Hi Julia,
Eyebrows did mainly go but as I wear a long fringe it wasn’t a problem and also grew back very quickly. I had a bit of neuropathy, slight numbness and tingling but nothing major, a couple of fingernails started to lift but only a bit.
I did get good results, reduction in all mets (I have bone, liver and lungs). Finished treatment end Aug, now on tamoxifen and last scan end Oct showed further reduction or stable.
I know I couldn’t have done 18 weeks but you can have breaks!
Good luck with your treatment
Glo xxx
Hi Julia,
I did cold cap, never heard of mitts and socks though! My fingers nails went soft but I think that was mainly/partly due to the capecitabine I had just prior to the taxol!
I am very ER+/PR+ but HER2 neg.
I have had stability since mid Aug and am on tamoxifen ATM, prob due another scan around end Jan!
Hello to all my 'skinny; friends and everyone else who posts on here…i hope you got through Christmas and New Year as pain and trouble-free as possible. I could say ‘now back to the reality of scans results, treatments etc’ but i wont !! …found it really hard to put this to the back of my mind whilst watching everyone happy and looking forward to a new year and a future…but as we all do all of the time i ploughed on and got through it.
Qite aside from our troubles, i have noticed that below the posts there is a ‘hgs’ icon. Have i missed something? i dont know how to use this…has anyone else got any ideas? I would like to give (and receive) hugs bt usally just type it?? thanksx
Happy New Year Stresshead and all the other ladies
Re the hugs, just click the little circle next to it. I’ve clicked a hug for your post.
I know what you mean about seeing and hearing other people enjoying life and planning ahead. I do enjoy things in my own way but it’s on a more reserved scale, with the bad thoughts always lurking in the background. I think that actually being able to see the skin mets keeps it at the forefront every day, though I still fret about what I can’t see. I began to find it hard at work (not that I’ve been there for some months), hearing their conversations and feeling like I don’t belong in their world anymore. It’s because of this that I draw comfort from being able to correspond with you Forum ladies.
X
Hi everyone Happy New Year
It’s hard to stay positive but you tend to think will I get through this year ok. Especially when someone you admire loses the battle so many good ladies have found their wings and are no longer in pain.
The onc felt the new cape has healed the ulcers after just 2 weeks of tablets I don’t think so why would the new skin aliens grow bigger.
But who am I who only nursed the sores and sort my own help from the gp nurses and TV nurses.
Sorry if I seem negative I have had an amazing Christmas with grandchildren in England and New Year with grandchildren in France lets hope I can do it all again this year. I do wish you all a very positive 2016
Love Rose xxx
Hi ladies
Hope you all had a a good Xmas and happy new year to you all.
My Xmas and new year was brilliant with my little boys… Only prob is I’ve been a bit tearful, like you ladies I’m going through the ‘horrid thoughts’ that this will be my last Xmas, and I won’t see the joy on boys faces again!! How morbid I’m being… Need to sort myself to get over it…
Seeing my onc on Wednesday… Dreading it. Back to reality .
Going to take my decorations down today, don’t think being early will make any dfference to my luck!!!
I wish all ladies on here the best, and pain free new year
Wolfie xxx
Hi ladies,
Scan results in… Some reduction others stable… So ahead with more eribulin…
Hope everyone is ok…hugs all round…
Wolfie xx
Wolfie - that’s great news! :smileyvery-happy:
XX
Oh Wolfie
I am so pleased for you a billiant Xmas and a great start to the New Year.
Fantastic xxx
Hi ladies
Thank you so much for you replies - hoping to put it to the back of my mind now… And no more tears ???
I hope you are both well??
Dbno - how you getting on with the eribulin… Hope it is blasting those b**ggers…
Mairiose - I hope cape is doing its job… And you see improvement very soon…
Stresshead … I hope things are getting better for you… I had an allergic reaction to plasters, and that was one reason why they decided to give me a Port rather than a picc… So much better for me… Have a look at the information on it and see if it would suit you…
Cress - re nails… I don’t know if will help, but I remember being told that your nails lift and go weak because the chemo is light sensitive and gets to the nail bed. Painting them with very dark nail varnish will stop the light getting thru and the nails getting damaged… I did this and didn’t have probs with my nails - but obviously this could have been coincidence… Maybe worth a try?
Janice - I hope you are now the advice you need on how to deal with these mets - so much differing info we get… My onc gave me more steroids… I hated it and came off asap…
Bumpkin - haven’t seen you post for a while - I really hope you are ok and this is only because you have been busy… Take care and post if you can xx hugs xx
Anyone else on this thread - take care, and I hope things are better in the New Year…
Wolfie xx
Hi ladies…havent posted for a few days but have been reading the posts.
DBNO…thanks for the ‘hugs’ info. I also agree with everything else you said about seeing our mets all the time and the sitation with work colleagues.
Marierose…glad to hear you had a good xmas but know what you mean about finding it hard to stay positive. Have you had any more developments with cape and your ulcerated mets? Mine did seem to get better but not sure if it was the cape or the dressings.
Wolfie…so glad to hear you had a great time with your boys. However hard we try we just cant stop those morbid thoughts creeping in can we?
A quick catch up with me…i went last week to see about electrochemotherapy. They think it will help but its not a cre and there are no guarantees…nothing new!!. My scan was clear…no spread to organs…fantastic news i know but while everyone else is jumping for joy…i’m not. I don’t know whats wrong with me. Perhaps its because i was then told that the surgeon is off sick and i have to be transferred elsewhere. I am terrified that the delay will necessitate another scan and i wont be so lucky next time. Stil;l at least i wasnt thrown on the scrqp heap !! Then i got another appointment at the trials clinic for Monday …looks like i’ve gone from no help to everything happening at once. A nice dilemma to have i suppose but may end up having to choose between a treatment or a trial.
Have just finished using the floraracil cream and am halfway through my seecond cycle of cape…not sure either are doing any good but i dont think things have got worse. Seeing the dermatologist next week so will keep you posted
One thing that is really bothering me is the absence of posts from BUMPKIN…IF you are reading the posts please just let us know you are ok.
Sending love to all, including nthose i havent mentioned. xx
Hi all
Stresshead glad you are feeling alot better well I am on free week of 3rd cycle of cape and I must admit the skin mets seem so much better. Ulcers completly healed still got the new mets but they don’t seem as angry anymore I even have white skin beneath the old mets which hasn’t been there for 12mths or more.
Let us know how you get on with the electrochemotherapy interview. Maybe your new onc and team will be a good move lets hope so. Wishing you all the best with your interview.
Wolfie thanks for your advice for Julia about the nails it is certainly somethink to think about when the nails start to go.
Cress,Julia thankyou for sharing the American skin mets now I have my computer up and running I will certainly read it.
Jan sorry if we are confusing you with skin met treatment I found when my mets ulcerated the sticky dressing the nurse at the hospital gave me caused the mets to flair up more and I think it caused 2 more to break. I then used dry dresssings held in place by a tubular bandage. I only used a barrier cream very lightly. Now that they are much better I am using a light moisture like diprobase e45 and nothing that has perfume in it. I do hope yours are not troubling you.
DBNO glad your treatment going ok hope se are very little.
Sorry to miss anyone out Bumpkin is worrying us all hope you are ok Bumpkin I sent you a pm. I am misssing Belinda she was a valuable member
Best wishes with good results for all xxx
Dear Redridinghood
Welcome to our skin met thread sorry you are here but we are all here to help one another and you can rant and rave and let your feelings out we have all been there.
Please don’t worry so much things may seem really bad to you at this moment. You have a stable bone scan that’s great your skin rash sounds as though it could be skin met related don’t worry it can stay stable for a long while and some treatments can hold it off although I haven’t heard of anyone having radiotherapy but I could be wrong. I have had mine since April 2014.
Take care and keep posting.
Julia your nipple trouble sounds nasty do you have dressings. Canestan is a fungal cream so maybe it is a good cream to use. I hope it soon clears up for you. Hope your taxol keeps working for you wishing you well.
Hi to my other skinny friends xxx
Hi Redridinghood, welcome to our .‘skinny’’ page although i’m sad you’ve had to join us. I started with skin mets Jan 2014 bt was misdiagnosed and didnt get any treatment ntil 6 months later. Mine havespread from the breast all over my abdomen and arond my side and up my back and yes, it is awful having this constant visible reminder. I asked my Onc abot radiotheapy and he dismissed it although i have kept a letter that i got from cancer research about a lady who is looking into it…i’ll find the details out…it may be worth s following up.
I also asked my onc about electrochemotherapy and he wasn’t keen…howevwer, since nothing sems to be working for me i have done my own research and am hoping to go ahead with the treatment soon…it is available in England and it is experimental bt quite honestly i’ll try anything.
Just to let you all know i have been told that there is a trial sitable for me but they want me to try the proven treatments first so at least somethinbg is in the pipeline…
Jan…like marierose i found that even the low adhesive dressings irritated my skin and mets so at the moment i am having urgotul (?) and alleyyn dressings on top.
I am told they are improving…not much exudate and little scabbing bt they look red raw…
Marierose did/do yours look like this. I took your advice had had a shower and let the water run on the mets skin and you are right, its lovely, so i’ll do this the night before my district nurse is due as i cant really do my own dressings.
I thoght the cape was helping but now i’m not so sure…my mets are red but i seem to have white patches between them (not that there is much space )…i don’t know whether this is good or bad. Have also noticed a little round sore on the back mets so looks like that might start ulcerating…fingers crossed i’m wrong!!!
I have an appointment with the dermatologist tomorrow so will get her opinion on the floraracil cream…dont think its helped but if it hasnt made things worse i’m willing to give it another month or even gtry immiqimod. I’LL let you know what she says.
Regarding Bumpkin…i have also PM’d her but as yet no reply. Does anyone know if the moderators are able to contact users…i don’tt know what else to try but i’m really concerned about her.
Love to all kinny posters. xx
Sorry, in all that post i forgot Julia…i sympathise,i have the same problem with mets in the same area. My breast srgeon gave me chloraphenicol 1% and my dermatologist gave me polifax and fucibet, all of which i think are antibacterial creams…may be worth asking?? xx
Hi Stresshead
I’m glad you enjoyed your shower my ulcers slowed down and didn’t exudate as much until one day I had blood instead of the smelly stuff then it gradually stopped the white on the ulcers dried up and then the red took over then 5 weeks ago white skin started to appear between the mets around the tumour area. I started to try to go without dressings and success I can now wear a bra. The GP nurse was so pleased and amazed how it had healed. The onc believes it is the cape but it was improving during my first week of cape so I don’t believe it worked that quick. Now they look calmer and I try to count the original mets and I think scaring from the ulcers has wiped some out. Still have the new mets they are small purpley and others are small bubbles dotted over the other breast and upper part of the stomach they are not too noticeable so I can cope with that. Hope you can understand what I mean.
I hope your mets on the back are not scabbing I did have one that scabbed but it didn’t get worse and the scab dropped off while having a soak in the bath. The electrotherapy is worth a go have you read Cress’s post on page 2 it looks interesting.
You sound more positive than you have done of late I hope I am right. I really care about you the rawness of mets and ulcers is not a pleasant experience.
Wishing you all the best love xxx
Thanks SH, I’m seeing my onc on 19th so will ask about those creams. My fungation seems a bit better this week but still itchy. I’m hoping it’s the Paclitaxel working. It’s my third treatment today and then I’m to have a PICC line installed tomorrow ??? urg!!!
Regards, Julia x
Awww marierose…your post was lovely…thank you for caring so much. I have seen the dermatologist today and the TV nurse. i have been given more efdix as she thought there wasw an improvement and the TV nrse said the wounds were heading in the right direction, though they bled a lot when she cleaned them!! neither seemed concerned about the spot on my back other than to get the district nurse to keep an eye on it.
Cress…good luck with the picc line…i had a groshan line and it was the best thing i had done.
Love to all. xx
Hi Julia - just checking in to let you know I’m okay. My skin has improved while having Eribulin. I’m just waiting for CT scan results next week to assess how things are on the inside.
I have trouble with low neuts but haven’t had any blood cell boosters, though I had them (Neulasta - one injection which does a few days) when on FEC-T originally and had G-CSF injections (daily injections) when I had pancytopenia (all cell counts low) and an infection, over a year ago. They certainly do work and will keep you on track. I need to discuss them with my onc as I keep having delays in treatment, so I know how disappionting that will be for you to miss treatment and getting your PICC line when they were due.
I hope they give you the boosters and get you back on track. Best of luck.
X
Hello to all the other ladies. I too hope things are going as well as can be expected.
X
Hello Skinny friends
Sorry Stresshead if I have pinched your name for us all but I do think it discribes us. I do hope you are well and things are still going well for you.
DBNO glad your Eribulin is being kind to your skin sending positive vibes for your scan results next week we all like to have scans but dread results
Hi Julia I’m starting 4th cycle of cape hopefully its working ok skin mets are much calmer. Hope your fungal problem is much better and I hope they have been able to settle your blood and tempreature sending you hugs.
Janice we haven’t heard from you for a while I do hope your chemo is still helping to keep skin mets under control and that you are ok
Wolfie you have been quiet I bet those boys are taking up your time. I hope your chemo is treating you ok hugs to you.
Mo hope your met is behaving itself and you have not had any more I certainly wouldn’t wish that on you.
Bumpkin if you are reading this we love you and sorry if I haven’t mentioned anyone I didn’t mean to miss you out. Love to everyone xxx