Marirose - so sorry to hear your bone scan results weren’t what you were hoping for, and also a potential skin met on your spine. I hope it proves not to be.
Wolfie - it’s lovely to hear about your plans and the things you do with your boys. You’re clearly a wonderful mum and they’re gaining lots of amazing experiences. How lovely to be getting a puppy. That will certainly keep you all occupied and a nice distraction, plus dogs are such great company and give that bit of encouragement to make an effort to get out for some exercise when perhaps we might not otherwise. I borrow my brother’s dog, who has come with me to my house for a few days.
The Eribulin is working fpr me but I need to keep on track with treatments as the skin mets grow back when I have delays, though I’ve managed to get both my days 1 and 8 this time. How are you getting on with it? Do you have many side effects and can you notice any reduction?
Cress - your pug sounds like a great companion.
SS - what would life be if we didn’t have dreams and something to look forward to?
To the other ladies I haven’t mentioned - thinking of you all and wishing you good things with treatments and scans.
Marie rose,so sorry to hear your results wern’t good and i pray the spine met turns out to be nothing. Thanks for the oinfo on carboflex…i’ll ask the nrse anot it later. My lcerated mets seem to get better one day ythen the next i’m back to sqyare one. Italso leads me to believe that if they are not getting any better that is another indication that the taxol isnt working… I am going to ask my Onc on Thirsday if i can also have avastin …really dont want to have to have to try the next thing as i think that is about my last option. Just want to get through christmas…its also my daghters birthday the week before and she loves this time of year. Sje has enogh to put up with without more bad news about me. Yet again i am also dreading New Year…i remember going through all of this last year so in a way i should be grateful i’m still here to worry…what a way we have to live our lives!!
Ladywolf (and anyone else) Can you tell me how you manage to go abroad with these awful mets…have yours not ulcerated? at the moment i am having mine dressed every other day.What do you tell your insurers…i assme you se Eurotunnel?? Your boys will love Disney…in fact when we went i think ilovedit more than the kids!!
Dear Stresshead
My ulcers have been dry again since last Thursday the rest of the mets seem to be settling down I hope I am not tempting fate again. The bath does seem to be helping with a dry dressing after. The scabs are red and sometimes feel aa though they will break again but so far so good. I may try to sleep without dressings.
The spot on my back is difficult because I cannot see and I am relying on others to see what it is.
Oh I hate the way this decease is making me suffer these unsightly sores.
I hope you have a lovely time with your daughters birthday. We must enjoy our time with our loved ones.
Love to you all and thanks for your concerns xxx
Marirose I’m so sorry your bone scan results… I’m keeping everything x’d that your treatment starts blasting those little bu**ers soon… Sending loads of cyber hugs…
DBNO - I’m so glad eribulin is working for you… I have the gsf jabs so always seem to be able to have both day 1 and day 8… Have you asked you oncologist about them?.. Eribulin seems to be keeping me stable at mo, according to onc… Got scan tomorrow, but I’ve refused to have the results until after Xmas (appt on 6/1) I couldn’t face bad news just before Xmas… SE are minimal… Feel abit tired for couple of days but that’s I… Hope your se aren’t too bad??
We had a lovely time at Disney… My eldest even dragging me into a rollercoaster!! I’m not that brave a person so just kept my eyes shut and screamed - lol!!!
Our new family memener arrived yesterday… She such a happy little puppy and is putting up with all the excitement from the boys… I think I’ve made a good decision!!
Bumpkin - hope your trial is going well?
Stresshead - did you hear about trial? Regarding your question re insurance… I had family insurance before I was diagnosed… (With the police federation)… They will now cover me but only for non breast cancer conditions… I have an ehic card which covers me for treatment in EU countries… And tbh if would be cheaper just to get the emergency treatment and fly home on my own steam… So I take the risk… I always ask my oncologist is she feels it would be OK and so far she has agreed.?? I won’t stop going, but just err on the side of caution slightly…
I hope everyone else is ok… And looking forward to the Xmas period - Stresshead I hope your daughter has a.lovely birthday…?
Hi Wolfie - great to hear that you had a wonderful time at Disney! Sounds like your puppy has settled in well already. You and your boys are going to have a lot of fun with her.
I can’t believe it but I forgot to mention the GSF injections when I saw my onc last week. However, my auntie told me about someone who ate lots of haggis to boost her neutrophils so I Googled about foods that boost them and it said folate does it. I’m now eating even more veg and other foods containing folate - in fact a friend/former colleage just popped by for a visit and brought a bag full! In case you’re interested, it’s foods such as: papaya, avocado, strawberries, raspberries, broccoli, brussels sprouts, pasta, almonds, sunflower seeds and so on. Always worth a try and it’s healthy foods and doesn’t require taking supplements.
I don’t blame you for not wanting scan results before Christmas. Just enjoy the festivities. I’m so pleased to hear that your SEs are also minimal and that it’s keeping you stable.
I hope Eribulin and other treatments are proving effective and kind to the other ladies.
I have my computer back yipee now I can read properly what I have wrote I only have a little phone and it has not been easy.
Wolfie it is so nice to see your excitement for your Disney experience it sounds as though you all had fun. Then to have your new puppy what a lovely time you all must be having. I can understand why you want to leave your results for after Xmas.
It’s nice to see the Elibrulin ladies are doing well. DBNO I like your new diet bet it would help my constitution I am going to take a closer look at it.
Stresshead I do hope you are ok it is hard when you get it in your head that treatment isn’t working. I often start to question different feelings today has been hard I have had a stabbing sore feeling over my ulcerated tumour mets although my dressing is again clear. Now because of bone scan results when my knee has been getting spasms all day and I have had difficulty walking even with my rollator your mind starts working over time.
Bumpkin I hope you are doing ok and the tials are productive also all the other ladies good luck to you all.
Anyone who I haven’t mentioned you are not forgotten love to everyone xxx
Forgot to mention the tissue viability nurse put a cream on my repeat prescription. Baineum cream with 5% Urea has anyone heard of this it’s for dry and very dry skin. I know Belinda is very knowledgable with different creams. The reason she prescribed it was because she looked at all my medication and noticed E45 she said it was much better.
Bit of a silly question, but do any of you have cramp like pains in your feet and hands? I feel like my bones are crossing over and sometimes my toes stick out at weird angles… I’m just wondering if this is just me or is a side effect of the chemo…
I hope everyone is doing well… And wish for a good weekend for us all…
Hi ladies, hop[e ypu are all wel and enjoying yor weekend despite the awful weather.
Wolfie…i have had leg cramps and sometimes my fingers and toes ‘lock’ . cant remember when it started bt as others are getting the same thing i am assuming its trratment relaterd.
Talking of treatments i had yet another blow when i saw my Pnc on Thursday. Yet agsin the chemo (taxol) hasnt been working. The breakdown on my reconstrction finally convinced him. I asked if we could combine it with Avastin as we had previously discussed. He went away and came back to telll me i coldnt have it as the CDF had only licensed it as a first or second line treatment and i’m on my third. Realy ****'s me off.this could haver been the one that worked and some bigwig who has never had anyone suffer from this awful disease says i cant try it. I have been put back on cape…rekember when i had it first time round, when i was nowhere near as bad, and was told i coulnt stay on it!!!
The dermatology consutant also gave me Efudix cream (floraracil) to try. I feel like no one knows what to do next. I have got an appoinment next week about electrochemotherapy bt i’m not holding out much hope. To make matters worse my OH has completely withdrawn…finds it difficult to see everyone else enjoying their lives while we are dealing with this ****. . as we all do but we try to carry on as best we can for others don’t we.? We were supposed to be meeting friends later.a long standing arrangement…and he has just said he’s not going which makes things all the harder for me. My day ruined now!!
Sorry to be so negative but just had to have a rant…i know you all understand. xxxx
I do hope your weekend got better and your OH sorted himself out. You don’t need upset at home when you are suffering with this decease.
I was interested to see you got the flurouracil cream when I asked my onc about it she said she didn’t know of it and it was in the everolimus or something like that. But she also said she had never heard of imiquimod I must admit I am starting to lose faith in her for real help. I seemed to have had to look for help myself.
But on a positive note my skin met ulcers have improved the small ones healed weeks ago but the 2 big ones that were on a group of mets and on my chest tumour have skinned over and also after my bath the other night I saw some white among the bright red mets and realised it was white skin. I haven’t seen white skin there for months it’s been sore and red. I cannot say it’s because I have started cape because I am only on my second cycle and I look as though I may have them starting on my back. I have stopped putting a dressing on because I have had over a week clear. It makes me feel so good.
Talking of dressings the 2 dressings were not a mistake the carboflex and aquacel go together which I should imagin they will be quite thick together.
I do hope they can sort your treatment out Stresshead we rely on the onc’s to know what is best for us but sometimes we would like to be listened to.
I do hope our other met friends are doing ok and your treatments are helping you. I hope you are getting your Christmas preparations completed I have never felt so deflated about it as this year I hope it will change.
Marie rose…thanks for your reply. I did indeed go out withot OH, had a few tears bt then had a brilliant time in spite of him rahther than becase of him.I’m so glad yor ulcerated metsare still improving. Mine seem to be getting worse…they are very big, very red and raw and still exdating. ISorry to be graphic bt i can smell them although all the nurses say they cant and that they are not infected and ‘as they shold be’.
I too have had to do all the research etc myself…seems like i spend all my time loking at different treatments/research/trials. Trouble is now i have so many thumbs in different pies its getting hard to keep up. My Onc isnt awaRE, AS Far as i know, that the Dermtologist has given me flouraracil cream (she said i cold have this and immiqimod if i wanted) so not sre how that will go down… I have left one area untreated so hopeflly we can see whether its that working or the cAPE…assuming any of them do!!
I know what you mean about Christmas: its so hard to get motivated isnt it. More than that i’m dreading New Year yet again. Think we’ll have to take a leaf out of Wolfie’s book…she is so positive and determined, especially when it comes to her boys…
Wolfie…hope yor private life is now on track and you are happy and able to concentrate fully on your boys.
Bumpkin…hope everything is ok with you. Havent seen you posting for a while. I think of you all the time and hope whichever trial you went to is working for you. If you are able please let us know how you are doing.
I may have asked this before but as i’m now back on capecitebine i wondered if any of you have had this in combiation with any other chemo. I had it first time round with docetaxol but when i asked my onc he said there was nothing. I mentioned vinorelbine as i’m sure i had seen that mentioned before but he said he didnt rate that??
I hope everyone is as well as can be and not as behind as me with wrapping etc…my job for the afternoon!!
Thank you for the replies about the cramps… Nice to know it it a SE… And marirose we will be strange together ?
Stresshead - I asked my chemo nurse about avastin being taken off the cdf… He said it was but only in certain circumstances… And said that it could be used in combination with other chemos but only AFTER third line treatment not before . Obviously he is a nurse not onc so could be wrong but worth checking out, just seems strange that opposite… They normally keep the expensive drugs for the later options as with eribulin.
I’m sorry your OH is causing you worry at the mo… We all look at others and feel jealous of their lives… I try to think that we don’t know what goes on in other people’s lives and that we have no idea of issues which they face, after all we all put on a brave face … We always say we are ‘fine’ when anyone asks us, and obviously we are not… Life is very fragile, theirs may alter terribly in a few short seconds… Give him a very big kick up the bum and get him to enjoy what he has!! ??
My onc thought about giving me cape in combination with vinorelbine - said it was a strong option but went with eribulin instead… So we have another difference of opinion between oncologists… Said was a strong chemo for tnbc…
Thanks for asking about my private life… Unfortunately is still rough at the moment - like a bad smell lingering… I’m opening the windows to get rid soon - life is to short ??
Marirose - I’m pls your skin mets appear to be healing - it’s lovely to see bits of white skin where it was once red and painful… Here’s to seeing more white patches!!
I hope everyone else on this thread is doing ok…
I’ve got all my Xmas shopping done and all the pressies wrapped… Just need to get them down from the loft and in sorted bags for stockings and under tree… Will need to hide in the garage until Xmas eve… My boys getting clever now and hunting round the house… will have to be a military operation to get the stockings sorted and presents under the tree on Xmas morning before they get up… I think I’ve gone abit over board this year… They have 40 presents each (not as bad as it sounds - most are little stocking fillers)… Talk about spoilt tho ??
I’m getting so excited - finish school on Friday - so two weeks of family time - yeyyyyyy…
Only thing I have too do now is stop the dog from biting me - teething issues - any ideas Ladies???
Janice, hoep the taxol keeps doing the trick for you. I had 9 treatments (3 cycles) but my mets became ulcerated so the onc said it wasnt working and took me off it.
More devastating news for me ladies…having waited so long for an appointment re: electrochemotharapy (due to go tomorow), the hosp have rang and podstponed it. I have arranged anoyther appointment at a different hopsital and paid for a hotel and parking etc…i just broke down on the phone. They are supposed to be calling back but dont hold ot much hope.they just dont get it do they? They know i have a 3-4 hour journey and have waited for months.
I have now been back on capecitabine and using the flouraracil cream for almost a week and havent seen any improvement…in fact i think the mets have spread. The ulcerated mets are no better either…red raw, smelly mes.
Can anyone tell me what constitutes a result/improvement? do the lumps, rash, redness disappear?
is it if there is no more spread?
I’m sorry for the negativity and dont want to bring anyone down but i really feel down at the moment and cant see the point in keep fighting. thank you so much for listening. x
Hi Julie sorry no body has replied to you. I am having difficulty we have no broadband until the 29th.
Allow the antibiotics to work as regards the breast if your primary is in the breast it could affect the appearance my breast has shrunk and has a big crease in it my 2nd primary is in the chest wall but I do have a met tumour in the breast. Best of luck x
Stresshead please try a deep clear water bath don’t rub the towel you will feel much better. Let a bit of air get to the mets then use dry dressing if dressing sticks wet it with clear water to ease it off the ulcer. Your smelly ulcer will only smell to you. I wish I lived near you I would so like to help you. X
Sending Cyber (((hugs))) to all my cyber friends have a very Happy Christmas and Happy New Year to you all xxx
Marierose…thank you for your concern. Your advice about having a bath and then applying a dry dressing is exactly opposite to what all the nrses are telling me. I have been told the whole thing must be kept moist and covered. The TV nurse did say she was happy for me to have a clear water bath (which i do anyway bt a shallow one…cant have a deep one anyway as my line doesnt have a dressing on it becase they all irritate my skin) and then trickle a jug of boiled water over my mets and then dab with kitchen roll?? Trouble is i’m scared to do it but i suppose she knows better than anyone. The ulcerating mets are now infected agin so its no cape and more antibiotics…i just wish something would go right!! I am having my dressings done tomorrow so i may risk doing what you say tonight and see how i go.
Cress, thanks for the info you posted. I think i have seen a similar thing. We mst all be rarities as apparently ulcerating mets are rare but we are all sffering!!
As you probably know i’m looking into ECT. I have been told miltefosine is no longer available and at the moment i am using Efudix(Flouraracil) cream and my Dermatologist has said i can try immiquimod.
i have asked about the honey dressings but have been told they atre qite harsh and can sting a lot and also stick so are not very comfortable for open ulcerating wounds (same with sugar based ones). If nothing else works though i’m sure we’ll try anything. !!
Well i hope you all have as restful and pain-free Christmas as possible. Much love to you all. Will catch up in the New Year.
xx
ps…Bumpkin…please post if you are able to let s know you are ok. x
I just wanted to post a quick message to everyone here… To wish you all a merry Christmas and hopjng we all have the best time possible, putting this horrid desease to the back of our minds… … Here’s to the new year… fingers x’d that it is the best possible… ???
Hi all Merry Christmas
Cress thank you for your post I will read it better when I have my Internet sorted.
Stresshead I enjoyed soaking my ulcerated mets maybe it worked for me or maybe as my onc said today it could be the cape working she couldn’t believe how well they had healed. I suppose time will tell.
Wolfie I hope you have a great Christmas with your boys
Again everyone have a Lovely Christmas and certainly a Happy New year xxx
Didn’t get on the FINESSE trial, as my liver scores were out of range. So… it’s Paclitaxel for me. I start next week on the 30th - Happy New Year! It’s my first chemo and I’m dreading it! Anybody have some good tips for those on weekly Taxol? My course is 18 wks. How long, on average does it take to see some results? I’m scheduled for a baseline CT the same day after the chemo suite.
Best love to everybody finding the dark nights and excess joviality a bit hard to take sometimes.
I had 12 weeks of weekly taxol, very few SE but by the end I was exhausted and it took me about 8 weeks to recover any energy. I had the cold cap, I did get a couple of bald patches, one on my crown and one underneath at the back and my hair did thin but nobody noticed except me! I lost my eyelashes about a month after but they grew back very quickly and I kept losing strands of hair for about 6 weeks after. It was well worth having the cold cap!
My Onc told me I could only have 12 sessions due to the risk of neuropathy.
Glo