Marirose - be thinking of you on wednesday.
Hi ladies
Hope everyone is ok??
I’m having a really bad day today… My skin mets are definitely growing again and I’ve noticed a red patch on my other ‘good’ breast now…
This means that gem/carb has failed before ive even had my 6 th cycle… Got an oncologist appt on Wednesday and scared of the outcome… Does anyone one know what I should expect? Do they normally take you straight off the chemo your on and put you into the next? Or do you have to wait? I’ve got no one to go with me and frightened to face it on my own!! Wimp in me coming out again!!!
I think it’s because my boys have gone back to school how and all I can do is sit around all day with ‘worse case scenarios’ going thru my mind… I just want them to operate and take all this crap disease out of me… But they say that’s not an option…
Sorry - I have been trying to be upbeat about this but it’s just got on top of me and I need to rant/cry a bit…??
My heart goes out to all those facing this c**p disease in whatever form…
A sad, scared Wolfie!!!
Hi Wolfie
I’m sorry to hear you so down and fearful. You’ve been doing amazingly well but we’re here to share your tears and to hear your rant. And you’re certainly not a wimp. I just wish I lived near so I could go with you to your appointment, but I’ll be there in spirit.
Bumpkin can probably advise you better about treatments but from my recent experience, if I’d been well enough, my onc would have started me on a different chemo this week - straight after stopping Cape. I’m going to try Eribulin next week, subject to having recovered sufficiently. Have you tried that yet? I think you should be able to get it because you’ve already had Cape previously, if I remember rightly? Apparently it’s quite effective against TNBC.
Thinking of you and all the other ladies.
X
Wolfie you are no whimp and you are within your rights to rant shout and anything else you feel like doing. You know you are amongst others that understand what you are going through we all sympathise with you
I am not in a very good place myself from 11 skin mets I think I have 111 now or it feels like it. I have a red rash covering most of my chest and upper stomach and it itches so much will be glad to see my onc on Wednesday too. I am sleeping badly because I am aware of the mets weeping and although I have a towel to protect the sheets I have not put a dressing on because they seem to be better without anything and the liquid coming from the mets smells.So if you think you are a whimp when you have 2 young boys to care for and no-one to accompany you to your appointment then I am a bigger whimp than you.Don’t be hard on yourself Lets see what happens next Wednesday for both of us.
Love to everyone else who may be having a bad time xxx
.
Hi ladies
Thank you so much for replying… Makes me feel so much better just knowing you are there… Tho I wish none of us were ‘here’ dealing with this!!!
Dbno - I am so sorry you had a reaction to Cape, I remember having anaphylactic shock to tax on my primary - not nice so I know how bad these reactions are… I am x’ing everything for you so that you can have eribulin next week… I was refused eribulin last time so I hope I meet the criteria next time… I had cape for only around 4 cycles before they stopped it saying I was NED… Came back very quickly…
Marirose… I’m sorry your going thru this… I seem to have mets all over my chest area as well, tho mine haven’t ulcerated yet… It feels like I have a very tight elastic band round my breast area tho I don’t/can’t wear a bra anymore… I like your way of thinking tho, being glad to see oncologist, I was dreading it, but I think I may change my way of thinking and be glad when I see her to try and sort it… ?
At least my boys are at home now over the weekend, will take my mind off things and I can have loads of cuddles with them… Missed them when they went back to school this week… ?
Thoughts with everyone dealing with this…
Wolfie xx
Hi Stresshead hope you are reading this I was wondering how your scan went you are in my thoughts quite alot because your mets sound very much like mine has the eye ointment worked and the iodine I am interested to know. You haven’t been on here for a few days and I was getting worried.
Love to all x
Hi Wolfe sixsirycti hear you are going through a bad time. You rant away lady we are all here to listen. Key us know please what the inc says. I’m also due an onc appointment on Wednesday I don’t think the carbo is working for me as an now in hospital. Having a drain to my lungs. V unpleasant l. Thinking of you. Ss
Hi to all,
Marie rose…thank you for your thoughts. havent been on for a few days as in pretty bad place at the moment…more in a sec…
Wolfie…rant and rave s much as you like…we are all here for you.
Rather than reply to each of you i’ll just give you an update:
Have been really uncomfortable lately with mets hving spread to my side and houlder blade. The iodine and eye ointment helped…its called Chlorarphenicol 1%. I have been uing bio oil on the dry skin.
The mets are no longer lumps and nodules but solid masses of quite a size and my bad ‘breast’ is bright red and rock hard. I too also fear that it has now gone acroos my sternum into my good ‘breast’.
Following scan on monday went to see onc on Thursday. The written report wasnt available but he and his registrar had checked the pictures and said there was no evidence of anything in my organs. however when he examined me he was shocked at the rapid spread and the atmosphere changed. He basically said that erubilin hadnt worked, which i’d been saying for weks ( went 10 weeks without actually seeing my onc due to him running late and his holidays…lucky him…we havnt had one and cant see us getting one). He said eventually this would spread to my organs. I had previously mentioned to the registrar about having the e/e combo but was informed by my onc that some of the biospies done in April were triple neg so this and other hormone treatment were no good. I couldnt believe what i was hearing. This had been known since April and noone thought i ought to know. So, i went in thinking i had several options to go at and came out with virtually no hope. I am now on weekly taxol(but i could tell that no one thinks it wil do any good.):he said to start it next week but i asked if i could have it immediately and the chemo unit agree. Have been ok regarding side efects so far but early days.biggest problem at the moment is living in pyjama tops…the only thing i have that are cotton and loose fitting. When i do get dressed its agony to put a bra on and i have very few clothes which cover the mets on my chest…all ads to the eelings of desolation, desperation etc. from your recent posts it seems as if we are all virtually in the same boat at the same stage…i’m not glad you’re there with me but i’m so glad you are, if that makes sense. I don’t know what i’d do if i didnt have to ladies to talk to. Sending you lots of love and hugs.xx
Hi ladies - I’m so sorry everyone’s having such an awful time. I feel the same about not wanting anyone else to have to go through this but it is a great source of comfort to be able to talk to other people who understand and the information sharing is invaluable. Had it not been for my correspondence with Bumpkin last year my mets would have been much worse.
Bumpkin - I hope you’re doing OK.
I’m thinking of you all.
X
Dear stress head huge hugs and keeping everything crossed this will work for you. Xxx
Hi Bumpkin - whatever makes you feel better go for it. Yikes! I’ve seen Marathon Man, that’s really not good. Have you tried Sensodyne Repair and Protect? My teeth became very sensitive and when I started using it at first it was painful brushing them but they’ve settled down now. It only took a couple of days for them to improve - worth a try.
Fingers crossed you can get straight on the trial.
XX
Hi stresshead…
I’m so sorry you’re having such a c**p time at the moment… It is so wrong that no one has told you about your biopsy showing TNBC… I have been TN since diagnosis but have always been told this… hormone treatments and herceptin unfortunately don’t work on us… They are however doing loads and loads of research on TNBC, we have just got to hold onto hope… There is a Triple negative thread on here as well if you want to read up on that…
Like bumpkin says I wear vest tops now, no bra as too painful… It’s so much more comfortable.
I am keeping my fingers x’d that taxol works wonders for you and that the se’s are not too harsh…
take care of you and yours…
Big hugs
Wolfie xx
Hi all
Just finnished washing sheets vest tops nighty all because of the smelly discharge from mets got to find something better for the night time as anyone tried genie bras? I really am not sleeping well so concerned about the mess. I notice most of you are TN I’m not can the met ulcers clear up I hope so. Bumpkin you say rad dries them up I don’t think I could have that because I have had radiotherepy in that area.
Bumpkin I just love your way of thinking you are so positive considering what you are going through enjoy your gin.
Enjoy the rest of the day love to you all xxx
Hi Bumpkin
I have seen the practise nurse this morning she was supprised how much the mets had ulcerated. I told her that I had managed to dry them a little but because I had to go out on Saturday night I put a dressing on and it has flared up again. I had brought a genie bra which I got on her reccommendation last week. I am now size 10 but bought size 12 I agree they do seem tight incidently I once bought some years ago when they first came out didn’t like them and gave them away. I have been really suffering I got the rash of what looks like small mets stretching to my other breast and then to get this new rash which looks like a nettle rash it’s all over my chest and top part of the stomach and itches so much. The nurse says it looks like shingles but it can’t be because shingles don’t itch. Thank goodness I see my onc Wednesday I am going to ask about MacMillon wound management it’s driving me up the wall and I am trying not to think about ‘C’ spreading. Well I will keep persevering for now xxx
Hi all
Well the genie bra nearly went in the bin in the middle of the night I couldn’t stand the straps so I rolled it down it still held the big pad the nurse gave me so I thought I was safe but no somehow the liquid had seeped onto my nighty and so again both had to be washed.
Will it never end just tomorrow to go for the onc now.
Wolfie how are you doing I’ll be thinking of you tomorrow.
Stresshead my thoughts are with you too not forgetting SS and DBNO
Bumpkin you have been such a help and tomorrow I shall ask about Medihoney.
Love to all xxx
will
Hi ladies
Marirose - I’m sorry you’re having such a rough time at the moment… Only one day to go until we both see the oncologist… My skin mets are not ulcerating - just bright red and have gone back to being thick under skin - like leather… They hurt and I’ve had to go up on my pain meds…
I’m still scared about seeing oncologist tomorrow… Think it’s because I’m in my own, and dreading the bad news…?
Dbno - I hope you have managed to have your chemo this week and that it will start attacking those horrid aliens…
Stresshead - hope your ok?? Thinking of you…
I know there are a few of us ladies seeing our oncologists tomorrow… I wish you all the best and my thoughts are with you all
Hugs and hand holding to all who need it…
Wolfie xxx
Hi Ladies - thanks for you kind thoughts.
I saw my onc today. I’m still not well enough to start the new treatment this week so it’s postponed till the end of next week. Fingers crossed. On the up side, I feel a lot better in myself today. I just need to be able to sit up, stand and walk a lot more than I can at present…and of course, there’s the dreaded constipation to get under control. Wouldn’t you think we could be spared any extra problems!
Wolfie - sorry to hear you’re in a lot of pain. I hope the meds bring it under control. I’ll be a virtual presence with you at your onc meeting tomorrow, holding your hand and giving you a hug. I hope the news is better than you’re expecting.
Marirose - good luck for your onc meeting tomorrow as well. I hope they can get the ulcers under control soon.
Bumpkin, Stresshead, SS, Janice and anyone I may have missed - thinking of you all.
X
Hi ladies
Stresshead… How are you?? How is the taxol treating you??
I’ve just been to see my onc… She confirmed what I thought that the carbo/gem is no longer working… She has changed me to Eribulin… Staring this Friday… Is anyone on this?? She says I won’t lose my hair but it will thin. Any other side effects that I would be aware of??
I scared now tho as gem/carb only worked for 3 cycles… And that I’ve had to move onto a different chemo so soon…
Marirose - I hope your appt with your onc has gone ok and that they have suggested something to help with the mets?
SS - hope your appt has gone well too?
Dbno - thanks for your post… And it help me knowing you where ‘holding my hand’ in a cyber way… Thank you!! I’m so sorry that you can’t have Eribulin this week… Here’s hoping you will be ok for next Friday…
To everyone else on this thread wishing you all the best and good luck with any results or chemos…
Wolfie xx
onc appoinment didnt go well or badly. they said it was too early to say if the carbo was working. they are going to arrange an appointment with the brompton to get their advice on my breathing. had my second cycle today so will just have to wait and see. SS xx
Hello to everyone
The oncs registra came to me singing the glory of my last MRI before she could say anymore I said Hang on look at this. She was shocked and said she would have to fetch the onc in. When she saw my chest she couldn’t belive it after a disscussion they said it wasn’t shingles but it could be something else that I cannot remember the name even though I said it over and over to myself I’ve googled but cannot find it. Anyway she said she didn’t think it was cancer related but couldn’t rule out that it could be a se. So they have decided for me to leave everolimus alone for 2 week take antibiotics and antihistamine. She said they would decide in 2 weeks whether would need to go onto a different treatment. I was put into the hands of a nurse who took swabs and dressed the ulcerated mets. She was really good and told me to ring them if I had any more problems and they would help me out. She gave me barrier cream and a strange dressing which feels great.
Wolfie you have been on my mind all day I hope Eribulim will work for you.
SS hope Carbo is being kind to you
DBNO hope you will be able to start your new treatment soon enjoy feeling good for now.