Hello all. Photo of Stevie. My little girl is growing up.
I’m popping in to say I’ve been told, as of last Friday, I’m doing well on Piqray/Alpelesib and Fulvestrant. (Denocumab/Xgeva monthly) For any of you wondering how this regime is. For me it is going quite well but I must say, I have lost a lot of weight. (I could afford to)
But. I was told as an afterthought to the stable news by my oncologist, that I have a “few fractures” in my vertabrae. Do any of you think this is strange, or is it something we should just be able to hear easily?
When I told him, or questioned him, “Is this quite serious? Should I be doing something different to spare myself from damaging my spinal cord? He kind of shrugged, said I was on all the medication that I could be on to help with the problem, and that “It will heal in time.”
I was shocked. He saw that. And then he said “Well you have got metastatic disease and this is what happens.”
Okay. I said I know that, but I’m just wanting to make sure I don’t damage anything else and want to do the right thing.
Anyway.
I just think I’m finding it all a bit hard at present. Being on a trial. All the appointments. All the other things I have wrong with my body. The tiredness. Absolute fatigue! Sick of doctors, nurses, and the medical profession.
Great news that your doing well on your revised treatment plan!!!Sorry to hear that you have some new spinal fractures though...hope that they aren't causing you too much pain.
I have extensive mets in my spine and often wonder how compromised it might be structurally.
Did you do anything that might have caused the fractures?... sorry to ask but I'm asking as I've got my own concerns of possible injuries.
I still get Zometa IV that's strengthening to bones...but now I get it 3 monthly instead of every month....can you take this too may be?...
The only thing I can think of that I did was I twisted when I was sitting on the couch. But I do remember there was another time where I did something and I thought that felt strange but I don’t know what it was. I’ve been told I’ve got so many breaks in my ribs. Funny… cause the Doctor I saw for eight months prior to my cancer diagnosis, said I had nothing wrong with my ribs. So really who knows. I feel like I don’t know anything about my body and yet I have this urge to trust myself and not to trust the medical profession.
I’ve never been told anything about Zomata iv. I might ask on my next visit.
Of course you should have been told about this, and not just now, and you deserve more info about how it might happen, how to avoid it. I went to a palliative care nurse practitioner, and she referred me to a rehabilitative medicine doctor who sees other mbc patients at the same hospital. He looks at and tests and feels my whole body and refers me to the relevant specialists. Sounds like that kind of response is what you need. Many people do get breaks, but not everyone. I haven't.
According to my reading, Xgeva is better than Zometa at strengthening bone and reducing bony mets. This oncologist doesn't seem attentive to this problem, but maybe you should ask him. (Or get another oncologist!)
The time toxicity article was interesting, if discouraging. Being at home is not sufficient if the fatigue depletes that time at home.
Thanks I'm doing OK....heat is picking up here as we head into another scorching summer. I'm not so great this time of year I find it really effects my energy.Sorry I forgot that you take xgeva....and I think that does the same job as Zometa....its just a different way that its given. I've been on Zometa IV for 3 years and I only had symptoms very early on after the first few times....but everyone's different and yup your right to stick to whatever works for you!! My oncologist also prescribed a Calcium/vitamin D supplement to take daily. Its the only sup that I take and its also supposed to benefit the bones...although that might also be as a combination to the Zometa and might not be necessary with Xgeva...although you could check.
Your right to trust your instincts! I have a fairly good communication with my oncologist...but she is very straight forward....sometimes it's irritating!!
Last time I saw her I mentioned that I feel my weight creeping up and that I'm finding it really hard to diet as I feel the menopause has slowed my metabolism down....her reply was " Eat nothing and exercise, exercise, exercise".... which I know I can't do to that extreme and I found frustrating!! She's a good Doctor but even with her years of experience she really has no idea of how it feels to be on our kinds of medications/treatments....her main concern always is that the meds are working and the symptoms are bearable.
Glad to hear you are stable. Thank you for sharing the pic of Stevie. It warmed my heart, such a cutie.I too feel the same about being tired of bring tired. Your trial sounds quite interesting. Were you ever on any of them on their own? You asked great questions, as most of us have mets up and down our spinal column. I am waiting for my pet scan, as my last was in Feb. I just feel like a broken down car. I give you kudos for doing the trial. At some point, we haven't got any other option. Blessings
hello TimTam…thank you for the update and your honesty about this journey. It IS exhausting to be older and to be sick…and then to take meds that are so toxic. The fatigue is very hard ..I have a hard time trying to distinguish the effects of aging from the overwhelming side effects of Piqray. Thirty five years ago when we moved here I casually took note of how close the hospital is to our home…im so grateful now that the “time toxicity” is kept to a minimum so far because it’s just a five minute ride…but some months it’s such a time suck…the labs, the infusions, the radiation, the ONC appointments… I can’t imagine trying to fit that all in if I were still working..or would I be working? There are so many younger women who are physically drained by the time toxicity and fatigue of cancer care.
I I fully appreciate how you’re feeling…not a depression but for me it’s a constant state of surrender to the limitations of cancer care. I still play golf but I can’t walk 18…I can barely do the nine. It’s been 4 years since my diagnosis and yet I feel I have aged soooo many years.
The Piqray protocol is now ok…but it is still not easy for sure. There is no respite from the regimen ona daily basis. The fulvestrant is also ok but this last injection has caused a weakness and numbness down the right hip. Did it hit the sciatic nerve or impact the IT band?
Recent spinal stenosis surgery was a success but the bright hip has a very compromised bone…I have a limp. That’s the next line of investigation.
The article speaks about weighing the time impact of all those treatments…and if it weren’t for my proximity to the hospital, I would agree how terribly impactful that is. Yes, it is a time suck..but as long as I can golf, see my grandkids, cook a special dinner for hubby, it’s all worth it! But who knows how it will feel in five or ten years? 🤞🙏🤞🙏.
TimTam, I agree, not a depression…but I feel I’m slipping slowly into a sad acceptance. Your little dog Stevie is so sweet..clearly something to stay live for! Best wishes on the continued success of Piqray….and yes, enjoy the weight loss…me too, but I thinks it’s the Metformin for the hyperglycemia that is moving the scale. It’s all good ,
I have been wondering how you were doing. Sounds like your treatments are working but have a cost to your quality of life. I am so sorry about that. I know you enjoy golf and being active as much as I do and having limitations due to pain and now a limp must be frustrating. Please know that you are in my thoughts and prayers. Sending hugs.
Oh thanks so much for your lovely reply dragonfly2.
All that you say is so similar to how I feel. Except I haven’t got a hubby or a partner or anyone to love except Stevie. But that’s not a bad thing though. She’s a very special little being to love. And thanks for understanding about the “not a depression.” Yes, a form of acceptance. That’s it really.. I’ve started planning a lot of things for my impending death. Like writing chapters of my life for my daughter that I think she might need to know when I’m gone. Stuff like that. I’m going to meet with a death doula on Tuesday. Because I’d like some help understanding what other things I have to put in place. Not that I’m saying that it’s going to happen soon. I just want to get myself prepared. I want to leave as little for Carly to have to do as I possibly can.
I feel you will get a lot of comfort and relief knowing you are doing everything you can to make things easier for your daughter! That is a powerful gift. At some point we all realize we are in the inexorable current of life that takes us all towards the same destiny destiny. In business, they call it succession planning. I too have started to document information about my parents that I haven’t necessarily shared with my kids ..but they may find useful eventually . Once you reach a certain age, you realize it’s not about you but who you leave behind. Good to know that there are people available that can help with that process of passage…to try to avoid the turmoil and uncertainty of a sudden unpredicted passing. Best wishes on your journey ❤️🩹❤️🩹❤️🩹
Glad to hear from you. It is a tough, tough journey. I also have extensive Mets in my spine. I also have some compression fractures and some that have healed. No idea how they happened and no one says much about it, I am also not depressed but tired of all the appointments. It seems to be that it is our outings. Glad to hear things are kind of stable at the moment for you. Enjoy your cute little dog. ❤️ Theresa
Thank you for being in this trial …and glad it is working. Is it easier than Ibrance?
Stevie is adorable love bug!
I too would be concerned with spinal fractures. It is upsetting news to take in. Hopefully the meds will heal the fractures with time. I’m not there yet but I’m sending you a virtual hug and hope that it gets better.
Well Maura. Is it easier. That’s a really good question. I’m not really sure. It’s harder in someways because of the diabetes. And easier and otherwise because now I’m losing weight and not stacking it and I feel lighter and I feel like it’s easier to get around get up out of a chair or the couch go for a walk all those sorts of things. I can walk much further than I ever used to do when I was on Ibrance for those 5 years.
Your little Stevie is so adorable. I'm glad you have her to keep you company. I am happy you are doing well on your treatment protocol. I understand your frustration with all of the appointments and fatigue. Also, it is strange that your doctor told you about the fractures as an afterthought and did not really give you insight on a solution. Please take care of yourself, stay strong. Sending hugs and prayers.
Hi, I'm so glad this trial is working for you. Thanks for sharing the cute picture of Stevie, I am sure she is loving companion! She is adorable.
I would not find news of having a fractured vertebrae as part of being stable either and agree with you that when they rattle off the locations of lesions is the patient supposed to receive this shocking information in a receptive way with no horror showing?
It'll be a year since I've had MBC and I almost fell out of my chair as the young oncologist said, "it's in your spine, your rib, your hip.." and then I just shut her out. What good would it do me to hear more? I have no idea if we are looking at few cancer cells or if I am ravaged with it. I still walk and hike with no pain or side effects (Ibrance, letrozole) so I feel that for now I am okay. I think Zomesta is helping with bone infiltration.
As far as your oncologist goes he's not hearing your concern. I think of this complication often and wonder what do women do after this happens. I would not appreciate his blase response.
I strongly relate to your feelings about hating appointments and all the other things that are wrong with my body. It seems like it's one thing after another. I have many issues and all of them are further investigated from what was found on scans so now my world includes GI, Thoracic, Infectious Disease, Pulmonary, and more. I now see the medical profession as an industry though I know the doctors, nurses and techs are well intentioned. I am fortunate to get care at a major cancer institute and I am grateful for that.
However, I've been on a few specialists follow up lists that never seem to end. I've cancelled a few that seem like we are on a merry go round of endless follow ups for no clinical reasons. My goal is to try and not let the myriad of appointments make me feel like a full time patient.
I've been increasing my time spent outside watching the birds and just sitting listening to the wind rustling the trees. Anything but reading emails about best foods, exercise, and new research on cancers. I feel saturated with everything medical and wonder what I used to think or daydream about. Lately, my mind is on my final days and the dreaded progression of this disease be it slow or fast, the uncertainty of it all.
This Memorial Day weekend had me outside planting annuals, herbs, perennials and I felt a brief reprise from labs, bone scans, MRIs, infusions, appointments. I felt healthy and like my old self if even for just a few hours. It was wonderful. It's like I forgot that I had cancer while picking out flowers at the nurseries. Like you, I'm not depressed but just feeling saturated with it all. It can be overwhelming looking at my calendar. We are planning a get away late summer so I cannot wait for that! I wish you and Stevie happiness and peace on this path we are on. I appreciate this forum very much, and sending good energy your way today!
I agree with you Artesa. Yes I’m doing a lot of planning a lot of research into the end of things and meanwhile interspersed. I do a lot of art and I am very thankful for this little doggy of mine. I don’t know where I’d be without her.
What a lovely lot of responses I’ve gotten from my post. I’m very glad to have you all here to come to when I need you.
Yes. So sick of all the appointments. They keep going and new doctors added all the time. I wish I could cancel everything! But we just have to keep plugging along. Had a nerve block done on my left arm. 5 needles in my neck with local anesthesia. No fun. Doc said it should last 3 months but lasted 3 hours Very disappointing. He said it doesn't work for everyone. But he said there are other more invasive options. The nerve pain is so bad it makes me nauseous. I5 never stops but at least I had 3 hours of relief! I'm grateful for that
Pet scan June 1st, pain management appointment June 4th and see onc June 5th. So exhausted
Oh Mariootsi!. That nerve pain sounds awful. Thank you for your understanding and your lovely response. I hope you get to the bottom of this nerve pain and get some relief. More than three hours.
wow, Mariootis, that's a lot. I hear you and am sorry you are going through all of that. It makes one weary but I hope sharing your story helps you know that you are not alone. It does that for me but I'm not in pain like you are. Sending you a virtual hug and prayers.
First, I'm loving that over-the-shoulder glance from Stevie - 😍. Dogs are so wonderful. Second, I'd react the way you did if my onco told me I had fractures in my spine. Yes, I have bone mets and expect them to wreak havoc from time to time, but I hope my doc understands how shocking it is to hear that news. And believe me, I'm not offended by the post and I'm very glad you're not depressed.
Hi TimTam! I'm really happy to hear you are doing well on this new treatment, fatigue aside. I did a trial for 6 months and get your point about all the appointments, it can feel very overwhelming at times. For myself during that time I justified all those appointments with the hope that at least I was getting something that might help me thrive longer. I mean we are all kinda stuck between a rock and a hard place in regards to needing our treaments (and taking on everything that goes along with them!). Not sure that's gonna help you, and please don't take this the wrong way, but sometimes a little adjustment in our mindset can help, I know for me it has over the years, or maybe just venting about it here is enough for a while
It's wonderful you have your cute little pooch to keep you company. Our pets provide the best company, don't they?
Fractures in the vertebra can be common with our lot, and I know it sounds scary and yeah, that fear of damaging the spinal cord is real. But, kinda funny story is that I really hurt my back once, then mostly recovered, but I wasn't dx with mets until 5 months later. I was shocked to learn at the time of the dx that the injury I'd had was actually a compression fracture! I couldn't believe I'd been doing all the active things I'd been doing in between hurting it and the dx!! That vertebra will never be the same of course but fortunately it's ok and barely restricts what I do. Going forwards, now you know you have the fractures, the best thing you could do is get yourself some physio guidance to safely build strength in your core (it is the only thing that supports our spine!), and also build strength in your back muscles to help prevent spinal compression from slouching. Avoid bending over with a rounded back (bend knees and hinge at the hips instead), and avoid sitting in super soft couches, or at least prop a good cushion behind your back to support it better when you do. (Sometimes if I lie/recline on our comfy couch too long at a time, that's the one time I notice my back starting to speak back to me). It's a pity that the doctor could not have been more supportive by answering your wise question with a productive answer! I teach Pilates and personal training so understand how correctly targeted exercise is the best thing for maintaining a good status quo. And another great benefit of this is that a little exercise can go a long way to help mitigate the fatigue. If you need a script for the PT I would call your doc up and request one. He should not have a problem doing that for you!
Thanks so much for your wonderful reply. All of that makes so much sense. And don’t worry, I don’t take offence at what you’re talking about, about our minds. I totally understand. And I actually do feel very much more in control of my mind than I ever have in my life funnily enough. I feel like my anger at the Doctor for his response at last me saying I don’t deserve to be treated like that. And I think I did do something sensible about it by speaking to the nurse and asking her to tell him how his uncaring response affected me. Because on the same day at that appointment when he told me to come off my medication for five days when I asked him if I would get withdrawals, he actually scoffed at me. I did get withdrawals in the form of headaches, morning and night, daily. For the five days. so I’ve also told the nurse to tell him this so that he knows for next time that some people do get withdrawals when they come off the drugs.
I do feel that sometimes these oncologists have an air about them that they are the Doctor they know best and we know nothing. I have told him about my being on this platform and another platform that is entirely for women who are on Piqray only. So I guess I know a lot more than some of his patients who either don’t want to know or don’t do any research. so this was my annoyance at him. That he treated me as if I was a lesser being the he is.
Wow. So in writing this last paragraph it’s made me realise I do have to do more to let the hospital know that it’s not okay to be treated like this as a patient in a cancer hospital.
It's good you're standing up for yourself! He does seem like he has quite the attitude. I've been very fortunate with my oncologists, most are very understanding . But I've also experienced those who act superior when you question them. Some do not like being questioned, as if you are questioning their ability, when all we want is clarity! It's a very annoying quality. They also tend to make assumptons about the info we gain from one another on these sites, assuming it's all bad info. Why did he suggest you come off the drug for 5 days?
Because I’m not eating. Not hungry. Losing weight. And I have a really bad skin condition that has cleared up really badly since being in piqray. Anyway since I came back on it everything is just the same. The skin didn’t change at all. They’ve taken a biopsy to see what it is and I think my appetite came back a little bit but now I’m back on it I’m losing quite a lot of weight again.
I’m sorry you’ve got these other complications going on. I lost my appetite a bit with Afinitor but I ended up not being on it for very long anyway. I know it’s a challenge to try to eat when you don’t have an appetite for it! The only thing to do really is try to find some healthy but high calorie foods.
Stevie is gorgeous. Mum had three Maltese and they were all different but all much loved. 🥰
I think cancer is tiring at the best of times but being on a trial does mean more interaction at the clinic. I was told that’s one of the benefits of being on a trial. They watch you closer but that means more visits so it’s a two edged sword.
As for the vertebrae fractures, I have a compressed T7 and 6 and 8 aren’t anything to write home about either. When I was first diagnosed and told that, I was warned to do regular weight bearing exercise but with limited weights to build up the bones. I am no lightweight myself so I walk to and from the shops and I stagger home with my groceries on a regular basis. I don’t worry about weight restrictions because I just buy what’s on my list that day and I mostly don’t exceed 5kgs although I have been known to get carried away by the bargains that day. I’m on Xgeva every three months and Caltrate Plus daily and Exemestane daily.
I have two pathological fractures but although I was told they won’t heal in point of fact I have fallen a couple of times on concrete and nothing has broken. I wouldn’t worry about the fractures in your spine. I was told to avoid twisting and turning because of the T7 fracture but I still do anyway. Sometimes it’s necessary if you’re reaching for something. But if it concerns you, a physio can give you some guidance on exercises. Usually your clinic can refer you to a hospital physio or your doctor can refer you under Medicare.
And overall I think if we try and live our life as best we can, we get the maximum satisfaction regardless of the circumstances we’re in. The biggest problem I have is with the radiology report. They seem to pluck out of thin air the particular part of the scan they’re going to concentrate on this time. It was a long time and I mean years before a report commented on the fact that the breast tumours were no longer visible on the CT scan. 🤔 I’m booked for a bone scan in June and it will be interesting to see what catches the fancy of the radiologist that day he reads it.
This is all great for me to know. thank you so much for your informative response Kerry. I’m trying todo somew research this =(Saturday) morning here. My left hand keeps going into a spams, type cramp. Somethings it’s my thumb that folds in and won’t straighten and other times my whole left finger that folds in and won’t straighten…. With that awful cramps type pl;ain. I take magnesium. But something tells me it’s rather strange that it’s always my left hand.
Wow, you've gotten so many replies! I'm not going to read all of them and what I'm going to tell you may be what others have written. I'm a long timer with this blasted metastatic bc, diagnosed in March of 2024, 20 years ago and if you saw me, you'd never guess that I'd been in constant treatment for so long. When I was diagnosed with E+ P+ her2neu - MBC, I had only "extensive" bone mets, in my vertebrae, pelvis, shoulder blade and a rib. My bones have held up really well and haven't been much of a problem. I've had stenosis at L3, 4,5, since sometime in my 20s and that's the only bone place I've needed surgery for. My onc referred me to a neurosurgeon. I know I was in the hospital overnight but I don't remember for how long, but no more than 1 to 3 nights. Last year the cancer cells changed from E+ to triple negative so there are fewer treatment options but IV Taxol seems to be keeping cancer under control. I was diagnosed the month of my 58th birthday and now I'm 78, which seems a more reasonable age to die than 58 was, LOL. I've kept my sense of humor, good family relationships, lap cats, and I sure know alot more about bc and mbc than I did at first! I'm fortunate to have a loving husband, 3 grown daughters and step daughters and a good younger brother. And great health insurance! There are alot more treatment options now than 20 years ago and we might live to see some new meds that get rid of cancer cells all together. There's alot to give you hope! And it sure helps to have this place to communicate with others with MBC!
No offense taken, but a little bit worried that your doctor was so off-handed in his remarks. Seemed a bit unkind. Sorry that you are having a tough time and am sending hugs.
Very good article, hadn’t heard of the term “time toxicity “ but have heard of “treatment fatigue”. A little different, but still connected I think.
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I saw my oncologist today
Who takes CBD with approval from oncologist 
Piqray causing kidney failure 
