My CT scan came back with all organs clear 👏🏻. My bone scan came back with new bone Mets. 😢. Is there anybody with bone Mets that has had progression in the bones? My family doctor called me with the results as I don’t see my oncologist for another week. I have never been able to take my Ibrance as prescribed. It’s always three weeks off each cycle and this month my doctor has kept me off it a month. Does this mean the Letrozole and/or Ibrance will be changed. It’s so frustrating as the Ibrance never had a chance to work properly. Feeling down
Progression in my bones. : My CT scan... - SHARE Metastatic ...
Progression in my bones.
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115 Replies
•
Oh Sarcie that’s a nuisance...my oncologist told me that when (not if!!) Ibrance stops working she’ll put me on Afinitor and exemastane which I don’t like the sound of...I think we all feel ‘safe’ with the familiar drugs were on and don’t like change
I have extensive bone mets a liver nodule which has been irradiated and a pleural nodule which has stayed the same...had an effusion at the beginning but Ibrance got rid of that...bone mets so far are stable
Whole things a nightmare however if you do have to change treatments the new one might be better for you...it’s the not knowing that’s the worst
All the best
Barb XX
Do you have to do a different scan for bone ? I thought CT scan shows everything xxx
• in reply toEuebdbdbddh
Yes, the bone scan is different to the CT scan. I have only ever had the one bone scan and that was over a year ago after my diagnosis, but before I had started treatment.
Sophie
Euebdbdbddh• in reply to
Thank you , and why did they do the bone scan please? Just winding because I never had it done x
• in reply toEuebdbdbddh
When I was going through the diagnostic stage last year each MRI, CT scan or biopsy (I had three done: breast, lymph node and endometrial biopsy) would throw up more questions than it would answer, so I was also scheduled in for a full body bone scan as well from my skull all the way down to the rest of my body. That's when two spots were found on my spine, and the team could tell that the disease was no longer considered early stage, but that it had metastasised.
Sophie
I’ve never had a bone scan...only mri for initial diagnosis then CT follow ups
Barb xx
Same here
• in reply toEuebdbdbddh
My cancer was found due to problems with my hip. The breast cancer wasn’t diagnosed until I had numerous Mets to my bones. If you don’t have bone Mets then they would not likely give you the scan
Maludagui• in reply to
Hi 🌹 I had breast cancer in 2010. In 2018 my leg hurt and I had MRI Alli found hip metastases and a large mass in the left acetabulus. I had radiotherapy. And they did MRI again and it was worse (remember my post) The doctor told me that I didn't understand but ... she had faith that the ibrance / letrozole would be doing her job. We continued at 6 months we did pet scan and many cells disappeared. Now I start cycle 13 of Ibrance and I feel very good. Next pet scan in December. Do not panic. Talk to your oncologist. A big hug
• in reply toMaludagui
Thank you ❤️
I have a CT and bone scan every 3-6 months
Godbeforme• in reply to
Isn't the bone scan and the pet scan the same thing? seems like I read they are ... thanks! God bless and heal us all in Jesus name, amen! xo
• in reply toGodbeforme
No, they're not. I have had a PET CT scan and a bone scan and they are different. They are located in different departments in the hospitals I have been treated at too.
Godbeforme• in reply to
so pet scans don't look at the bones? now I'm confused oh brother LOL
• in reply toGodbeforme
Well, the bone scan looks to see if there are any metastases in the bones, or for primary bone cancer (I believe). The PET CT scan was the final test I had before my team knew what they were dealing with. I believe the PET CT is more precise, but I am not sure. I asked my oncologist a while ago if I could have another PET CT scan and she said no, unless a CT scan was unclear.
Godbeforme• in reply to
ty
• in reply toGodbeforme
You're welcome.
Godbeforme• in reply to
oh by the way, when I saw clobber I thought of cobbler ... I have a mind that focuses on food ha ha ... that's funny ... clobber for clothes!
• in reply toGodbeforme
I'm a foodie too! A nice warm cobbler sounds good!
Godbeforme• in reply to
doesn't it just? with a big scoop of vanilla icecream on top!
• in reply toGodbeforme
Oh yes! That would be lovely. I'm currently chomping on some popcorn and watching My Big Fat Greek wedding 2.
Godbeforme• in reply to
lol ... I promised my niece I was going to watch that as she is engaged to a greek man. I haven't seen either one!
• in reply toGodbeforme
Both films are funny and true to life. I am British Greek-Cypriot, so can relate!
Godbeforme• in reply to
oh how cool is that? never heard cypriot before, assuming it means from cypress? I knew he was greek because his surname ends in opoulos <grin>
• in reply toGodbeforme
Greek-Cypriots are natives of Cyprus. They make up the ethnic majority in Cyprus. Turkish-Cypriots are in the ethnic minority in Cyprus. Both of my parents came from Cyprus.
Godbeforme• in reply to
thanks for explaining, I hadn't a CLUE! hopefully, I will be attending a big fat greek wedding in the near future <grin>
• in reply toGodbeforme
You're welcome!
Godbeforme• in reply to
just heard on the news they have come up with a mutant enzyme that EATS PLASTIC and can maybe help clean up our oceans! WOO HOO! Had to brag to someone and there you were! Praise God!
• in reply toGodbeforme
That sounds amazing! Thanks for sharing the news.
Too bad it doesn’t eat cancer! But I’m happy it eats plastic. It sure isn’t good for our environment or us!
Today ... plastic! Tomorrow .... 
Godbeforme• in reply to
and I only do bone scans and chest xrays ... my onc lets me decide and he is so nice and agreeable!
• in reply toGodbeforme
That's good your oncologist gets to let you decide.
blms• in reply to
PET is best fir fast dividing cancers. Bone is considered by my large cancer centers to be better fir breast cancer spread detection to bone
• in reply toGodbeforme
No they aren’t Bone scan only checks your bones after receiving an injection. PET scan shows entire body.
Godbeforme• in reply to
thank you!
Thank you Godbeforeme - I was beginning to wonder if missed something. I had a petscan
completely different
• in reply toGodbeforme
No. The bone scan will show all of the damage to the bones and the bones only bit a PET scan will show abnormalities in all of your body.
My original stage 4 Dx happened in April 2019. I had an MRI that showed my pelvic tumor. Then I had a PET Scan that showed a couple of questionable areas but turned out to be one primary bone met in the pelvic hip socket. I had several X-rays. I had a CT guided bone biopsy to confirm it was metastasized Breast cancer. In September I will have my first bone scan from head to toe with a radioactive injection. This was ordered by the orthopedic oncologist who wants a clearer picture if I have any other bone Mets. I had no idea there were so many scanning options & they each do different things. Living & learning all the time 😊.
• in reply toEuebdbdbddh
I have a CT scan to check organs but the bone scan is a different test and machine. It scans bones from head to toe after getting an injection
• in reply toBarbteeth
Hi Barb,
It must have been annoying being told "when" you will change treatment that this is what you will be offered. My oncologist was the opposite. When I asked her what the second line of treatment would be when I saw her in May she said I am doing so well on my first line of treatment that I don't have to worry about moving on yet. But that it will be faslodex (how do others deal with the indignity of that?! I am not looking forward to it!) and then when I saw her last Friday and asked about alpelisib she said I can have that too in the future.
I agree that we get comfortable with what we are doing and taking, and that the idea of trying something new can be scary. If I could carry on like I am for the next 30 years (assuming there's no cure before then) I would be happy with that, but I know that realistically that is not likely to happen. You are right that the next line of treatment could be better. I know it's a bit of a cliche, but new and better treatments are coming out all the time. If I had known 15 years ago when my mum died from cancer that metastatic cancer patients can possibly live for decades with their disease treated more as a chronic illness I would not have believed it. But now it can happen!
Sophie x
Barbteeth• in reply to
God I hope you’re right...I’m going nowhere soon!!
Perked up a bit today...had hair done and bought some clobber from TK Max...love a bargain...a few days ago I wouldn’t have entertained that
My new extensions look nice but when she took the old ones out I realised how thin my hair had become...horrible sight
Barb xx
• in reply toBarbteeth
We need to believe that we will live for a long time, Barb! I don't know the science behind it, but how many people who are told they have six months left to live internalise that and then die within that time frame?
I'm glad you went shopping and picked up a few bargains. I haven't been to TK Maxx in a while, but I love a bargain too! I picked up some second hand clothes and a pretty scarf and a few things for my dad and brother after I had finished work today. Now I'm babysitting a homemade spag bol and there's a homemade green bean casserole (one of Kim's favourite American dishes) keeping warm in the oven. I made a vegan mushroom soup, rather than using canned mushroom soup to go into it, and I used locally grown runner beans and green beans.
I'm sure the extensions look great and your natural hair is probably not as bad as you think. I have very thick, naturally curly hair, so I actually envy people with thin hair. My mum had straight, fine hair and I wish I could have taken after her rather than my dad. My hair has a mind of its own and is very long and thick. That's why I often wear a hat! I think I might need to go back under the scissors again soon, but I find it hard to trust hairdressers, as a lot don't know how to tame hair like mine.
Sophie x
Barbteeth• in reply to
You’re definitely superwoman..impressive cooking!!
Strange how women with curly hair want straight and vice versa...I remember when Miranda was little she had heavy thick white blond hair and she wished she had brown hair!!
Barb xx
• in reply toBarbteeth
Thank you! It's not that impressive though. I just slow simmer the spag bol for at least an hour and make my own sauce, rather than using a jar. The vegan mushroom soup didn't take long to make. I went through all the steps and wondered what I had missed and it was the vegetable broth! So I added that in at the end after I had blended all the ingredients. It still did its job with the casserole. I then froze some for later and put the rest in the fridge in case I fancy some mushroom soup for lunch tomorrow.
I know what you mean about how we are never happy with our hair! Miranda's hair sounds beautiful. I used to want to be a redhead, so I could be like my childhood heroine, Anne Shirley.
Sophie x
Barbteeth• in reply to
Impressive to me though!!
I do actually make my own sauces...never buy jars as they’re not as nice and full of additives and expensive
I have two things I’m good at...chicken fricasse and beef (or mushroom) stroganoff so if I’m cooking for visitors I do one of those then I know it will work!!
Barb xx
• in reply toBarbteeth
I agree about jarred sauces. They are packed full of salt and who knows what else! If you make your own sauce you can control what you put in it. Can you give me your mushroom stroganoff recipe? That sounds delicious! I ate too much and to top it off I had a piece of anniversary cake (I froze it after our anniversary) which wasn't a good idea!
Sophie x
Marieleb• in reply to
Love TKmaxx! My favourite shop!
Sophie , I am so confused about alpelisib, my hospital told me the trial was closed and I could not get on it! Will investigate later this month!
• in reply toMarieleb
Hi Marie,
When I saw my oncologist last Friday I asked her about alpelisib and she said it would be used as a second line of treatment, along with faslodex, when the time comes. I got the impression it is already available in the UK. The FDA in America approved it three months ago. Let me know what you come back with when you see your oncologist. Maybe I got it wrong.
Sophie
mariootsi• in reply to
I talked to my onc but she said Alpelisib is only for the Pik3 mutation which you need to be tested for. But it could be a next step if appropriate.
• in reply tomariootsi
Hi Marianne,
That's what I thought too. Maybe I am missing something here because my oncologist seemed sure that this would be my next line of treatment. Perhaps my original pathology report showed that I have that mutation. I don't know. I had the report in my hands but did not make much sense out of it when I tried to read it. I wish I had asked for a copy. I might ask if I can still have a copy.
Sophie
Dropped in to check on you and happy to see you are feeling a bit better today. Now, what's a clobber? LOL ... 2 people separated by a common language is what hubby says we are! God bless and heal us all in Jesus name, amen! <3
• in reply toGodbeforme
Clobber in this context means clothes. I'l let Barb respond to the rest!
Jerseygirl45• in reply to
Hi Sophi
Haven't been on for awhile. Still having problem with Taxol chemotherapy. After nine weekly treatments this time I was hospitalized with dehydration diarrhea and chronic vomiting. Plus lost 17 lbs in 3 weeks could not eat at all as it tasted so bad. We stopped chemo for a few weeks again. Saw my oncologist today. She said she would like to try a new cancer
Medication. She will have the pathologist see if I have the right mutation that I need to try it. (Confusing) if I don't she is going to try a different chemotherapy that may not have so many side effects. Oh I also was getting lots of uti and now have a thickened bladder wall.
But I am having a petscan Ct scan next week to see if the Taxol did any good. My tumor
markers did go down about 700. So I was happy to hear there are new drugs coming out. I hope I can take it and stop the chemo for awhile. Will let you know what happens. Glad you are doing well.
Barbara
• in reply toJerseygirl45
Hi Barbara,
Thanks so much for the update. It sounds like you have been having such a hard time lately with chemotherapy. I hope that the new drug your oncologist suggested works for you. Your body needs a break from the harsh onslaught it has been under lately.
Take care,
Sophie ❤
Jerseygirl45• in reply to
Thank you Sophie it feels good to complain sometimes. I try not to complain to my family. Would be nice to find a med that does not cause so many side effects.
• in reply toJerseygirl45
That's what we are all here for, Barbara, to support and help each other out.
Sophie
Jerseygirl45• in reply to
😊
Hi Barbara!
Hope this new protocol works better for u! I’m hypersensitive and have to have drugs before each infusion...had a seizure with first Perjeta...scared the whole infusion room. There were doctors and nurses flying everywhere! 😂😱😂 (level 4...5 is DOA) So I really hope they find something a little less toxic to u...I have a friend on the same protocol that gets done a lot quicker than me because she doesn’t have to get drugged before she gets it! 😀
Praying! 🙏🏻💕
I know, they are all so nice to me at chemotherapy. Love my doctor, she works so hard trying to make me comfortable. It's not the chemo it's the side effects that start after a few treatments. I asked if we can do three on and one week off next time. She said she will try to come up with a better plan for me. I just hope the petscan shows some good news. Have not had one since November and have been having chemo since January. Just hope the news is improvement. Then we can move forward.
Barbara
So sorry Barbara! Sounds like change in chemo is what should happen.
I pray that the next treatment will be more easily tolerated and very efficient.
Love and hugs,
Marianne
Thank you Marianne
• in reply toBarbteeth
It is the not knowing. I have a long list for my oncologist
Hi Sarcie,
Thanks for posting. I am sorry to hear about the progression in your bones. I'm glad your GP called you with the news rather than letting you wait. I would save that question for next week when you see your oncologist, but it does sound like you may have to change your treatment. I hope that you soon get some reassuring answers from your oncologist.
Take care,
Sophie
• in reply to
Thanks. I always go in to my scans saying it’s all good and when there were new bone Mets it was a big set back. I’ve been feeling so exhausted and run down the last month that I think I knew something was up.
• in reply to
I know what you mean. I think once we get this diagnosis we become more in tune with our bodies, how we are feeling and when something comes up that just doesn't feel right. Let us know how it goes with your oncologist.
Sophie ❤
Hi Sarcie
Yes have same issue but more complicated. It was a ? If ibrance was working-pet scan July 5 showed stable. Developed sciatica and had mri last week showing progression lumbar spine right iliac. I have been having rash for a while which would come n go- allergist said it was faslodex. I saw my onc on Friday- he stopped the treatment altogether because of mri findings and the rash. Sad thing is my tm’s started coming down. Finished last cycle of ibrance last week and rash came out all over so guess that’s the end of that. I am upset also over all this. Starting a different treatment scares me but I have no choice now- my body cannot handle ibrance. Sorry for us both. Sorry I am not more up right now- it’s disheartening. Hopefully we will be ok with whatever is next.
♥️Frances
• in reply toFrancesca10
Frances it sucks(excuse my words) that the drugs work for some and not us. The Ibrance might have worked for me but it knocked my neutrophils so low each cycle I had to wait three weeks each cycle to restart. I always ask my oncologist if we should be doing something else but he said my scans stayed the same so he was happy. I hope you and I both find a treatment that works. Thinking of you.
Ibrance did not work for me- only did 5 cycles - now on Afinitor this will be my 3rd drug- labs next week- time will tell. I felt good on Ibrance except for low counts and the off week was hell!!! Plus lost a ton of hair!!!! Glad to switch- I think-???
well, my experience is that I took letrozole alone for the first 3 mos. after diagnosis and did quite a bit of reading on ibrance. I read how most who start on 125 mg. drop down to a lower dose; I read where women taking it on a 5 day on 2 day off schedule don't have the low wbc counts and seem to do better and so when I decided I'd like to try it, I told my onc I would try it only if I could start at 100 mg. and that I wanted to take it 5 on and 2 off, as I told him I did not want to get sick or worry about infections. he said okay, "wink wink" as I think they are only allowed to prescribe 21/7, not sure but anyway thus began the start of my treatment. Now, in the 4th cycle, my neuts have never dropped below 1.3, at least I think it dropped to that number at the beginning and I have never been really sick, oh wait I did have a bug around the beginning, a cough, I took ampicillin and it went away. At my appt. last week I did request to drop down to 75 mg. though as I've been having headaches and blurred vision and want to take the least amount possible to see if that goes away and so next cycle I will start on 75 mg. as I had already gotten my 100 mg. and didn't want to waste it. I am glad I'm dropping down coz yesterday I had small chest pains and I'm thinking that was from the meds, not sure which one .... I chewed a few aspirins and it went away. everything is stable though and doing well. Hope this helps! God bless you and heal us all in Jesus name, amen! <3 Oh and I had read that no one ever dies from bone cancer before old age USUALLY as it is very slow ... if that is not true, I'm sure someone will correct it, I like the notion though as I am bone mets too with a few lymph nodes.
Do you think you are any less tired on the 5 on 2 off schedule? I am not having any problems with my 21/7 schedule at 75 mg with my white cells going too low but I seem to be getting more tired each month. My scans have been NED so I don’t think it is that. but I’d like a bit more energy, I have a bunch of quilts I want to make!
It has never made me tired but I have never done the 21/7 either ...
Hmm, might be worth trying or at least asking...
one of the members here wrote quite an extensive article about it ... if I remember correctly it was southside 25 and I will find it and copy and paste for you! it was so good I kept it in an email to myself. they are currently doing a trial on the five on two off as well .... wish I had seen her article before I went a googlin' lol
here it is ... doesn't mention the 5/2 just 4/1 or 3/1 or whatever, but there is a trial with the 5/2 and I'm sticking with it as it has worked great for me so far and I am stable. hope this isn't breaking the rules as she posted this on here and I left her name on the article. if not, I will delete it but everyone here is so nice, I doubt there will be a problem.
Southside25 responded to
Ibrance dosages
in SHARE Metastatic Breast Cancer 3 days ago
Hi. That might have been me. Below are a couple of cut-and-pastes I previously posted from a site called "Inspire" or "Team Inspire"; I'm sure you can find it. This pastes kind of weirdly, so I tried to clean it up to make it more readable. I've gone from 125 to 100 to 75. My latest scans, after 4 months at 75, were good. No spreading and everything remains stable. "Hi, Debbie...I just had an appointment with my oncologist yesterday-- she told me that a Pfizerrepresentative told her recently that post-marketing analysis of both the earlier clinical trials and actualpatient use (data to be released in the future) is showing that ANY dose is equally effective-- that if itworks, it works, regardless of the dose, and there doesn't seem to be any correlation with degree orduration of response based on dose.There will be more sub-group analyses reported in the next year or sotrying to determine if a particular sub-group of patients (lobular vs ductal, ER+only vs both ER and PR+,etc...) responds better than others....So I wouldn't be concerned about lowering the dose- I am almost at the end of cycle 32--the last 28 ofthem at 75 mg. So it hasn't affected the effectiveness for me...and I will continue at this dose at least untilmy next scans in January.One other thing to consider is a recommendation from a research pharmacist I talked with when I washaving difficulty with the higher doses and low WBCs/ANC-- he said, based on his knowledge of cancerbiology and where Ibrance works in the cell reproduction process, it is his recommendation to take alower dose for more days in a row and also minimize the amount of time off the medication, than to takea higher dose for fewer days or having longer days-off intervals.Hope that you find that you get less side effects from the lower dose. May you dance with NED for years tocome!"and"My onc, who is a researcher and has a wonderful team of scientists-- including pharmacists-- to workwith, typically has a threshold of 2 cycles in a row either needing dose interruption due to a day 14 or dayone WBC less than 2.7 or an ANC less than 0.8-0.9, or "time off drug" prolongation longer than a week(barring extenuating circumstances like surgery or some such thing).She and her pharmacist feel that due to the average 29-hour half-life, prolonging the time off beyond 7days is not as optimal as keeping on a consistent dose, even if it is a lower dose....however, they alsobelieve that once you have titrated down to 75 mg, if you are still getting a good clinical response but alsostill having those low blood counts, then shifting the dosing schedule around is definitely worth trying.Her pharmacist colleague (Sam, a lovely man!) says "There is no magic in the number 7", so you don'tnecessarily have to move to taking an entire second week o, nor do you need to keep on a 21-day "on"cycle....he is a strong advocate for being creative, so long as you keep a few principles in mind:Based on where Ibrance works in the cell reproduction cycle (and likely this holds true forribociclib/Kisquli, since it shares very similar CDK4 and CDK6 activity--abemaciclib has a slight differentaction profile and we never discussed it since it was long before it came to marker that we had ourdiscussions)* the time "on" Ibrance should always be longer than the time "off" the drug, and the longer "on" intervalwith the shortest "off" interval is the better choice (so, for example, 14 days on and 4 days off is betterthan 17 days on and 7 days off)* due to the onset, duration of action and half-life of the drug, he suggests at least 10 days "on"is best toget meaningful benefit* 2 days on and 1 day off for 21 days (or the 30 days you would have medication for on that regimen, thentake some days off if needed based on your labs) is a very sound approach; he would not suggest evergoing beyond every-other-day dosing; and he would prefer someone try every 36 hour dosing before theytried every-other-day. Other schedules could include 3 days on and one off or 4 on and 1 offAlso, please also keep in mind that there is NO data that suggests that people on a higher dose get abetter (regression vs stable disease) or longer response than people at a lower dose, so I would not be tooreluctant to lower the dose based on undesirable side effects (low blood counts as well as fatigue,nausea, GI upset, mouth sores, etc). I know that I was very reluctant and unhappy when I had to go tolower doses, but I certainly felt better and also was finally able to complete full cycles and start the nextone on time, which ultimately is the best thing for suppressing the cancer cells. And now that I am morethan 30 months (32 cycles) on it, I know that it is true that lower doses can be equally effective. In fact, myonc believes that the lower doses may be more beneficial in the long run due to the lighter effects on thebone marrow, liver, kidneys and thus will allow my body to be in the best shape possible to deal with thecancer and the cancer medications for a long time. She says that it is well known that about 1/3 of cancer relateddeaths are due to the ultimate effects of the medications and not to the extent or action of thecancer at the time of death...so she almost always shifts doses around when possible to find the minimaleffective dose for each patient in order to minimize the collateral damage to the body and it's organs.Bonus is that many of her patients seem to have fewer or less serious side effects that is seen at thehighest doses.Whew--didn't meant to get so long-winded on you....and as for the 125mg unopened bottle-- you can askyour onc if s/he has a patient who is having difficulty meeting the co-pays; or perhaps someone from thissite will message you directly and privately. It is technically illegal to share medications that wereprescribed for you, but typically since both you and the recipient have a prescription for it, and you arenot selling it, in reality there would not be any consequences to you, at least here in the US. I would bereluctant to mail medications to certain foreign countries...Be well! May you feel less fatigued and get great results for months to come."
Thanks, Sandra. You can always be relied upon to explain the medical side of things better than those of us with no medical training.
Sophie
Thank you! I am injected with a radioactive dye 3 hours before my bone scan and mine is done in the nuclear medicine dept.
not too bad coz I'm only 10 minutes from the hospital so I just go home ...
Your words mean a lot to me. In tears reading them but you are right. I’ve always thought the Ibrance never got a chance to do its thing as I never could take it as prescribed. I have a list of questions for my oncologist so I don’t get lost during my next appointment. Thank you ❤️
Francesca10• in reply to
Sarcie
If you can, get the dr to try different dosing to avoid the big drop. You can tolerate the drug otherwise so it is definitely worth asking about alternative dosing as has been written on the posts here. I would hold firm if this is a viable answer.
I got X-ray of my pelvis done today- I had to know mentally there were no Mets there so I could have PT done for the sciatica. Came back clean. Had Pt but surprise surprise- therapist told me my injection site was all bruised and I did not even know. That injection was done July 12th and sciatica started few days later. I am officially on a bad roller coaster ride. Saw Pcp yesterday- back on steroids for the rash from ibrance.
Sarcie- fight for what you decide. So much of this is a fight for what we believe in for our own bodies. It is sad but true- you are your own best advocate and we are all here for you. Sending you hugs, strength and love
♥️Frances
• in reply toFrancesca10
Thank you Frances. It sounds like your injection pinched your sciatica 😞. I am hoping my oncologist will go with a week on week off schedule to at least see if that will help. It would at least keep the Ibrance at a steady level. I’m so sorry you are getting this allergic reaction to the Ibrance. Take care of yourself.
Barbteeth• in reply to
That is so bad if the sciatic nerve was pinched...upper outer quadrant of the buttock is the area to inject and it’s a fairly good size area so this shouldn’t happen...I would report this
You may have read my post last month where my denosumab injection was incorrectly done and I complained...didn’t want to but if there’s a nurse incorrectly injecting near sciatic nerves then it should be brought out into the open
Barb xx
Yes. But I have had an issue with nurses rotated for injections every month and this is exactly why. When I used to give IM injections, I knew my patients. They came in to me monthly so I knew each of them and would always talk about previous injection.
I will talk to my onc about it next visit. He did ask me if I thought the nerve got hit from the injection. How do I know? I can’t see behind me when I get them. Geez!! Now I know.
I am scared to start something new but I will keep on fighting..
Had my PT today- hurt so good😂
Sandra thank you for you♥️♥️♥️♥️
Hi Sarcie,
Sorry you are going thru this too. I was diagnosed with stage 4 mbc with bone mets in my spine, ribs, pelvis, shoulder...was on ibrance, letrozole and zometa for 24 months. My mets only show up on mri, so progression went unnoticed for a long time. Then they put me on afinitor and exemastane. Unfortunaly, it did not work for me. I have just started a new cocktail of xgeva, fulvestrant and verzenio. I am praying that this will be the right combo for me. Good luck and God bless us all!💖
• in reply toSharonlife
Good luck with your new combination of drugs. I hope these ones work for you. I guess we are lucky that there are other drugs to try.
Joining the fun.I had bone scan during stages that did not show anything...Yet 4 weeks later a PET/CT showed Mets on sternum and hips.... They were never able to explain it...
• in reply toMarieleb
That is frustrating for sure. Before I received my diagnosis I had mammograms and ct that did not pick up the actual breast cancer. It took a different mammogram machine to find it and that was only because my biopsy of my hip said it was breast cancer.
Hi Sarcie, sorry to hear about your news, don't feel bad about not having being able to take the full Ibrance dose.It sounds like it worked for a while, I was on the full dose and it still stopped working sooner than anticipated so it is most definitely not all about the dosage. I was on Ibrance and Letrozole for under a year after my de nuovo diagnosis last summer. I had bone Mets only ( 1 on sternum, one on iliac ) and 3 monthly PET were stable until April when it showed progression ( both increased activity in existing Mets and 1 new one on the hips)... The oncologist decided to wait another 8 weeks to identify how significant progression under Ibrance was ( so they might do the same with you). After 8 weeks sadly new met to hips had tripled and they suspected start of new one on vertebrae so Ibrance was off the table ...I am not going to lie, I have really struggled with this for a couple of months... It seemed to work so well for so many, why not me!!! I started overanalyzing , did I not look after myself properly ( I had put a lot of weight over Xmas)? was I not committed enough ( I stopped reading cancer related books and did not add to my diet the battery of supplements so many had indentified as beneficial), did U let my guard down by being over-reliant on the wonder drug and the knowledge / experience of my Drs seem to have on how long it would benefit me?
I eventually got it out of my system ( well for now as no doubt I will go through the cycle again at next treatment set back) . I realised that we are different, our disease, our bodies, our past experiences are different and as such we all react differently, in the same way that we got hit by this disease while others didn't. So whilst there are ways not to make things worse by keeping ourselves healthy ( well by that I mean healthy food, exercise... ), stress free and forward looking , I still feel so much of it is down to luck or "unluck"... I appreciate a lot of people will disagree as they feel strongly you can change outcome by sourcing alternative options, researching and trying new things .. And to be fair I also support this view to some extent( and follow advice and sharing of information avidly on this site) but I also feel there are a range of shades in how we all cope, and the important thing is for all of us to find the one that is right for us.
We just have to remain positive and optimistic when we can, have a moan and a cry when we can't cope anymore and keep going like those Duracell rabbit in the 1980s ads! 😉
Anyway enough of my existential nonsense, more to your point:
If you have to move away from Ibrance there are still a good range of second line of treatment available so don't dispair.
If you are in the US and it is confirmed you have PIK3CA mutation , you are likely to be given Alpelisib ( the new wonder drug!)... It has had very good results in ensuring significant progression free disease periods in trials...
If you are in the UK you might not be able to access it yet ( it is at trial stage here , it was mentioned to me by oncologist only to be told they had closed enrollment for the one I would have been eligible to join) but definitely worth asking the question at your next Onc appointment...
I appreciate not all patients are given the same drug so you might have a different one but I was put under Exemastane and Afinitor... I am on my second cycle and so far so good.Obviously felt rotten for the first week but things settled quickly...
One advice so, if you are in the UK you will get some mouthbaths to be taken 4 times a day... I stopped after 2 weeks thinking all was well and I did not need it... Big mistake and I soon started to develop mouth ulcers... However as soon I complied with original recommendation of 4 mouthwash a day it went away!
Hold on tight, the journey is bumpy that's true but still worth it!
Take care
• in reply toMarieleb
Thank you so much for your comment. I agree with you that so much of this is bad luck or fate. I don’t believe in a lot of the things other people say will work because if it really did work then none of us would have cancer. I trust my oncologist to come up with the treatment that is best for me. I am in Canada so I’m not sure if that new drug is available here but I did have a prescreening for a drugs trial so maybe it was for that. I appreciate your honesty about your struggle. I have been really down since I got the news and everybody seems so positive and upbeat I felt I wasn’t being strong. Take care.
Another realisation of mine on that journey: acknowledging and articulating how we feel when we feel down is very therapeutic! ( I do a bit too much of this on this forum 😂) ...Keep me posted on how you get on...
I had liver and bone progression on ibrance and was changed to letrozole. Last scan shower clear liver and bone mets improving. Hang in there, you have a lot of drug choices
I was diagnosed with denovo mbc and "extensive bone mets" only in March, 2004, almost 15 1/2 years ago and have had some progression during that time but am only on third line treatment, with exemestane and Xgeva. At diagnosis, there were mets in about 6 vertebrae, two spots on the pelvis, two spots on my left shoulder blade and a spot on a rib. My latest bone scan report from a radiologist mentioned several ribs and the bone on the top of my skull. Sarcie, if you have not seen a bc specialist onc at least for a second opinion, this might be a good time to do that. There is a link on the the home page for finding Comprehensive Cancer Centers. There are about 50 of those scattered around the US, mostly part of medical schools. They are the top cancer centers in the country and have to meet high standards. It's worth traveling if you have to. When I was diagnosed, drugs like Ibrance and Afinitor had not been developed yet and the only option for bone strengthening drugs were bisphosphonates, like Zometa and Aredia, which were IV drugs. And alot of us with bone mets only were doing well for long periods of time. I could not tolerate Ibrance when it was prescribed for me in 2016 and I have seemingly permanent lung damage. I hope your onc will have a sound plan for you. It may not be necessary to change meds yet. You are on something like Xgeva or Zometa for your bones aren't you?
• in reply toPJBinMI
I’m not on anything for my bones. I have put that on my list of questions for my onc. I’m in Canada so I’m being seen at the Cancer Clinic near me.
So sorry. Understand the frustration and fear of changing treatment. We will all face this at some point.
If you could try to relax til you see your onc to get official word on treatment. You may not have to change yet. Maybe another change in your Ibrance shedule will help. I pray for you that it will!
Love and hugs,
Marianne
• in reply tomariootsi
Thank you ❤️
Beautifully expressed that Sarcie is still strapped in on this damn rollercoaster.
No problem for me 'cause they do my CT (chest, abdomen and pelvis) during that time! So efficient... Actually, I'm quite grateful that they do it that efficiently. It keeps me busy and moving along.
I have Mets to the bone. I am also on Ibrance and my WBC has now stabilized. I understand that can happen (I was off quite a bit from low WBC in the beginning). Ask your doc if that might end up being the case with you. Also, I just had my first tele-consult with a Care Oncology Clinic doc last night. They will be shipping me the drugs for the COC protocol. Have you considered adding that regimen? It works with conventional treatments.
• in reply toBenoahmom
I’m not sure what COC is. I’m in Canada
Your med might not change beca ur even though bone mets is often painful and bones are at risk yo break bones are not considered 'vital the way lungs brain and liver are. GOOD luck, wish you good news. Let us know how you are and how the appointment goes.
Ah, I have to drink the barium, so that adds time to the CT. Then I have lunch, then bone scan. I hate it when they scan my head!
Isn’t the radiation dose of a PET scan massive?.. this could be why they’re not done so often?
Barb XX
You might be interested in Joe Tippens story
mycancerstory.rocks/single-...
The facebook site that supports his perspective is "mycancerstory.rocks"
I went in due to hip problems. They discovered Mets and did a a full body scan in December. Showed widespread Mets. Put me on verzinio and letrosole. Redid body scan at 6 months showed advance on Mets and a spot on liver. He took me off verzinio and letrosole. Have started chemo for 2 or 3 months, then another full body scan and mri of stomach. If liver spot is gone, assume we go back to a different metastatic protocol. I’m good with it and have faith in my oncologist.
• in reply tojjbrist
I hope the chemo gives you the boost you need and you can then switch to a different med combo.
The tears were because you understood what I was feeling. ❤️
Thank you Sandra.
Hi Sarcie— congrats on the organs clear!!!! That is great news. I’m sorry for the roller coaster with your bone Mets. So many helpful posts— I don’t have anything to add... just sending you a ((hug)).❤️
• in reply toBluHydrangea
I will always take a hug! Thank you.
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