Morning everyone, thinking of those of us who are quiet at the moment, I hope you are all ok. X
I have just completed cycle one of Eribulin. Had my second half of the first cycle on Thursday. Still have hair at the moment. I have steroids infused and then 3 days of steroid tablets to start taking the following day. They have made me a bit bad tempered when I stop them! Only for a couple of days but on the plus side they give me a boost this weekend. My transfusion helped, bloods holding up, thank you for the dietary advice! No sickness tablets needed so far, bit of a dry mouth, using Difflam to hopefully stop any mouth ulcers. Just crazy mood swings and two days of fatigue after steroids. I will probably end up with an ASBO after chemo. 😬
Desperately checking primary but no real change yet. Not tracking my markers throughout this one as I might lose heart. Head in sand. Have a good, peaceful weekend everyone....clocks change too! X
Bumpkin thankyou so much for your information about the skin mets you are making me understand more about the mets I must admit I get confused when I try to google for information. My next step was to allow the air to get to the ulcerated mets by wearing a loose shirt while walking about the house but I must wait for a quiet day. The ointment was on my list for the onc Imiquimod, chloraraphenicol 1% and fluorouracil I can but try. I have got actisorb with silver and charcoal for the smell but after two dressings it made my mets underneath very sore well I think it was that. I shall be more wiser next Wednesday when I get my results and a chat with the onc and nurse. But thanks again Bumpkin for your help it is much appreciate
Also Wolfie and SH thankyou for your input.
Wolfie I think you are someone to be admired your boys are lucky to have a Mom who has the strengh that you have you all sound such a happy little bunch love to hear what you all get up to.
Stresshead I would love to know how you get on with finding out about that electrotherapy and how did you do with those biopsies.
Love to all of you and thinking about you all DBNO Belinda SS Jan and any others I have forgot to mention sorry xxx
Hi to all my 'skinny' friends. Forgive me bt i cant seem to get a pop up of the previous posts to reply to individually so i apologise now if i miss anyone out.
Well, day of mixed fortunes...just seen my Onc to get reslts of latest biopsies and they have all come back as TNBC. Not the news i really wanted bt seems i have mtating cancer...some of it is ER+, some ER-. Hormione treatments no good now so like most of you ladies i'm back to relying on chemo. I asked for this appointment as the next time i am due to see my onc was after the CDF removal date for Avastin but he still thinks it would do no good..apparently thats why its being removed..it isnt very effective and therefore not used??
He looked at my mets and thoght there had been an improvement so for now its on with the taxol. I'm just keeping my fingers crossed that it works for longer than the others! I He did say the next thing would be caboplatin. i had read somewhere about everolimus being used with cisplatin for TNBC but he dismissed it. If any of you have heard of it [lease let me know. I know you ladies are all more knowledgeable about TNBC and its treatment than me so any info you can give me would be great. Also if you know of any trials, i'd be very interested. (Bumpkin, i will try and PM you)
He has aslo written a referral letter regarding electrochemotherapy so i'll let you know how that goes.
Ladywolf...you are amazing! How you keep going with your 2 boys and doing such lovely things is truly inspirational. I really dont know how you do it. I too have loads of awful scabs but at least its better than being red raw sore. i also get that really tight feeling about 3 days after my chemo so hopefully its a good sign.
Bumpkin..thanks for the info on different skin mets. I have some thickened areas so i'm going to ask if they showed up on my scan.
Like you and Marierose i seem to have all kinds. The ones on my abdomen and side are red/purple blotches, while the ones on my chest are rashy, scabby, lumpy...you name it, i seem to have it.
i too take antihistamines but am in the dark as to whether i should 'moisturise' the unbroken skin so it doesnt dry and 'crack' or ulcerate or just leave everything alone.
Marierose..hope you are feeling a little more upbeat. I'm the same as you..i write everything down i want to ask and then when i get ot realise i havent fond out half that i wanted too!
SS, Belinda, Janice, DBNO and anyone i've missed (apologies)...hope your treatments are all going well.
You are all always in my thoghts. XX
i will write a proper message to everyone soon but I have two answers to your questions.
Some skin mets are very superficial and rash like, a bit like the measles or a heat rash in the way they look. These tend to be called cutaneous and are often not seen on scans. Treatment, hormones, and general health will see them wax and wane. Other larger ones, which feel more from pea sized to larger even to the size of a number of centimetres, can be seen on scans because they are solid tumours, like your original breast lump. Pet ct scans are the most detailed, but my latest ct scan report has details of many of my skin mets because they are larger and subcutaneous rather than smaller rash like cutaneous mets which I also have but have not been reported.
Ulcerated mets are subcutaneous mets which have broken through the skin. You can literally see the cancerous tissue which is oozing exudate. These need careful cleaning and special dressings, as you have discovered. If they ever get smelly, then charcoal dressings are recommended. Honey dressings and the ones you have plus absorbent pads are great if not. Try and keep dressings in place for 2-5 days. You know intuitively when they need changing. Soak them off and wash with clean water or saline before allowing to dry and redressing. Walking or lying around topless would help them dry out but if this is not an option for some reason, then we need the permeable dressings plus absorbent dressings for exudate.
Both types of skin mets can itch. I recommend taking an antihistamine at night, and keeping them moist with whatever suits you best, such as a barrier cream, honey medical cream, coconut oil, e45 etc. If itching is unbearable use a 1% anticortisone cream very sparingly as it thins the skin but does provide relief.
I have both types of skin mets. You may be seeing some progression or they may be changing from ome day to anothrr. Take photos once a week to compare and to show to your onc. I use my ipad or mobile phonre and keep a library. Don't lend out the device you use...........
Very quickly on the second point, any chemo can work differently on multiple mets in the same person. I have not had e/e combo, but you will find many ladies for whom a chemo regime has stablised one met or wiped out one while not touching another.
If you have superficial cutaneous skin mets you can ask for a skin cancer cream, eg imimiquod (check spelling) Some ladies get it off their onc, others don't.
drifting off, sorry. Hoped to write to you before sleep. Night night. Bumpkin x
Hello my dear friends
I don't know how I would manage without you all it seems difficult to talk to others who don't have the dreaded invaders. My chest looks a mess the little bubbles have changed to larger blobs all grouped together and I cannot count them any more the rash is still lurking. I have just had a CT scan I thought I read somewhere that skin mets cannot be seen on scans if the rest is still stable then can the e/e still be working??? I am feeling so down not knowing the answer to a lot of questions I write them down but when other things get into the discussion sometimes I don't get chance to ask them and I don't like to appear to be moaning.
Anyway how are you all doing hope are still doing well with your treatments. Bumpkin thinking of you with your tials and Stresshead how are you we have not heard from you in a while.
Love to all xxx
Belinda - I'm interested to read that you're having steroids with the Eribulin. I'm not having any with it and only had some with the Capecitabine because I couldn't get out of bed without them. I'm feeling pretty well on the Eribulin but it's causing me some balance problems.
Bumpkin - I hope this week proves less tiring and that the treatment is going well. I have the office Christmas cake soaking in rum, ready to bake it tomorrow morning. Haven't made the mincemeat yet - may do that later today.
Marirose - glad to hear the skin mets appear to be healing, that must be such a relief. My rash still has a blistered apearance but has developed dry, peeling skin on the surface in the last couple of days so I don't know if that's a good or bad sign?
Wolfie - I hope things are still on track and going well with your Eribulin. Can you see any signs of improvement?
Stresshead, SS, Janice and anyone I may have missed - I'm thinking of you all.
Hi all, hope everyone is ok. Finding Eribulin ok until steroids wear off but hopefully these trampled on sensations are stamping out mets too! Marirose sure I read elsewhere you were having a CT today? Hope it went well. Hope the cake making went well Bumpkin. Love to all here, hope we will all be having more peaceful settled days soon. X
My ulcers are showing sign's of healing but are still wet but the skin mets have increased surly the e/e isn't working. I have dry patches where the patch sticks which are causing me concern I have resorted back to dry dressings with a very thin coating of barrier cream to stop it sticking to the ulcers I thought fresh air is what it needs I am relying on my cotton vests to help keep it in place during the day I have only done it for one day but things seem to be a little better. The nurse said the dressings should create air but I feel better this morning. Also the rash has not gone completely it looks dry then all of a sudden it turns back to red but like small pimples. The nurse has seen it and thinks it's like the folliculitis that I had even that has faded a little over night. I really don't know what I would have done without the cotton vests and thats down to you thanks for suggesting them x
Sorry to go on about myself when you are going through with the trials you seem to have a lot of messing about getting to and from the Hospital I hope it will not be too tiring for you. You seem to be a tough cookie lets hope it produces good results and I wish you lots of good wishes during this keep me informed how you are getting along with it all.
Stresshead how are you getting on.
Thinking of you all love to everyone. xxx
Sounds like it has been a better week in the main. Marirose, how is life if in the dressings room going? I have bought some of my preferred dressings as they are not on my PCTs preferred supplier list. Is there a financial
advisor among us? I may need remortgaging advice. Marirose, I am so very glad about the progress you have made regarding these. SOoo important yet so pricey. I can't afford my own for long. They are a tough call to buy when I could actually do with some home help of the cleaning, ironing and dog walking variety.
Disney is a marvellous adventure! The haunted house freaked me and my son out when he was small. I had no age excuse. It's most likely changed given it has been twenty years since our visit. Can't be as scary, no way.
DBNO, I am so very delighted that you have got to the second dose of cycle one of Eribulin. I wish your doc would give you the bone marrow jabs!!!!!!! Belinda -you deserve a fabulous result, even if it is awarded only for your amazing contribution to the forum aside from any other good reason.
My first week of the trial would have been a 10/10 totally marvellous experience were it not for a minor high temp reaction which kept me in overnight and both First Great Western's and the London Underground's contribution to travel excellence (not). Still, otherwise I have been at the hospital 4/5 days. Only 2/5 next week so twice as good! Reminded me of when i worked in London back in the day. So glad the Kindle, iphone and ipad have been invented since then.
Happy weekend everyone. Start that Christmas cake. It will need feeding until Christmas week when you get all the fun of decorating it. I am doing it and I belong to the Bah Humbug Club (first class division). Of course, you must taste the alcohol before you put it in. All that dried fruit is far too expensive to spoil.
May the sun shine. X
Good luck to all you Eribulinians feel quite envious especially Wolfie getting a reduction with the invaders mine are increasing.
Wofie you are throwing yourself into quite exciting expeditions your boys will be so proud of you as we are.
Bumpkin how did you go on with the trials been thinking about you.
SH how are you getting on with biopsies and did you find out about electrochemotherapy would love to know.
Love to everyone x
Thanks for all the Eribulin info Wolfie and DBNO. Hope you're ok SS. Let's hope Eribulin is a blooming good treatment for us all. X
Good evening ladies
Wolfie - Have you told your boys about their Christmas treat or is it going to be a surprise. I bet you'll all have a marvellous time. That's very promising news about your markers and that your onc thinks there's an improvement in your mets. I need to ask my onc why I don't have me the blood cell boosters. I'm just going to get my day 8 of cycle 1 tomorrow as my bloods have been too low since the day 1 dose. It's not good considering we both started Eribulin it at the same time. I don't want to end up missing half the treatment like Gem Carbo.
Belinda - The blood should have pepped you up a bit and put you in a better position for tomorrow. I'll be thinking of you while I'm getting my dose. I've found it ok so far, other than the migraine but I already had the headache before the treatment. I'm certainlyfinding it very doable compared to Cape. Best of luck, I hope it works well for you.
Thinking of all you other ladies too.
Hi everyone, I jump on the Eribulin bus on Thursday. Save me a seat SS. I don't feel ready or prepared for it at all. Think it's because I have been very anaemic over summer, I only found out last week. So had three bags of blood, today, well Tuesday, to pep me up ready for Thursday.
Thinking of all here, great to hear you had a good weekend DBNO. And London was such a great time out for you all Wolfie. Take Care All. X
Hello ladies - thanks for your good wishes. The Forum's been a bit fickle again. It wanted me to enter my password to reply yesterday but then wouldn't accept anything again. Today it has let me straight in.
Wolfie, Stresshead, SS - may I just reiterate what Marirose has said.
Bumpkin - I'm not sure which day you start the trial this week but if you've started it, I hope it's going well, and if not, good luck. It will be so interesting to hear how it goes.
Marirose - how amazing that someone would choose to be a doctor when she doesn't like wounds! I hope your mets are improving now you have the new dressings. I put cocoa butter on the skin on my arms because it had gone very dry but I had to fight off my brother's dog who seemed to think it was something to eat.
Belinda - I hope things are going well for you with Eribulin.
Best wishes to Janice and anyone else I've missed.
Having missed my 'day 8' doses twice so far I felt so well I managed a weekend at home. It was bliss. My hair began falling out on day 15 again. Looks like I'm going to be bald again for another winter. Getting my bloods checked again tomorrow so finger's crossed I'll get the treatment on Thursday.
Good night. I shall check in tomorrow to see how everyone's doing.
Hi everyone how nice to hear from you all
Wolfie how brave you are to take on such a task taking your boys to London and doing all the things you have done well done girl.I am virtually holding your hand for tomorrow I hope everything will be o.k
Stresshead so good to hear from you things seem to be happening for you I am not familiar with the elctrochemotherapy it will be interesting to know what you find out about it. You sound more positive lets hope your team can keep you that way I shall be waiting for your update
SS you seem to have so many helping hands to look after you. Sorry your brother had to go back he sounds like a relly nice brother to have. Hope you are breathing much easier now and good luck with the new treatment
Bumpkin wishing you all the best with the trials.
DBNO Belinda Janice and anyone I have missed love to you all
hope everyone is doing as well as can be expected. stress - sounds positive moves for you. well done for getting it organised i know how difficult it can be to get things done on the nhs. hats off to you. wolfie you sound great on eribulin. i'm startin mine sometime this week so hopefully it will go well for me as we.. still at home in bed with my perfect brother who is looking after me like no one's business. i feel great with him here, he has to go back home to spain tomorrow but have another friend coming from edinburgh to stay for a week to take over. thank god for friends! after that hop[ing to feel better with the eribulin although they did say it could take up to 6 weeks to work. anyway ladies reading through the posts the impression i get is what a strong amazing bunch we are! things we endure and orgainse and enjoy whilst going through this feels me with awe - about myself as well by the way!!!! i think we are amazing
Hi ladies, i havent forgotten you all bt have ben a bit bogged down recently. Just to let you know i am having repeat biopsies done tomorrow and my onc has now agreed to refer me for an appointment to discss electrochemotherapy so there is a little progress. I'll catch p with you all as soonn as i have some news but in the meantime thank you all for your contined support and i hope you are all as well as possible. Cyber hugs to all.x
Thanks for making me feel a little better but I am so sorry to hear how yours have spread to other areas and I do hope the trials will be successful for you it will be interesting see if it could be a break through for TN Breast Cancers. I bought the coconut oil but have not been able to try it on my invaders yet as I have the dressing covering most of the orginals although I could use it on the new ones. The dressings I am using are Allevin Life with a dressing which looks like netting called Atrauman they seem to be healing the two ulcers apparently it is allowing air to get to the wound. The nurses are helpful and are getting the dressings on prescription which is more than I could say about the lady Doctor I saw. I thought it would be better to get help from a woman but she shot out of the room came back sent me to the practise nurse and not a word. I couldn't believe what had happened. When I told the nurse how she had been she said the Dr didn't like wounds needless to say I will not be seeing her again.
Anyway keep us informed how you get on with the tials good luck
SS sorry things are rough for you at the moment how lucky you are to have your brother stepping in to help you. Hope you soon feel better
Belinda I hope Eribulin is kind to you
Sresshead Wolfie Janice and DBNO also anyone I may have missed out thinking of you all xx
Hi all, SS hang in there, I hope you start feeling brighter very soon.
I start Eribulin next week so good luck to all of us in the Eribulin club...and good luck to us all here. X
Well, am now in hosptal had to be taken last thursday as my breathing got so bad could not get out of bed. They have done a drain to my lung so a bit better now. Treatment was canceled yesterday and should now be starting it next wednesday. am trying to organise some interim care in a hospice or somewhere until i can look after myself again- hopefully once the treatment starts to wrok. They are looking into it in the hosptial but I don;t feel that confident anything will be found. Luckily my brother has come over for 6 days to look after me and friends are all popping in to rally around. Still dark days for me at the moment and feeling vulnerable and scared............ much love SS
I have a variety of shapes and sizes, including bubbles/ blister style ones in a number of sizes. I think they are the itchy ones. I use coconut oil to keep them moisturised because I don't want any more bursting. I have a large area of mets including on the left side of my abdomen and down my side. They rub against clothing sometimes. I am going to get some silk under garments -not sure from where or what - as I think that will be the nicest material to have against them.
I start the trial next week. A trial drug takes years and years to get to the licencing stage, and some never do. This trial started in 2011 and it will be a number of years before it is available. I am very optimistic and also very aware that some people see clinical trials as a last resort when, in fact, joining one 'earlier' could be very beneficial. The drug I will take is in Phase 2 trials, so it is administered and monitored at the research centre. I am pleased to be having tests which will identify my type of triple neg BC so drugs can be targeted at it. I haven't been offered these tests so far.
My most favoured dressing for my large ulcerating skin mets, Mepitel safetac, used along with an absorbent pad, is not on the preferred supplier list at my health centre. The alternative they gave me brought me out in a rash and is nowhere near as good. So I am buying my own from a medical supplies company. Dressings are pricey and I know we all keep searching for the best ones for us.
I hope you are all as well as you can be. Be strong.
Hi everyone has anyone got skin mets that look tiny bubbles rather than pink spots I have got quite a few between both breasts and below the others under my chest wall tumour. I've tried to google but can find nothing only the normal mets. Onc keeps saying she is not too worried about them they are nothing to do with the rash I had which is almost gone now. I'm feeling quite cheesed off with it all but I'll battle on.
I do hope you are all doing ok and the new treatments are not upsetting you too much you are all in my thoughts quite alot (((((Big Cyber Hugs to you all)))))
Good morning ladies......I seem to say "I hope" a lot but I'm just going to stop worrying about
Marirose - I hope you're feeling less in that dark place.
Bumpkin - I hope you're not too exhausted and that yesterday's results have identified a suitable treatment.
Stresshead - please don't feel you should apologise for sharing your feelings - that's why we're here, to help each other in dark times and celebrate when something goes well. Have you got any further with your quest to get the biopsies? I found out the hard way not to just accept what your onc says and to fight for what you believe you should be getting.
Wolfie - I hope your op went well and that they've got your portacath under control! How are you feeling since your day 8 Eribulin?
SS - I hope you've managed to get up and about a bit. When do you start Eribulin? I'm finding it not too bad so far, other than when I allowed a headache to get out of control which resulted in vertigo and vomiting and a night in hospital, and my neuts were too low for my day 8 so it's postponed till next week (if you get a headache, take a painkiller to stop it before it gets out of control). That's interesting what you said to Stresshead about immunotherapy. It's something I've been looking at and keep checking the CRUK clinical trials to see if there's anything up and coming. It sounds very promising. The Marsden's website has had a fault so I haven't been able to look it up on their site, but I'll keep checking.
Janice - You're in my thoughts.
Hello also to Belinda and anyone I've missed. Sending you all my best wishes.
Hi everyone sorry I have not been posting but I have been keeping up with your posts. I have been in a dark place for the last 2 weeks. But it is nothing compared with what you are all going through.
Hi Stresshead hope you are feeling a little better you really are on the edge I wish I could help you my heart goes out to you and Cyber Hugs are coming your way. I was pleased to hear your daughters success and I have to say my eldest son did his PGCA and has never looked back he married a girl on his course and they have a very good life.
Hi Wolfie congratulations to your son you must be so proud. I hope the Eribulin works for you and regards the advice about the none electrical appliances it's good advice. My first chemo 19 years ago made everyone lose hair the nurse couldn't understand why I retained mine I told her I kept my hair short and used no elecrical appliances on it don't ask me what chemo it was they proberly don't use it anymore.
Hi DBNO best wishes to you on your Eribulin I hope it works for you too
Hi SS I do hope you are feeling much better and your breathing has settled down now
Hi Bumpkin I do hope your pleurisy is much better now and the steroids have helped to give you some strengh. You are so knowledgeable and you have helped me.
To Belinda Janette and anyone I've missed my love goes to you all xxx
I am in London right now waiting for one more test. Will hear if I will be accepted onto the trial on Friday. It has to be by oncologist referral. Mine wrote to the trial mid September and I had a consultation last week, tests today. I feel very motivated and positive and even up for all the travel. Please send me a private message so I can give you more details.
In terms of the mets I find that a thin dressing called Mepitel with Safetac technology coupled with Zetuvit plus absorbent dressings works well for me. I am getting scabs forming. Key is to avoid getting ulcerative mets wet as far as you are able to.
Will your onc order a scan after the third taxol? Radiotherapy helped my largest mets. Cotton is essential next to the skin rather than synthetic fibres. When my onc told me taxol and Austin were not working he booked me in for some radiotherapy and wrote off to the trial doctor. There has to be a four week gap between the last chemo or radio and starting the trial. My mets are a bit worse but not as bad as I thought they would be given it has been five weeks since any treatment.
Trial doc sends off for your old tissue samples and also undertakes thorough testing to determine as precisely as they can what your type of cancer is and which drug it may respond to. They look after you exceptionally well.
SpringSummer, I really hope you can get the breathing under control. Hospices are fabulous for respite care, therapies, and pain management etc
Writing this on a kindle is driving me nuts!
It is so hot in London!
what can i say? i think looking at clinical trials would be a good idea. not all hospitals do them, i know the marsden does and the hospital should put you foward for them. i know there are some immunology trials coming up - the marsen told me can you talk to your onc about them or go and see the marsden? The guy in charge of breast cancer trials at the Marsden initials are NT. - look him up. I know how scary all this can be. I an on citalopran to help with my anxiety and it does seem to stop me worrying too much. I am stuck in bed now unable to dfo hardly anything. they have decided on eribulin next for me. whilst you're waiting huge cyber hugs going out to you xxxxxx
I don't understand why your BC has not been biopsied SH? When you left the Royal Marsden with hope, are you in England? You can transfer your care to there, can you get, would it be useful to get an appointment, your GP can get an urgent referral, to ask for a biopsy. Have you asked to see a different Onc at your local hospital? CRUK trials are here,
thinking of you. X
Oh ladies...what is hppening to us all? we seem to have hit pain and problems all together.
SS...so sorry to hear yo are still having breathing problems..lets hope the hospice put you right.
Everyone, thank you for your concern...i really need your support at the moment...have just got my letter from my last onc appointment. Basically he has said, chemo's not working, antioestrogens not working, mets beginning to 'fungate'..what an awful word (means Ulcerate), no point in doing biopsies (so i wont know whether i'm er+ or trip neg so how can they plan treatment?) radiotherapy and electrochemotherapy unlikely to work and i've been told that this is a very difficult tumour to control and that it will soon spread and get out of control...basically i'm finished??!!
I have spent hours researching different treatments and still seems there are several to go at but apparently not??
i have again asked for the biopsies to be done and i have asked my gp to write to my onc for a referral re :electrochemo. I have got to ring the oncology unit on Fri but dont see my onc till next thursday.
To add to the mix, my mets have now begun to leek and weep. I went to the breast unit and the told me to leave uncovered as much as possible. They gave me some non stick dressings but they have stuck anyway.
Wolfie, the ointment i mentioned, chloraphenicol 1%, is actally an eye oiontment that the breast unit use after surgery. It stings a bit but it did help a little. If things dont improve i'll ask abot a macmillan /specialist nurse.
Taxol so far ok but not sure its doing anything. I am very tired but my hair hasnt fallen out yet and my bloods are fine (my psychologist did say yesterday that it really hits after first cycle so hopefully it'll kick in). Dont want to go bald again but if it means the stuff works then thats the least of my worries.
Bumpkin..i have had second opinions, the last one at the Marsden and came away with much hope which has mainly been dashed with the query over whether i'm = or -, and the fact that this is spreading so quickly. Can i ask which trial you are up for?
I was told to look locally but not really sure how to go about it...should my onc tell me if theres anything suitable or do i have to contact hospitals myself?
I'm sorry to be so negative ladies when you all have enogh to cope with and i thank you all for listening.
Love and hgs to you all.xx
thanks girls. actually not going to a hospice yet as they need to visit me to assess me. hopefully they will come tomorrow. am seeing my onc wednesday week but they will have a meeting about me tomorrow to decide the best way forwrd so i will not have to wait fro the next chemo. Ho hum. It means a lot that i can reach out to everyone here and get support from people that really understand and are not embarresed or arkward. xxx
Sorry so many are having such a tough time. SS I hope you can get back on track with some help at the hospice. X
well, not in a good way myself. the carboplatin is obviously not workin and my breathin has got worse and worse to the point now where i cannot do anything except stay in bed. very scared. called my hospital and they are looking into sending me to a hospice for a couple of days to see if that will help whist they decide what treatment to start next,
waiting to hear from them - god i hate this!
thank you, Anna. The point I make does remain true, however, and I know you are looking at ways to improve the website. It would be good to see more information about secondaries, especially those not covered, and also improved and higher level navigation in the forum. 'worried about secondaries' is more specfic than 'coping with fear and anxiety'. I have looked there for a few minutes and focus is mainly on recurrence, which is again very important. Some of the top level navigation could be reviewed and improved I think, but it is only my view. Obviously user stats help to determine best navigation.
Thank you for your message and suggestion re a 'worried about secondaries' thread. There is a board called Coping with fear and anxiety, where anyone with primary breast cancer can share their fears of a secondary or recurrence diagnoses.
Thank you all again
Digital Community Officer
It has been a dramatic few days for all concerned! Glad to hear your son's good news, Wolfie. I remember lots of pain in the first few days after Eribulin in my skin mets. And I did have a strong, positive response to it, so I am very much hoping that it is the same for you, and also for DBNO. In terms of pain, I have a Sue Ryder nurse who was brought in by the community nurse to help with pain relief. She has devised a pain management plan for me. I believe a MacMillan nurse would do the same. It is time for you, Stresshead and possibly Wolfie to ask to see one of these expert nurses to help you deal with pain and dressings management. It is nothing to do with how far our cancer has spread, merely to do with being as comfortable as we can be.
It sounds like you have a very negative onc, Stresshead. Please ask to be referred for clinical trials, if you can, just to find out more about them. If that sounds like a step too far, ask to be referred for a second opinion. Which is easiest for you, London, Manchester etc? You need to head off to a research hospital and hear something far more positive and have a treatment plan which works for you. It feels like you are being let down on all fronts and you musn't take it. A referral letter should get you an appointment within a couple of weeks.
I am off to London for pre trial tests on Wednesday. It seems daunting but doesn't everything at first?
On another note, it seems to me more primary ladies are dipping into secondary threads to air their fears about something. Obviously they need help and advice but to me it seems that a 'worried about secondaries' area is needed where we can offer advice if we feel able. Finding posts seeking reassurance from ladies who are in the very boat you dread getting into seems peculiar (and other things) to me.
And as Belinda says, the view of possible recurrence and how cancer travels is far too simplistic. It is amazing how many ladies think that clear nodes means all will be well and vice versa. Neither is true. I had clear axillary nodes on both sides and my cancer travelled by vascular invasion. Also many oncs do class distant lymphatic invasion and skin mets as stage four, mine certainly does. There is nowhere near enough information on this site about non bone, liver, lung and brain mets. What there is suggests I should not be classed as terminal. I wish someone would tell my oncologist! Somehow, I think he has the greater understanding.
The pink and fluffy Loose Women episode stands in great contrast to the death of their recent guest of secondary cancer. Celebrating recovery is wonderful but if it is not within the context of those who will not recover then women are not helping to empower each other with truth and knowledge.
on a lighter note, the weather is pretty good for the end of month and there are wonderful Autumn fruits to pick! Off for some blackberries for a crumble.
Wishing you all a healthier and happier week.
Oh dear Belinda, I hope you managed to get some sleep eventually. You're right, it is shocking how little is known about mets. I was told at the primary stage that I was very high risk of a recurrence but it's no less shocking when it happens and reaches the incurable stage. It's strange how they don't class skin mets as stage 4 or secondary. And there's so little information about it in such as the BCC site and other reputable ones.
Oh DBNOut, fellow mets lady here, can't sleep but I hope you are now peacefully zzzzz. Just wanted to say I have also dipped into other parts of the forums and the lack of knowledge of mets and the actual stats on how many will be further diagnosed with mets shocks me. Hmm like BC cells know when I'm in a positive mood!
I should have stuck to the mets threads but sometimes I dip into the recurrence and triple negative threads. It's amazing how many people think (or they're doing the ostrich as well and think it will make it more likely to be true if they put it in writing) that all you need to avoid mets is a positive attitude and lots exercise and veg! If that's all it took I wouldn't be in the situation I am now! Grrr.
Oh and had one of those 'stupid comment of the week moments' in hospital. While curled in a face down ball on the hospital trolley, wretching violently over a sick bowl (which a male nurse later referred to as my best friend) but unable to bring anything up, a female nurse said to me "..... if you keep doing that you're going to give yourself a sore throat." !!!!!!!!!!!!!!!!!!!!!!!!! Seriously, did she think I was doing it for the fun of it. If I'd been able to talk I would have been inclined to say, "Oh, well I'll stop it this instant".
I'm definitely signing off now. Night night.
Stresshead - congratulations on your daugher's achievements. It just shows what a good job you've done raising her. I can't offer you any advice about pain relief but Bumpkin might be able to. I do hope you can get something to control it and I'm keeping everything crossed that the Taxol will work. Regarding the biopsies, I agree, you need to know exactly what you're dealing with so that treatment can be more targeted. Have you tried getting a second opinion. I'm glad I did. My new onc is far more up to date, knowledgeable and incredibly kind and caring - a complete contrast to my former onc who played God with my life ad would happily have sent me to an early grave.....another complaint drated to send to my former hospital. Have you been to The Christie or The Royal Marsden? Also, again, Bumpkin might be able to give a bit of advice.
Wolfie - once again, your son has shown what a good job you've done raising him, as with Stresshead and her daughter. It's a tremendous achievement at the best of times but even more impressive under the circumstances. No wonder you're proud! I'm a couple of days behind you on the Eribulin and, as with Stresshead, Bumpkin might be able to advise about pain relief. My sking mets have turned very red and angry looking. I accidentally touched it earlier and it was very painful. I've had stabbing pains in the locations where I know it's in my nodes. I'm taking this as a good sign, so I hope you can get back that image of the little blighters causing the stabbing in their final moments.
I managed to feel really well for a whole 24 hours then spent the next 20 hours in hospital. All I can say is, if you get a headache please take some Paracetamol straight away to control it. Unfortunately I have a bad habit of hanging on and hoping it will go of it's own accord. It worsened and every now and then I felt like my head would explode, I got the chills, my temperature shot up, I developed vertigo and then the worst bout of vomiting I've ever had (and I've had some pretty bad times on that front). I feel fine now, just a very sore abdomen from lots of wretching and vomiting. I put my parents through a VERY traumatic evening.
To our other thread ladies - I hope you're doing okay. Hugs (((((()))))) tot all.
Wolfie.. First let me pss on congrats to your son...i have said before what a credit your boys are to you. it often makes me wonder where they get their resilience from. My daughter has got through a degree, coming out with a first, a pgce and is now in her first teaching job after securing the first one she went for...i really dont know how she has done it. I'm hoping i can be here for her nqt year...she has so much to cope with i feel so guilty that i have lumbered her with this (even though i know i really havent)
Back to the dreaded C...i so sympthise with you....the pain of these things is horrendous isnt it. I'm at the stage now where i cant even where proper clothes..living in pj tops at home and mens xl t shirts when i go out. All i have been given is the chloraphenicol ointment i mentioned previously. Am not taking any meds yet apart frtom co codamol on day 3/4 of my chemo cycle as i get so much 'muscle' pain in my back and neck. Dont really know who to ask about pain relief. I, like you, try to convince myself its the stuff working but deep down i know i'm being an otrich!
Just to keep you all updated..just finished my 1st cycle of taxol (3 treatments) but havent seen any improvement...not sure that they've got any worse yet. I saw my onc last week and was as nothing is working there was no point in repeating the biopsies and that this wold just keep spreading. It really hit home then and i'm very scared. I have since been back and told the onc Dr that i want the biopsies doing regardless and he is going to speak with my onc next weeuk. I'm jst very conscious that all this to and fro-ing is wasting time.
I hope all you ladies are faring a bit better than me and Wolfie...love to all.x
How annoying - I've just spent ages replying to this thread and it's disappeared before I got chance to post it. Here goes another try.
Bumpkin - I'm so pleased you're home but a bit of a b*gger about having to have all those steroids. Maybe send your family away for a few days? I hope you feel better every day. I'll be with you as a virtual presence tomorrow. It sounds very promising that they specialise in TNBC research. Can't wait to find out what they have to say.
Wolfie - well done, first dose sorted. I think if you've got through yesterday and today without any sickness it's quite promising. Whenever I've been sick of IV chemo it's happened within a few hours. I've had Cyclizine injections in the past and they were an instant cure for the sickness. Don't worry about feeling well, remember I felt very well on Gem Carbo but it kept me NED for a few months.
My mets are looking angrier, though I know I'm lucky they haven't ulcerated yet, my skin's gone quite itchy in other areas and I can feel things going on internally, plus it's becoming more painful again so I'm relieved to have reached a point of being well enough to make a start with the new treatment tomorrow. Thanks for the hair tips. It'll be interesting to see if I keep my hair this time. I'm feeling a bit queezy just at the memory of what happened with Capecitabine. I just hope this one is as easy as I found Gem Carbo.
Marirose, Stresshead, Janice, SS and anyone else I've missed, or who just follow the thread - I hope things are improving for you all.