62274members
327837posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Bone mets - please join in

19,362 REPLIES 19,362
Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

 

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

 

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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. 

 

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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. 🍀😘

Member

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Community Champion

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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

 

 

 

 

  

Community Champion

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

Community Champion

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

Member

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 

Member

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

Member

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

Member

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

Member

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 

Member

Re: Bone mets - please join in

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

Member

Re: Bone mets - please join in

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 

Member

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

Member

Re: Bone mets - please join in

Don't know if this helps, but my gut reacted terribly to Adcal..... so now I take calcium, vitamin d and magnesium as seperate supplements to give the correct daily doses. This does not upset my gut at all, and blood tests show I'm getting enough.

I'm also on denusomab, letrozole and palbociclib and it is working very well, all mets reducing dramatically, so I'm very fortunate. The real problem is the fatigue which I am struggling with and finding deeply frustrating - any tips????

Grumpy

Member

Re: Bone mets - please join in

Jackie, I am sorry that you had to join this group but you have come to the right place. 

I was diagnoses with bone met in dec 2011, almost 4 years after my primary diagnosis.

for 6 years I was stable, the unfortunately the treatment I was then stopped working, I since had to change treatments a couple of times. I don’t know what treatment you will be on as it depends on your type of cancer but I am sure you will likely have a few sessions of radiotherapy for the pain (It might get worse before it gets better but don’t worry, it will eventually get better. You are also likely to get a bone strengthener, there are many out there, some are tablets, some injections or infusion. 

I am sure you must be worries, and I know if I tell you not to worry, you will find it difficult, but it is not a death sentence. Secondary Breast cancer is managed much better than it used to be. Take care. Xx. 

Community Champion

Re: Bone mets - please join in

Jackie, I'm sorry you have this shock and we all understand. I do not have bone mets, I have lung mets. The good pert of it coming back after such a long time is that it is often a slow growing cancer. Let's hope yours is. I had my breast cancer at 41 and it took 10 years for my Mets to show up. I turn 65 in Oct. Soon will be 14 years. Lol it's been so long I was adding wrong and thought this was going to be 15! Nope 14! I hope some bone mets ladies come along soon to give you some advice. I just wanted to welcome you. FF

Member

Re: Bone mets - please join in

Hello - I'm new!! Had MRI this morning, and by this afternoon confirmation of bone mets in right femur. I've been walking either using a stick or crutches since June, unable to bear weight on that leg. Initial diagnosis was Dec 2002 when I had WLE, chemo, rads and ovaries removed at age 32. I'm totally in shock that it's back after all these years, and completely out of the loop on treatments etc.

i have a CT booked for Monday afternoon (can't eat for 4 hours before - what's that got to do with my bones....) and appointment with orthopaedic specialist Wednesday morning. No word from breast cancer team or oncology yet. What questions would you advise I ask? I'm feeling stunned right now so any advice would be great.

Jackie x

Member

Re: Bone mets - please join in

Hi Katzygirl.Gosh you are having a tough time , I remember getting shingles when I went through cancer treatment first time round .Its so painful, and the little ulcers on your lip really can get you down .So sorry for your loss  at this awful time .Of course I will meet up with you , when you are up to it .I believe we are on same treatment, so hang in there , side effects will improve Take Care stay strong xxx

Member

Re: Bone mets - please join in

Hi Hannah, hope you are well. I’m not sure which treatment you are on but know you live in my home town so under same team. I’m now 3 weeks into treatment and really struggling with diarrhea that comes on so quickly it’s getting really debilitating. 

2 days in I had a pain in my side that turned out to be shingles so 5 tablets a day for a week which also has the side effect of diarrhea. Was hoping last week would be better as they had finished but I think it was worse.  I have now had 3 weeks off of my beloved job and wondering if it will ever settle. I now have a bottom lip covered in little ulcers and itchy spots on my upper legs. 

I did get a tip from another site to take 

Abemaciclib with high fat foods like peanut butter, I was hoping this was the breakthrough but not so far, I hate peanut butter too lol. My Mum died on Tuesday so have added stress of funeral arrangements and a fall out with my Sister so maybe I can’t expect to pick up yet. 

Would love to meet up in a few weeks when I will hopefully get my positivity and my stomach back. I hope you continue to do well and sorry for the moan. 😆xx

Member

Re: Bone mets - please join in

I was unfortunately taken off Pablo because side effects they were looking at reducing dose but this month I'm. Having rest month I'm. Due start. Bone drug too and I went into stage four too my. Counters have gone down mjnd hut dint. Know. Radiotherapy or lethzole xxx

Member

Re: Bone mets - please join in

Hi Daylightdancer

 

i am scanned every 3 months. Went straight in at stage 4 just over 2 and a half years ago so can only be treated not cured but the palbo letrozole combo seems to be working. There are quite a few of us on this so hopefully I can give some hope to others x

Member

Re: Bone mets - please join in

Wendy I'm so. Pleased for you I was diagnosed in June how often.dkd you have scans after diagnosis xxx

Member

Re: Bone mets - please join in

Hi All

 

Yesterday I got my scan results and good news in that I am stable so still on Palbo and letrozole and now on Month 22. I really couldn’t believe it so long may it continue for us all. 

 

Wendy

Member

Re: Bone mets - please join in

Hhhmmn that’s news to me too, thank you for that I will ask my onc about this at my next appointment.

janette x

Member

Re: Bone mets - please join in

I didnt know there was two types either of bone mets xx

Member

Re: Bone mets - please join in


@ElaineD wrote:

There are 2 different types of bone mets (lytic+sclerotic-apologies if you already know this). It could be you have both types (I do), which would explain this apparent discrepancy.


Sorry for jumping in, but I just seen your post and I have bone mets and didn't know there were 2 different types. Do you know enough about them to explain it to me. Thank you Shelly.xx

Member

Re: Bone mets - please join in

Hi Katzygirl Good Luck with treatment, fingers crossed it goes well .Am here if you need to chat x

Member

Re: Bone mets - please join in

So went to consultant last Wednesday my cancer gone down from 200nro 150

 

However my calcium still not high enough for bone drug which can't spell what's everyone's effects on this drug I'm worried about the tooth ache and jaw pain. She wants me have well. Month so no precibib either but I'm slowly refusing steriods 1mg I was on 8nad one pont, tell you this much dunno if the lethzole or what I'm stiff as anything getting up xxx

Member

Re: Bone mets - please join in

Hi Hannah it’s good to have contact

with others in the same town going through treatment.  Glad yours is going well apart from the SE’s

our biggest dread! Tomorrow’s the start for me except for 4.5 years on Tamoxifen and 1.5 on Letrozole unfortunately I guess the later didn’t work so I find myself here. Perhaps we can have a meet up when I have settled in to my treatment. Hope you continue to do well xx

Member

Re: Bone mets - please join in

Hi Katzygirl I too live in Colchester.I was first diagnosed with Breast cancer way back in 1999 , had chemotherapy and radiotherapy, and thought I had seen the last of it .Un fortunately it decided to return last year , was devastating. Am in a treatment plan which is going ok , side effects not great , but a small price to pay , if it keeps it under control x