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Bone mets - please join in

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Re: Bone mets - please join in

Aye I'm in 32 the increase from 20 to 30ng seems helped no oral morphine been in bed lot today didn't sleep well got sleep. Half four

 

I agree it's just not pain physically it's emotionally as well everything adds up especially in my case when my mum got diagnosed two days ago with thyroid cancer which is crap and got. Welfare meeting tomorow at work as been off six months hoping. I sleep better tonight I've had lovely hot shower in clean pj's and. Just gonna eat remains of take away curry watch masterchef head to bed xxx

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Re: Bone mets - please join in

I am sorry that both of you have got increasing pain, and yes it is very scary as the cancer journey is always associated with pain in suffering, but I would say that sometimes our pains are not definitely from the cancer itself. I know that this may not matter to you but for me it does as I know that combined with the cancer journey we are not getting any younger. Please, however do not suffer in silence, as your oncos about ways to decrease pain, try also natural anti inflamatary sources, do not give up to the panic, I know it is hard I am in the same boat too, I know that it is gradually going to sink, but we need to face the problem, accept it and go on trying to live as long and as well as we can. Do not know where you are based but from my experience CBD oil helps with pain and sleepless nights. 

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Re: Bone mets - please join in

I've not yet had my scan due it end this month but me too my pain increasing I'm in 20ng zoromoroph twice daily had two lots of 4ml of oramorph so far today plus two lots of paracetamol as slept over was supposed be half eleven  second dose had ten to one.

 

I dunno if knee joint pain from lethrzole as they changed my brand or what but I know my crushed vertebrae been painful few days 

 

Xxx

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Re: Bone mets - please join in

Bone pain. My latest scan showed nothing much changed but my pain is gradually increasing. I have a new pain in my right arm (xray showed a possible something, bone scan showed up nothing) onc has requested an mri on that arm. The sternum pain is also flaring up at the moment but I've had radiotherapy on it twice already so not sure what other options are left. I so much want to be pain free. I'm on 40mg Zomorph twice a day and recently been needing to take extra Oramorph during day and an extra 10mg of Zomorph before bed just to be comfortable. Any other suggestions that people have found helpful?

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Re: Bone mets - please join in

Hi Nicky yes I have not posted for a very long time, I tend to stay away from the forum, as I hate letting everything connected to cancer get most of my time and attention. I work and this is something which distracts my attention and by feeling that I am ale to do it, I gain much confidence. I hope it will be like that for a longer period though...

Thanks for sharing your experience with me, I feel very reassured now once I see that someone found it manageable. I have started thinking of agreeing to the Docetaxol treatment as I am thinking this is not going to affect so much my quality of life. And after all if I cannot  bear it it could be changed to the "milder" dose or ...who knows....A decision should be made and I need to carry on somehow. I think I just lost my confidence and will to fight which I had 3 years ago when diagnosed. A lot of things have changed and it cannot be another way as I have entered the menopause and the disease progressed a little.. I will ask definitely about a second opinion and thanks a lot about the information you have provided. 

Hope everything goes well with you and you do not find making decisions so difficult like me. How many treatments have you undergone so far?

 

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Re: Bone mets - please join in

Hi Avrelai, it’s been a long time since you posted on here, which is good thing for most of us!
Sorry to hear that you had a scary situation with Cape, I’d never heard of a cardiac spasm but I expect it’s put your oncologist in the mind of not continuing with it, even at a lower dose. In my experience oncologists may be experts in their chosen field but understandably are not experts in other linked fields such as cardiology despite them overlapping quite a bit. I also fully understand your dilemma about which treatment to start next and it’s always difficult when you, as the patient, are given the choice. I have been in a similar situation and it’s not easy weighing up the pros and cons of effectiveness of a particular treatment over another one against quality of life ie not ‘living’ at the hospital every week. I am expecting to have to make some similar decisions soon depending what my recent scan shows and even if not immediately it won’t be much further in the future. 
As to advice about the 2 chemos I have had docetaxel, back in 2014, and found it easier to cope with than the first chemo I ever had FEC, which is the worst by far. I hated being on steroids and the side effects you get from coming off them. Like one of the other ladies I did suffer from constipation but I think that’s the steroids. The first cycle gave me horrible nerve type pain but I didn’t get it on any other of the 6 cycles I had in total. I did loose my hair (again) but it did grow back after chemo was finished. I did find the cumulative effects of chemo affected my levels of fatigue but was able to go about doing general things in between cycles. My concern, as your is, about pacitaxel (which will be the next recommended chemo for me) is that you have it weekly and your life is ruled by blood tests and chemo visits. 
A couple of suggestions for you is an you get a second opinion, at a separate hospital/centre of excellence so you get a different view. Also, but this might be a bit of a long shot and depends where you live in relation to travel, can you get a referral to the cardio-oncology unit at The Brompton hospital in London? They specialise in heart related issues caused by cancer treatment and is an NHS run clinic. I have been under their care for 6 years now, initially with a lot of additional cardio care but more recently as an annual checkup.

Good luck with whatever treatment comes next and hoping it works well for you.

Nicky x

 

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Re: Bone mets - please join in

Hi avrelia, 

 

Best to speak to your onc about it. Don't forget you can always stop and change treatments if it's not working for you, the choice is yours. 

Dont worry too much about it, just take it day by day. 

Best wishes xx

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Re: Bone mets - please join in

Oh Channie I see now. I cannot immagine myself to go to the hospital every single week for chemo, my breastcare nurse explained to me yesterday that there is pratically almost no difference between the two drugs they have offered to me and  I only need to think in terms of time, as Docetaxol is going to be given every 3 weeks and Paclitaxel will be every week. However what I have been reading is a bit different as it appears that both of them are from the same family but with Docetaxol you are less likely to develop neuropathy, but hairloss might be permanent. Also according to some studies Docetaxel is delaying the progression more effectively.....I am still struggling to understand everything and also the fact they they have not offered to lower the dose of the Xeloda and see if it will be working. Is there anywhere I can go and speak to someone in person about all these, or I might even get more frustrated. My haed is a chaos. Sorry all that I am such a moaner these daysXXX

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Re: Bone mets - please join in

Hi Avrelia, 

 

No, paclitaxel took me 5 months to complete. As you get a week off after 3 weeks of having it weekly. So it takes about a month for one cycle. I was suppose to have 3 more rounds of it, one more cycle, but I asked to stop it as couldn't endure anymore. I was off work the whole time for it due to the pain and fatigue. 

 

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Re: Bone mets - please join in

Hi Avrelia.

I had Docetaxol with FEC 3 of each plus surgery and radiotherapy . Cold cap wasn't offered by my local hospital at the time though it is now. Regards side effects I was able to work all through my treatment so they can't have been that bad. 

Hugs xx

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Re: Bone mets - please join in

Hi Kirky_68 I can see you have been through a lot, and I am sorry about your awful experience with losing your hair. Did you try the cold cap? I am really afraid of losing my hair permanently. Back in 2016 when i was on EC i lost all of it but it grew back a month after I finsihed and it was all fine. I am ok with SE if they are mild but I am not sure how will I cope if they are severe. I was also a bit surprised that my oncologist did not lower the dose of cape to see if it is going to work for me, not just rush to the next available treatment. I hope you are ok on your current one and you will have many more years to come. Were you only on Doxetaxol at that time or you used it as a combination with other medicines?

Channie thanks for sharing well done with Paclitaxol it seems that apart from neurophaty there are no major side effects I mean severe ones. You said you had 15 rounds of it does this mean that it was only for 15 weeks which is less than 4 months? 

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Re: Bone mets - please join in

Hey hey 

Ive been in lot of. Pain with crushed vetbse lately it's annoying I'm. On paracetamol mst pre. Gablin had oral. Morphine so far today xxx

Member

Re: Bone mets - please join in

Hi Avrelia

I had Docetaxol in 2013 as part of my treatment for primary bc.

It made me fatigued and constipated mainly as well as a metallic taste. I lost my hair and it never really grew back which broke my heart. 

I was diagnosed with secondaries 2015 lungs, liver and bones. I had Capecitabine for 2 years. Originally it gave me spasms like you but had the dose reduced to 60% and that was enough to keep me going for 2 years. 

In 2018 I had Paclitaxel 18 rounds every week. Main se were fatigue and neuropathy in left foot but not completely debilitating. 1st 12 were okay but the last 6 were a slog. Paclitaxel kept me stable for 12 months until very recently. I am now on Eribulin weekly.

I was very frightened about Pac after having such a hard time on Docetaxol but very glad I decided to do it. A year has been a precious gift that I am very grateful for. 

Everyone is different and your experience might be different to mine but you can always stop whenever you want. 

Good luck and big hugs from me xx

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Re: Bone mets - please join in

Hi avrelia, 

Sorry to hear you're having a tough time, hugs to you. Treatment can be scary but we must plough on to fight the disease from getting any worse. Never give up any hope of being able to reduce or stabilise the nasty cells. 

I've had Paclitaxel, started Oct last year and finished in March this year. You have it every 3 weeks on then get a week break. For me the side effects weren't great at the start I had alot of bone pain, achy joints , was nauseous and was tired alot no energy whatsoever, was in bed mostly ,took painkillers, felt well on the first few days after having it probably because of the steroids then it kicks in. You do lose your hair but it grows back and mine started growing towards the end whilst I was still having it!  Your palate changes and sometimes things can taste metallic I use to love cold foods and this was during winter. But everyone reacts differently to drugs not everyone gets these side effects. And it may not affect you like it did me. I came through the other side of chemo after a few months and felt better towards the latter end I think your body becomes used to it. I had 15 rounds of it and then asked onc if I could come off it as it was so enduring towards the end I couldn't take much more. You can always ask to stop it. But the good news is it worked, and my cancer cells which are in the bones only stabilised and it did its job! All the pain and suffering was all worth it.

I'm now on a hormone medicine aromasin once a day and that is working well my last few scans and onc meetings have remained stable.  

I hope all goes well for you, let us know how u get on. 

 

 

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Re: Bone mets - please join in

Hello all,

I have not been around as 2 treatments have failed I was in hospital and now I am back home faced with a dilema what to do with my next line of treatment. I have read some of the posts and I am glad that I can still see some names I have met here initially, may God bless you and keep you all safe. I apologize in advance for my sad and negative post.

I am having some tough moments this year, namely having to deal with progression from bone metastasis to increased bone metastasis and liver ones. In June I had to start Fulvestrant and Abemaciclib, which did not work at all, started Capecitabine in October the beginning and ended up in A and E with Coronary spasm. Now, as the oncologist says I have run out of chormonal treatments and milder treatments she is offering me 2 types of chemo to choose from Docetaxel or Paclitaxel. The first one she says will be given every 3 weeks and second every week. She has explained that the second one has less severe SE, and that is why it is prescribed to patients who are not so fit as I am. I am very very sacred I do not want to end up in hospital again I feel so well when I am not on any medication I do not have any pain and I do not want to pull the devils tail and start  suffering because of treatment not because of the illness. I know that my tumor markers are rising and my liver function is worsening according to the latest blood tests but I simply want to have a good balance between SE and treating the illness. I am so scared. Please anyone who have been through either of these chemos share what sides effect you had, did it work for you when did they notice any results.....I know that we are all different but I need to hear some stories in order to make up my mind. I just want some quality life, even if it is shorter than the SE one.

I know it is my decision I have read all the leaflets I have received about the side effects of both drugs but I need to hear real time stories probably, do not know. I am also concerned about losing my hair again and especially when I have read that with one of the drugs I can loose some if it for ever. Are there many such cases?I know this is not the most important thing but for me it matters a lot. I want to scream it is so so hard. I have not given up may be because I am so asymptomatic. I just want to delay the symptoms as much as I can! I want quality life. I do not want to stay in bed and wait for pains and aches and .....death.....Sorry for the negative post. I feel so alone........

Please if anyone has been recently on one of these treatments could you share your experiences? I am also a bit confused as the oncologist said that I might have both them in the future anyway so it seems that it is just a matter of choosing which one to start with. I thought that they are from the same family and they are excluding each other. Please tell me your opinions about that too. Thank you

Thank you allXXXX

Community Champion

Re: Bone mets - please join in

Hi Rachel

 

I have been living with bone mets for nine and a half years now and am still here and doing ok Smiley Happy

 

Initially I  had CT  scans every 3 months and annual mammograms. Now my Onc says (like yours does) that mammo is not necessary as CT would spot things. I  had a lumpectomy/WLE so unlike you my primary was removed. I  think if I  still had my primary I'd want more reassurance and would be asking my Onc for mammo occasionally just to keep my mind/emotions under control (but that's just me).

 

After a while of being 'stable' my CTs moved to 6 monthly - there was a suggestion at one point that I move to annual CT but I wasn't happy with that and Onc continues to do them 6 monthly.

 

I've asked the question about arms and legs myself and the response I  got is that mets don't normally go to the 'long' bones. I know that this isn't actually true as I  know women who have bone mets in their legs/ankles. It would seem general practice thouh to only look at those areas if a problem arises. I do have a nuclear bone scan (different from bone density scan) every 2-3 years and that does normally deal with whole body and would show up 'hot spots'

 

Hope this  helps a little. Good luck with treatment x

 

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Val

Your post is so inspirational to read and I pray myself and other people on this site that we can say the same thing in years to come.

 

I do have a question due to your years of experience and other members out there over scans with bone mets. I apologise if this has been covered at some point before........ But oh my there are so many posts I can't read through them all to check. 

 

I was diagnosed primarybreast cancer and bone secondaries to my manubrium (part of sternum) right pelvis and right humerous in one go out the blue last October. But my scans are every 4 months as a CT and my arms and legs are out of the scanner. So my question is how does anyone know if other areas of bone are effected if this is how I am imaged each time. Also what type of scans do other people have to keep an eye on this, plus do I or should I have yearly mamograms as when I brought this up with my consultant he said it would be picked up on my CT Scan (my primary is still in situ).

 

Any advice would be great as I find areas and hospitals seem to be different. 

Rachel xx

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Maggie and all. October is my favorite because I love the colorful leaves, pumpkins, gourds, and fall flowers. I like sweatshirt and jeans weather. Although today it was 95° F, here. I cleaned and finally got in the attic and got out my Halloween and Fall decorations. I was supposed to do it a couple of weeks ago and didn't get it accomplished.Cleaned out all my flower pots with annuals in them, brought in my herbs and went shopping for pumpkins, gourds and mums (fall flowers). All finished. 

 

I took pumpkins, gourds,and flowers to my grand daughter. She will be 22 months soon and doesn't call me anything. One day I got her to call me nana and then she went and got a banana. Today when I stopped I said grandmom brought you a pumpkin, gourds and flowers and she said Nana and touched and wanted picked up. I guess I'm officially Nana! F2F

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Hi ff

Is September /October your favourite month for a reason or because it's a lovely month with fall just starting? Woke up inspired by your words and had a great  walk in the sunshine with a good friend . You're right ... we won't be dictated to!! 

Ps hope the nails are getting better.

Maggie

xx

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Maggie, I'm sorry you had one of those awful nights!! Believe me I still have them too! That's when I do my best cleaning! Lol, I'm upset and I throw things away better then! I refuse to let this blasted disease to dictate who I am. Smile and have a better day!  It's my favorite month so I have reason to smile! FF

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Hey FF,

So not funny face at all!!  So glad you had great time and all turned out well.  You are an inspiration to us all, your post really cheered me up on a dark and sleepless night when nausea  and the demons came to call.

Keep posting, as Anne said you are one special person!

MaggieB

xx

 

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Hey all 

Well today I walked furthest and I been with my stick but every time I go got walk by backs in bits afterwards can't win =(xxx

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Got the swelling down and had a fabulous time! Thanks Anne!

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You will look lovely. Anyone who reads your generous and positive posts will know what a special person you clearly are. You will look great and your husband will be proud of you. Hope you have a great time x

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Thanks Sarah! I will keep the antibiotic info in mind if they start oozing. When they oozed years ago the Dr never gave me anything. 

Today's dilemma. My eyelid is swollen from my my lashes to my eyebrow! I've been putting warm compressions on it to bring it to a head. No luck. Calling the eye Dr in a couple mins. Last week the same eye had a broken blood vessel. I have a big event to attend tomorrow evening with a new outfit to surprise hubby. Not going to look nice with this eye and no make up. I will be happy if we can get the swelling down. FF

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Hi Funnyface,

I too had an issue with my fingernails lifting whilst I was on pacitaxol, it started after about three months of treatment and at one point they were infected therefore a course of antibiotics followed, this cleared up the oozing.

I have my manicures done at home by a brilliant lady, she is well aware on my treatment etc therefore no concerns with her re germs and throughout have kept them very short with gel polish on, they improved after about three months. 

I'm no longer on the pacitaxol but on erublin so will have to see what happens with the nails now.

I wish you luck with your treatment. X

 

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Thanks Maggie and lovemama, I have shown them to my GP and oncologist. Both said to keep them short and one said to put nail hardner polish on them. I've already doing that. Both said there is no fungus and to try to keep them dry when possible to avoid fungus. I do my own manicures and pedicures to avoid infections. FF

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Hi FF, I got lifted fingers during and couple weeks after my paclitaxel treatment. But my lifted finger is not serious and was not aware of it,  It is only when I was scratching with my fingers, it hurted me and found a white line across the finger nail. I checked it with my onc when the white line almost moved to the tip. My onc said it was ok. The lifted part is at the 'bottom' (I think he means at the tip) .  So, I think if lifted finger is due to drugs' side effect, it can be corrected automatically after treatment. Before  seeing my occ, I  worried if like in one chinese article it mentioned an old lady had poor lifted fingers and later found out it was the symptom of  her lung cancer (or liver cancer, forgot, chemo brain).  I believe you will check with your medical team immediately and finger crossed,  it is only side effect. 

 

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Hi FF

I agree with Anne, you're so good at replying and reassuring other people, it's a shame no one can offer help on this.  I have no idea if this would help,  and you maybe need to ask your Onc. first, but my Oncologist prescribed Vitamin B6  (Pyridoxine) tablets to help strengthen my skin,  as my hands and feet were peeling and sore (I'm on Capecitabine).  Entirely different I know, but just wondered if it might be an option.  My nails seem quite strong at the moment and all  my life they've been a bit weak and weedy.   I've always envied people with beautifully tapered nails!

Good luck, I hope you do find a solution, it's sometimes the little things that get us down isn't it?

 

Love and hugs

MaggieB

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Anne, It's OK. I figured nobody is having a problem. They just look ugly! They break real easy. Can't scrub out a pot or they break. Hubby gets to scrub the pots. FF

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I’m sorry you haven’t had a reply. You are always so good at responding to people! I haven’t had problems with my nails yet. It sounds horrible. Poor you. I hope you get it sorted soon x

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Does anyone have lifted fingernails? I had them years ago when on a chemo called abraxane. They got so bad that they oozed and smelled. Six months after stopping abraxane and they were back to normal. My nails have been lifted this time for over a year. Just when they look like have one or two sealed back down I will get a red line across them and they do it again. They don't ooze and smell this time. They are also very thin. My toe nails were fine the other time and this time. I keep them short and do my own manicure and pedicures. I don't want to take a chance on any germs. Looking for suggestions. FF

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Hi Dan, pleased to meet you, and David. I’m so pleased you have found a ‘buddy’ to go through this journey.I think that there has been a lot of common sense written here, and I do hope that you can take positive action which negates the extremely ill considered words from your Onco. I have been on the !etrozole-Palbociclib combo for two years now, and after some initial issues with tolerating the Palbociclib I’m extremely well at the moment. My Onco refuses to do numbers....of any kind. He said he’ll do the worrying for me! He’s also said that when this stops working he has plenty more ‘tricks’ in his little black bag. 👍I know from my SBC group meetings that new meds are coming out all the time. What I have learned, is that I’m living with cancer, NOT dying from it. I enjoy life to the full, swimming, gyming and TaiChi- ing, and long may it continue. Good luck to all out there. 🍀😘

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Hi FF,

 

Glad to hear palbo + letro did a great job for you.  And glad E & E seems to be working too.  Good for me to hear from someone in front of me!  Yes letrozole is not great - I have sore joints, mainly hands and feet - but seeing as the combo is working well for me, just got to put up with it.  Following my first round of treatment the hospital sent me to the gym to keep fit and I have continued since which hopefully is slowing my muscles withering away - zoladex blocking testosterone production not great for muscles either!  And gym does help with sore joints as when I'm on holiday and cant keep going to the gym I get sorer and stiffer.  I was never a gym person but I would highly recommend now - mixture of cardio on treadmills and cross trainers, some light weights and stretches.  

 

Keep well,

David

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Dan, I'm glad the replies helped! There are a lot of treatments in the drs little black bag and new ones coming! Also, if your side effects are severe they have many things to help counter act. Don't suffer needlessly, ring your oncologist if things are tough. When I start a new treatment I stop at the pharmacy and make sure I have supplies to help with stomach and intestinal issues. I stop at the store for some comfort foods that are easy on me. Better to be prepared than need something and have to go out shopping with a bucket in hand. Good luck! FF

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David, Thanks for responding to Dan. I wanted to respond to you, too. I took palbociclib and letrozole for almost two years. That combo did wonders for me. My lungs had a lot of ground glass opacity in them. This combo cleared it out! I breathe better than I had in years. This combo stopped working in May 2017. I felt fine but supposedly something my lungs started to get some ground glass opacity, again. I'm on E &E, now. I have been on it 2 1/2 years. I actually don't think the palboclib quit working. I go to see my oncologist in Nov. and want to talk to her about it. Nobody has mentioned the ground glass since. At one point she told me she thought it was dead cancer cells. 

 

Palbociclib weakened my leg muscles. I didn't realize how much on stairs that I was pulling with my arms to get up, until I went shopping. I went to step up on the curb and couldn't get up. I tried several times. I had to move to where there was a sign and hold onto the pole. I then started doing leg exercises. I can step up on the curb now and try to go up a few steps without pulling. I noticed the other day when shopping and trying on clothes that my calves are completely flat. I really have no calf muscle. I know other ladies that this happened, too. Letrozole killed my knees!

 

By the way after 14 years of this plus breaking my back I still work PT as a caregiver. Best wishes! FF

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Hello again,

 

thanks for these positive replies, just what I wanted to to hear, also good to hear from another male, I’ve not come across another yet.

i saw the radiotherapist yesterday and he was an awful lot more positive. He just wanted to do the SABR radiotherapy but said because it’s close to spinal cord wouldn’t be able to get it all. I quizzed him about different surgeries that I could have which I’ve read up on and he’s going to seek some surgical opinions to see if any are options. 

My only concern was surgery hadn’t really been in his mind and only because I asked is he going to look into it. I’d of thought he’d of been looking at all the different options.

but on the bright side he was happy with what he saw and what he can do to get rid/control it for a ‘long time’

Im not going to be getting any treatment in the short term as he has to get the opinions, if surgery, it has to be planned and he has to go to some sort of committee for the SABR treatment as it’s not standard on the NHS. Oncologist also says I won’t start any of the other treatments until my radiotherapy is finished. 

So im a little frustrated nothing is being done for the next month or so but much happier with the positive comments.

thanks again for the responses, feel much better about it all.

Dan

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Hi Dan,

 

Like you I'm a man.  I'm now 49, have secondary in lungs and I'm on palbociclib, zoladex and letrozole.  I was initially diagnosed in 2015 and had a mastectomy, lymph node clearance, chemo and radiotherapy, followed by tamoxifen. 

 

2 years later metastases were found in my lungs on a CT scan, so I had a PET-CT scan which was more definitive.  I had a thoracotomy to collect some samples to check if the cancer was still oestrogen positive and Her-negative as sometimes cancer can switch.  As the samples came back oestrogen positive I was put on zoladex, letrozole and palbociclib.  I now have 6 monthly PET-CT scans and so far the remaining lesions are under control and no new ones. 

 

I was specifically told the thoracotomy was to collect samples not cure me.  I was shown my scan by the surgeon and my right lung had a couple of obvious lesions plus lots of tiny bright spots in it like a cloudless night sky with stars shining - each star he said was a new metastasis and there was no way he could remove them all as he couldn't see them with the naked eye.  My oncologist deliberately would not quote statistics to me as we are all different in how we respond.  However he is very upbeat about my prognosis and tells me that when the current drugs stop working he has a good supply of trial drugs waiting for me.

 

When my breast cancer appeared in my lungs I had maybe 6 months of my local hospital oncologist taking their time and in no rush - or that is how I read the situation - and I became quite frustrated.  My GP suggested I seek a second opinion from a specialist hospital which was the best thing I did - I had a really positive no-nonsense consult and in 1/2 an hour I had a plan and confidence restored - thoracotomy to take samples, and then that would dictate future treatment.  Rather than return to my original hospital I have remained with the 2nd opinion oncologist - my GP happily referred me to him.  Within 2 weeks I had thoracotomy and then a month later I started the new medicines.  

 

It is quite common to seek second opinions from oncologists so I wonder if you should consider this?  May not change anything but hopefully will give you confidence, which is so important.  Obviously depends on where you are in UK?  You current oncologist then forwards all your information and scans to the 2nd opinion before you attend.  You can have 2nd opinion via NHS or you can speed things up a bit and go private and pay for one consult - maybe somewhere in region of £300.  The 2nd opinion then reports back to your oncologist with advice etc.  It may be that your current oncologist would be only too happy to have a 2nd opinion as us men with secondaries are pretty rare.

 

I don't know much bout SABR radiotherapy but it sounds like it's an effective way of targeting a lesion without radiating surrounding normal bone, and it is probably as effective as surgery at removing the lesion.  Surgery on T12 is probably trickier and riskier with long recovery etc, compared to SABR and there probably is not much difference in terms of dealing with the lesion and killing the cancer.  Following radiotherapy the palbociclib etc should also have a good go at any remaining cancer cells and using PET-CT scans they can monitor the lesion's response to palbociclib etc.  My remaining lung lesions have just shrunk and shrunk and shrunk with each scan so with luck your lesion will do the same.

 

Hope this helps.  I think you have many years ahead of you.  Drugs like palbociclib are revolutionising breast cancer treatment and there are quite a few more of these 'clever' drugs in the pipeline.  I think of it that by the time palbociclib stops working for me there will be the next wonder drug and I will switch to it and on I go!!

 

Come back to me if you need to.  Happy to chat some more and happy to give you my phone number etc.  

 

Keep your chin up,

 

David

 

 

 

 

  

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Re: Bone mets - please join in

Welcome Dan! I wanted to pop in here after reading your story. I want to give you some hope! I was 41 when I had primary breast cancer. I had two cancerous tumors on one side and a benign tumor on the other. They said by the size of the largest it could have been growing for 10 years. I went through the whole normal protocol and 10 years later at 41 it had set up camp in my lungs. They told me it wasn't an immediate death sentence but said I probably only had 2 years. Well here I am 14 years later from my Mets and turning 65 in Oct. The best advice I can give you is keep on moving and enjoying your family. You are entitled to your tears and fears, but don't let them take over you!! I can't promise you what your journey will be like, but I want to give you hope for more than what they said. If you have any questions feel free to ask. You might not get answers right away from me bc I'm from the USA. I'm about 30 miles west of Philadelphia, PA.  Hugs, FF

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Re: Bone mets - please join in

Hi Dan

Youve come to the right place and have explained your situation very clearly. It is very rare for men to get breast cancer and therefore even rarer for them to get SBC however the disease/condition/whatever you call it is the same.

The treatment you have been advised you’ll be having is very standard for hormone positive SBC. Although you show as only having one met the idea will be to stabilise and treat that first before deciding whether a more directly targeted treatment would be suitable. Possibly radiotherapy but not all of us, in fact hardly any of us have had that. The treatment you’ll be on is one of the most uptodate ones so hopefully will keep you stable for many years. As you say there is no cure for SBC but there are ways of keeping it under control. I have been living with bone mets for 11 years now and have not been eligible for any of these newer drugs mainly as they weren’t available earlier than a year or so ago (other than under trial conditions) and also as they are often first line treatment options. Goodness knows why your oncologist used incredibly out of date and inaccurate survival figures, it doesn’t help anyone to be told this, especially the patient and their family.  

As to the treatment itself the one things you probably will suffer with is hot flushes mainly due to the zoladex. I remember when I had radiotherapy for my primary speaking to men who were having rads for prostate cancer who were also on zoladex how bad their hot flushes were  and of course totally unexpected whereas us women expect them at some point in our lives.

Good luck with your treatment and do come back to ask any questions, someone is bound to be able to help

Nicky x

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Re: Bone mets - please join in

Hello Dan. Poor you and welcome to the forum. I have breast cancer in the bone and I’m on Palbociclib Zometa and Anastrosole. I also have calcichew tables. I was diagnosed 18 months ago and so far feel well and work full time. I have scans every three months and they have been encouraging so far. My oncologist said that these treatments would work for a few years and then she’d try something else. She was very clear that it couldn’t be cured. I’m quite surprised by the probably got a couple of years comment. It seems very glib. The treatment you are on is new and is considered good. Best wishes Anne 

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Re: Bone mets - please join in

Hello,

 

I’m new to the forum and thought I’d say hello and see if anyone had any tips etc. I’m abit different in I’m 35 and male, I was diagnosed with BC 3 1/2 years ago which required a mastectomy and ongoing tamoxifen. I thought that was that.

9 months ago during a CT for something else they found a lesion in my T12 spine. For 9 months I’ve been told it’s nothing probably benign etc. I’ve nagged and nagged and after many further scans and a biopsy had it finally confirmed a few weeks ago (by phone) that the breast cancer has come back.

Seen the oncologist last Friday who told me I’ll be on zoladex, letrozole, Palbociclib etc. She said I’ve probably got a couple of years, which I found very negative 👎 

seeing the radiotherapist tomorrow to talk about SABR radiotherapy.

I’ve just not been filled with confidence that what they propose is optimistic/aggressive enough. From what I’ve read online for single metastasis they can do surgery etc and try to effectively cure it or do separation surgery and stabilisation then SABR etc. I’m worried they just want to control it and not try to get rid of it (I know it can’t be ‘cured’ but think it should be treated like it can be.

I’ve been fobbed off for 9 months and I’m abit scared I’m being fobbed off again with standard treatment when there’s possibilities of doing more.

I’ve 3 young boys, loving wife and I’m  frightened of the thought I won’t be around for them. I just want to do everything I can to give me a chance to be around for a while.

well that’s basically me, thanks for reading, hopefully I can learn from this forum and get support when I need it.

Dan

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Re: Bone mets - please join in

Hi Katzygirl, glad your feeling a bit better .Of course I will meet up , just let me know .My daughter is about to give birth anyday , and wants me at the birth, if I’m up to it .I will be there for sure .What area of Colchester, do u live .Wait to hear from you x

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Re: Bone mets - please join in

Hi Hannah, now into week 7 and things have finally settled. Had so many side effects the worst being the tummy troubles which had me virtually housebound and right off my food for a while which is very unlike me! My Mum was very poorly in hospital when I started, I got shingles 3 days in and then Mum died which caused a huge falling out with my Sister so some of the side effects may well have been due to that . Ended up having a 10 day break after just one months treatments but now 5 days in to month 2 on a reduced dose of abemaciclib (100 mg) and tummy is good so far so I plan to return to work on Monday all being well. I would love to meet up when you feel up to it. Would also love to hear from anyone else on the Abemaciclib, fulvestrant, Xgeva combo or similar as i know it is fairly new. Steph 

Community Champion

Re: Bone mets - please join in

Hi

Just some additional information from me as a long term secondary BC survivor.

I have had bone mets for over 11 years now and also liver mets for over 6 years. Over this time I have had various treatments, some more intrusive than others. 

Your treatment plan is based around the type of Brest cancer you have (that has now spread outside of the breast to another area of your body). This might mean you have treatments other than hormonal ones ie Herceptin. A biopsy can determine whether your secondary BC is the same as your primary. If one can’t be performed, due to difficulties accessing the site of the mets, it will be assumed your SBC is the same as your primary was and relevant treatment given.

If you are lucky you will also be given support from trained nurses or MacMillan specialists as described in the previous post but believe me it’s not available in all hospitals so you may need to do your own research or ask lots of questions. It’s been a constant factor ,mentioned  on here over the years I’ve been a member, that SBC is not supported anywhere close to how primary BC is supported, there are very few trained SBC nurses and not all hospitals have a direct link to MacMillan. I’m only adding this info as you may not be contacted at all, I have never been and have only occasionally been introduced to a SBC nurse only to have them disappear from the scene a few months later with no replacement in sight!

Good luck to all with a new SBC diagnosis, it is a very scary time, we have all been there so do understand what it’s like. There are lots of different treatments out there, some only just available in the last year or so and some which have been tried and tested over many years. Although breast cancer can return at any time after the primary has been treated there are now more options available than at any other time to treat it.

Nicky x

Member

Re: Bone mets - please join in

Hi JDT1970 - I am new to the forum and I am supporting my partner of 32 years. Her breast cancer has returned in her spine after 10 years from her primary. I think her experience has been the same as yours up to now. She had to see the Orthopaedic consultant because she needed a bone biopsy. This was just to confirm the bone cancer is breast cancer cells so they know how to treat you. My partner had to have a biopsy taken from T4 vertebrae and it confirmed it was breast cancer in her spine. She also had a CT Scan but it was to see if the treatment she was put on was having an effect on the cancer. Fortunately her cancer is responding to the treatment she is on. The bone biopsy doesn't hurt and CT Scan is routine to gain a base line of how small/big your cancer is so they will know next time they Scan you how well the treatment is doing for you. If it is shrinking the cancer. You will feel stunned, we were completely devastated as we thought like you after 10 years it was as gone. The questions we asked were how big the cancer was and was it anywhere else in her body. Thankfully they said it was in the spine. We then asked about treatment, side effects but they do give you all the information you will need. They will arrange for nurses to call and MacMillan nurses to call to see if you are having and problems with medication, another will come to see if any aids will help you in the home and another MacMillan nurse will come to go through what benefits you are entitled to. Don't be freaked out by all this. We were at first but we later realised they are there to help and it's comforting to know someone is there to talk to if help is required. My partner commenced on daily Letrozole which is an anti-oestrogen drug, daily Palbociclib for 21 days then 7 off and she will be given Denusimab (probably spelt wrong, sorry) That will be given as a monthly injection when she starts it. We are delighted my partners cancer is responding to treatment. There are side effects from this drug but it's a case of managing them best we can between us. Unfortunately I am disabled in a wheelchair and my partner is my main carer and we have no support system around us. We are very much on our own with it. That's why I have joined the forum to gain support as a carer for my partner. It's very difficult for me but it's something that I will do to the best of my ability, no question. I am there for her 110% but I need support so I can support my partner the best I can so I am hoping to gain help from other carers. If there is anything I can help you with please don't hesitate to message me. Keep strong. Breast cancer in the Bone can be treated these days. Love Dot13 x

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Re: Bone mets - please join in

 I’m also new I just found out Friday that I have met in my shoulder bone I’m meeting with my oncologist tomorrow morning to go over the biopsy find out how bad and what the treatment is going to be I can’t say how much I’m scared to not know how long I may have in this world I definitely need support going through this as much as possible thank you anyone who reaches out to talk to me 

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I’m 18 months in now and I felt better once I had a treatment plan in place. Thinking of you Anne 

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I was just diagnosed I’m meeting with my oncologist tomorrow to find out how bad and treatment options. I’m very scared as not knowing how long I have is horrible. Plus I hate needles 

the “not knowing “ is the worst 

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Re: Bone mets - please join in

Sorry I've been so quiet lately. I've had horrific stomach bug last week still recovering now barely been eating been on anti sickness last few days and going to carry on them. I've had horrific nausea was only sick on Wednesday but dunno about you lot I rather be sick than feel sick.

Anyway went oncologist before i was sick still felt rotten and my csncer markers went gone down so lethzole is working. And she asked me if I wanted to go back on precaulib I said no but she didn't mind as lethzole was working plus had horrible side effects. So I got my injection of denusomab

 

How has everyone found that dunno if it's delayed me getting over my sickness bug or not xxx