Good morning all
i am back after another bout of pleurisy which meant three days and two nights in hospital. I now have four weeks of steroids to take to strengthen my lungs so may take up some weight lifting as well to make the most of them. The list of mental health side effects is unbelievable! I should probably stay in a padded room alone but with everything I want given to me as soon as I want it to avoid the anger issues 😡😡.
It is four weeks since I was taken off taxol and avastin and as you all know, it is a worrying time when you have no treatment in the pipeline or can't have it because you are not well enough. Tomorrow I am off to UCLH to meet the consultant in charge of a trial which is recruiting triple negative patients. I am very much hoping I can get on the trial.
Here's hoping we all make positive steps forward this week, getting the treatment we need, both clinical and emotional. As to family and friends who should be supporting us but aren't, they will be thinking of us and feeling guilty and may want to get in touch but are worried about the reaction they may get. We can either reach out to invite them to come over or leave it be and concentrate on the wonderful friends and family who are supporting us. My little brother is coming today, taking a day off work. My eldest brother who retired at 56 in July has not been in touch. But, I do know he cares about me, he just can't deal with it. I will email him soon to tell him I am still here and to get his ar$e over here.
Time to get up! Hoping all of you have as good a day as possible.
Hello ladies, I'm awake late tonight.
That's so sad that close family would turn their backs on you when you most need them. It may be hard for them to cope with but how hard do they think it is for you? I'm very lucky because my brother really goes out of his way to help me, nothing's ever too much trouble.
Wolfie - I hope you're getting on OK after today's dose and that you have as few side effects as possible. I saw a fascinating little video clip on the Southampton University Immunotherapy website which shows killer T cells that have had their killer instinct turned back on via the immunotherapy vaccine and this one cell is wandering around and in seconds it eats a whole cancer cell then promptly moves on to the next. This is what I'm imagining your Eribulin doing. Check it out it's at: http://www.southampton.ac.uk/youreit/#immunology scroll down to the video called Immunology: Cancer Assassin.
SS - I hope your breathing improves soon. It must be very distressing when you're struggling to breathe.
Bumpkin, Stresshead, Marirose, Janice and anyone I've missed - thinking about you all and hoping things are improving.
Cyber hugs to everyone ((()))
Hi ladywolf. yes, he was great. However, just like you my sister has completely dissapeared - refuses to take my calls and will not speak to me since my illness. I also thought we were close. You just dont know how people will react. `i lost 3, what i thought ,were close friends as well. e all seem to be going through a rough patch at the moment don't we. Lets hold cyber hands to give each other strenght through these difficult times xxx
Dear Stresshead so sorry to hear things are not working for you at the moment. Has your onc looked into trials? In the meanwhile I am here thinking of you and sending you all the best possible positive vibes. My breathing is still **bleep**. but just about managing. Glad I am off work as could not cope with that at the moment. Had my brother stay with me for 4 days and he looked after me like a mother hen So sweet.
Stresshead - I hope the Taxol works for you. I can understand you wanted to find out for sure what status your mets are. At least then they'd have a better idea about treatments.
Wolfie - will be thinking of you tomorrow. Best of luck with the Erbulin.
Best wishes to all the ladies. I hope you sleep well, or as well as can be expected.
Hello ladies..have just caught up with the thread..apologies is i miss any one out.
SS..welcome...your input is always valued wherever yo post.
Ladywolf...so sorry ti hear gem/carbo not working. It seems none of us are having much luck with anything at the moment. I had erubilin which didnt work but i'm sure it will be different for you. I didnt have many side effects apart from fatigue and my hair just thinned a little bit. Have had 2 parts of the first cycle of taxol...cant see any improvement bt not sre if its any worse. I have so many mets now it is virtally impossible to monitor. I have asked for more biopsies to determine my er stats, as i now seem to be both + and -!! as my next move was going to be everilimus(??)..i know its given with a hormone therapy so not really sure if it works on er-. Very scary that these treatments all seem to be failing so quickly with very few options to go at. As
DBNO says...i too have withdrawn from 'normal' life..i have nothing in common with anyone any more and i too feel like i'm on another planet. I do fel gilty thogh because all my friends still keep texting and asking me to meet them or to visit but i st keep putting them off.
Marie rose...i sympathise with you over the rash but its promising that they dont think its cancer related. I seem to notice more and more redness..at the moment its creeping p to my neck and at the top of my arm..its also very hot. My mets started with a rash so i'm beginning to panic.
Janice..please rant and rave as much as yo like. We all get down..i seem to be more down than up at the moment....i have a battle in my head: one minute i think something will work for me, the next i think 'i am dying' but somehow its not registering. I dont know how i'll cope if another treatment fails quickly.
BUmpkin..how are yo doing?i do try to take your advice and not let this thing get on top of me but i do find it difficult. Please keep posting ..you are an inspiration.
Love to all and anyone else i've forgotten. xx
Janice - please don't feel you shouldn't share your feelings. It's when you're down that you probably most need the support. I'd hate to think of you feeling down but keeping it all to yourself. I've withdrawn a lot from my friends because I just feel like I don't really fit into their world anymore. We live in a parallel universe and I'm so grateful to have you ladies to talk openly to. So, if you really don't feel like talking, that's okay, but don't avoid it because you're worried about us.
Marirose - that's great that you now have another nurse who you can rely on. I must admit, I find the care I get from my oncology unit first class (not my home area though, I had to move to a different unit because of the despicable oncologist in my own area).
Wolfie - we'll be able to compare notes with the Eribulin.
Best wishes to everyone else.
Hi everyone I do hope you are feeling a little better today.
Jan I am sorry you are feeling low I can understand where you are coming from to be told your future treatment will be your last must be awful it is bound to make your thoughts go all over the place lets hope it's a long time coming before you need it sending you loads of Cyber hugs
SS you are very welcome to join us (not for skin mets though don't wish them on anyone)
DBNO,stresshead,Bumpkin and Wolfie and anyone else I have missed I am sorry
This morning I had an appointment to see practise nurse.I didn't really want to go but I needed help with the dressing as I hadn't put it on correctly. I was very down I feel I am rotting from the outside as well as the inside my ulcerated mets look awful and now 2 more look as though they are going that way. No treatment or bone juice for 2 weeks would that cause more trouble. I had an app for the practise nurse I didn't feel like going as I had more help from the hospital nurse but I am so glad I met a nurse that sympathised and she prescribed me lots of dressings and advice she was great. I got there in the end. Hope you all have a good weekend xxx.
SS - of course you can join in with this thread. We all have mets, whatever sort, and if it helps you to share your feelings here then go right ahead, we're all here for each other.
thank you girls it is a relief to be able to share our rants. Wolfie so sorry to heat about carbo. i have heard good things about eribulin though. fingers crossed. have you sorted out your wig? I really shouldn't be writing on this thread i i do not have mets to skin - lungs liver and bones, i hope i can be a guest on skins met though SS
Good evening ladies
Ladywolf - that's a real blow about the Gem Carbo no longer working. Eribulin might be the one to keep you stable though.
Marirose - the fact that your onc doesn't think it's spread of the skin mets is promising. I hope the antibiotics and antihistamine get the rash to settle quickly. Good news too that you're getting help with the ulcerated mets.
SS - I hope they can get your breathing sorted soon and that the carbo is doing it's job.
Bumpkin - I hope you've had a better day today. I notice there's a new series of Poldark coming up soon - something to look forward to.
Wishing all the best to the other ladies.
Hi again seems I'm writing too much
Stresshead genie bras are those that go over the head and are stretchy and thats where mine went when I got home over the head. It was good though Bumpkin for being examined as you say it was easy just to pull it down.
Jan hope you are doing ok with your treatment.
Anyone I have missed I am sorry bu I wish you well Thanks for putting up with me xxx
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.
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
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.
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
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
I have previously had radiotherapy on both breasts. I can only have skin mets done once and have had it on two different areas on skin that was radiated two years ago. It does help. I find even genie bras too tight. I also bought a size 22 stretchy bra top from Marks and even that was too tight. I am a size 10/12. The other great thing about tight stretchy vesty tops is that you can peel them down at check ups, rather than strip off.
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
I think we have similar mets. Mine are large and ulcerated. Please stop wearing bras and get yourself some soft and stretchy vest like tops. You can wear loose fitting tops over them. I have lots from different places and they are good enough to hold non adhesive dressings in place. Can you ask for some radiotherapy to help dry some of them up and reduce the pain? I had some a couple of weeks ago and it has helped me.
DBNO. Thanks for the tip, I am already a sensodyne girl. I think my gums have been badly effected by the placitaxel and avastin, so I have to look at a chemo break as an opportunity to recover. Just nervously drinking tea through a straw with my head on one side. The pain goes up through cheekbone and into eye socket so it is very unpleasant.
Time for The Archers shortly, not liked by some but it is by me, as long as my farmer husband can't hear it and comment on what they are getting wrong!
I hope everyone finds something nice to do today. Some good drama on TV tonight.
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.
turns out there is a way to shut me up. I have been floored by monumental, screaming level mouth pain. Half my teeth are beyond sensitive. Everything sets it off. Has anyone seen Marathon Man? I now know how Dustin Hoffman felt, or how he would have felt if his pain had been as real as mine! I am getting through all manner of pain relief and for some reason Difflam makes it hurt all the more. Even water is painful. However, with the screams loud enough for Police to be called (if anyone lived close enough to hear me!) my husband is dosing me with gin and dubonnet. Recommended. But not before teatime. Doc on Monday.
Saw my onc on Thursday and am very grateful for no organ involvement but many more lymph nodes and skin mets so have been taken off placitaxel and avastin. And now am hoping for a clinical trial as my onc says after seven drifferent regimes he only has vinorelbine left and does not hold out hope for it. So he will write to the BAL101553 trial, the only one I could find where I fitted the criteria and was not made ineligible by exlusion Criteria.
So I shall be flying on a wing and a prayer until I can get on a trial. I am not scared in the least because fear and stress does feed cancer. Flush fear down the loo, ladies, where it belongs. When it comes, I escape into something nice. The mouth pain is totally pants but on the up side, I am lolling about on the bed being waited on.
Find the joy.
we all have so much to face, it is lovely to come on here to support each other.
I would be interested to know which of us with skin mets is not triple neg. there does seem to be a correlation.
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.
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 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
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
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.
Hello Marirose, thanks for asking. Actually just come back from the hosptal today as the breathlessness was getting worse and I was getting a bit scared. They are going to do an ultrasound on my lungs tomorrow to see how much plueral effusion there is and if there is enough (?) they will drain it. I must say I will be relieved as this breathlessness is getting me down and stopping me from doing anything. The doc did say that the plueral effusion causing me more breathlessnes is not neccesarly a symptom of the cancer getting worse it could just be that is particulary irritating. Not sure about that we'll see. Anyway going to spend another day at the hospital and may have to stay in overnight. Worth it though if I can get a reduction on the breathlessness. Marirose the se from your mets do not sound good. I remember I had an ucerated wound once from a liver ablation that got infected and the Marsden used to dress it 3 times a week with a silver compound that they pressed right down inot it , they also said they used medical honey as well. Just a thought. Much love to all xx
I would like to thank you all for your help I found the dressings make the tumour area and the cluster of the biggest mets have well and truly ulcerated I think trying to dry them seems to be the best method. The itching seemed to ease a little but now my breast is now covered with more mets can't wait for Wednesday.
SS how did your scan go we haven't heard from you for a bit I do hope you are ok
Flo I do hope cape starts to get easier for you it really doesn't help when something that is supposed to help you causes so much discomfort and makes you feel worse
My love to you all xxx
Marirose - the mastectomy didn't stop my recurrence.
Sorry to hear everyone's having such a rubbish time. My main problem has been the intolerance to Cape, which I'm still struggling to recover from. Just when I think things are improving I have a setback. I'm hoping to be well enough to start a new treatment next week because I hate delays in treatment when I know the mets are spreading but I'm so worried about how I'll react to it.
Stresshead - I hope your onc meeting went well.
Sending good vibes to you all.
Don't beat youself up about not having a mastectomy Marirose, I had one and still the cancer came back.
About the creams being used, I find my Mets are worsened by using any kind, seem better if just left to dry, when they do that is.
I never realised this kind of skin Mets existed until I had them, makes it worse being able to see them.
It is called Medihoney barrier cream and you can get in online but your doc should prescribe for free!!!! And I get my coconut oil at Holland and Barrett where it comes solid in a big jar that lasts for ages. I also use is as a deep conditioning treatment for my hair, before washing, once a week, as a cleanser at night of makeup and then you don't need a moisturiser after, as a massge oil on my husband's back and the cat loves it and it has done her fur no end of good. She is eighteen. She is a bit bonkers too and it helps with that!
What a lovely lady you are. I am not sure how to use a computer properly with pm's although I have had a look and I think I could do it. Can you buy the creams and coconut oil from Boots? Now that the dressing has been on a while the itching seems more in the breast as I have another tumour there I now am starting to get concerned I shall be seeing my onc on Wednesday. I really wish I had gone ahead with a mastectomy 19 years ago but was talked out of it by a registra. Too late to let that bother me now I'm fighting another battle and this time I have Cyber friends to chat with who give me lots of information.
Thankyou everyone xxx
Now I must join Nurse Marie at the cafe I loved your post x
Hi Marirose, sorry no experience with skin mets. As far as medical staff I think I have the best and I'm afraid the worse. All I can offer is I will get my (dressing up )nurse's uniform try to put on a dressing for you and then pour us a glass of sparkling wine to watch the sun go down. .We can then do a bit more planning for Saturday's big event. Take care Marie xxx
i am so sorry you are going through this. I have so many types of dressings provided by the district nurses who ring me regularly to see how I am and couldn't be kinder. Do you have Macmillan nurses you can contact? One came to see me to help me with pain management and anything else I need. Obviously skin mets are unusual but kindness and understanding shouldn't be. I have mentioned some particular dressings in this thread, or PM me and you can go in there and ask them to order them for you. For free, of course! I also have a honey barrier cream they gave me which really helps with itching, plus I use virgin coconut oil at night to help.