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Bone mets - please join in

Community Champion

Re: Bone mets - please join in

Yep. You long term ladies are an inspiration to us all. Hope I can "pay it forward" in the future to help others like you have helped us.

Zeledronic Acid infusion starts Wednesday, subject to Tuesday's dental check up!

x
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Re: Bone mets - please join in

Nicky, I guess you know how inspiring it is to hear how long you have secondary mets. Thanks.
🤗🤗💕💕🤗🤗
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Re: Bone mets - please join in

Hi Nicky, can I ask have you been on treatment throughout this time, and what are you on now? I’m almost two and a half years in and find posts like yours inspiring. I went from being told ‘we really don’t think there’s anything wrong with you but we’ll do a mammo and node biopsy anyway as your here’ (I had been saying I could feel something in my axilla for years, had previous mammo and ultrasound, all clear) to going back for the results a week later and being told I had cancer which had spread and was most likely stage 4. My mammo still didn’t show anything and my primary hasn’t been found but all tests confirm it is breast. (Yes, I definitely have cancer as I received a message saying how lucky I was that I didn’t). Started Letrozole/Denosumab and luckily have coped well and my follow up scan was good, but know there is a lifespan to the drugs and appreciate this regime is letting me off lightly! I have spoken with my Onc about what would happen next and was told there would be a couple of options, one being similar but not as easy to take, but didn’t elaborate and I left it at that. While I read stories of being on this type of treatment for longer, I’m also aware that around 3 years is the average, I do appreciate we’re all different and so many factors need to be considered when treatment plans are devised. Thanks, Kxx

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Hi FF

I have had all 3 of the different types of bone strengtheners. Firstly I was on pamidronate which is pretty old school and was an IV every 3 weeks. This was OK whilst I was having 3 weekly chemo, back in 2008, but became a drag going to the hospital every 3 weeks once the chemo had finished. I asked to go on to the oral form, which I did for several years until my bone mets spread. It is a pain in the butt and, as Janette has said, with lots of restrictions but for me it meant I could keep away from hospital for as long as possible (my other mets treatment at the time was anastrozole/Arimidex). It also caused a lot of wind - luckily of the burping variety but annoying and uncomfortable all the same. Most of us in the UK are now on Denosumab/Xgeva which is a subcutaneous injection given anything from 4 weekly to 6-8 weekly and in my experience of all 3 it is the one with the least side effects and the least impact on my life style. A quick minute or two on the ward then out. In fact I know of one lady in the UK is allowed to give it herself but the rest of us seem to have to have it administered by a nurse as they wont let it out of their sight as it’s quite expensive. It is the newest drug and therefore the most expensive however when you take into consideration the cost of setting up an IV, nurse time and bed/seat space on a ward I don’t expect the overall cost is any more than the IV drugs.

Hope this helps

Nicky x

ps glad all of us old timers have been able to reassure some of the newbies. I’m now coming up to my 10 anniversary of secondaries and although have had lots of different treatments over the years I’m still currently free of pain and carrying on doing as much as I can, a bit more tired maybe but that comes with age as well. Xx

 

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Re: Bone mets - please join in

Hi Funnyface, I can only speak from my experience with Denosumab but I would definitely advise getting any dental work done before starting, if you need any. I had to have some done after, followed all the guidelines but had some problems. I agree that the actual Denosumab injections are easy enough to have. Hope all goes well whichever one you have, Kxx

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Hi FF, when I was first dx with mets the bone strengther my onc started me on was Alendronic Acid, nightmare of a tablet because you have to take it around an hour before food or drink and stay upright for that period too!! As we all know if you’ve had a rough night with pain etc all you want in the morning is a nice cup of tea/coffee and relax a bit plus if you need to take painkillers alot are not good on an empty stomach!
Told my onc I wasn’t prepared to do this so was put on demosumab injection every 4 weeks (now every 6 weeks) soooo much easier, simple quick injection (like having the flu jab) some ladies get a few aches a day or so after, you need to get bloods done two or three days before hand to check all is well mainly your calcium levels.
Zometa infusions I can’t comment on as I’ve not had them but I gether from reading on most ladies who have been on and changed to denosumab say it’s much easier.
Hugs to all, keep those bones warm, Janette xxx
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Hi ladies I have some questions. I need to go on bone strengthening drugs bc of the osteoporosis in my back and one spot of cancer. My orthopedic surgeon thought infusion would be better than oral. I go talk to my oncologist on Monday. I just wondered if any of you have taken oral bone drugs and do they work as well as infusion. Also some of you are on injections. Why an injection instead of infusion? Then I saw there was a drug you can get only once a year. Also which drug is worse for ONJ? I need to go have a teeth cleaning and see if I need any dental work. Is it OK to get this done if you have just started the bone drugs or should I hold off and get that dental appointment first. I really need to get started so I don't break my back in another spot. I see some of you get pain from these drugs. Have any of you taken Claratin a few days ahead like you do with neulasta to reduce side effects? Just trying to get my thoughts in order. FF

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Great riversidedawn, no it definitely won't..,.we are all tugging together on the same side of this tug of war xx

 

Moijanx

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Re: Bone mets - please join in

Well done 🦋 glad you've got that sorted and hopefully feel a bit more settled.

Thanks to Bon, Linda, Moijan and Nicky you've all made me feel better about my diagnosis, prognosis and treatment plan.

Onc confirmed on the phone last week that mets are in spine, pubic bone and pelvis, he's already got me on zoladex and exemestane as ER+. Seeing him on Monday to discuss everything in more detail face to face then start zometa on Wednesday.

I have been thinking my days are numbered but you ladies have made me realise it won't get rid of me that easily!

Have a good weekend all x
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Thank you Nicky, I needed to hear that.
💕🤗🤗
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Great news Jellytot and a great way to start the New Year.  Hope you can relax now for a bit and have some treats planned - it's what has gotten me through many years of scans and treatments, a liitle trip here or there or a nice evening out - smething to look forward to.  Interestingly I don't normally notice having any aches from my denosumab injection but today I have felt a bit achey - but I did walk a few miles - so maybe I do suffer a bit as well.  Hoping your aches go away soon.

Buddyfan - I think we have all struggled with our secondary diagnosis as it so often comes completely out of the blue with no warnings of anything 'going wrong'.  It takes time to adjust and the only reason so many of us seem to cope is that we have been living with this diagnosis for many years.  Although this sounds dreadful it should give you hope that you can live for a long time with this condition, with limited impact on your life, rather that finding yourself sitting around waiting to die - which I expected to do!  As Bon has said having a bone strengthening injection (or IV or tablet) will help the bones to heal and strengthen and I think all of us are on one form or another - if you are not on one it would be worth asking your onc why not. The other treatment, as Bon has also said, will depend on what type of BC you have - whether it is hormone postive (when you may be prescribed hormonal treatment), or HER2 positive, when you will be prescribed a Herceptin based treatment.  You can also be prescribed chemotherapy either in IV or tablet form.  All of these are used to prevent the spread of mets and to contain the existing mets, or shrink them in the case of soft tissue mets. It does depend on your own situation and also what your oncologist prefers to use at this point in your diagnosis.  I have learnt on here, from the experiences of everyone with mets, that there isn't a standard route to take, although lots of us will have had similar treatments along the way.  If you are finding it difficult to cope it might be worth seeking professional help to discuss your worries, quite a few ladies have found this helps.

Wishing everyone a Happy New Year and hoping all treatments are kind to you but really horrible to the little uggers!

Nicky x

 

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Re: Bone mets - please join in

Hi Buddyfan

There are three types of treatment for different aspects of bone mets.

The first is chemo or hormone treatment to stop or slow down progression.

The second is radiotherapy if you have pain.

The third is a bone building and repairing drug, either denosumab which is administered by injection or a bisphosphonate such as zometa administered by infusion.

Together they will hopefully keep you going for a long time.

 

Bon xx

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Re: Bone mets - please join in

Hi Jellytot

I think some people do feel achey after denosumab, I think I feel aches just before and after but it's hard to tell because exemestane has a similar effect on me. Must be better though than trying to get Zometa into non existant veins.

 

I'm so glad you have had good news. You deserve some.

 

Bon xx

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Hi ladies,
Are there any tips you have for coping with, treating, reducing bone mets? I'm still not coping with the dx from last week of couple of bone mets in spine and iliac. I've also got to have further investigations on pancreas when chemo has finished.
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Morning jellytot

What a good start to the new year. Really pleased for you.

I tend to feel more tired and a bit more bone pain for a about week after having Denosumab injection Been on it now for about 4 years now.

Linda
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Hello Lovelies,

Happy New Year.

First onc appointment of 2018 yesterday, had the news that my tumour markers have halved! Also that my scans are stable - Hooray.

Then had my denosumab, feel a bit achey today - is this normal, I've only ever had one denosumab before, always zometa before that xx

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Thank you Moijan that’s very helpful. I am a little calmer having spoken to my chemo doctor today and found a PET scan will be done before the MDT now. I will let you know what I find out. Xx
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Thanks Riverside, you’re exactly right with your interpretation.
I decided to ring the team this morning and had my lovely chemo doctor call back. Thankfully he “gets” me and knows how anxious I am. He spoke to the breast surgeon after clinic and they’ve agreed to get me a PET scan booked early next week, before the MDT yay!
At least that’ll mean they have an up to date scan and a comparative. He did warn me I might not get a complete plan for future treatment immediately, but I can deal with that knowing that I’ve been listened to.
The nagging worked. Thank you, sending hugs back. Xx
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Hi Moijan

Pleased u managed to have your MRI scan done. Least you don't have to wait to long for results. Got fingers crossed treatment is working.

Linda
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Butterfly,

 

sadly, there are so many of us;  surgeons need to refresh the notes and he may well have have forgotten until he saw the notes.

 

i have several bone mets in pelvis, spine and ribs...never had a biopsy of those as it's assumed that the cause is from my bc. The other thing is that to my knowledge the treatment for bone mets tends to be that same for most of us...either denusomab subcutaneously or a biphosphonate such as zometa by I/v once a month.

 

'these drugs are pretty effective re helping heal over time....if you get put on one..arrange for a full dental check up and clean beforehand, as dental extractions can cause side effects once you are on these drugs.

 

radiotherapy is usually only given for pain, if required.

 

oh and the MDT do meet and suggest the ideal treatment plan, for each of us, so that might explain his caution - he likely wants to see that before proceeding...try not to worry.

 

best wishes and keep in touch,

 

Moijan💖💖💖

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Yes, well done Maria,

 

i was was booked for whole body MRI yesterday and suddenly recalled it was a head first event and for an hour...I hadn't slept much the night before as I kept thinking what if my fulvestrant hadn't worked? So I rang the oncs pa and they arranged a sedative for me as I was thinking lack of sleep might make me jittery!

 

actually after the sedative I got into the scanner and was lying there clutching my buzzer and I suddenly realised how very comfortable and contented I felt...snug as a bug in a rug..I think is the expression....! I actually enjoyed the experience.....

 

i knew I wasn't to move...and I fell asleep at one point and dreamt I should hand our cakes to people...my hand twitched which woke me up....so I made sure I stayed awake after that!

 

sadly my results have to wait till next Wednesday, but have managed to stand back until then xx

 

hugs

 

Moijan💚💚💚

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Re: Bone mets - please join in

Hi Maria

Well done you! Sometimes the bloomin scan experience is worse than the anticipation of results! Anyway it sounds like they have a plan in place for you which is great. When it comes to rads for secondaries, which is normally for bonesrather than other mets, it is a very short period of treatment, usually a few days to zap the area causing problems, and nothing like the length of time you have with rads after a primary. Although I’ve not had them myself for bone mets I’ve read, over the years, of many ladies having them. It seems there can be a flare up in the site itself for a few days (week or so?) afterwards but then things settle down and the pain, in most cases goes. As far as I know rads will actually kill the little uggers , It’s the only treatment that actually does kill the cancer cells but unfortunately we can’t have our whole body radiated as it would kill us!

Nicky x

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Hi butterfly, sorry you're all at sea. It's so difficult when plans change.

I'm a bit confused at where you are with treatment. If I understand it correctly you're still going through chemo (or just finished) for your primary diagnosis? And the surgery you're talking about is for that - i.e. lumpectomy or mastectomy depending on the effect of the chemo? Sorry if I've misunderstood.

From my experience it is normal for the MDT to discuss new patients and new developments- mine were discussing me today in advance of my onc appointment on Monday.

I'm new to the world of secondaries myself but am guessing that they need to consider the best course of treatment with each new development.

Remember, they are the experts, every patient is different and from what I've seen this is one time that we really are treated as individuals not just another body requiring the same old regime, so they have to consider what is the best treatment for you and in which order.

Have a chat with your BCN if you have one. And I would push for a scan if you've finished chemo as that will give them the update they need to decide the way forward. I've found it helps to nag them!

Sending hugs x
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Yay! Well done Maria,

I was so worried for you as you seemed so anxious, but so pleased that our comments helped and your oncologist looked after you. sounds like you're having private treatment with the spread of your results! I've had to wait nearly 2 weeks for mine and I think that was quicker that it would have been if I hadn't seen my team privately for the first 2 years of treatment (until husband changed jobs Smiley Sad !)

As the others have said, rads is really not difficult. The worst part is the travelling to and from the hospital for a very short treatment time, depending where you live of course! Mine was an hour each way for a 10 minute zap daily for 3 weeks. Fortunately the hospital provided transport - ask about this as it can be tiring.

Rest up. You're in good hands x
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I was told I had a bone met in my sternum in October after a repeat CT scan, but the onc wanted me to finish 8 rounds of chemo and repeat the scan before deciding on treatment/management. 

 

Saw the surgeon yesterday, who seemed surprised when I mentioned the spread to him, and asked if I’d had a biopsy. Has anyone had a bone biopsy? He wants a MDT to determine a plan BEFORE he does surgery and wouldn’t really discuss what surgery to do. And didn’t seem interested in booking a scan. Has the secondary diagnosis changed his opinion of what the best surgical option should be? 

 

Feel confused and all at sea. Thought I knew what the plan was, but not any more! Any advice? Thanks xx

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Hello Maria
Well you got through the fear of mri today so pat yourself on the back ..
Rads can be very effective on mets especially for pain relief ..I had rads 2 years ago on my hip ..felt a bit sick for a day or two but nothing else. In fact I asked oncologist for more rads to help with pain recently.
Hugs xxx
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Thanks FF, how are you feeling ?  Still resting I hope and without the awful pain xxx

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Maria, Glad your MRI experience was better than you expected! I had a tumor in my brohncus zapped. I had cohesiveness when swallowing bc of the area they were doing. There is no problem while getting it. Before hand you have to go and they get you set up exactly where they are going to zap you at. They tattoo small dots on you so they can line you up each time to get the exact area. FF

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Hi Ladies, thank you so much for all of your good wishes and hand holding.  I saw the onc in charge of the chemo ward before I had my scan and she gave me a relaxant and went and spoke to the radiologist to warn them I was nervous.  I did it, I managed the whole thing while listening to Ed Sheeran piped through the head phones.  Results today too,  the lesion on the spine is not the problem they thought but they found some mets up in my neck and at the base of my skull.  I have had terrible pain there but stupidly put it down to an old whiplash injury (stupid or wishful).  Anyway, it's steroids for me and then an appointment next week to arrange radiotherapy on the area concerned.   Is radiotherapy awful ? But most importantly can it kick the uggers into shape ?  You have all helped me so much last night and today - big huge hugs and thanks xxxx

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Oh I'm soooo lucky ...up to now never had a mri scan ...had ct and bone ones but somehow when I see them on screen feel a bit invaded that it's my insides they can see !!
Best of luck xxx
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Good luck today Marie Louis, I’ve only had one once and was dreading it but it wasn’t as bad as I thought. Yes it is noisy and a bit confined but I just kept my eyes closed and thought about an up and coming holiday I had booked!! I promise it wasn’t too bad.
Hugs Janette xxx
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Hi Maria Louise

I won’t lie, an MRI is a noisy scan that can take quite a while,  by that I mean 30-40 mins. If you hate confined spaces make sure they know, you may be able to tilt your head out so you can see outside of the ‘tube’. You will get a panic button that you can press if you need to but I suppose they still have to complete the scan. It is a very detailed scan so picks up much smaller lesions than say a CT does although doesn’t give you the dose of radiation that a CT does. I can’t remember where you mets are but if they now think you have bone mets there are still plenty of options for you, including other hormones such as anastrozole and letrozole (as well as fulvestrant if you can get it in a trial situation as NICE haven’t approved it). Also there is capecitabine, which is a tablet form of chemo and pretty do-able especially if the dose is tweaked to give few side effects. There are also the other IV chemistry which I’m sure you don’t want to have, none of us do, but can be quite do-able as well.

I hope you get some definite answers after your scan, and that it is not too scary for you. You know we are here to help so ask away once you know what your oncologist is suggesting.

Nicky x

 

ps editted when I saw how the corrective text had written 'fulvestrant' - which I have now corrected as it did not make any sense!

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Hi Maria Louise I'll be thinking of you today. I had a similar experience before Christmas. Had a call from onc to say he'd compared a recent ct scan with a previous one and wanted another scan just to make sure what he could see was more of my degenerative disc disease (long history of back trouble).

So he booked a ct and bone scan with contrast for a few days later. Then got another call to go for MRI as the results weren't conclusive! That scan wasn't too bad, it was trunk of body so not too long and my head stayed out of the scanner. I wore ear plugs in addition to the ear defenders they give you.

Saw him on 11th December when he advised tumour in one vertebrae but also something inconclusive in the pubic bone.

At this point he put me on zoladex and exemestane and booked bisphosphonate infusion for next week.

Referred to mount vernon cancer centre as their MRI scanner is more powerful. Onc gave me sedatives to take half hour before as this scan was whole body and lasted an hour. I had ear plugs and headphones again but they also played music of my choice, and had a mirror above my head angled to see a picture of a beautiful seascape. They talked to me every now and again to check I was ok and I had a panic button in my hand which I could press at anytime if I needed to stop.

It wasn't fun, but those things made it much easier to handle. Give them a quick call before you go this morning and see what coping mechanisms they have in place to reassure you.

My onc called me yesterday to confirm they have found it in vertebrae, pubic bone and sacrum. The treatment he started me on before Christmas is the right one and we'll discuss other options on Monday when I see him.

It's very scary to be told you have mets. I've only known for 6 weeks ago, but with the help of these lovely ladies on here I'm feeling more positive.

Your onc seems to be on the ball and that's what you need. Speedy action helps to alleviate the worry between scans and appointments.

Good luck today. Sending lots of positive vibes across the airwaves. Come back and tell us how you get on xx
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Hi Maria Louise, I just had an MRI scan of my back. I'm OK with any type of scan as long as it isn't hurting me! My MRI took an hour. I don't know why but first the scan was done without contrast and then with. We were trying to find why I was in so much pain, bc a x-Ray and CT said nothing wrong. They can give you sedation and they can play music. I shut my eyes and day dream and actually fell asleep. I think I've been conditioned to banging! Hubby was a carpenter and son played the drums. Try not to worry! It It is wonderful that they want to jump right on it! I don't know if you have had chemo, but I had less problems on chemo than the hormonal letrozole. Wishing you the best. FF

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Hi Bon, scan is tomorrow at 10.30, I will pull myself together, I need to get this spine met kicked into touch.  Thanks ladies so very much xxx

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Hi Maria Louise

Having to contemplate an MRI scan so soon after an alert about your spine must be hard. I think I'm right in saying that an MRI will give more detail and information than other kinds of scan and doesn't give you a dose of radiation so is worth the hassle. I've had 3 on my head. It is quite noisy. I find it best to shut my eyes and and try and breath smoothly and regularly and concentate on each breath. They do several different scans which last 2 or 3 minutes each and the noise varies with each one. I haven't found it too bad myself but everyone is different and responds differently to things.

Don't know when your scan is but if you tell us we'll be thinking about you.

Bon xx

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Thank you so much Mojan and Paula,  I know on a scale of things to worry about with this cancer rubbish a scan that will help me is quite low down on things to worry about but I am so scared.  Also fed up that it's spread !  Life on the hormones was so much easier and normal than the chemo option.  I have had tamoxifen and now on Exemestane so I am guessing there are no more hormone options.  Xx

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Hi Maria, 

 

i have had mris every w or 3 months for the past 4 years now.

 

initially, I was very worried and asked my gp for a sedative...you have to tell the radiologist in advance if you are planning to do this....anyway, I have found that it really is not that bad at all, yes it's noisy, but the earphones help. Also they can fit a mirror onto your chest while allows you to see the outside..if you want. Also, I found that for my liver and bone mets mris, my head wasn't very far into the scanner.

 

hope that helps

 

Moijan💚💚💚

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Hiya

Won't lie, an MRI was not my fave experience, just very, very loud and a bit confined. However they give you headphones for the noise and just keep your eyes firmly shut. all over in 15-20 minutes. I think, like a lot of things, the anticipation was worse than reality. Hey i got though it without crying so low down on my list of things I hate about having cancer.

WRT bone mets, I have several inc spine, plus organs and lymph nodes. I take Capecitabine chemo and Denusomab injections for my bones with Adcal tablets. Both very doable, no IV and they've kept me stable and symptom free for over 2 years. I believe bone mets are usually slow growing anyway.

Best of luck, put you big girl pants on (literally and figuratively) and I'm sure yu'll be fine.

Regards

Paula

 

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quick update .. I have an appt tomorrow morning with onc,   They want to give me an mri scan and I am terrified, I am so panicked by confined spaces.   Is an mri scan really bad, I just don't know what to expect.  Also can they treat mets on the spine ?  Xx

 

 

 

 

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Oh you poor love ...been through all that cc for nothing. But you have done the worst chemo first ..taxotere is the nasty one ..my friend has done 3 fec quite easy but on her 2nd tax and really struggling but says only one more tax to go and she's done ...
Maybe you can reschedule your holibob for later when u feel better .
Hugs xxx
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Hi Caroyn, I'm the oddity on these boards as I'm T-FEC rather than FEC-T. So, I did my T and FEC1 with the cap, 2 FEC to go, inc today's without cap. I think that means all my 4 cc chemo's were a waste of time. Oh well, not as annoying as the fact we could have gone on our big 3wk holiday now I'm not having radiotherapy. Sadly that's all been cancelled now. 😪😪
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Afternoon Maria

You must be attending an excellent hospital for them to you contact so quick. They may just be acting on the side of caution.

Take care.

Linda
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Maria
Hope oncologist is playing it safe to see you early with another scan and steroids ..its enough to drive you to drink with worry !!
But you are being we looked after by the sound of it.
Hugs xxx
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Hiya buddy fan
How many chemos to go? You might not be without hair too long ..if u r on fec chemo it's a sure bet it will go but if taxotere ..you might escape a big loss ? I had fec ..lost hair but then CMF and it started to grow again.
You are doing the sensible thing to give yourself every chance. .
Hugs xx
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I decided not to continue with the cold cap, a shame as it had been working really well. Having the dx of mets in the bone has really scared me. As OH said, to cap or not is something I can control. If I continued with the cap, there’s always the unknown that the mets might go to my skull or brain. It’s an unknown that I can’t control. Bye bye hair 😪💇😪
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Afternoon Ladies,

 

I am hoping someone can offer me some advice etc ....

 

I had a scan on Saturday and this afternoon have received a phone call from ONC to say that need me to go back to the hospital to have another scan as they have found something on my Spine,  half way down and they don't want to wait until my ONC appointment next week before starting to treat it.  They mentioned steroids ....  can anyone shed any light on this from experience ?  I have no pain.

 

Thank you for listening, I am feeling very frightened this afternoon and a bit shocked.

 

Maria x

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Hi buddyfan, sorry just checked in from work so you may be in the hot seat already!

I would ask your onc and BCN for their advice - some fully support cold capping whilst others don't.

Hope you come to the right decision for you xx
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Happy New Year! It's been so cold here for like 2 weeks. We are at 8°F .....32°F is freezing. 

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Hello buddy fan
Welcome ..I have not used the cold cap but lots of secondary ladies here have and hopefully will pop along with some advice ..I think you will be worrying it will stop chemo going to scalp maybe ?
Personally speaking ...I think having hair helps you feel more normal but if you do loose it ...it does grow again !!
Sorry will let the more experienced ladies add their advice ...
Hugs xx