I remove it because I have to shower and they told me I have to remove it when I shower and then re-use it. Well…. this is what happens, I sent this mychart message word for word:
The subject line - skin came off
So when I removed that adhesive before I shower. Big chunk of my skin peeled off and it's attached to the adhesive so I can't reuse it. The skin is stuck in that adhesive. And that blister near my nipple definitely have like a pimple with whitehead/pus. So hopefully it won't be infected along with my peeled off skin. Should I continue using that adhesive you gave me? Because I am pretty sure everytime I remove it, my skin will peel off again.
Ya not sure if she will call me tomorrow. I will see, I guess. And when I told my husband that my skin peeled off, he said well that's what it does to peel the dead skin. Makes sense I guess.
Dead skin aka burnt to crisp skin. Well, fortunately it's not painful at all. And I actually like the 'new' skin that was revealed but my right breast definitely is not even skin tone now. Eventually I know it will even out but whatever.
Anyway, they wanted me to stop using that steroid cream and just use aquaphor. For now I alternate with aquaphor and petroleum jelly with aloe and vit. E that I have. And I only apply those once a day now after I shower.
The thing is my nipple skin actually peeled off wow. My nipple looks weird. my right breast look weird with uneven skin tone.
I also ask the radiologist if it's ok for me to have the bone scan/DEXA scan tomorrow. She said yes. Whatever.
Well, I hope that adhesive that peels off my dead burnt skin everytime I remove it works, I guess. WOW.
I also hope that's the only damage it does to my treatment that had a 1 day fuck up of radiation overexposure. Please God, I pray that will be it.
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OK so the radiology nurse did call me back. She actually said she's a phone person. Anyway, she said it's normal. the skin peeling. OK watev. I also asked if I should put neosporin on that pimple/whitehead looking like on my blister and she said NO. Just continue to put the foam thingy they gave me coz that one actually has medicine on it.
Well thank God, when I remove it today before I shower, the pimple whitehead is gone. Allelujah. So right now my right breast is 2 tone color. my normal color skin and dark tan. It really looks weird. And why does my nipple also peeling like what the hell so my nipple is also 2 tone color. Wow.
Today actually is my onco appointment and I whine to her that I think they messed up my radiation treatment and I got blisters and my right breast look weird and she actually take a look at it and guess what she said… it's normal. LOL watev. Even my bloodwork lady who is a really nice lady to me, and I whine to her that I think they messed up my radiation because my skin is peeling and she also said it's normal. Yeah really I also am hoping that what my right breast looks like is actually 'normal'. Watev.
And then my onco said she might give me a shot of lupron. She said my hormone test indicates I might still have a period and she said you don't want that to happen coz all the treatment will be like nothing. Like WTF. wow. I read that info about lupron they gave me and wow scary. I even told my husband I honestly would rather have my ovaries removed so I don't have to take lupron but when I search the side effects of ovary removal it's actually the same with lupron like - depression, vaginal dryness… like what the hell. This is a living nightmare hell. It's unreal. It's like whatever you choose you are stuck with horrible side effects.
Anyway the lupron shot will be decided with my next hormone test. Honestly I hope I would have the courage so say fuck no, I won't. I will take my chances. Not take lupron and hope against hope my period won't come anymore. My last period was june last year. So I only have 5 months to wait til I am officially menopause so nope I won't take that shot of lupron. Fuck that. It's enough that I already am taking anastrozole. Just give me a break already with these treatments.
Ugh.
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For the nth time. I am eternally surprised I am still alive even though these cancer treatments tried to kill me twice now.
I am more surprised the pain on my radiation overexposed breast is not painful anymore. Thank you God. I think that foam medicine thingy they gave me for sure has some pain killer. Because I have to save it because they didn't give me enough for 9 days and I don't want to reuse it like they want me to. So most of the time I only put it on that blister near my nipple. Because that is the area where I feel the most pain. And then I feel pain in that blister in my node stitch area coz I didn't put the foam medicine there and when I put the medicine foam there the next day - the pain went away. So…
Anyway so far so good. No more pain thank God. Although not sure about my 2 tone skin color there now. Not even sure if it will look like that forever. I hope not. It definitely looks like I have vitiligo there. UGH. Most important for me is no more blisters. No more pain. NO MORE CANCER!!!!!!!!!!!!!!!!!!!!!!!!! hopefully.
My problem now is my nose. I think the radiation burn through it. I notice it right away, the next day, after the radiation overexposure incident. I just ignore it. But I think it's time for me to get it looked at. Not even sure if I have to consult the radiologist about it, I probably should just go straight to EENT. It's inside, it doesn't hurt but there's like a lump and it definitely is not a pimple. UGH. It felt like the skin curled up or something. FML.
I hope that is all what I have to deal with in that radiation overexposure in that one day - Jan 10 2025. I will never forget.
Now my kadcyla treatment actually is doing good. I have no SEs at all but my last infusion, I was feeling pain on right side of stomach for a few days. It's not painful now but I think I have to mention that on my next appointment.
The anastrozole gave me knee and hand pain the first time, then went away and now both knee and hand pain is back.
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Well what do you know, I am still alive. My aches and pain from my worst nightmare that came true with my 1 day overexposure to radiation has finally come to an end.
My right breast does not look as bad now, it does not look like I have vitiligo anymore. I still have aches and pains but it's from anastrozole. And there are still some browning on my skin but I can live with it.
My inside nose that I don't even know what the hell is that like it feels like a curled up skin has now gone away on its own. I did not even have to need an ENT for that. Thank God.
Since I have osteopenia which is really mild. My onco wanted to put me into zometa. And now that I searched what it is for then absolutely not. I won't take that shit.
Why would she put me in zometa when it's for metastatic bone cancer?!! WTF? I actually plan to just stop all my treatment after my kadcyla infusion, I just asked her how long I am taking it, only a year and I am almost a year and after that, I also will stop anastrozole, shit. No more. This time now that I feel better again, I just will stop taking all these cancer meds shit.
All it does is weaken everything in your body. Zometa also affects the teeth? And that's why she wanted me to have a dental clearance and even if my dentist gives me a clearance. I won't take that shit. No way. Wow.
I have osteopenia not bone cancer so why would I take zometa which also affects my teeth? DAMN! These cancer doctors, are something else.
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Zometa is a bisphosphonate, zoledronic acid, used commonly as a bone strengthening drug. That is its main purpose and bisphosphonates are commonly used for both osteoporosis and osteopenia. It may provide some protection against bone mets in breast cancer, but its main purpose is as a bone strengthener. That is exactly why your doctor has prescribed it, not because of metastatic bc. This is very, very common. That being said, like most meds there are potential side effects but developing osteoporosis is likely worse. As I have said many times, all treatment choices are up to you. I firmly believe that but please make those choices from a position of fact and not the erroneous conclusion you jumped to on Zometa. I can’t post links, but if you go to drugs.com, they give a clear, simple explanation of this drug. As to side effects, they must legally state them, even if they are very low incident. That doesn’t mean you will experience all or any! It’s a bone strengthener as stated but it has other uses. Your doctor is making her recommendation based on your osteopenia, nothing else. Take care
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As you know, we have had very similar treatment plans. I just finished my 3rd zometa, which I get every six months. I will get 6 total and then be done. I also have osteopenia. The zometa serves 2 purposes: it helps prevent the osteopenia from turning into osteoporosis, and there are some studies which suggest that it also prevents cancer cells from metastasizing to the bones (this is not definitive).
My dentist said the risk of developing problems from this dosing schedule is super super small. I was even able to have a root canal without any concerns. The only concern would be an extraction, and he said even then it's a really small risk. When zometa is used early stage, the dose is much lower than what is given to metastatic patients. There is a version of zometa that is given to non-cancer patients (Reclast), so it isn't just for cancer patients.
Having said that, it might make sense to decline. It's totally a personal choice type of situation. The first two doses had pretty big side effects, they were not easy, but the third one was fine.
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Oh OK. Ya I did jump to conclusions. I searched zometa in this forum and I read those nightmare side effects. OK I will read more about it. And it's nice to know that it really strengthen my bones. My onco said I will take it as an infusion. Is that better? Can I just take it as a pill? Coz I want to remove my chemo port after my kadcyla.
The thing is, I need to pull my wisdom tooth. So Now I need clearance from my dentist that I can be put to zometa AFTER my wisdom tooth is extracted. Then my dentist needs clearance from my onco that they can pull my wisdom tooth.
I already asked her if she's ok with wisdom tooth extraction and she said ya but I need to do it right away.
I also definitely will ask for info sheet about zometa again and ask for dreaded side effects. It's just non stop medication with this hell on earth disease. It's unreal.
Thanks!!
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Thanks Maggie! Did you have it as an infusion? I just checked my bone scan result. My hip fracture is at .4% and my osteoporosis fracture risk is at 3.6% in 10 years time.
So I don't know. I guess I should ask my dentist opinion on that too and ask my onco what dosage. My anastrozole dosage is 1mg. So probably I only have mild SEs, most is aches and pain in my hands, knee and feet most mornings and go away on its own without me doing anything for it. But my onco did refer me to PT.
Can you tell me what SEs you experienced and what dosage you have?
Thanks, again.
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pneuma,
Side effects are not guaranteed! Yes, the potential is there but just because a side effect is listed doesn’t mean you will experience it. I took an older bisphosphonate for almost three years. I had flu like symptoms after the first infusion, took Claritin and never experienced that again. I know that you have had many issues with side effects, many unique to you, but it can be very helpful in strengthening your bones.
I don’t know why some of these meds are given by IV vs pill form so that is a question for your mo. You would likely be prescribed the same class of drug for osteopenia even if you didn’t have bc. As for your port, infusions can be given through the vein as they do for folks without ports.Yes, do have dental work taken care of, so make that appointment!
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One more thing… have you looked into switching from your “I don’t care team” (your words), to doctors who you are comfortable with, who respect you, and keep you fully informed of your situation? You have really had a rough time of it and I believe that your experience could be a lot less stressful when you and your medical providers work together. No one dealing with breast cancer deserves the lax and callous tx you have so vividly described. You deserve to be respected, informed and truly cared for by your medical professionals. Having switched doctors myself, I can clearly say it made a big difference. Take care
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I had my port removed after Kadcyla and get my zometa through a vein. I don't know the dosage. The first infusion I had 102-degree fever, chills, aches, etc. for a couple of days. The second infusion I had 99-degree fever and milder aches for about a day and a half. Third infusion I had no side effects and should not have any from now on. I also take Claritin starting the day before. I am easily prone to fevers so you may not have that problem.
My MO offered me a pill version, Boniva, but it has to be taken monthly and has gastro-intestinal side effects so I thought the zometa infusion sounded like a better deal, especially because it's only 6 infusions total.
You will need to have your wisdom teeth removed before you start, I believe. I had mine out in high school so I can't speak to that.
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Thanks. Can I change it mid treatment? Even though I have changed insurance this year. I am now on HMO. I don't know how to navigate this insurance thing. I really want to change but I don't even know how and when I told my husband he seems oppose to it. I don't know honestly I just want to finish my kadcyla infusion and stop everything in this current cancer team I have then have second opinion on the new cancer team I choose. I mean can I change hospitals? I don't even know anymore. It's so exhausting these cancer treatments plus of course dealing with all the bills.
exbrnxgrl I read your other post on your progression. I have no words. But hoping for the best, for all of us ladies in this forum. ALWAYS. Especially now with you.
Guess we have to just live our lives one day at a time. And enjoy while we can.
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I am still in kadcyla and ya I really plan to remove my port after that and then she is putting me this zometa now. Ya I actually will have my wisdom tooth removed 2 days before my next infusion appointment. If she says I will have zometa infusion that day then I can't really trust this doctor right? I mean I don't think that's safe at all.
Actually I had my wisdom tooth removed by the same dentist a year ago. And now he is doing this other one. This is the last one I only have 2 wisdom tooth. Anyway, this time he is putting a bone graft after extraction as he said because of my 'situation'. He didn't put a bone graft on the first one. I asked him that won't be affected by zometa, the first wisdom tooth extraction, he said no. Though I don't think I believe him. I also asked him about the effect of zometa on my teeth. And he said ya it will weaken my teeth/bone. That's why he is recommending every 4 months cleaning instead of every 6 months he said I will be prone to bleeding gums. wow.
So I told him, well that's weird, I was prescribed zometa coz of osteopenia that is really mild because my onco said it will strengthen my bone and now you say it will weaken my teeth/bone like….? What the hell.
I really hate cancer, the treatment and its side effects, and its cost is actually more brutal if you ask me.
Thanks for sharing your SEs with me.
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Ya. Had my xray done at the dentist yesterday. And they schedule me for wisdom tooth extraction and bone graft on Monday. I would not even bother to remove my wisdom tooth but apparently there's a crack on it. And he first just want to fill it and I said I rather have it extracted.
And I have yet to tell my onco but I will definitely tell her about me blowing blood clots out of my nose starting Feb. 21. If I blow my nose today and it's not a blood clot then I was blowing blood clot out of my nose for 5 days then, ya really fun.
And I noticed like small lumps encircling both my nipples so ya it doesn't hurt and I looked it up and I am thinking and hope they say it might be infection? Which makes sense to my case coz both my nipples are stitched or worst comes to worst another cancer to deal with. So wow.
It's never ending dealing with this hellhole disease.
But at least the lady in the dentist office told me I look good. LOL. I mean I wonder what she is expecting me to look like. Like half dead or something. LOL. I have seen pics posted by some ladies in the forum and I was like wow they look really good. And was wishing I look half good as them.
Ya. My next update would be really interesting what the verdict is on that blood clot and nipple situation.
Hoping for the best, always.
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