Hello ladies …happy new year but I thought it would be nice to light a candle to all the brave ladies we have lost this year .
Happy New Year ladies, may it be a happy and healthy one!
Hugs Janette xx
Happy new year ladies…a time to remember special loved ones we’ve lostxx
Happy New year to everyone.
Carolyn yes we have lost so many lovely ladies last year. Hopefully that is it now for many years to come
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
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
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
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
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
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
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
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
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
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
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
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 
!)
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
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
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???
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
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