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Bone mets - please join in

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Crazy_dog_lady
Member

Re: Bone mets - please join in

Hi Jools,

Thanks so much for that information xx

I'm very new to all of this and feel like I'm stumbling around in dark a lot of the time.

People like you and Daisy have been really helpful and inspiring. X

I'm glad your feeling well at the moment and your disease is stable. Long may that continue. 

Xx Jane 

Jools-50
Member

Re: Bone mets - please join in

Hi Daisy, that sounds promising.. hopefully we will hear something by Christmas re moving to human trials.. they won't have a shortage of volunteers anyway folk will be queueing up! 

I'm completely wiped out today haven't left my bed, 3rd vaccine yesterday I've taken a reaction. Sick all night long, chills and fever. The joys eh...

Jools xx

 

Daisy1257
Member

Re: Bone mets - please join in

Hi Jools

After I posted yesterday I did get a reply from Bayer.  I think its a generic reply but it does say they are hoping to update by end of the year. See below

 

Thank you for your enquiry regarding the ERSO program. At Bayer, we endeavor to move our compounds through development as quickly as possible, and at the same time have to take prudent steps to ensure the compounds are safe and have the potential to provide the benefits we are striving to achieve for patients with unmet medical needs. Because of these necessary steps, the drug is not currently available for trial in humans, but we hope to be able to provide the community an update on the status of the program by the end of the year.

 

 

Sincerely,

Dereck Amakye

 

Jools-50
Member

Re: Bone mets - please join in

Oh definitely Daisy, anything is worth a try in our situation! Fingers crossed 🤞

Daisy1257
Member

Re: Bone mets - please join in

Thanks Jools. I have just shared again too on Macmillan.  I have also emailed Bayer, no response but we have to try don't we!

X

Jools-50
Member

Re: Bone mets - please join in

Hi all, last push to get the ErSO petition to 15k signatures. I believe the creator of the petition is planning to send to Bayer at that point.. link below. Can't do any harm! 

https://chng.it/F8hcdYVfGy

Jools-50
Member

Re: Bone mets - please join in

Hi there Jane

I'm so sorry to hear about your diagnosis, I'm a year in and although it's a scary ride, I try not to dwell on the negatives. I'm feeling pretty good on my current meds, which are palbociclib, letrozole and denosumab injection, which thankfully so far have kept my bone mets stable. I've noticed some new drugs emerging, including for example, Elacestrant , a type of SERD. Another new drug to become available recently is Apelisib (piqray) which is dependent on PIK3CA mutation, and is given with fulvestrant. Also I have read about Capivasertib which was in final phase trials I believe. Reading about these new emerging treatments keep me buoyant and positive, even if I might not qualify for the meds it's all a step in the right direction! There's also a very exciting new compound being developed by Bayer called ErSO, which hopefully will be moved to human trials soon. There's a petition on this forum which has attracted almost 15000 signatures asking Bayer to move forward quickly. They have already said they are not going to sit on this drug, and the scientists working on ErSO have said to use the term 'game-changer' doesn't even cover it! 

I hope you settle into your treatment plan. I've found these forums invaluable for support and information.

Take care and stay strong x

Jools xx

 

 

Crazy_dog_lady
Member

Re: Bone mets - please join in

Hi Jools,

I am sorry to hear about your diagnosis x

I am newly diagnosed with breast cancer that has already spread to my bones.  In your post you mentioned 3 new drugs that have become available since your diagnosis in October. Would you mind telling me what they are please? As I am just starting on my journey and want to give myself the best chance possible.

As they say knowledge is power!

So, I'm trying to make sure I don't miss out on any potential active treatment.

Thank you

Jane 

Liz0418
Member

Re: Bone mets - please join in

Hi Umi I had a few issues initially when starting palbociclib mainly gastric ie with nausea and loose bowels but started taking lanzoprazole 15mgs the oncology dept recommended this and it helped now just take it occasionally. also take palbo at night with small snack find its better for nausea and take letrosole at lunch time its also recommended to drink plenty water. Never had biopsy of and secondary tumours I had all lmph nodes reved at initial diagnosis in 2004 in left axilla as i had 2 nodes affected when I had primary tumour in left breast. Hoping your Mum gets on ok I stared on 125mgs palbo but now on 75mgs due to low neutrophils and this is keeping things stable been on this dose for over 6 months. Sending love and positive vibes Liz x

Umi
Member

Re: Bone mets - please join in

Hi Liz,

Thank you for sharing your experiences and treatment info with me.  My mom has couple of lesions on her spine and enlarged lymph nodes on her arm which she will be getting a biopsy for. She was prescribed the same drugs as you are taking now. She is also going to see a radiation therapist to see if she would benefit from that.  I was wondering if there is anything she should know about the pills like any tips about managing the side effects?  I was also wondering if they did a biopsy for your spine? They never did for my mom. 

Thank you so much again. I really appreciate it. 

Umi

 

 

Liz0418
Member

Re: Bone mets - please join in

Hi Umi Sounds like it could be target therapy like palbociclib ribociclib or abemeclib I'm on palbo and over 3 and a half years stable on palbo plus letrosole which is for hormone positive bc which is known as er or oestrogen receptive or +ve. I was never given a time scale on how many years thankfully so many new treatments and people living with sbc as a treatable condition although not curable. I look at it like that. Hopefully you get some clear info from oncologist or is there a breast cancer nurse you could speak to. I was offered radiotherapy for secondaries in pelvis if it gets worse. I have secondaries in lungs pelvis and base of spine. Sending you love and positive thoughts x. Liz

Umi
Member

Re: Bone mets - please join in

Hi Carine,

Thank you for a very informative response.  I have no idea what type of cancer it is. The oncologist didn't tell me any of that. She said mom will be getting radiation therapy and a hormone pill as well as a chemo pill.  We have an appointment on Monday so I will ask her. I will also look into cancer charities you mentioned.  I appreciate your time and all the information you provided.  Means a lot. Thank you! Best of luck to you on your journey. I am praying for a long and happy life for us all. 💖

Umi
Member

Re: Bone mets - please join in

Thank you so much for your kinds words.  I'm glad I found this forum. I am thinking of changing her oncologist but I don't know if that's a good idea right now.  

Thank you again for responding to me.  I was feeling very overwhelmed that day but I am better today. I wish you all the good luck in the world and my prayers are with you all. 

 

Umi

dragoncarine
Member

Re: Bone mets - please join in

Hello Umi,

It's all very confusing in he early days. I received my secondary diagnosis in 2017 (after 11 years clear, or so I thought).

As I understand it, oncologists don't know which treatment will work until they try it, as each person appears to have their own individual cancer. When I found out my cancer was in my bones and lungs I turned to Google (very bad idea, try not to) and found very scary short life expectancies. Later I met a bunch of ladies (from this group) who encouraged me, especially as several had been living with this much longer.

If your mum's cancer is only in her spine, the likely course of treatment will be bone strengthening drugs, e.g. Denosumab injections. Any other drug will depend on what type of cancer, e.g is it hormone and/or herceptin positive or negative. In my experience oncolgists tend to be more interested in treating the cancer rather than the symptoms so it can take a while to sort out pain relief. Best person to ask about that is the GP. If the pain is really bad, she may be offered a short blast of radiotherapy, but again it will depend on the individual oncologist as some seem more keen than others. I had to push hard for radiotherapy to the bones that were causing me most pain (arm and sternum) but I have found it really helped.

Hopefully you are allowed to attend appointments with your mum as there is a lot to take in. It may help if you could find someone who speaks her language who has gone through this. For me, talking to others has been the best mental health treatment.

Lots of other things have helped with the pain. Try to find a local cancer charity, or your hospital may have a Macmillan centre or Maggies, they usually provide a whole raft of complimentary treatments that can be helpful, again you don't know what works till you try it.

Sadly the one thing that you can say is that you don't "recover" from this. Once the cancer has spread, it is with you for as long as you live. However, this does not mean life is over. I carried on working and have only recently decided to quit my job to spend more time with my husband. I don't feel ill, and now that I have my pain under control I can ignore it most of the time. In some ways my life is actually better now as life's priorities get sorted out.

Jools-50
Member

Re: Bone mets - please join in

Hi there, I'm sorry to read about your mum's news. However, I don't understand why some oncologists throw out these vague prognosis numbers. They have no way of guessing how well your mum may respond to treatment. There are women on these sites have been living with secondaries for years, and as one oncologist told me, new drugs are coming out all the time. There's 3 new drugs that have become available since I was diagnosed last October and I'm still on my first line of treatment. Good luck to you and your mum 

Jools xx

Umi
Member

Re: Bone mets - please join in

Hi Liz,

I just learned that my mom's breast cancer came back in her spine.  I'm devastated.  She doesn't speak English. I feel like it's all my responsibility to do the research and to ensure she gets the best treatment possible.  The oncologist is getting her treatment plan together.  It seems like there are a lot of options which makes it all very confusing and certainly doesn't help with my anxiety.  Is one drug better than the other or does it all depend on how her body reacts to the drugs she will receive.  The oncologist told me that the prognosis is about 5 years is this true? I'm not even going to mention that to my mom. I'm so sorry for everyone going through this. I wish everyone a speedy recovery. 

Thank you,

Umi

Mindy63
Member

Re: Bone mets - please join in

I’d like to join this thread. Struggling a wee bit navigating the thread though. I have 2 confirmed mets in skull and spine but still don’t have any treatment plan. The mets have been there since July but it has been slow getting scan and then bone biopsy. Currently on letrosole only but I’ve got new pain in cervical spine so feel things are progressing. I’m seeing oncologist on Thursday and hope they have a treatment plan established. My worry is that the CT scan I had several weeks ago is already out of date.  Hoping things don’t escalate too quickly but feeling quite fearful due to new pain in cervical spine.

worriednow
Member

Re: Bone mets - please join in

Hello lovely just came across bone mets bec iam diagnosed with it . How are you doing now .what medications are you now on. Hope you don’t mind me asking 

Jools-50
Member

Re: Bone mets - please join in

Hi Loulou, Im sorry to read your post... This is such a coincidence, I remembered reading a post from Gillyflower that said she had a false start on meds similar to what you were on, then started on Cape and was doing well.. I couldn't find it , only to see it in the link Jill1998 posted! 

Hoping the posts on that thread help to lift you.. take care

Jools xx

Jill1998
Community Champion

Re: Bone mets - please join in

So sorry you didn’t get better news -have look at this thread - may be helpful x

https://forum.breastcancernow.org/t5/Living-with-secondary-breast/Capecitabine-desperately-need-feed...

Loulou1007
Member

Re: Bone mets - please join in

Hi Ladies

Thank you for your wishes but unfortunately it was bad news. An extra met on spine and they noticed a very small spot on my liver and possibly very small nodules in my lungs, when Oncologist looked at the CT scan he couldn't see the lung nodules but Radiologist said there is something. I was hopeful for good news and that treatment of Faslodex and Palbiciclb (only been taking since July) would have helped but is seems it has done nothing to regain control. He is now suggesting Capecitabine chemo tablet once he has discussed at their MD meeting on Tuesday. Why did the first treatment not work they were 98% sure it would! Will the Capecitabine work. This has made me an utter wreck,  my life has been taken over by this disease, I don't know what to think anymore. Does anyone have anything similar and how has Capecitabine help their regain control of cancer. Thank you

catokitty
Member

Re: Bone mets - please join in

Good luck for today.   I was diagnosed with spinal mets in May 2019 and have been stable on treatment since then.   I have gradually learned to live with it and my anxiety levels have gone down accordingly.  All the best xx

Jill1998
Community Champion

Re: Bone mets - please join in

Good luck Loulou ❤️

Loulou1007
Member

Re: Bone mets - please join in

Hi Everyone

Today I have an Oncologist appointment to get the results of my first 3 monthly MRI and CT scans following my secondary diagnosis in June with spine mets. I was expecting to feel anxious however, I feel sick, tearful, scared, concerned, probabaly the normal. My last F2F appt was when I received the devestating news my cancer had return. I cant wait for today to be over. I am unsre how I will cope if this has spread further. 

Lou x

Mindy63
Member

Re: Bone mets - please join in

Thanks for reply. I’ve had bone scan and despite being promised results I have not been contacted. CT scan in 3 weeks. So it seems I will be waiting well over a month to get any sort of results. Is this a normal wait time?

artygirl2061
Member

Re: Bone mets - please join in

Hi Louise 

Thanks so much for your reply. It has calmed my nerves a bit! 

Likewise I will be tested again after my second cycle. 

Fingers crossed for both of us!

Love Sharon xx

 

Loulou1007
Member

Re: Bone mets - please join in

Hi Sharon. 

I have bone mets and am also on Palbociblib & Fulvestrant. was diagnosed in June 21 with secondaries. My tumour marker CA15-3 were elevated before treatment, after I started treatment they went higher my Oncologist said when the treatment attacks the cancer cells the cells let off an antigen which can increase tumour markers to start with before they then should hopefully start coming down. I am due a 3rd cycle at the end of this month when I will have a  CA15-3 blood test and so hoping they have come down. Hopefully this helps a tiny bit.

Louise xxx

artygirl2061
Member

Re: Bone mets - please join in

Hi everyone 

Hope you are all doing ok on your treatments. 

Maire - sorry nobody has got back to you you and not sure I can help you either but really hope since you posted that you have some answers from you hospital team. 

Does anyone have experience of tumour markers?  I have quite extensive bone mets and possibly liver mets too ( still to be resolved). I have completed 1 cycle of Palbocliclib and Fulverstrant and my tumour marker results are mixed. Two have gone down by 30% but the CA-15-3 has gone up quite a lot. Seeing my oncologist on the 13th when I can chat to her about this but in the meantime, has anyone else had a similar experience? 

Thanks very much. 
Sharon xx 

Mindy63
Member

Re: Bone mets - please join in

Folks, I have a lump on my forehead which is almost certainly a bone metastasis. X Ray is showing a highly suspicious lesion.  It has developed into a lump from nothing in only about 5 weeks. My husband is inconsolable and I am v frightened. Can anyone give me any indication of average prognosis and any hope out there?

kltg
Member

Re: Bone mets - please join in

Hi, I am at present on a targeted therapy and oestrogen inhibitor which my oncologist at Royal Marsden has said should stave off the cancer for a few years. I have had secondary BC for two years and did take Verzenious and Letrozole. He has said there is a triple chemo tablet now on the market and you don't loose your hair. That may be an option for me later down the line. Might be worth asking about it. Good luck x

jane

kltg
Member

Re: Bone mets - please join in

Hi. I have had secondary breast cancer for two years now. This appeared as a large lump to left of my sternum. I have been on Verzenious and Letrozole for two years. This shrunk the tumour but there was still activity in the sternum. I had cyber radiation which cleared the activity in the bone.   I have had other nodes appear in chest and have changed my targeted treatment with IM injections of Fulvestrant. Perhaps Cyber alongside medication might help????

artygirl2061
Member

Re: Bone mets - please join in

Hi Louise

Thanks for getting in touch. Yes, trying not to overdo it this first cycle and resting lots. 

Hubby doing good room service!

Lots of love, Sharon xx

 

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Three years in - that is fantastic! So glad you’re recent scan was stable too. 

Yes, I am taking my Palbo at night and drinking      lots.

 

Thanks for getting in touch. 

Sharon xx

 

Loulou1007
Member

Re: Bone mets - please join in

Hi Sharon

Glad to hear things are settling with the treatment, I am nearly 2 months since diagnosis and on Fulvestrant and Palbo I have had the initial fulvestrant every two weeks for the first month/cycle and for me it is now every month. I have hot flushes overnight and either the palbo or fulvestrant sometimes wipes me out, for instance, Tuesday just gone I had an x-ray appt ( for a suspected broken foot, luckily it was not broken), I then drove to my cancer centre where my oncologist and secretary are based, around a 35 minute drive, dropped off a claim form for a pension I am trying to claim the funds early due to ill health (i'm 51) then drove back another 35 minutes. when I got home I felt obsoletely shattered so much so that I had to lay down and I slept for a few hours, following an early night too the following day I felt as right as rain 🙂

Look after yourself and huge hugs to everyone.

Louise xx

Liz0418
Member

Re: Bone mets - please join in

Hi Sharon I'm on palbociclib for 3 plus years initially I felt nauseated and had diarrhoea but started lansoprazole 15 mgs got from oncology unit or g.p which I take daily and this helped also take my palbo at night and drink extra water x . Hope things settle x  sending love and positive vibes. Just had scan results all stable Liz xx

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thanks so much for your reply. This forum is so helpful!

The side effects from Fulverstrant seem to have settled down apart from some hot flushes. Feeling a bit nauseous from the Palbo tabs but taking lots of anti sickness. 

Only a month into my diagnosis I think it is the emotional impact that is the hardest to manage but I am having less dark moments now I have the reassurance of treatment. 

Sharon xx

 

 

lynnecarr
Member

Re: Bone mets - please join in

Hi Sharon I too was diagnosed in 2016 had lumpectomy chemo and radiotherapy plus tamoxifen got to exactly 5 years when bone scan revealed lesion on my sternum had radiotherapy then abemaciclib, fulvestrant and denosumab injections. Some days not bad others completely overwhelmed

 Main side effect diarrhoea and stomach cramps. It was such a shock and felt mecompletely devastated but I am determined to enjoy my life as best I can and make memories with my family. Waiting for scan to see how the treatment is doing. Sending lots of love it is nice to not feel alone

lovemama
Member

Re: Tumour Markers

Dear Loulou1007,

No need to apologize. I fully understand. I know how important is each treatment to us. (I am triple positive stage 4).

ps. 2 years ago after my cycle 6 of Taxol, I felt numbness in my fingers then my onco. suggested a dose reduction of 20%. I reacted so badly. I shouted "No...I want 100%.... I want to change another oncologist...."

  

 

Loulou1007
Member

Re: Tumour Markers

Thank you for your reply. and links. Following my treatment yesterday I was able to ask the question and I have two injections of 250mg in the top on each bum cheek a total of 500mg, my mistake I think I got confused with  the Palbociclib tablet which is 125mg. Apologies. Louise x

lovemama
Member

Re: Tumour Markers

Hi Loulou1007,

Are you sure your dose is 125mg x 2 and not 250mg x 2 ?🙂

I am getting my SBC treatment in BC, Canada.

The dosage guideline is 500mg for 1 dose but the administration guideline in Canada  is 

two 250 mg injections, one into each buttock.

Please refer to page 5 of below document.

http://www.bccancer.bc.ca/drug-database-site/Drug%20Index/Fulvestrant_Monograph.pdf

Please refer to page 2 of below document.

http://www.bccancer.bc.ca/chemotherapy-protocols-site/Documents/Breast/UBRAVPBFLV_Protocol.pdf

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thank you for this. 

Sharon x

artygirl2061
Member

Re: Bone mets - please join in

Hi there 

Thank you for this. I shall definitely look

into

it. 

Many thanks

Sharon 

teresaa71
Member

Re: Bone mets - please join in

Hi Artygirl2061 

I have recently learnt Emotional Freedom Technique (EFT) which has really helped with my anxiety levels. It's a simple technique of tapping various parts of your body (accupunture points) whilst repeating a statement. 

My crippling anxiety has stopped. I found doing this before my oncology appointment really helpful. 

 

micky140
Member

Re: Bone mets - please join in

Hi.  I am 17 months on, started on Palbocyclib, Anastrazole and Denusomab.  First 7 months I was really really well, then I has rashes that lasted 12 weeks - partly my fault for not contacting Macmillan and GP initially - and then a rash around the site of the 3rd denusomab injection.  I am now on 3 monthly Zolendronic infusions - if you change to these  follow all the advice about drinking loads of water and taking paracetamol the day before and note that mine are given on a chemo ward.  

The Palbocyclib dosage has been reduced this year as it made me feel very tired/exhausted but other than that and brain fog I am still keeping well.  I can no longer sew for more than 20 minutes a day, or follow complicated texts/novels, etc.,  so I have had to come to terms with what I am now able to do but, you know, everything is still working, I can rest when I’m tired, and the medication has kept everything stable.  

Loulou1007
Member

Re: Tumour Markers

Many apologies I thought I had started a new thread but don't think I have, unsure how to start a new topic. 

Loulou1007
Member

Tumour Markers

Hi all

May I ask anyone who is on Fulvestrant how much do they give you at treatment. I am currently on 125mg x 2 (two injections) I read online that 500mg has been more successful with patients. As I am new to secondaries I would like to receive the correct treatment to keep me going as long as possible, like everyone here. I have an Oncologist telephone call on 13.8.21 and will also ask then but sometime I feel they follow the company line, maybe because of cost etc.

I had a blood test today and the nurse kindly called me with the results my CA15-3 was 71 and today was 77 would anyone know if this is s concern? When diagnosed my CA15-3 was 81 so it is still just below this. I also read that tumour marker testing is an indicator but unsure and a little worried why my CA15-3 has increase. I have also been off Palbciclib for 1 week as take for 3 weeks followed by one week off I was wondered if this has been the case with anyone.

Thank you for help with my query.

Louise x

 

artygirl2061
Member

Re: Bone mets - please join in

Hi Shirley 

Thank you for getting in touch. I really appreciate it. 

Starting treatment today of Palbo, Fulverstrant and Denusomab.  It would be great to hear from anyone else on this regime in terms of how they are finding it. 

Hope that you manage the Cape with not too many nasty SEs. 

This is such a great, reassuring forum and is really helping me as I only got my diagnosis a few weeks ago and am still experiencing moments  of really crippling anxiety. 


Sharon xx

 

 

 

Timmycat
Member

Re: Bone mets - please join in

Hi Sharon, 

I've only just seen these posts, and am so sorry to hear that your cancer has returned in your bones and liver.

I was diagnosed in December 2019 with secondary bone mets, since round about the previous September I'd been suffering with the most excruciating pains in my ribs, back, hips and pelvis.

I was put on Ribociclib, Letrozole and Zometer for bones in January 2020, and my local hospice sorted out the pain with continuous morphine coupled with paracetamol. The relief was a long time coming but oh my goodness it worked, 

In May this year unfortunately the drugs stopped working for me and the evil cancer had spread to my liver.

I'm now into my second week of Capecitabine, the lovely ladies here gave me loads of help, advice and hope.

I wish you all the best, 

Shirley xxx

pennyb57
Member

Re: Bone mets - please join in

As mentioned previously I was diagnosed last year and this year (spine, ribs, sternum, pelvis, sacrum, and goodness only knows where else.  I am currently on palbo and anastrozol (changed from letrozol), and what I want to know is how pain being managed other than loads of pain relief ie is this normal? 

SondraF
Member

Re: Bone mets - please join in

At diagnosis I had one sacral met causing a lot of pain and weak leg problems, but after scanning they found mets to L3, 4, 5 and an extremely tiny met on one hip. The sacral met was radiated and I have never had pain from the others. Ive been on Ibrance/letrozole for 18 months now and its also halved my original breast tumor size as well (which apparently won't come out unless it shows activity and regrowth). My neutrophils tend to run low, but MO is happy to let me continue on 100mg as I feel absolutely fine and have plenty of energy to work, exercise, and socialize.