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FurryBoots
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27-12-2012
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19-01-2015
08:14
They do SIRT at The Christie in Manchester. It's private and cost between £25 and £30K
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19-10-2014
06:29
Hi I'm Caz and I'm 42. I'll be going down on the Thursday from Manchester. Jane and Janette, the BCC montly meet-ups at the Buddist Centre in town are fab. There are usually about 6-8 people there, including two "youngsters"! x
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23-08-2014
10:51
I suffered badly from peripheral neuropathy during Taxol, and now I'm on Eribulin it's got even worse, I can just about walk. My oncologist says Eribulin has a much less effect on the nerves than taxol and any neuropathy will be from the taxol, but it is definately worse!! Has anyone else expereiced neuropthy while on Eribulin?
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09-03-2014
06:49
Hi ladies, I've just bought a SlenderTone Abs machine to ease myself back into exercising. I love it! However, with nothing much to do on a Sunday I decided to read the manual and it says, 'Do not use if you have cancer' and 'Do not use over a site where drugs are administered by injection'. Well, I have cancer (liver and bones), and I have monthly Zolodex injected into my belly. I don't know whether to keep using it now!! Is anyone else using one? FBx
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09-03-2014
06:41
I can't have RFA as my tumors aren't stable anymore 😞 I has a consultation re SIRT, which can be given when tumors are growing. It's not available on the NHS and looking at around 26-30k privately. Unlike RFA it's unlikely to completely destroy the tumors, data is limited but the consultant said something like 50% will have at least 50% shrinkage and 12-16 extra months life - vast majority of patients have had lots of chemo and it's a last chance treatment (most patients have bowel cancer spread to the liver). They give chemo along side SIRT too. Not sure what I'm going to do. Speaking to my oncologist in a week and would like to check out other radiotherapy technique available x
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11-01-2014
10:45
I'm white with freckles and my God my freckles are out of control with chemo, I've never had so many freckles in my life. It's got a good look! My face is one big freckle! So yeah, I think chemo certainly messes with our melanin production xx
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27-12-2013
02:12
Thanks for the links Mrsblue. Yes, it's SIRT. I've just never heard of anyone having it. I'm going to go private for RFA, but wanted to check out experiences of SIRT first. My onc won't refer me on the NHS as treatment is working - my tumours are shrinking - and they will only do an NHS referral if the treatment stops working. I really don't want to wait until more tumours grow (too many for RFA!)! Cx
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27-12-2013
09:22
Hi ladies, has anyone had radioactive beads for liver mets? I have 8 small liver tumours, all less than 2cms and am considering RFA. My hospital doesn't do RFA, they do this bead thing instead. However, it's mainly been used on people with bowel cancer that has spread to the liver so they don't have much data on SBC success. Has anyone had this procedure? Many thanks, Cx
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26-09-2013
08:54
Cancer treatment is allowing people to live longer, active, normal lives. But in recent months two new drugs have been refused recommendation by the National Institute for Clinical Excellence (NICE) on cost grounds. These drugs are innovative, proven effective, and capable of helping women to live for years rather than months. The UK has fallen behind the rest of Europe in providing effective treatments which is a real worry for all of us. Please sign this petition. Once signed, check your email account as you’ll need to click a link to confirm. Please forward it on to your friends. We need 100’000 signatures. Thanks ladies x http://epetitions.direct.gov.uk/petitions/55198
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19-09-2013
10:53
Hi Philippa, Please make an appointment with your GP ASAP. Don't take any chances with your breasts and cancer. Likely it's noting, but there is always a chance of cancer. Although extremely rare it's not unheard of at your age. I was 40 when diagnosed. I couldn't feel a lump, just a slight thickening under my boob and by boob had lifted slightly. Due to your young age they'll give you an ultrasound rather than a mamorgram. Make sure you mention your family history too. FB x
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18-09-2013
04:50
Thanks for all your info ladies. Thanks to MrsBlue's recommended research article I found is that the only significant difference is an increase in Median N-terminal telopeptide concentration (bone turnover) in the 12 weekly group. This isn't good apparently! The Christie doesn't test for it as routine. However, I'm going to be ask to be tested for it if they switch me to 12 weekly Zometa. Zometa stays in the body for a long time, but I don't feel having just 6 months of Zometa before switching to a 12 weekly plan is enough (bit what do I know!). However, I don't want to take a drug needlessly either. So I think the test is a good compromise. x
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04-09-2013
10:15
Thanks ladies, this is very helpful. Thanks for the article MrsBlue, I've been searching on the internet for any research to no avail so this is just what I was looking for. Thanks you FB xx
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30-08-2013
10:49
Hi Ladies,after 6 monthly doses of Zometa I've been told I will now be having it quarterly. I'm a bit worried about this as I have mets throughout my spine and ribs. My BCN said all hospitals are different (I'm at The Christie in Manchester). I haven't had the chance to discuss this with my oncologist yet. Does anyone know the reasoning behind this? I believe there was some research done showing monthly and quarterly administration gave similar results but I don't know a lot about it. All other bone mets ladies I know are having it monthly. I thought the general practice was 18 months monthly and then switch to quarterly. Cheers, FB x
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23-08-2013
06:16
Hi LG1, so sorry to hear this. It's utterly devastating when you're first diagnosed, and to be pregnant it must be a nightmare. There are a few lades on the Younger breast Cancer Network (YBCN) on facebook who have had chemo during pregnancy. Search the public page Younger Breast Cancer Network (UK) and email the admin asking to join the private group (only private group members will see your posts). Big hugs xx
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20-06-2013
10:32
Hi Katherine, I totally understand your shock. I too was diagonised at the start of the year with BC and spread to liver and bones... eight tumors on the liver. It's just so shocking, from feeling/being really well to suddenly being told you're seriously ill. I kept saying "are you sure, but I feel great!". Well, dispite my first three chemos not working, and having just finished the first round of my new chemo I still feel realy well. I'm working and carrying on as normal... what else can you do! I'm not going to spred the rest of my life fearing death, I'm just going to enjoy the life I have, which is a very good one... we're not dying, we're living with cancer. xxx
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15-06-2013
07:33
Thanks Lollypop59,
It was a worrying time but thankfully it flew by. I hate waiting and have horrible visions of spread. I since learnt that another lady had to wait 6 weeks to start the trial, she was in a terrbile way, could hardly walk, but luckily for her the chemo and drugs have worked wonders. I hope your new chemo is going well... and enjoy your holiday 🙂 xxx
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18-05-2013
06:51
Hi Mel and Lucky Girl,
I've got bone (and liver) mets too, I'm 41. You can live for decades with bone mets, it's very treatable for many people.
Younger Breast Cancer Network UK (YBCN) is a private face book group for younger ladies (most are in their 30s and early/mid 40s) with BC and they also have a group for younger ladies with mets. It's been a godsend to me. Search the group name (public page) and message the admministrator, letting her know you have mets. She will add you to the private group (only other group member will be able to see your posts). We're very chatty!
For older ladies out there there is Chat Girls.
Cx
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14-05-2013
06:00
Hi all, I have a dilemma and I don't know what to do and panicking a bit!
After a primary and secondary diagnosis (bone and liver) in Feb, I've had three cycles of EC and found out last week that it didn't work and the tumours have grown quite a bit. New plan was to put me on weekly Tax. However, I've now signed up for a drug trail (Tax and a new drug) but I am worried about the delay for pre- screening. I was due to have chemo yesterday (had I not agreed to the trail), but now due to waiting for pre-screening tests my chemo will be at best 2 weeks delayed, but possibly 3 weeks. Will this delay have any effect on my cancer???? Since Feb I have got a new tumour on my spine and two new liver tumours (in the space of 10 weeks). 2-3 weeks may not sound like a lot but my cancer seems to be very aggressive. I don’t know whether to ditch the trial and see if I can get my chemo ASAP or wait another couple of weeks. I hate waiting without treatment, I can’t relax and just imagine the cancer spreading, which it will be doing! xxx
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18-04-2013
09:03
Hahaha you're a right saucy mare! It's just a regular buff. I'll think I'll have ganders on Amazon for some more. I love 'em xxx
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18-04-2013
04:43
Hi all, I thought I'd add myself to the liver and bone mets club too. I was dx with BC in Dec and liver and bone mets a couple of months later. I'm on EC chemo and due to start bone strenghtener drugs next week - God only know why my onc has waited so long to give me the drugs, I've got a broken rib and 6 discs in my spine affected. I'm not in much pain suprisingly and coping really well emotionally. Work help a lot, plus my wonderful OH, family and frineds. Love to all xx
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