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lucinda
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since
01-01-2010
589
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19-08-2014
10:07
No problems Liz will pm you later with contact details. Hope you feel better and hope to see you next month. Lynn x
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15-08-2014
06:09
Liz 1 pm sounds good to me, I will send Mags a facebook message and will phone Lesley over the weekend. See you there. We normally try to get a table downstairs near the loos ! Lynn
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10-08-2014
09:05
I will be there so hopefully someone will join me ! Look forward to seeing whoever can make it. Any new ladies who wish to join us and need details PM me. Lynn x
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01-07-2014
09:38
Hi Sheila I hope your scan results were good. I find capecitabine easy to tolerate now they have changed the cycle to one week off one week on. I was having real problems with sore feet but that is ok now, although I do have really bad episodes of fatigue and the odd nausea attack. Otherwise can't really complain too much. Lynnx
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19-06-2014
10:44
Rather than have your zometa reduced to save a long journey have you considered having it locally? I go to the Royal Marsden Sutton for my treatment ( a 100 mile round trip) but have my denosumab injection at Worthing (originally i had zometa). This saves me a lot of travelling as I have to go to RM every 4 weeks for my capecitabine. I have just had my bone scan results and it showed that bone mets have improved and some are showing signs of healing, so either denosumab or cape doing a good job. Worthing do actually only offer 6 months of denosumab but RM requested they continue with it as they believe it is working and so continuing it is justified.x
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19-06-2014
10:34
Just thought i would give you my latest scan results as I am so pleased with them. I had not has a ct scan for 6 months and a bone scan for 12 so I was a bit apprehensive. Seems that the bone mets are showing signs of healing and the liver mets have shown signs of shrinking (only a few cms but shrinkage is shrinkage) so to all intents I am classed as stable. I have even been given a month off hospital visiting, have got 2 cycles prescribed in one go. So starting cycle 15, still one week on one week off, and on we go. xx
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19-05-2014
05:00
Hi Rose I actually went to the RM Sutton because my former hospital would not remove my lymph nodes(I replied to your other thread so will not bore you with my treatments here). I pushed for surgery because there is evidence that removing the primary helps to stop progression. Dawn Good luck with your results. I am RM Sutton on Tuesday for next cycle of capectabine so may run into you. Lynn
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19-05-2014
04:35
Hi Rose your dx is similar to mine, except that I was told I had spread to bones(ribs,spine,pelvis,femur) at the same time.This was in May 2009. I only went to gp with back pain! I also had a large lump in axilla where lymph nodes had matted together. I first was put onto hormone therapy and bone juice which did not reduce the lump. I then had 3 fec/6 docetaxol which had limited success followed by 30 lots of rads to breast and axilla. This still did not reduce the lump and I had to fight to get it surgically removed 17/19 lymph nodes had cancer. My problem was they could not find the primary, hence the radiotherapy treatment in the hope that they killed off the original tumour.I was on letrozole for 2 years before it stopped working and I am now on capecitabine. There is evidence that removing the primary can stop further progression. I also have my treatment at the RM, originally went there for a second opinion and have had mny treatment there since as i cannot fault the treatment. Do have a chat with the SBC nurse, you will find her very helpful. I hope all your scans go well, you can get a treatment plan in place and then I am sure you will be less confused. Do ask for copies of your scan results as I find this helps to get everything straight in my mind,I never take in what they are telling me at the clinic appointment. I have my treatment at RM Sutton,which hospital are you at?
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19-05-2014
04:14
Such sad news,another lovely lady taken too soon. I hate this damn disease. My thoughts are with her family at this very sad time. Vicky always tried to help others on the forum. God bless and RIP xx
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13-05-2014
06:49
Hi Tinkerbelle i was told by my onc to drink tonic water in the evening, like others I get cramp at night in the back of the legs and it is quite painfull, much better of course with a gin in it and the gin helps with the sleeping. xx
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13-05-2014
06:45
Lovely to meet you all for lunch today, it was really enjoyable. Nice to put names to faces. Thank you Julie for organising and special thanks to the chauffeur. Linda xx
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29-04-2014
03:29
I am now on cycle 13, and up to now have had few problems. My hands have always been ok and the soles of my feet have been quite red but not really painful. In the last few weeks my heels became really sore and cracked so I have changed to one week on and one week of the cape. I have however for the last 2 weeks been putting udderley cream at night ,with socks over the top, as I have done for months but I started putting a thick layer of vaseline on the soles and heels of my feet during the daytime. My feet have really improved and I can walk without the pain in my heels. I have always used vaseline on my hands because I was a pastry cook and it was the only thing that stopped my fingers cracking when they became really dry. I am hoping I have found a solution, it can't be because I changed the way I am taking the cape as this is the first week on that rotation. I am really pleased about the improvement as I am going to the new forest for a few days and hope to do as much walking as the dodgy old him will allow (ironically arthritis no bc pain). Hope all e/e ladies get good results. xx
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29-04-2014
03:18
Helen I was just ready your post about refusal to mx after diagnosed with secondaries. There is research which backs up evidence that removing the primary, in a secondary patient, has positive results on prognosis. I had a lump in the arpit which was basically all the lymph nodes becoming matted together. I had 9 months of chemo (fec followed by docetaxol) and 35 doses of rads and it only reduced marginally. I really had to push for surgery, in fact had to change hospitals. Even then the oncs were not really very encouraging but the surgeon was really keen to do the op and felt it would help in stropping further spread. It is the best thing I ever did. I have had no problems from the surgery apart from slight restriction when I try to reach up with that arm but more to the point it made me feel better in myself. I somehow felt I was conrtolling the damn cancer rather thai it controlling me. I have since had spread to the liver but it is not major and was caught early. I am now on capecitabine, which I am finding much easier than e/e. If you really want surgery keep pushing for it, being a secondary patient should not be a reason for not doing it.I do understand you need to be stable for the operation but if you are in that position go for it. xx
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29-04-2014
02:58
Re the article I left 3 comments, none of them abusive or objectionable, but I did point out I was suffering from incurable cancer. Not one was printed, the only reason i did it 3 times was to see what there responce would be. I was not surprised they were not printed, it is not pink and cuddly or in agreement with the article. Shame on them !
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29-04-2014
02:51
Hi I saw Lemongrove for lunch a few weeks ago. She been unwell for a few months now and has been having chemotherapy and also surgery to her spine. When I last saw her she was just recovering from surgery and in a wheelchair due to lack of mobility. She has not really been on any of the forums or fb recently but she is improving and I am hoping to meet her in the near future and will pass on youir best wishes. x L xx
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28-03-2014
11:59
Looking forward to meeting friends old and new.See you all next week. Lynnxx
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16-03-2014
12:28
Like ponsmiur I had good response to letrozole, for 18 months in fact, and then it stopped working and I had progression to liver. I did a course of exestemane/everolimus and this sadly did not work for me so changed to capecitabine. I am just starting cycle 12 and my last scan showed everything stable and improvement to the bone mets. I have had few se's, my feet are just starting to get slightly sore and dry but the udderly cream seems to have sorted that.When I went to clinic last week they gave me a graph of my tumour markers which had dropped every cycle and now seemed to have stayed stable at 43. They said that as I seem to be tolerating it well I could leave my next appointment and scan for another 6 weeks and came away with 2 cycles of the little peachy pills. Hopefully they will find a treatment that will work for you. They had wanted me to have weekly taxol but I was happier to leave that in reserve and try the oral chemo route first. At the moment that seems tro have been a good decision and I am hopeful my next scan is also stable. Good luck x
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13-03-2014
04:37
Thanks for doing that Julie. I can make the first one for definate and will have to work through the other dates depending on hospital dates. See you for lunch !!
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28-02-2014
10:47
hi I was dx with bone mets and spread to lymph nodes in 2009. In December 2012 I was dx with spread to liver. I was on e/e treatment for 6 months which did not work for me sadly and I am now on cycle 11 of capecitabine. My latest scans show that my liver mets are stable and my bone mets are slightly improved. I have not really had many se's with capecitabine and have found it a fairly easy chemo to tolerate. good luck x
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