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Mitch23
Member
since
21-10-2014
102
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4
Hugs
27-10-2014
01:52
Hi all Hope everyone is well! On the subject of the tablets - when I've finished them my daughter (11) and I jump on the boxes and high five that another cycle is complete! Mad I know but very satisfying! On SE's - has anyone had any pains ,like nerve pain, in their arms? Have had this over the weekend. Not sure wether to ring CNS or not. Helen- would you mind if I PM'd you? Jo xxx
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24-10-2014
02:58
Hi Barton Thank you for sharing that and you didn't bore me rigid! Hopefully the cape will do its job well for you! It's really interesting to see all the different side effects that everyone has on cape. Everyone is so different. Mine seems to be toe infections! ( don't ask!) and tiredness. I don't have the hand and feet thing but I started using udderley smooth from day one twice a day morning and night even when I'm on my week off. I think I have just been lucky so far ( if you can call yourself lucky in this situation!) that it hasn't materialised. Jo x
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24-10-2014
02:48
Hi toffee, Sorry to hear your news but as helen and belinda have already said you can get a lot of help and advice on these threads. It's so difficult when you feel you need to have the mx and they say not! You do have to stand up for yourself and be informed and organised. Make sure you get copies of all correspondence and scan results. There were a couple of things missed or rather my onc didn't tell me that was on letters sent to my Gp. Helen- that situation sounds a nightmare! Especially if you asked and they said no. You must be really angry Hugs jo x
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24-10-2014
02:36
Hi all I know what you mean about complimentary supplements. I had done some research on matcha tea and asked my onc about it. He'd never heard of it so decided not to use it. Also did research into AHCC tablets He said I could use them but I think I'm just scared incase it affects the treatment in a negative way. Jo x
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23-10-2014
08:27
Hi Lucy Funnily enough I was just looking at that on the internet the other day. Haven't tried it yet but am thinking about it! Have you used it yet? Good luck for your scans. Bought some ahcc tablets onc says ok to use but don't know wether to or not! Jo x
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23-10-2014
05:41
hi all all you lovely ladies have been through it haven't you? moneck- hopefully cape will do the trick for you. you have had a lot going on ! helen - waving back to you! howay the lads! barton - how long have you been on treatment etc? im so pleased to have you guys to chat too. its such a lonely road at times! hugs jo x
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23-10-2014
05:28
hi all lucy - i am one week into cycle 4 of cape. i had a scan two week ago after cycle three and it showed a big reduction in lesions. hoping that the next scan shows even more! i dont think i'll get another one until cycle 6 maybe or just before. good luck with your next scan. i also travel two hours from the south east coast. the shops and restaurants are really nice around there. might treat myself one day! x Mrs blue - do you go privately or nhs? i am going privately. its pretty well organised so not to much hanging around. so you have been dealing with mets for six years? thats very inspiring! long may it last! best wishes jo x
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23-10-2014
08:27
Helen I see your a fellow northerner! I am from newcastle but live in essex! Jo x
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23-10-2014
08:22
Hi lucy21. I am at Fulham road. I'm similar to you in that dx February 2013 and secondaries to liver 2014. It's scary how quickly it spread. Do you have to travel far to get to the marsden? I have already used the hormone therapy but it didn't work for me. Hopefully it does for you. Have you been on it since jan? If so have you had any scans ? Best wishes jo x
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23-10-2014
08:16
Thanks for replying Ej81 ! I have been reading the threads but just wanted to get some updated news. Hopefully some will post and give us all the strength to carry on fighting! Xx
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23-10-2014
08:12
Good morning all! Hope you are feeling well this morning? Helen - your story is a little similar to mine in that I was diagnosed in feb2013 with secondaries in liver in May 2014. None of the hormone treatments worked for me hence onto the cape. I've had a mastectomy but no reconstruction yet. I hope your treatment works for you! X Katherine - thank you for your kind words and support. Its much appreciated and the welcome has been lovely! Side effects - I don't have the ice cold feeling (yet!) I do have an infection in my big toes that I can't get rid of! Am off to barcelona next week so I need to get rid of it by then. Gp tomorrow me thinks! Best wishes jox
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23-10-2014
07:57
1 Hug
Hi all Hi. I'm a newbie.and Feeling low today.i think we all need to hear some good stories! Please post your story today! Much love jo xx
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22-10-2014
06:41
hi hilsy im a newbie and thought i would jump in on this subject. so sorry youre having these problems! with regard to the liver issue my son has primary schlerosing colangitis(hes 16) which basically means his bile ducts get blocked. when this happens the whites of his eyes yellow up and he has to have blood tests. i would suggest that you have this done just to check the function of your liver. peace of mind if nothing else. best wishes jo x
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22-10-2014
06:22
hi all i am a newbie on the forums but thought i would join in. i am at the marsden. i live on the south east coast so it is quite a trek in but hopefully worth it! i also have liver mets and am using cape at the moment. its already shrunk my lesions after 3 cycles so im pleased with that at the moment . stillhere- its good to see that even though you have been through sooo much that you are still here! its really encouraging the length of time you have been on cape! long may it last! best wishes jo x
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22-10-2014
06:07
hi barton spa day was very nice thank you. had a facial and a manicure! feel soooo tired now though! do you have liver mets and take cape? jo x
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22-10-2014
05:46
hi all Thank you kaye and helen for your replies. Helen - audio books sound like a really good idea - not sure what hubby will think though! with regard to the sleepng issue - does anyone take sleeping tablets? also, how long have you guys had secondaries? i had original dx in feb 2013 then secondaries (liver only 2 small lesions) in may 2014. its terrifying how quickly its spread and i really dont know what to think apart from this isn't going to end well! i can't seem to live for today as every one keeps telling me to do! How do you guys cope? jo x
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22-10-2014
07:17
Thanks bevlaar! Well the house is still standing after the hurricane blew through essex! I just wanted to ask if anyone suffers from insomnia? Really is a problem for me not sleeping. Anyone got any top tips? Any help would be appreciated. Well I'm off for a spa day with my mother in law! Hoping its warmer in there than it is outside! Love jo xx
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21-10-2014
09:20
Thank you so much for your support! I'm a real technophobe so trying to post something is a real challenge. Hopefully I will get the hang of it eventually.! Jo x
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21-10-2014
09:02
Thank you to Bertie and hilsy! I'm glad I took the plunge and posted! Am very happy with the reduction of the lesions! Have very little side effects with the cape just tiredness really. Luckily I don't have the hand and foot thing (yet!) . Am hoping to get as long as possible out of this ! Many thanks for replying! Jo x
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