Hi Buffy.
Yes I have a blue badge etc. Don’t know what I’d do without it.
X Sarah
Hi Sue and Mel
Thank you for welcoming me into the group and for explaining treatments to me.
Sue how do you take slow release morphine? My GP has put me on the 8 paracetamol daily to give a cumilitive affect. I am glad you are not having side effects and that you are pain free. Thank you for replying to me.
Mel i agree it is hard getting used to the fatigue. Very frustrating! I hope your chemo regime is bearable and good luck for your scan.
If anyone else can explain the meaning of tumour markers and my increase from 125 to 147 (is this high?) i would be most grateful.
Wishing everyone a lovely day
Caron
Hi Caron
Please feel free to call our helpliners to talk through the queries you have about tumour markers, lines are open 9-5 today (weekdays 9-5 and Sat 10-2) on 0808 800 6000
Take care
Lucy
It saddens me that every time I don’t look for a few days on this forum then come back there are always new members. Welcome to you all. I hope you take comfort and inspiration from all the wonderful women who offer support and share their experiences.
I am currently waiting on new scans as radiotherapy to L5 didn’t work but pain has increased, has anyone else had radio which didn’t work? Also has anyone else experienced a strange buzzing, almost like a vibration in legs? especially when i go to bed at night, or sit down after standing for while. Pain killers help with the pain but don’t make a difference to that. anyone know of anything else i could try for that?
Pumpkin x
Pumpkin can’t give you a lot of help re the vibrations, but I remember someone else having the same thing,I think it was nerve related and I think it might be a good idea to phone your bcn or your team.I had rads to spine and it was quite a time before I felt any benefit.
Hope scans give some idea as to why pain has increased.I have increased pain since progression being reported in December and now take gabapentin/slow release for the pain.I have exstreme pain when I put any weight on my right leg, and like you painkillers do not help.Having mri tomorrow which will hopefully shed some light.
L xx
Thanks Lucinda, i’ve told them about it before but they didn’t say much, it does fell like the nerves are buzzing or vibrating, will mention it again when i go back for scan results. I’m sure i remember someone else on the forum talking about it but can’t remember who or find the post.
How long was it befor you felt benefit from radio? it’s been six weeks now for me and my bc nurse kind of gave me the impression that if it hasn’t made a difference by now it probably wont.
other people on the forum seem to be on painkillers and gabapenton, i wonder if that might help.
good luck with your scans tomorrow, i hope it’s good news, keep us posted.
Pumpkin x
Pumpkin, when I had rads to my lower back I did find that the pain subsided very quickly - within the first month. But when I told my oncologist he did say that the rads go on working for some time so it can take up to a couple of months. Whilst I did not have the sensation you describe I did have strange feeling in my feet - numbness and tingling. I was told that this was probably nerves because the rads can cause swelling and that hopefully the position would improve, which it did. I now only have an issue if my feet get very cold. Hopefully you will soon feel a benefit and the side effects you describe subside. If not though I would contact your nurse / oncologist again because I think it was Amysmum (Sue) who posts on here who had spinal compression after rads. Apologies if I have remembered the wrong person!
Best wishes to everybody else, I do hope that any results you are waiting for are good news and that everybody has a nice evening. It is so nice to see the nights staying lighter, a certain reminder that Spring is just round the corner.
Jackie x
Hello all,
I’m just wondering if anyone who’s having Zometa infusions, or any other bone strengthener for that matter, has noticed any of their bones becoming noticeably thicker, almost as if they’re swollen, after having their dose.
I had my latest infusion last Wednesday and noticed at the weekend that one side of my collar bone and down my sternum on the same side are visibly thicker with swelling and a little moveable lump, too… I’ve contacted the trials unit and am waiting for them to get back to me with an appt. *sigh*
Good luck to everyone waiting for results.
Hi Angelfalls, Ive not noticed any thickening on zometa, I was having it at the same time as chemo and ached because of that! I have been on zometa since July, how long have you been on it for? Sorry I cant be of any help…I shall keep an eye out now.
Mel
Pumpkin - I had a weird sort of vibrating feeling round my middle last year. It was caused by the tumour and bone pressing on a nerve but because it was in my spine at T9 it affected the nerve that radiates from the spine round to the front just below the ribcage. It went numb too. I had a procedure known as a nerve block which got rid of that pain but I then had deferred nerve pain from where they had to touch the nerve to make sure it was in the right place. That was just before Xmas. My pain was getting worse so I sked for scans and got them. It showed progression in quite a few bones so they changed my drugs and told me to get Fentanyl patches from the GP. I put the first patch on last week and by the weekend the pain had completely gone - yay!! I assume a lot of the relief is from the patches but it could also be due to the new drugs as I started them last Thursday after they had been approved by the Cancer Drugs Fund. I now have denosumab injection instead of zometa infusion and then the new combo of everolimus and exemestane instead of arimidex. I hope this may have been of some help and if you have any questions, just ask!
Liz x
Pumpkin, I had radiotherapy for pain due to progression in the pelvis. I had already had a hip replacement and rads for mets in the hip and rads for mets in L4. So this was my third lot of rads. It didn’t seem to help with the pain which was not just in the hip itself but also down the front of my leg with buzzing in the shin and pain in the ankle. My hospice at home nurse came to my rescue sorting out pain relief, a combination of slow release morphine and paracetamol, which kept it under control. Meanwhile my oncologist moved me from exemestane to letrozole. After about 6 weeks my nurse suggested moving to patches for pain but before doing so to trial how I got on without painkillers. She must have had instinct about it- when I dropped the morphine I found I was OK so I dropped the paracetamol and I was still OK. Whether it was the rads, the change of hormone treatment or the power of fairy dust 
the pain was much better. I still sometimes get a buzzing sensation in my shin and have to take the occasional paracetamol. The pain seems to come back a bit from time to time. I was told it was nerve pain and the onc was talking about using gabapentin as it is effective for nerve pain. The buzz seems to be a feature of nerve pain.
Don’t despair. In my case it took ages for the rads to work (if that’s what did work in the end!). It was probably the best part of 3 months in all. And if the rads don’t work there are very effective painkillers out there.
Thanks for all the replies ladies, I’ll see what news this lot of scans brings, getting CT, bone scan and mri of spine so should get a pretty definitive picture from them. I have a feeling that there is going to be progression. My onc was talking about the possibility of vertoplasty if there has been further destruction of the L5, does anyone know of anyone who has had this?
Also has anyone had, or know of anyone who has had rads to the same area twice? there seems to be some difference of opinions between oncs about this. My onc said no but i’m sure one of her registrars i saw ages ago said it could be done as long as it was two years since last lot.
Some of you mention about getting advice about pain control from sources other than GP, how do you go about that?
Pumpkin
Pumpkin - my onc will do rads to the same place more than once as long as there is at least 18 months between the sessions. So far I have had pain meds from hospital but this afternoon I am having a visit from a Macmillan nurse just for a chat. It was offered the last time I was at hospital as there was a pain specialist sitting in the appointment. The nurse rang me as she is attached to the GP practice but it is the first time in over 5 years I have had one offered. She said she is a pain and side effect management specialist so we shall see…Even though I don’t feel I need her at the mo, she may be a useful way of getting seen quicker at GP surgery or having questions answered sooner!
Liz
Hi Caron
I am fairly new too! Was diagnosed in Dec 2012 with primary then bone mets in January. I am taking Denosumab for my bones. It is relatively new - I was supposed to have zometa but got changed. So far I have had few side effects, mainly feel tired more than anything else. It’s also done by injection rather than infusion which is handy & quick.
Like you, I have been inspired by the posts on this thread. I am not alone in this battle! Good luck with your treatments.
Helen
Thanks for that Lizcat, hope you get on well with your new treatment and it does the job. Interesting to see quite a few people on everolimus. Wonder if it will ever get approved by NICE or if it will always be through funding.
Pumpkin
Hello ladies,
I haven’t been on this site for a while so hello to everyone who is new and sorry you have had to join the club nobody wants to join.
I hope you find as much help as I have.
Everythings rumbling along. I’m on Arimidex at the moment and have been on Zometa almost since I was first DX. Angelfalls I would just say I don’t get bone swelling but my ONC did say I had very dense bones because of the treatment.
This month, whilst I was having my infusion I was slightly confused when a nurse said, “why are you having this?”. I explained I had BC and bone mets. Her asking me why I was on it threw me a bit, I just do and take what the ONC tells me but then you start to think, probably wrongly, perhaps I don’t have mets at all. Up and down, up and down, sometimes I hate this disease so very much.
Much love
Claire
Hi Helen
Thankyou and good luck with your treatments too! The injection does sound easier than a Zometa infusion especially as my veins have taken a battering from chemo. Are you or have you started chemo or surgery? You havent had much time to get your head around your diagnosis really so the lovely knowledgeable ladies on this site are invaluable to us for information and support.
I am so pleased to have found this facility and hope that i can support others in return.
Take care
Caron
Bumping for chicken.
Hi to everyone. I’ve just had my first week on everolimus/exemestane, had the denosumab jab last week, the fentanyl patches are brilliant and I now have no pain but am very tired, I think due to the combination of all the new drugs and their side effects. Had a visit from a Macmillan nurse yesterday - first time I’ve ever had one in over 5 yrs. She has ordered some mouth washes and sprays for the ulcers and dry mouth I’ve had with the new drugs and my lymphoedema nurse has ordered 2 new sleeves with mittens as my arm has swelled a bit down my forearm and hand which I’ve never had before. Think I’d better leave the NHS budgets to recover for a bit now…
Liz x
Hi everyone,
Is it ok if I join in?? I have secondary breast cancer which has spread to my lungs and also mets on my spine and on my sternum. I finished chemo at the end of January but am on Zometa and Herceptin indefinately.
The pain in my back had gone after the 3rd lot of chemo but has now come back with a vengeance. I had a PET scan last week and get results on Monday which Im dreading, ive just got a bad feeling about it!
Has anyone here lost their finger and toe nails??? mine are coming off and my hands are so sore, any replies would be great. Hope everyone is ‘up’ today?? the suns shining which always makes me feel better!!!
Big hugs,
Lorna x
Hi Lorna, welcome…this forum is great for support and asking those questions. I finished chemo in the middle of feb as my scans showed my bone mets had spread in Oct…the scans after 3rd cycles showed stability. I had scans yesterday after, results at my next meeting with consultant on 22nd March. So scan anxiety for a while. Am on zometa and then I think letrozole as am oestrogen receptive…although tamoxifen didnt work for me. My side effects from chemo have been nausea, fatigue/extreme tiredness/ achy veins/ hair loss although it started to grow after round 4! I noticed hairs falling out today…its growing back black and white! Which chemo were you on…I was having EC, I have heard that tax causes problems with nails…am sure someone will be along soon who has had that side effect. Sounds painful.
No sunshine here…I am in South London. Am up but chilling on sofa…still am very tired.
Kind regards
Mel