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tillybob
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since
01-05-2012
391
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27-11-2014
12:17
Thanks for your kind wishes girls, hospital just phoned and Mri is on Sunday morning , I think the card is a good idea too . I am having many of the symptoms mentioned , Scared but re assured that something is being done quickly xx
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26-11-2014
06:07
Hi girls just thought I would let you know what happened today, I went for my Herceptin treatment and mentioned to nurse that I had been getting pain again and also last night when I was coughing I felt a sort of electric shock going down my legs and into my feet, She asked for a doctor to come and see me, he is concerned about cord compression, so is getting an urgent Mri sorted, at this point he wanted to admit me to the ward but there were no beds available , so I am allowed home with strict instruction on what to look out for and to go straight back if I am worried, He feels it is more likely that it is nerve related and I may need further Rads , I am at least getting sorted now so Thanks for your kind messages. I will keep you updated. xx Jean xx
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22-11-2014
01:59
Thanks girls I will ring on Monday , I am not due to see Onc until end of January and I don't want to wait that long, Had an MRI to check for spinal compression and all was ok , but things can change quickly, I will let you know what happens next xx Jean xx
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22-11-2014
11:02
Hi Ladies, I wonder if any of you could give me some advise, to cut a long story short, dx Feb 2011 with inflammatory Bc , secs found in lungs and T4 of spine, after usual treatments lungs now clear and spine was showing damage due to cancer but no evidence of active cancer, In April of this year i started with increasing pain around the area in spine, eventually after bone scans it was shown that the bone in spine had crumbled onto nerves so i had 5 rads to the area in July, although the pain never went away it was much improved , however the pain is returning , at the moment i am managing the pain through my GP , my issue is, do I go back to my Onc or carry on with pain meds ? My onc said the damage in the bone would probably never heal , can i have more rads or is it as I suspect a one off treatment, Really don't want to experience the terrible pain i had before. I had a CT scan after Rads and Onc was happy nothing sinister there, but it is always a worry.Thanks ladies.xx
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19-04-2014
03:20
Hi Rickie, sorry you have found yourselves in this awful position, most ladies are give antibiotics at first, but if it is IBC they don't make any difference as it is not an infection, hopefully if the swelling has gone down a little it could be mastitis, however the only way to rule out IBC is by biopsys, Please let us know how she is getting on
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15-09-2013
06:11
Hi I have been on Denosumab since March, before that I was on Zometa but the SE s were bad, I had a met deposit on T5 of spine, my recent bone scan( 1 year since last one)has shown the scarring had changed shape, not grown bigger, just different shape, I asked Onc if the bone treatments could have healed the scarring , she would not commit herself saying it won't have done any harm, my question is ,have any of you had similar ? can scarring be healed ?
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26-06-2013
07:35
Fingers crossed the anti Bs work for you and you are more comfortable, it does sound like it could be infection BUT you should still get tha breast clinic to have a look just in case. xx
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25-06-2013
08:37
Hi Paula, sorry you find yourself here , hope you are well, in answer to your question I think there is a high chance of recurrence with IBC because of the skin involvement, I am 2years and 4 months since diagnosis and so far I have not had a recurrence, I am stage 4 but currently NED, we have a little group of ladies with IBC on facebook if your interested let me know and I will send details,
Jean xx
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20-06-2013
11:07
I was dx with IBC 2 years ago, your symptoms sound a little like IBC but until you have seen a specialist breast clinic doctor don't assume it is, it could be mastitis, I never had nausia, Please don't google , all you'll do is scare yourself, most info is out of date and misleading, Please let us know what happens and we can help you if needed, hopefully it will not be anything serious.
Jean
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20-06-2013
10:55
Hi Roo50, sorry that you find yourself here , there are a few of IBC girls but don't come on here very often, I am 2 years since Dx and currently NED, I will send you a private message.
Jean
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16-06-2013
01:08
Hi Lisa, sorry you find yourself with this worry but you have done the right thing seeking help, I was pretty much the same as you in that I had breast swelling and thickening of the skin , it had the look of orange peel , anti b's made no difference, I was diagnosed soon after with IBC and things moved quickly with regard to treatment, you can only wait and see what the breast clinic say, they will probably do Biopsys and ultra sound , really hope it's nothing sinister don't let them fob you off , there is NO lump with IBC and it often does not show up on mammograms, only biopsys give relable answers. Good Luck and let us know how you get on. Sending you a hug as you'll probably be needing one xx
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13-04-2013
10:44
Jane I am sorry you find yourself here , once you get a treatment plan things do get easier, I am 2 years since Dx, I was stage 4 from beginning but my treatment worked very well and I am currently NED , I felt just as you did at the start , it's very normal , Really hope your appointments go well and you come out feeling a little more re assured.
I will send you a private message.
Jean x
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13-04-2013
10:37
Sophie you must go back to your Gp and ask for referal to breast clinic, the earlier this is sorted the better, IBC is tricky to Dx initially and biopsys sre usually the most reliable way.It did not show up on ultrasound or mammo for me.
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23-02-2013
09:35
Hi Fightingit, good to hear your doing so well and great news on results !!
You will feel better now treatment has begun, it's like you are taking control and fighting back .
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19-02-2013
03:02
Hi Nicky08
I am starting Denosumab in March, my onc had to get funding for it, I have been on Zometa but it was making me ill, i would welcome any info re SEs etc....
Jean
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14-02-2013
10:04
Hi Blondie, I am so happy to read posts like yours, I am on long term herceptin, only had 33, so a little way behind you ! I am having a much needed holiday next month, had to organise it round treatments so the injection sounds great. As for coming off Herceptin in the future I'm not sure if I would be brave enough to risk it , Thanks for sharing your good news it really does help xx
Jean
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21-01-2013
09:41
Hi I have had Thyroid problems for 36 years mine was over active whilst pregnant, so was put on carbimazole for several years, it did stabilise for maybe 5 years then it went under active 20 years ago, I am currently on 200 mcg of thyroxine , have been on this dose for 6 years, I do wonder if theres a link to Bc as this has been mentioned before.
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18-01-2013
03:42
I think you mean Zalendronic acid or Zometa and calcichew , I have been on Zometa , it's a bone strenghthener, it's ok, with a few SEs with 1st couple of infusions, Flu like symptoms . The calcichew is simply calcium and vit d , which is always given with Zometa. It's not a chemo drug and it works very well, don't be scared about it.
Jean
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