Morning ladies
I had my denosumab injection on Wednesday...for some reason the nurse put it intramuscular...I always have had it injected subcutaneously so o was a bit surprised..now I have a bruise for the first time
I’m not bothered about the bruise as that will go but my question is this....will it work the same and should I report this to my oncologist?..fgs they should be trusted to administer drugs in the correct way
Barb xx
I have a 24/7 number I can ring - do you have something similar? Maybe give them a ring and ask. Or ring the Onc secretary to get her to ask the onc direct, that way youre letting the Onc know so if it is different and theres an issue, youve alerted them to it. Xx
Ps and you can get yours done again properly. X
Hi Barb,
I can understand your concern. I agree with Mindy. I would call your oncology nurse line and let them know what has happened so that they can pass on the information to your oncologist. I hope you won't have to have the injection administered again, but if so I would get right on it.
Sophie
I have my oncologist mobile number so I’ve sent a text
Barb xx
That's great. I hope you get a message back soon.
Sophie
She messaged me back and is annoyed about it...she thinks the IM won’t be absorbed as well as the SC but I can’t have another dose as there’s no way of knowing how much has been absorbed...anyway she’s assured me that long term it won’t make a lot of difference
I told her which nurse gave me the dose and she’ll investigate
I felt like I was telling tales but then I thought...hang on...they should be doing their job properly and it could happen to another patient...typical woman behaviour...we don’t like to be thought of as ‘complainers’
Barb xx
You did the right thing, Barb. Don't feel bad about telling your oncologist about the nurse who gave you the injection. What if she administers it the wrong way again? She should do her job correctly. Our health is at stake.
Sophie x
No way! thats not the best is it. Dont feel bad, the nurse should have done it properly. She may have made a mistake but for whatever reason she might not know shes done it wrong so needs to be told. Good job its not something that could have done you harm. X
Yes I guess so...it’s made me a bit distrustful now...I’ll be watching their every move from now on
The nurse involved is a nice woman but when I think back...she’s the one who couldn’t find a vein for my iron infusion and I had a black hand for about three weeks...someone else tried and did it straight away so maybe she’s just not good doing injections etc or it’s a coincidence ...I have quite reasonable veins so I’m told
Barb xx
Barb
This is for subcutaneous injection not IM. I would report it. How are you doing?
Thinking of you
♥️♥️
I’ve done so...I feel ok just a nasty bruise at injection site
My oncologist is very cross and will investigate
Barb xx
The nurse should be reported to her supervisor - it's a subcu injection. I don't know how it will work lamp. Suggest you tell your oncologist, you could request a talk with the oncology pharmacist.
Hi mary
My oncologist doesn’t think the IM injection will work but daren’t give me another in case some has been absorbed
At least it’s being investigated
It would happen to me!!..stuff always does..when I had my mastectomy and lymph node biopsies..the lab lost them and I had to have another GA and more samples taken...my husband was furious and wanted me to take legal advice but I wouldn’t because nobodies these mistakes intentionally but it makes you wonder how many there are that are never noticed!
Barb xx
Absolutely true as you and I know having worked in health care.
I am sorry these things happened to You!
My worst experience was with my first oncologist who refused to believe I had mets and I was
diagnosed 2 years later after multiple bone mets everywhere, a subclavicular mass, pericardial effusion, bilateral pleural effusions and lots of symptoms!!! After finally firing him I had to fire another doc who acted like every time she saw me I was new to her and she really didn't know me. I'm finally with someone who is very good.
Take care, hope You, your weather and your horse are all doing very well.
Hi Barb!
I used to feel bad reporting things. I also didn’t want to get anyone in trouble but in the 3 years I’ve been going there there has been some mistakes that has given me some bruises. Plus I have 2 IV drugs that have to have a half hour brake in the middle. Which I have had to explain to every new person and to some old ones a few times 😱...
Unbelievable...what about women that don’t comment or complain...get treated dreadfully because they’re so trusting in the medical profession
I know people lake mistakes as we’re human but basic training should be a given
Barb xx
I'm glad you reported it, how will people learn if they're not corrected and medical staff, like anyone else, are only human. I'm sorry it happened to you though! hugs!
Hi Barb, I keep mentioning that we as individuals are our own best advocate. I hate saying it but with no cure available we are basically the walking dead. I truly feel this. I have been to several doctors in 3 different states. The drs have all been good kind decent people and in all fairness have given me the best care they can. They see cancer patients all day long 5 days a week, some have have curable cancers. There is a difference in my treatment since I got mets (stage 4). Wondering if I am the only one who feels this? Does the rarity of my particular mets and it’s presentation make a difference? Only one or two out of the six drs I’ve seen have said this is super rare, I don’t really know what to do for you except treat it like any other Met. Not a single one said hey lady ascites is usually an end of illness symptom - like if you look up malignant ascites it basically says you might have a year left if you are very lucky. 2 mentioned HIPEC surgery briefly but did not help me find a dr who was willing to do on a breast cancer patient. My last dr actually discouraged and would not give me the referral I needed for almost a year. I had to continue to bring it up. I then had to convince an array (3) of them at that location who were pre-screening me, individually. I didn’t get to see him that day but after I passed their screening the last one took all my information/pet scans and the case I made to them each to the HIPEC dr and asked him if he would consider doing this procedure on a breast cancer patient. Within 24 hrs I got the call for my appointment to see him. My home cancer dr treated me very differently after I got scheduled to see him. Like she was angry with me for daring to seek treatment beyond what she could provide. She did not see me again post surgery before I moved she cancelled my last appointment with her. Leaving me feeling like she was more concerned about being usurped then about my chance for a cure. Several woman in another country with my exact mets over a period of years had been cured by having HIPEC. Like up to 10 years post HIPEC they were NED. What dr wouldn’t want this for their patient and encourage them, give the needed referral? End of rant but I am telling you all research your disease, push for correct care, call them out when needed, keep them on their toes, refuse to just take the standard treatment if there is more out there and you are physically able. Hugs and blessings to all my sister sufferers!
Rebecca
Hi Rebecca,
I feel the same as you. I have been pushing, self-advocating, looking into better care and also seeing private doctors as well as NHS doctors. You are also right about how we are treated differently once we have been diagnosed with metastatic cancer. When the doctors thought I was early stage they gave me different surgery options (lumpectomy or a therapeutic mammoplasty), were talking about how this would all be over within 12-18 months and I would then be able to get back to normal. But once all the staging and diagnostic tests were done everything ground to a halt. The enthusiasm with which I was being greeted quickly changed and everyone started wearing the "death look" that they give you when they now know your disease is metastatic and they pity you.
You must be really disappointed at how you were treated. It is unbelievable how some oncologists, GPs and surgeons behave. You would think they would want to do the very best they can to save their patients, not be more concerned about their pride or saving face. Lives are so much more important than a doctor's ego.
Sophie
I have two oncologists in two different states, the state I live in and the state my sister lives in. Her state saved my life last year by radiating a thoracic tumor that was missed in my state. I really like the doctors in her state but find it interesting that the metformin trial is not available in her state, but in mine. I really do like my oncologist in my state, wish I could have found her earlier, but had two horrific ones before going to the other state. The doctor in the other state wants me to try a third round of Ibrance. So far, I don't see any improvement with it. In fact, I was diagnosed with two small liver mets after I went on it. My doctor said the liver mets are from the Fluvesstrant. I still haven't gone back on it. I am waiting to see if I can get into the metformin/antibiotic trial here. The nurses in the other state are wonderful. Though I am waiting to see if I can get in on that trial, they always have told me that I don't have to do what the doctors want and that I am my own best advocate. I need to find out soon if I can get into the trial, because if not, I will try another round of Ibrance, though I am not impressed with it because of its side effects either. One woman on this site said she has to have part of her jaw bone removed because of the Ibrance. Really?! We all need to be aware of our best options, though it is hard to know. I also read that they think there is a connection between diabetes and cancer. I am a borderline diabetic. I was diagnosed by an 8-hour blood glucose test over forty years ago. My diabetic specialist told me that the 3-hour test misses the diagnosis. My point is, if you have diabetes in your family, I do, that metformin might be a good option for you, with other options. I hope your doctors are open to it. My primary physician ordered it for me. My heart goes out to all of you and I wish you well.
Hello,
Thanks for your message. I don't see how doctors can all have such a different approach. It is staggering!
Ibrance was never an option for me. I went straight on zoladex, letrozole and zometa. I am also on the COC protocol (metformin, atorvastatin, mebendazole and doxycycline) as well as supplements. I am tolerating all of the medications very well, and will be continuing with the off-label drugs.
My GP and oncologist don't prescribe the off-label drugs, but I get them prescribed privately by my COC doctor. They both said there was "not enough evidence" to justify prescribing drugs that treat conditions I do not have (my good cholesterol is high and I am not diabetic). But there is evidence to show that used off-label the drugs can help target the stem cells. My oncologist did concede that the off-label drugs "could work" but she drew the line at getting on board with it and prescribing them to me. So I have to continue to advocate and press on regardless of what some of my doctors think. They will not be personally affected if anything happens to me. It's my husband who will have to pick up the pieces if I die. So that's why I am not overly concerned by what they think. I will listen to what they have to say, but I have the choice to not take their advice if I do not agree with them.
Well said
I applaud you
My oncologist has been in touch today and the injection mistake is being treated as a clinical incident and is being investigated...as she pointed out...this could have potentially happened to others and they’ve not been aware...or it may have been a ‘one off’
Barb xx
I had a bruise from the shot 2 months ago. This month I am numb over most of my hip where the shot was given. Also have hard spots about 3 inches long and an inch wide where the shots were given. Does anybody else have this reaction. My oncologist always administers them. He’s very Careful and warms the meds just before injecting me. Not terribly painful but burns for a few Minutes after.
Hi Gwennie
Was this a denosumab shot you’re referring to?.. mine are given in my arm under the skin...subcutaneously...there’s never been bruising or pain during administration ...that’s why I knew something wasn’t right
Barb xx
Faslodex?
2 Faslodex one Xgeva
Gwennie, yes I was on fasolodex for a bit and yes the shots hurt more than most I’ve had and I’ve had a lot (around 1400). Yes I also got these hard lumps where the shots were given. They did go away At some point as I no longer have them and I stopped Faslodex in Feb of this year.
no, it is Xgeva. I will have to make sure it is administered correctly too !
from Google-Administer SC in upper arm, upper thigh, or abdomen; do NOT administer intradermally, intramuscularly (IM), or intravenously (IV)
Administer calcium and vitamin D as needed to treat or prevent hypocalcemia
so thats why they asked if I was taking my Vit D & Calcium !
Yes, that is so weird. Mine is always injected into belly fat.
I recehved Faslodex 500 mg divided and 250 mg in. each hip. then given hot packs
I would definitely talk to your Dr. I have Denosumab shots and they are always injected my subcutaneously.
I'm new here - Denosumab?
Letrozole Ibrance and Denosumab Meds
Denosumab/Xgeva
xgeva/Denosumab 
