Hi Marirose - I’m sorry you’ve been feeling down. I was going to PM you last week but it didn’t give me the option, however, I’ve just checked again now and it’s there, so I shall drop you a line.
Hugs in the meantime (((((((((x)))))))))
Sorry Marirose, the PM option disappeared again - hence no message. I can understand your concern about being taken off Cape and just monitoring more closely. Surely if it was working it’s worth sticking with? And it seems odd to stop a treatment while waiting for a scan - why would they suggest that before knowing the results? The reduction in the tumour sounds significant.
From my own experience I’m now a great advocate for gaining a second opinion if you have doubts about the suggested course of action with your treatment. Monitoring skin mets without treatment, when you can see them growing, is a very hard thing to do.
Anyway, just to let you know I’m thinking of you.
X
Hi DBNO
I have sent you a pm. xxx
Hi everyone
I do hope you are all well. We have not been in touch for a long time Jan are your mets still stable since your radiotherapy and Mo has your met still remain quiet. Lynne do you still look on here are you still ok.
Stresshead you worry me I have sent you pm’s and I have heard nothing from you. I do hope those sores are healing and did you have your further electrochemotherapy have you started the trials yet. Please try to get in touch we all feel for you
I am fed up with my hospital I had two photos of my skin mets and the onc has never seeen them what do they do with them??? she now wants me to keep a record of them on my phone I’ve already got photos on the phone and dread the grandchildren going through my phone I suppose I should print them off.
Well I hope I am not chatting to myself I am sending you all lots of love and hugs xxx
DBNO you know I have not forgotten you.xxx
Hi Girls Nice to hear from you three
I feel the same people are always passing comment at how well I look also many do not bother saying anything now. Although I have had 2 chemo treatments in tablet form and have not lost my hair it may seem to them it isn’t as serious. I have a friend who has a sister with re-occurrence in her shoulder “but she is having a strong chemo” is what I was told she couldn’t say which chemo it was. They don’t see the spot invaders that now occupy my chest and upper stomach and disintegration of my left breast due to the tumour pulling it in. But hey ho I’m still here and want to look good and healthy.
I am so pleased that you are all doing so well but i understand you will always worry about it occurring again you know that you are always welcome on here.
Stresshead I am still waiting to hear from you. Hugs to you all and any other skin met ladies it would be nice to hear from you.
Love to all xxx
Hello skinny friends
I’ve struggled with Internet while at my parent’s and have also been busy with a multitude of things. I’m hoping to get my house extension started this week and have been relocating plants and things. A bit extravagant to actually go ahead with it (should have had it built a couple of years ago but put it off when I got my prognosis following the incurable diagnosis) but I decided I should live for now and try to put the shortage of time out of my mind. Plus, it will add value which my family can benefit from.
Marirose - sorry I haven’t posted sooner, as mentioned, my parent’s Internet drove me up the wall and I gave up rather than suffer the frustration. However, I’m now home again. I agree that it’s a bit worrying to have the photos on your phone in case the ‘wrong’ people see them. It’s a shame that there’s so little information/knowledge about skin mets. We all need medical professionals who we have confidence in.
Jan - great to hear from you and particularly that your skin mets have dried - that sounds like real progress, though the tiredness is hard and I remember having a bit of neuropathy when on FEC-T, so I do sympathise with you. I know what you mean about it all feeling too real. It was a terrible reality check with Belinda, Bumpkin and Wolfie. I find the helplessness hard to cope with, not just my own situation but the people here who I care deeply about.
Lynn - what’s the point of them taking photos if they don’t even upload them!!! Very reassuring that your little red spot hasn’t changed though. I wonder if it could be a cherry hemangioma (see my comments at the bottom)? It’s hard to feel lucky with an incurable diagnosis and also hard when people just don’t grasp the situation. Best of luck with the CT and colonoscopy results.
Mo - I’m glad you have your granddaughter to keep you distracted, she sounds great fun. That’ll be very exciting for her to receive her own post! That’ll be great if your skin mets have been shrinking - the right kind of progress.
Stresshead - if you do check in on the thread I want you to know that I’m thinking about you too.
My CT results weren’t ready for my onc appointment on Friday so she’s going to phone me this week. The new spot that appeared the day after I last saw her hasn’t progressed and she thinks it’s a cherry hemangioma rather than a new skin met. I can see though that my skin mets have reduced further - I think the hot baths are really helping them. As usual, my onc was wonderful and allayed various fears, so I realise I’m lucky to have her support (particularly after the previous one). Our lovely Bumpkin suggested that I should keep photos of my skin mets so I now have over 18 months worth!
Love and hugs to all xxxxxxx(((((((((((((()))))))))))))))))xxxxxxxxxxx
Hello all my skinny friends,
sorry i haent posted for ages bt have been back in hospital again with another pleural effusion. Seems i may now have ‘pockets’ of fluid’ which they cant drain in one go. My second drin sems also not to have worked as i am still very breathless even with the slightest movement. I have had no chemo for 4 weeks now and they wont let me have it til my breathing is right…dont know where we go next. I am due in london tomorrow for a review of my ECT treatment but dont feel well enough to travel. My new onc mentioned going onto gem carbo and then perhaps back to fec but cant see them giving me anything anytime so soon. Its so very scary. I dont want to go back to hospital bt may not have a choice. I feel so down now.
I hope yo are all as well as can be. If i dont post again for a while st least yo’ll know why. Mch love to you all.x
Hello stress head.
Just to say hello and send some hugs xxxc
Dear Stresshead
Sent you a pm didn’t know you had been on here but glad you have been able to let our skinny mates know. Still sending you lots of love xxx
Stresshead - I’m sorry to hear about your difficulties; no wonder you’re feeling scared and down. I hope they get the fluid drained soon and back onto treatment. I found Gem Carbo a good chemo.
Sending positive vibes.
Love and hugs xxxxx(((()))xxxxx
Hello to all my ‘skinny’ friends and thank you for your messages of support yet again. So many things are happening at once i feel really overwhelmed. I am now on carboplatin which should help to control the fluid, assming it works, which is still there. I am now on home oxygen to help with the breatlessness. Dont know whether anyone has experienced this bt for a few months i havent been able to move my arm much, almost like the cording i had after my mastectomy/reconstrction. I mentioned it to the onc and he said i wold be ok to do the ‘roller ball’ and stretching exercises which i have done for the last week. Trouble is my arm hurts down to my elbow and i have like a red rash down it. It ios also very hot. My district nrse sggested i contact the chemo unit but jst casnt face any more bad news…dont know if if cold be the cancer, effects of treatment or even lymphodeama. I also dont think i mentioned that my last scan suggests i now have bone mets!!
Sorry my posts seem to be all about me just lately…i dont mean them to be. I think of you all the time and hope you are doing well. I do try and read the posts even if i dont post myself. Thank yo all again for helping me through this.xx
Hi Stresshead
How lovely to hear from you I have missed you. How is your mets are they improved now that they have had chance to heal and did you have another ECT sorry to hear about your rash on the arm I think it would be a good idea to get it checked out. I am hoping this new treatment will help you and sorry you look as though you now look as though you have bone mets.
I will pm you xxx
To all my other skinny friends Hello I am not doing too well with the mets the new ones are looking more prominent but the old ones are still stable I seem to have them all over the chest area and creeping around the stomach but they are not red. But the cape is working so they say but not on these I hate them and now summer is coming I will have to watch what I wear. Thats it rant over I’ll just have to get on with it.
Love and hugs to you ((((((hugs))))))) xxx
Hi Stresshead - please contact your doctor NOW regarding the rash on your arm as it sounds like cellulitis and you probably need antibiotics. My friend has lymphoedema and she developed an area of red rash which was cellulitis. She was told it needed to be dealt with immediately. I’ll PM you just in case you don’t log back on today.
XX
Hi Marirose - sorry you’re not doing well with new skin mets but it’s good that the Cape is working. I understand how not being able to wear what you want is just another added disappointment to everything else. Best of luck this week with hubby’s results.
Hello other ladies.
((((((((x))))))))
Dear
Dear DBNO
Thankyou for your well wishes for my hubby took long enough but at last we will get to know how good or bad it is.
stresshead I do hope you are listening to everyone let us know how you go on.
Love and (((hugs))) to all xxx
dbno
I am so sorry for the mishap I do not know where it went wrong
((((((((((((hugs))))))))))))))))))
Hello Skinny Friends
I am feeling so down we have now lost another one of our gang Cress. Her daughter has wrote a lovely post in the private group. There was so much more to Cress than what we really knew about her she was truely a loverly person her pain has now gone bless her. :heart:
Oh no…i thought she was doing better after her drain…rest in peace 
sharon
Marirose - I must have been having a chemo brain moment as it hadn’t dawned on me that Cress was one of our skinny gang. That makes me feel bad to have forgotten but also that she’s no longer with us. Her daughter’s words were lovely.
(((((((XXX))))))
Hi everyone, wow, I’m another person who has been touched and saddened by Cress’s daughter’s tribute, she sounded such an amazing lady. Why is there such a cruel and heartless disease in the world that causes so much sorrow? We spoke on PM as she tried to get on a trial at the Marsden, without success. RIP Cress xxxx
I’m also in a wobbly place as I’m also trying to get on a trial there, I was so hopeful but it appears that I have a high bilirubin that is near their parameter for not being accepted, I’m waiting for the verdict…just my luck…oh well, rant over!