Hi ladies - it’s me - Flori35 - but this new Forum thing wouldn’t let me sign in under that name and I couldn’t be bothered faffing about, contacting the mods so I just changed my username to get back on.
Anyhoo, sorry to hear you’ve both got worries, though the reduction in the skin mets is good news Orse.
Orse, I haven’t been in touch for a while because I didn’t want to tell you that my mets are quite active again and spreading through my lymph nodes as well as my skin. You were doing well last time we PM’d and I didn’t want to say anything that might disappoint you and make you worry more about your own situation. I’m going to be starting more treatment but I don’t know what or when yet - I hadn’t heard about Eribulin being back on the CDF. I’m grateful to have had a bit of time NED though.
It was a shock to see about Helen. I need to post on the dedications thread but am a bit lost for words. I didn’t realise she’d become so ill. She always sounded so full of life on her posts.
I hope the other skin mets ladies are doing ok.
X
Hi all I’m glad to see this thread is still active sometimes I feel alone with these aliens on my skin. I don’t want my hubby to look at them because I hate looking at them myself and to know they could spread fills me with horror they seam to settle down then next time I look they look angry also I seam to have some tiny ones joining the first 11. I get very sore under my breast but thankfully it’s not the skin mets it’s the chest wall tumour catching on the band of my bra it all really makes me feel down at times but I am not supposed to be down I have to be brave to everyone. Sorry I am only feeling sorry for myself xxx
Thanks Nicky I was quite upset while I was writing that post I think it is hard to explain how you really feel at times and it makes it easier to vent frustration out with people who know what you are going through. The Cyber cafe is a great place to escape to thanks to Helen god bless her I shall be there later xxx
Hi orse,C or now Ladywolf love the new name and avitar it made me laugh. I feel better now I get so annoyed when I see how my body has changed but I do consider myself lucky compared to you young ones my heart goes out to you. My first primary was 1996 lump out radiotherpy chemo all done with could get on with life saw sons graduate married and 6 grandchildren I didn’t realise how many young women have got secondary’s and I get quite emotional when I read your stories I admire you all for your courage to deal with this dreadful disease.
Thankyou all for being so considerate over my ranting with these ugly spots that will not go away xxxxxxxx
Grrrrr…I’m frustrated with this new sign in thing. After not letting me sign in as me yesterday it now won’t let me sign in with yesterday’s new name and password and has reverted to my old one. Orse/Ladywolf, I see you’ve had problems too.
Marirose we’re the best people to share your true feelings with, so don’t bottle it up, say how you feel. You know what they say about a trouble shared is a trouble halved. Not quite the reality but I have felt much calmer after ‘talking’ to the ladies from the Forum. No-one can truly understand the gut wrenching feelings unless they’ve experienced what we have/are.
I thought it was bad enough being able to see it progressing in my skin but now I know it’s moving into more lymph nodes and I’m physically aware of them I feel even worse. It’s hardest at night time when everything goes quiet and I’m just left with my thoughts. I keep myself very busy but nothing can really quell the thoughts of what’s happening.
Time for a cup of tea I think.
Good night ladies.
X
thank you so much ladies for getting this thread up and running again… i wish no one was suffering but.its such a comfort to know all the feelings and frustrations i have are ‘real’. I am convinced my treatment (eribulin) isnt working and have been told there arent many optons left so 'm really scared. Maybe some of you could let me know how long you’ve had skin mets and what treatments you’ve had. Orse/ladywolf…i know we are already familiar with each others situation and struggles…thanks for the info on the ct scan,i will mention to my onc next week.
Love to allxx
Another one having problems logging on.
I started this thread but haven’t posted for ages,just finished 6 cycles of ec chemo so not been feeling great,before that I had 5 days of radiotherapy to dry my mets up which had ulcerated. I know it won’t cure me but it has helped the appearance,just wondering how soon before they return.
My Mets appeared about 2 years ago as small lumps and I have had various oral chemos all of which worked for a time. I must have exhausted treatment options by now,must admit I am really fed up with being on them constantly.
Having CT scan on Monday and back at hospital early next month,its great having a break from that place.
Thought when chemo finished I would feel wonderful but I don’t,waiting for hair to grow,eyelashes to come back and I feel vulnerable
Me again had problems finishing post, I wanted to say I feel vulnerable being off treatment.
Thank you all for keeping this thread going.
Best wishes.
Jan
Hi again ladies - It’ll be interesting to see who I’m signed in as this time when I hit the post button, as currently I don’t know!
I’ve had my skin mets for a year. For my primary I had FEC-T and felt ill the whole time I was on it so I can understand how you’re glad to have a break from EC Janice. Then again, I also understand how scary it is when not having anything. I had Gem-Carbo, but not full doses and lots of delays and some missed treatments because of low bloods. However, it got me to NED for a while, for which I’m very grateful to have had a bit of mental relief. My mets have been growing unchecked for a few weeks while I wait for results of genetic testing to decide what treatment to have next. There’s hardly a moment, day or night, when it’s not at the forefront of my mind so I’m getting pretty tired now.
Our friend Bumpkin has been through many treatments. I’m sure she’ll be along in a day or two with an update.
I was fortunate that I kept my eyelashes and eyebrows with Gem-Carbo but lost the rest of my hair, despite it not being expected.
Good night ladies. Rest well.
Flo
X
Thanks janice and flo for replying. I too feel very vulnerable at the minute as nothing seems to be working. The only good thing is that i haebt lost my hair, which i was dreading, but now i’d rather that and know the treatment was working!! Not a minute goes by without this thing rearing its ugly head…just feel i have no control left over anything. |Thanks for listening. x
I’m on a roll now…another issue I have is at work. Although my colleagues are wonderful and supportive, I feel like I’m living in a sort of parallel universe and I no longer fit into theirs with all their talk of the future. As I wait for results, and trying to establish what type of treatment I can have, my nerves are becoming more frazzled.
As awful as it is to know we’re all in the same boat, I too find it helps me to talk to others in my situation.
X
Hi ladies
Sorry I haven’t posted earlier, Havent been able to sign on to the site… New log on driving me mad!!!
Marirose… This disease is a nitemare, regardless of our age or circumstances, we all have the horrid feelings/anxiety… You can rant and rage on here as much as you like…it’s been said before and it’s true, we are the ones that truly understand the feeling… Rant away!
Stresshead - I’m so sorry your still going through all this worry… Your oncologist should have sorted something by now… And I’m sure you have more options than you think… I’ve seen on here that ladies have tried several chemos before finding one that works… Hang in there… (((Hugs)))
Janice - hope your ct scan went ok? Fingers x’d for good results…
Flo - I’m sorry your going thru a rough time at the mo… Can’t you get them to rush thru the genetic testing? Ive just had mine taken - they have taken it for ‘storage’ until I have my appt to discuss the implications !! Can’t get an appt until mid November, at which point they will take it out of storage and test it… Testing should take around 3 weeks…
I understand the ‘vulnerable’ feelings… I know this isn’t the same as you ladies, but my bloods where low last week and they refused to do chemo… Just having one week off makes me worry that it’s growing!! I’ve just had my bloods taken today… Here’s hoping they ok for chemo tomorrow…
Flo - I do understand your feelings about your work colleagues… I look at my boys and find it hard because I know I’m going to miss so much, my heart beaks when they talk of the future, as I know I will miss so much… Im in your parallel universe as well… It’s so hard… Big hugs to you… Hope your treatment is sorted soon…
Best wishes to everyone…
C xxx
Hi Ladywolf - I think my sign in may be sorted now but as Downbutnotout. I shared your frustrations! It is a worry having delays with treatment but someone said to me that your bloods are probably low because the chemo is working well. It sounded logical to me. A week isn’t a long time - I had much longer delays plus cancellations.
I so wish I could give you more time with your boys. I just know how I feel about my life and what I’ll miss so those feelings must be 1000-fold for you. Let’s keep hoping that we can eek our time out while they’re working on new treatments and a cure.
I’m hoping for an answer to the genetics question next week and then they can work on what I’m going to have next.
Sending well wishes to all the ladies on this thread.
X
Hi ladies
Bloods back - still too low… White cells are the prob, but only short by 0.3… They are going to try again on Friday… Flo - I love your idea that it means the chemo is working … I’ll hold onto that!! ??
I’m glad that your results will be in next week and treatment sorted… The waiting is the worse bit… Pls keep us informed…
Thank you for your comments re my boys, we all have people who we love and who love us and who will miss us and we them… This cruel disease hits us all regardless of our circumstances… Like everyone I’m trying to bring normality back and will make sure my boys have the best childhood… I will not let this take over their lives ?? We are going on holiday to Crete on the 16/8 and both myself and my boys are going to have the most fantastic holiday… I’m leaving this ‘c’ in the Hosp until I have to face it again!!! Crete here we come ??
???
Bumpkin - I hope the weather clears soon and you have a lovely time… May there be many happy distractions 
…
My best wishes and good luck to all …
C xx
Oh you wonderful ladies…thank you for your posts. The analogy of a parallel universe is so right!! Bumpkin, your words are so wise and i will try and follow your example. I am now sure i have more mets than when i started,they are on my reconstruction, abdomen and i now have them on my shoulder blade and along to my other ‘breast’. I have had second and third opinions and all say the only thing left is gem/carbo?? I dont seem to get any ‘borrowed time’ with anything. You ladies seem to have tried other treatments so i wonder why i cant try them? if any of you are willing, can you let me know which things you have had and how long they lasted. Like all of you, the worst thing to cope with is not being here for my daughter…sometimes i can hardly bear to look at her, knowing the pain i’m going to cause her too early in both our lives. Thank you so much for listening. x
Hi Stresshead
Gem-Carbo worked well for me - it got me to NED for a while, and although the disease is on the move again it was still a better result than expected. I started treatment with it mid October and had numerous lumps which were about 1 cm each and also a very fast spreading rash. Within a couple of days I could see the rash reducing and eventually the lumps disappeared. I had about 4 1/2 to 5 months where I couldn’t see or feel anything. In April my PET scan showed NED but the rash began to show again mid June.
I really hope Gem-Carbo works well for you. Is your disease hormone +ve or HER2+ve?
Bumpkin you are amazing, inspirational and a wonderful friend - you always know just what to say to make us feel better and get a better acceptance, despite your own difficulties. Enjoy the G&T! I’ve never got on with alcohol so a cup of tea is my comforter and I’m still holding out on the anxiety pills. I hope you get some good weather. It’s been so changeable here too with winds in the evenings, rain in the mornings and sunshine in the afternoons.
Goodnight ladies.
X
Hi ladies
At Hosp today for bloods… And fingers x’d chemo!!
Hope everyone is ok.,
C xx
Hi ladies
Bloods again today… Gone right up, chemo here I come!!
Hope everyone else ok…
C xx
Excellent news C…you’re back on track…keep up the good work!
Flo
X
Thanks Flo
Hope things are going ok with you, that results are what you want and the treatment plan is in place (and one of the easier ones) soon…
Not sure what’s going on with my posts, they seem to be going into cyberspace for a few hours before going on the thread… Grrrr
Wishing all the best to everyone…
C xxx