Thank you ladies for for kind wishes. Yesterday went quite well…i was really worried that with open wounds they would just show me the door. They think there are a couple of trials i may be suitable for, not necesarily the one i went for. COMPACT was mentioned. i had bloods and ecg…again got worried when the nurse did one, siad i’ll just take it to the Dr then came back and did another one. Back next week for a scan and take it from there so fingers crossed. BUMPKIN…yet again i owe this all to you…you are a truly wonderful lady.
Was pleased to hear yoi are happier with your dressings. At the monent i have got urgotol silver gauze and allevyn pads. I am also using polyfax cream given by the dermatologist. Think its trial and error bt the body bandages sound good…i’ll enqure about them. By the way, the nurse did say yesterday that he had had another lady in with dressings …could that have been you?
Belinda…like you i dont think my chemo is doing much. In too keep looking hoping to see a difference only to bre disappointed. I do so hope you’re wrong and that you are able to continue on eribulin,
WOLFIE…like DBNO i too have noticed you are very quiet at tne moment. Please post so we know you are ok…much love.x
MARIEROSE…i’m so glad to hear your mets are improving. I was under the impression that once they had ulcerated they would never heal so theres hope yet. My skin is red raw and very sore and itchy but everyone has told me not to bath and get them wet…conflicying info yet again.
Back to Onc on Thrsady to se if i can continue with treatment???
Hi Stresshead
I am so pleased you are getting more help with your dressings it does help when the people around you understand the problem skin mets can cause.
I was given allevyn life pads at the hospital in the cancer clinic they seemed great so the nurse at the gp’s ordered more for me but gave me a silver pads to get rid of the smell. Because I was getting sore I thought it could be the silver maybe I could be allergic to it. But it turned out to be the allevyn pads the sticky stuff was making me really sore so I now I have now been put on aquacel by the tissue viability nurse this pad has the silver in it. The body bandage is called tubifast and is great for holding dry dressing in place.
Hope you are all well love to everyone xxx
Morning all
Bumpkin can you ask your district nurse to prescribe your dressings for you. I get mine on prescription from gp nurse including the tubifast circular dressing. I cannot understand why you should pay for them.
Good luck for tomorrow
Wolfie we hope you are o.k we are concerned sending you cyber hugs
Belinda you are a tough lady you seem to tackle treatment so well no matter what is thrown at you. You are an inspiration to us all.
Best wishes to our Elibrium friends.
My second dressing is showing no sign of oozing from both groups of mets especially the one group over my secondary tumour. Makes me feel so much better.
Thanks for your concern… I’m fine… Just needed to take some time out… Had probs at home, not cancer related this time - more to do with men!!!
I’ve been to the oncologist today, says I’m stable so not brilliant but I’ll take it…
I have been keeping up with everything in this thread… Sorry I’ve not been around to add my support to all those who have gone thru some bad times… I have been thinking of you all…
I’m now getting back to my normal self, so hopefully will be posting more ?
Great to hear from you but sorry about the man trouble. They can be jolly hard work, can’t they!
I know you’d rather be NED but stable is good. No need to apologise for not coming on here for a while. Sometimes we just need to take time out to deal with other issues. I haven’t posted as much myself lately. It’s hard enough dealing with the cancer without having other worries/hassles. Plus, you have your boys to focus on as well.
You just take care of yourself and we’re here for you whenever, or for whatever.
Hello to the other ladies. Hope this week’s treatments are going well.
Bumpkin - I hope you’ve had your new dose and that it proves to be a good one in terms of side effects and overall effectiveness. Thinking of you.
hi girls start of second cycle of eribulin yesterday. onc says it is all stable wwith a slight reduction so sort of good news… still v wobbly on feet and breathing a bit better but still not too good. still cant leave the house! but have friend from luxembourg coming to stay on sat and dah dah lovely brother on tuesday.
talked to onc about compact trial and he knows the man leading it and says its a real possibility for me so things in pipiline as well. - thanks bumpkin.
stress - my onc told me they found an estogeon variation in my cancer that makes me resistant to a lot of their drugs BUT very suscetible to FULESVANT which will be the next one they do with me. could you be the same?
I have had a horrible week, Saturday had to go to hospital for chemo talk, Monday hospital again to have port fitted under my skin, had it done under a local, the injections were so painfully and the procedure took about an hour. Tuesday back at 9am for scan then long wait for what should have been my 1pm appointment with onc, did not get to see him till 3.45 clinic running late again. Then back Wednesday for chemo, couldn’t decide whether to use the cold cap or not but I was told that with taxol they have had brilliant results, not pleasant but am giving it a go.
My chemo is weekly so hope not too many side effects,so far so good,just hope it works.
Well that was my week,looking forward to a quiet few days now.
SS - that’s something positive - stable and some reduction. I know you’ll be desperate for a better response but you’re heading in the right direction. The ComPAKT trial sounds really promising. It’s good to have something else in the pipeline, just n case. That must be really hard and frustrating not being able to leave the house but I’m glad to hear your breathing has eased a bit. Enjoy the visit from your friend and brother.
Jan - sorry to hear you’ve had a hard week. It sounds pretty exhausting, both physically and mentally. Keeping my fingers crossed that the side effects are minimal and that the treatment works well for you.
Good morning to the other ladies. Thinking of you all.
Morning ladies, hope you are all as well as can be.
Wolfie…was great to hear from you…sorry about the man trouble but pleased its not C trouble. Stable is good so enjoy this time. Bet your boys are getting excited. My daughter is 24 the week before christmas and she adores the whole thing.
Marierose…thanks for the info on alleyvyn pads…i too get sore with anything sticky and try to use the non adhesive pads…trouble is surgery ordered wrong ones!! They also started to use cavilon cr Waseam on the good skin (acts as a barrier) and my itching seems to have stopped. I will enquire about aquacel.
Bumpkin…i’m fairly sure we were there together. I havent heard anything about a scan next week so now i’m a bit worried. Are they treating you at UCL on the comPAct trial? when i looked into it it said sutton which is really a bit too far …OH says one way or another we’ll get there. Sorry to hear you had such an horrendous experience on the train. Was also sorry to hear about the mets on your abdomen…i suppose i have that joy to come.
SS…sorry to hear you are struggling with eriblin se’s but its good that things are stable. I dont seem to be on anything for long enough to get side effects…it still worried me that no se’s means its not working although they say there is no link. Was very interested to read about the fulvestrant thing…would you consider PM’ing me with any details and the name/hosp of your Onc?
JaNICE…hope you are now less stressed. IWhenever i have a hospital appointment i just wrtite the day off and accept i will be there for the duration…then if things do go to plan (ha ha) its a bonus. Sounds like you are on weekly taxol? i havent lost my hair and havent really had any side effects…bit of achyness and nausea…dont think its working for me but i’m sure you’ll get good results…keep us posted.
If i’ve missed anyone accept my apologies and hope you all have good weekend. x
Hi Jan
Skin mets are awful I always say I am rotting from the outside as well as the inside mine have increased I used to be able to count them but now there are too many to count.
But we all need to put a brave face on even though they depress us on the inside I’m glad you started this thread because it gives us chance to talk with others who understand.
Stesshead have you tried a clear water bath it is so relaxing. My mets have calmed down since I now soak in the bath. I use dry dressings but also use Cavilon barrier cream. My ulcerated mets have scabbed but although I have had 2 clear dressings the couple on the tumour have spotted but only a little.
Wolfie I do hope you are o.k it was nice to hear from you but sorry you have man trouble. I hope your boys are o.k.
Love to you all including the ladies I haven’t mentioned I do think about you all xxx
Janice/Marierose…i have just finished my third cycle but have seen no improvement: in fact i think the mets are spreading. My onc was applying for avastin to see if i relapsed so maybe thats next?? aren’t many things left to try. i too feel like i’m being eaten alive and find it very distressing to have this constant reminder. Have just been to see my homeopath and she thinks its good that the mets are visible because oncs etc can see exactly whats going on and know if a treatments working …i see her point but think its little comfort to us when they can see them but cant seem to do anything to help us. Mine too are so extensive now i’m just a red blob on my stomach and an ulcerating mess on my chest. God knows whats going on on my back…so difficult to monitor. Havent heard anything from my trial visit which is also worrying me.
I did ask about a bath Marierose but was told not to get the ulcerations wet. I do have a waist high bath though and try to keep my dressings dry but its not the same…dont feel relaxed at all. I thought my dressings were helping and that my ulcerations were healing but have just been to have dressings changed and each time i go i see someone different, most of whom have never come across this. Very often i’m giving them insturctions. today my urgotol was pulled off and the lesions started bleeding again…have been dry for days!!
Dont wish to moan but even little things like this set me back. I too am so glad you started this thread Janice…dont know where i’d be withot all you ladies to turn to.
Sorry for the ‘downer’ and thank you yet again for listening. XX
Dear Stresshead what idiots to pull your dressing off when mine were bad we used saline to ease it off.i assume your urgotol is like my atrauman a mesh covered in vaseline that goes between the ulcer and the dressing. I had 3 different nurses who also were not sure about skin mets.When another retired nurse told me about tissue viability and I needed a referral from a gp. I mentioned it to one of the nurses who said she could refer me to them. The nurse came to my home and knew all about skin mets she was great and sent details of dressing to the gp nurses. I now can self refer if I need them.
Maybe you could try to get them to help you.
I really feel for you because its not only the unsightly mets but the soreness and itching and all round discomfort I am no where in the state you are in. Sending cyber hugs to you. Xxx
I’m sorry you all seem to be having a bad time at the moment… I do agree with you all it is horrible to be able to see the ‘cancer’… We can see it growing/spreading and for me it’s the not being able the forget about it, it’s there all the time for me to see… It also hurts me when I cuddle my boys, and that just breaks my heart…
Stresshead - hope you hear about the trial soon…
Bumpkin - hope the trial is going well.
DNBO, SS, Belinda - hope Eribulin is treating you well??
Janice - I too am very grateful that you started this thread…
Anyone one I’ve missed, I’m sorry (still trying to catch up)… I wish you all the best…
Still, on to the good things in life… I’m off to Disneyland on Thursday!!! Got to get the train at 0430 hrs… ? But im sooooo excited… The boys still don’t know we are going… How excited are they going to be ???
We’ve also decided that get a puppy!!! The boys have chosen a King Charles spaniel, and we are bringing her home after we get back from Paris…
You can imagine how hyperactive my little boys are at the mo, with Xmas coming and a new puppy… Didn’t get them to sleep until 2300 hrs last nite!! I LOVE being a mommy… ??
I hope everyone gets good news so that we can all enjoy xmas before facing the new year… Love and hugs to all…
Janice - my boys are 11 and 9… So still in the ‘really excited mode’ when it comes to Xmas… Youngest still believes in Santa… The eldest has now been disillusioned by his friends at school…
It is a double edged sword having young kids… I worry about them and how they will cope and what i will miss (but don’t we all worry about that with our families??) but it also means that I cherish every moment we have together… We laugh now more than I’ve ever done with them before… I leave the housework and other chores so I can be with them… time is so much more precious… I used to put this time off, cleaning house, gardening… Like most busy parents do, not now… And it has made us so, so close!! I work in the emergency services and know first hand how fragile life can be… I have at least got the opportunity to cherish mine… Just read that back and it sounds so ‘sloppy’ :-), not meant to be and I’m sorry, how I feel ?
To say im bursting with excitement about Disney is an understatement!! I’m like a little kid myself… ???
Janice - what I nitemare having to ring round and arrange your bloods… I get mine done via ‘health care at home’ - a nurse comes to my home to both take my blood on Monday and give me chemo on the Wednesday… It is so much easier, especially having kids… They ring me the day before and give me a time (normally with a buffer of around an hour)… Not sure if they can offer you this service in your area? I’m in Staffordshire.
Cress - your dog sounds brill… I’m so looking forward to getting ours… The boys have named her ‘Roxy’ and I’m reading ‘how to raise the perfect dog’ by the dog whisperer… Making the boys read bits too, they need to be responsible dog owners…
SS - I hope you starting feeling better soon… And that you can get your puppy - watch out for the puppy farms they are horrendous - is your brother looking after you??
Marirose/Stresshead - I hope your dressings are helping to easy the pain and itchiness from your mets and the chemo starts having some effect so you can get some relief… My mets are just big blotches at the moment, with a couple of lumps and some thickening… Luckily mine don’t itch… Just sore/painful…
Dear Wolfie
Lovely to hear about your exciting journey to Disney. Feel so pleased for you all you seem to have your priorities right and I wish your little family a lovely experience and the puppy will be a added bonus for your son’s.
Bone scan results day today will let you know how I got on. Have a good day everyone xxx
Dear Stresshead
I gave you the wrong dressing the ones that the tissue viability nurse prescribed are called CARBO Flex they absorb the smelly oozing stuff. The pharmacy put 2 boxes of wrong ones in the bag.
I’m not in a good place at the moment I got my bone scan results they are not good. I have 5 more lesions mainly in both legs spine and ribs. Another thing is I may have a skin met on my spine I got the onc and nurse to see what they thought they were not sure but are going to keep an eye on it.
