Well my big day on Monday I have been trying to get jobs done knowing I will not feel like doing much when i get home. I have to be there for 7.00am so we have decided to stay overnight at a hotel near by. I spent ages looking for pj's that open with buttons found some at TKMax lovely cotton ones with crop type pants. Thank goodness we have been spared the rain today I have not been able to get the washing out this week yesterday was ok but very cloudy and I dare not trust the weather as I was out for most of the day.
Love and (((hugs))) to all xxx
Thankyou Carolyn for your kind words it seems where ever I go no-one has heard of this proceedure I know it is relitively new Stresshead being the one who introduced it to the skin met thread. I was pleased when i knew my onc had been discussing it. I have been to the pre assessment today and the girl doing it hadn't heard of it either so it would seem it is new at this hospital (hope they know what they are doing don't feel like being a guinea pig pin cushion lol ) xxx
Thanks for all the info and update. Yes, it has all happened so fast in the end! Very efficient. And the way you speak it sounds as though your 'team'.......Lucy, Rachel, BN........are all very interested. You are a first for them! Perhaps Lucy has some experience........she certainly got the ball rolling. So I suspect all this will translate into good support after the actual treatment. You mention a tissue viability nurse too. Can you talk to her pre-treatment? It would be nice if she is on board and aware of what's happening. I am sure Hull will be writing to your onc. It's an important learning curve for your team so I'm sure they'll be keeping a close eye on you.
Anyway, well done! You are on your way. Quite exciting!
Sounds as though you are drowning in tea! Perhaps you should invest in an old fashioned tea urn........boiling water permanently on tap!
Off to bed. Goodnight all skinnies.........sleep tight,
Hi Skinny friends
I had a phone call yesterday pre op next Monday 13th and surgery following Monday 20th how quick is that. My hospital visit was today to see onc she wasn't there so I saw Rachel onc's registra. I didn't mind because I have seen her often and can chat with her. She was excited when I told her how soon it was all going to be and she asked if she could see the skin mets and said it was the first time she had heard about electrochemotherapy and she was quite interested in it. I did not mind I am all for helping her becoming a doctor. Pity I did not see the onc Lucy I wonder if i am a first for her but at least she came good getting me an appointment for the ECT. The BN came in wanting to chat about the treatment she asked me about it and we had a good chat. It seems I am a first at our hospital oh and she said he was going to try and find my lost photo's that I had taken first when the mets first appeared and then again when they increased.
Stresshead mine have increased to both breasts abdomen and my left side. So they will have plenty to blast I do hope I will get some decent after care it will be left to my local authority and I dont rate them very highly.But we will see I managed my ulcers mainly on my own with a little help from Tissue Viability nurse.
Thankyou Mo hubby makes too many cups of tea now I cannot cope with the amount he drinks makes me wonder just what he did at work.
Well love and (((((((hugs)))))) to you all xxx
Just to say I was pleased to hear your hub is ok! His medication........plenty of water and tea etc..........is not bad as meds go! Keep an eye on him. In fact, send him into the kitchen right now to make a cuppa before bed!
And thanks for updating us about Hull. It's all very interesting. i'm glad the Italian doctor was nice and welcoming. He sounds thorough, and gave you a picture of what to expect. I suppose it will be a case of things getting worse before they get better. But most treatments have downsides, or ses of some sort. You are at the cutting edge here! I suppose the preps will involve more trips, but you know the way now. I hope car parking etc was manageable. The first time anywhere is always the worst.
Take care for now. Your ect journey has begun. Do you have your prep appointments yet?
There is the rolling of distant thunder here, but no rain. Ominous. Heavy atmosphere.
Goodnight, and best wishes to stresshead and all skinnies!
Hi Skinny friends
Had a really nice reception at Hull hosp we arrived 30mins early but didn't have to wait long before he called me in. He was a very nice Italian and made me feel quite comfortable he said I was the only one today who had come so far to see him. He took all the details medication history of both cancers and then looked at my skin mets took 4 or 5 photos and then explained what would be happening and I would hear from them in two weeks time regarding the tests before hand.
He said it would not stop me getting more skin mets but it would hold it back. Where my tumour and old ulcer scar were I would get very sore and become ulcerated again and there will be lots of dressings and it may take time to heal.
Does this sound familiar Stresshead? Sorry you are back in a state of blank thoughts you are bound to wonder what your onc is thinking and worry about the chemo not working I would be. Don't like the sound of your sores bleeding again will you be able to get it checked by the nurse. Maybe it may not be a bad idea to get your scan earlier at least you will get to know sooner. My skin mets have continued to spread they now cover my other breast now. I would like a scan but don't know when I will get one now.
Thanks to all of you for your concerns and Mo my hubby is ok thanks he needs to drink more water to keep his pipes from shrinking sounds lovely doesn't it.
Well love and ((((hugs)))) to you all xxx
Hello all my skinny friends,
hope you are all as well as possible. i'm back on the old rollercoaster: went to onc clinic yesterday....i'm still losing weight (about 2kg every 3 weeks) and my TM's were higher than ever..jumped from 73 to 125. I am so down and scared after thinking that things were looking up. I also have a bleeding area on my left breast now which i havent had before...it was completely healed, which all leads me to believe that the carboplagtin isnt working. Altho Onc regisrar said he wasnt particularly concerned he did mention bringign forward the scan he had arranged for July. I dont know what i'll do if this one isnt working.
Marierose..so pleased about your appointment. I will be thinking of you tomorrow..please let us know how you get on. I cant really remember asking many questions beore the treatment but i do know i was in great pain afterwards and needed morphine..should have had oramorph after but they just gave ne codeine...not enough!! Also be prepared for very messy wounds, long healing time and lots of dressing changes. I'm not trying to scare you or anything but just trying to prepare you as i wasn't. remember my mets are very extensive and i had lots of ECT...you probably will be fine. Out it this way, if they told me it was helping and i could have some more, i would do it.
DBNO.....glad to hear your recent treatment is working. I remember reading about it but have forgotten the details...will have to look back. Is this something you found for yourself or were you told my medical professionals about it? What status are you...i'm triple neg so dont know if its worth pursuing. You also mention Taxol, which i ahve had to no effect. any info would be great> YOu can PM me if you would prefer.
Well, off to do a bit more research and digging.
Love to you all.xx
Morning Skinny friends
Oh Carolyn how I wish I could run even if it was just across our lawn to chase the grandchildren. My MS took care of that years ago it turned my right leg into a dead leg the hips are going and the 'C' decided to visit both legs in other words I am a wreck in the running dept.
DBNO I will let you all know how I get on tomorrow at Hull and Mo thankyou for the advice about making notes Stresshead maybe if you are reading this you could advice me on what to ask.
Love and ((((hugs)))) to all xxx
Hello fellow skinnies - I'm trying to trawl through all the posts that I missed while I was away.
Marirose - that's great news about Hull, and so quick. Roll on Friday. Do keep us posted on how that goes. Thanks for your support, as usual. My mets are back under control from the two lots of chemo I had in Germany. I'm having weekly Paclitaxel at my usual hospital to keep things in check while hoping the immuno gets going. I shall let you know how that gets on. So far I just have some big lumps from the peptide injections, but that's the response they were looking for. The Taxol has made my hair fall out, again. If I could just keep my eyelashes that would do me.
Re Carolyn's comment about the Manuka honey, many years ago I was in hospital and the husband of the lady in the next bed had Manuka honey put into a rather large hole in his abdomen to heal some surgery which had become infected. So it does sound like a possibility for healing ulcerated mets. Carolyn, if you're looking at this thread, I think anything's worth a suggestion when other things are failing and it's kind of you to take the time to try to help others.
Stresshead - I'm glad to hear your breathing has improved. I wish you continued improvement. Good luck with the Denosumab and I hope all was well with your teeth and jaw.
Jan - I'm sorry you're feeling so down at the moment. It has certainly been a long, hard slog for you and when I'm faced with a new chemo my heart sinks at the prospect of the potential side effects. Apologies for only just seeing your post but I was on Eribulin for 7 months. It kept my mets stable and it was by far the easiest chemo I've had. In fact, it was hard to believe I was having treatment, I felt so good on it. I even got back to fell walking after losing all my muscle and stamina from the Capecitabine last August & September.
Mo - your stitching group sounds great, it's just my kind of thing - sewing or knitting and a cup of tea. Also, you've put a lovely image of bats in my head! I once woke up to find one whizzing around my bedroom. It eventually latched on to the curtain so I just left it and it had disappeared by morning.
I hope I haven't missed anyone. I shall say night night for now.
Wow! It is all happening now, and your appointment so soon..........Friday!! They have decided to get a move on. Well done for hanging on in there. I know how hard it is.....waiting. Yes, get the satnav going........you have Thursday to plan the trip. You are right to take roadworks etc into consideration. Just in case. Take questions with you, as well as your flask of tea! And a notepad. And hopefully hubby to jot the notes! (How is he, btw?) Can you find an online map of the hospital, or have they sent you one?
Take care, Marirose, and I'll be thinking about you on Friday. I'm so pleased!
Love to everyone.......stresshead, dbno, jan, everyone. Sleep tight tonight,
Hi Skinny friends
Good news this morning I got a phone call from Hull Castle Hill hospital they have vacancy for Friday this week to see the plastic surgeon for ECT so it looks as though things may be moving now. Just have to find out where it is. Sat Nav says it is 1 hour and 6 minuets away thats not including traffic jams or road works
Mo thankyou for all your concern sharing with me and making me feel better about Hull.
DBNO I read your post regarding your Germany visit it all sounds very positive and I am glad you enjoyed the visit. I am sorry your skin mets have spread did they suggest anything regarding them. I would love to know how you are getting along with it all.
Stresshead I do hope you are continuing to be positive and using that oxygen less.
Jan I hope you are getting on with your new treatment ok
Love and (((((((((((((((hugs)))))))))))))))) to you all xxx
Hello Skinny friends
Mo thankyou for your help with the Hull hospital you have helped alot I now feel more confident about going there also the wait for an appointment I will have to be patient. I have printed it out so that I can study it.
I used to like my vista program but when hubby changed it to windows 7 I wanted to give my computer to my grandson and buy a new one (laptop) the new one drives me up the wall it is so sensitive and jumps about such alot but then I am not very computer wise and cannot get the hang of it. I really need to get used to cut and paste even that is hard on this one but I will persevere.
Hello Stressshead you really do seem so much better. I am pleased you are needing the oxygen less good luck with the Denosumab I hope you don't get any side effects I have not had any trouble with it in over 3 1/2 Years and as you know I have many bone mets.
Jan I hope you are feeling better with yourself you know we are all here for you.
Love and (((hugs))) to you all xxx.
I have come to apologise.......I think i gave you the link to the google search page, and not to the Hull document itself. In fact, I don't think the pdf doc can be linked, and I can't attach it here. To be sure, I am sending this link which is more exact, again to the google search page, but the doc that mentions ect is the 3rd one down......dated July 29th 2015:
You seem to have worked out how to open, or save, the pdf doc. I have noticed that the earlier docs don't go into details under 'good practice', so no mention of ect. But it is definitely mentioned on July 29th. Anyway, hope you've got it. Computers are terrific, but fiddly too. i am still using my old Vista, and looking at a new windows 10............everything new to learn...........and it means £££.
Thanks for keeping in touch. You are sounding positive which is good. Adcal? Yuk. But like you I just grin and bear it. As you say, if it's doing good............& good luck with the dentist. My onc said if I needed an extraction I must have it done in the hospital. Hm. But teeth ok for the moment.
And Carolyn, I agree with the others..........anything & everything is useful, and grist to the mill. Honey is certainly used much more today for skin sores, and I know that it is used for pressure sores. I think it is partly the high sugar content.....bugs don't like it.....and being sterile.
Sunny so off for a walk,
Hello all and thank you for your reassurance about denosmab...off to dentist tomorrow to have teeth and jaw checked before hopeflly starting it next friday. My breathing is still ok and i'm using the oxygen mch less now so something seems to be working at the moment.
Marierose.....my onc at home put me on carboplatin: i still havent heard from the (removed due to Ts and Cs) about seeing Dr (removed due to Ts and Cs) despite input from my Oncolgy nurse, UCH etc....looks like i will have do do more chasing myself.When i had my ECT i had to stop cape for 5 days before and 5 days after so that wasnt too bad at all...i think the complication comes when you are on iv chemo but i may have more info when my onc has decided if i can have more treatment. Keep plugging away at Hull!!
RRH...i already take Adcal so hopefully will be ok with the denomab....i hate them and try to chew them away as quickly as possible but if they are doing me good thats all that matters.
Janice...so sorry to hear aboit the progression...as you know i was hit with a double whammy recently and it does knock you for six, esprecially when, like you i am going through diferent chemo's at a rate of knots(??).
I had eibulin which unfortunately didnt work bt it was an easy chemo as far as i can remember. Also same story with weekly paclitaxel but i'm sre you will ahve more success...please keep us posted.
Carolyn...if you are reading this please dont think yhou are gatecrashing and dont think you need to apologise for anything. As the others have said we are grateful for any information. In fact, i have also heard of manka honey and found out about a dressing which contained it. my district nurse said it was good but could stick to the wound so in my case (with open wounds) probably wouldnt be suitable, so what you said was not insensitive or rubbish at all.
Love to all. xx
I have had a look after reading Marirose and she is right. There is a thread started by Smartie near the bottom of the list: https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/Eribulin-amp-Skin-Rash-anyone...which she only started recently. You may be able to send her a private message as she may not be checking that thread now. There are other slightly older eribulin threads:
which seems dedicated to sharing links!
Just thought I'd have a browse. I've had supper and washed up, so settled at my laptop. Recently I have been in the garden in the evening, and watching my bats at dusk, but tonight it is dark and COLD. They say it's going to get warmer but I don't believe them at the moment!
Sleep tight tonight everyone!
I agree with Jan you are only trying to help and we didn't mind your comments it is good that people read this thread we would not like you to have to join us but would like you all to be aware that this can happen to anyone with metastatic breast cancer.
Jan I can understand how you must feel spending so long having chemo maybe they will give you a little rest from it before starting again. Smartie is on Elibrulin she has been on it awhile maybe she will look on the thread she started she did not get anyone to answer her post.Scroll down the threads on here nearly to the bottom it says Eribulin and Skin Rash maybe you could get in touch with her from that. Best of luck
Mo you are a treasure I went onto the web page you put me on but I could not open the thread you suggested because I did not understand the Pdf or my computer but I managed to get into it this time and printed the information it sounds quite good at least I am not as worried about Hull Royal Hospital and like you say I can make notes for my onc when I see her.
DBNO are you home yet would love to hear from you.
Love and ((((hugs)))) to all skinny friends xxx
Please don't feel awful Carolyn you were only trying to help and it is very much appreciated by all of us I am sure.
Thanks for taking an interest Carolyn, I have heard how good this is for various sores,but not sure it would work on ours.
Appreciate your responses to my post but I am not sure about more chemo, feel that in couple of months I will be back here having suffered yet more side effects for what. Fed up with eyes and nose running all the time, due to having no eyebrows or lashes, mascara was the only makeup I used.
I have been on one chemo or another for 5 years now they all seem to work for a while,this last one Paclitaxel I had weekly for 5/6 months was at hospital twice a weeks some weeks.
Maybe I will feel differently in a couple of weeks time,have to wait and see.
I wish there was someone to discuss the way I feel with, at hospital I was told I could try Eribulin and then given a sheet with information on,not the same.
Marirose, it looks as though you will need your questions ready for your next onc appointment! Then hopefully she will have some answers. Yes, i would give the sec a ring when you feel like it.......pre appointment......which will help with what you know about the possibilities at the appointment, and that you are awaiting developments. It's good to at least appear to know things!
I did a quick google about ect at Hull..........googling is wonderful but as you said a lot out there is out of date, and a lot of things just aren't put online of course........but my quick google came up with this: https://www.google.co.uk/#q=electrochemotherapy+hull+hospital. About halfway down it does mention ect under 'good practice. It is dated July 2015. So something must be happening there.
Anyway, must get going. On Wed mornings (this morning) I go to a 'stitching group' at my local Community library. No fee, no yoga, no pilates........you just turn up with something to sew, or knit, whatever. Tea. Suits me these days! We just chat, or not. But now I have a few errands. Take care, and thinking of you & those pesky skin mets. I hate my little patch. It seems worse when you can see it, don't you think? Although skin mets aren't as potentially dangerous as lung or liver. I think that is why the medics are less interested, but it won't do. Ect is out there and should be used. Take care for now,
I have heard of Manuka Honey but I don't think itt will do anything for my skin mets. I keep them moisturised but they do not give me any grief other than just being there and increasing. But thankyou for your concern it is much appreciated.
You always know what to say. I will see the onc in 2 weeks time so not too long to wait. I just don't feel so sure about Hull hospital after I have googled it. I cannot see anything about ECT. But then my onc should know if it is suitable for me she would not have applyed if it was not I suppose it will be the waiting game for an appointment like most hospitals. You do not always get proper answers from google and many treatments are outdated information. I will contact the secretary if I have any queries about it she is really nice and helpful.
I do hope you are moisturising your patch and I am glad it is no worse.
To all my skinny friends hello and stresshead you are in my thoughts Jan I hope you feel a little better about yourself.
Love and (((((hugs))))) to you all xxx
Well said, Marirose. Your advice to Jan is quite right. Part of this disease is 'wait and see'.........we have to learn to ride the roller coaster. Jan......eribulin sounds a good chemo and it may be the one for you. You say that your progression is 'slight' so your onc is right to move fast and early. i hope it goes well. Do you ever use the BCC telephone helpline? They are a good source of info and know a lot. Perhaps give them a ring to talk it over. But meanwhile have a rest and a break before your new treatment.
Marirose........could you ring your onc's sec? To see what's happening about Hull? she could at least update you. Or give you a timeline. It might even prompt her to give Hull a ring. It's the not knowing that is hard. I like to have a timeline! When do you see your onc again? I don't see mine until July, but trying to forget him for now! My skin puff has gone dry, like dry eczma, so I am hoping it has had a bump on the nose! quiet for now. Not worse at least!
Take care, both Marirose and Jan. It's good to have updates. i read these threads a lot....skin and bones......and you get quite close to everyone so it's nice to hear what's what. There are lots of hugs out here looking for someone to grab!
Sorry to hear you have had progression you must feel devistated it is always a worry to us. I don't know anything about Eribulin but I know one or two on here were on it. It is supposed to be a good chemo. I do hope someone will come forward and give you some confidence.maybe you could start a new thread.
Please don't lose heart I know when you get to our age you think is this it. But we must try to make the most of our future I have felt down I have googled Hull hospital as regards ECT it does not look too good. My skin mets have spread and I can feel them through my shirts and I need to be careful that if I wear a low neckline they may be seen. This disease has robbed me from enjoying life in the way I would have liked but then I pull myself up and think I'm still here and I must make the most of it while i can.
So I am sending you loads of love and (((((((((((((((((((((((hugs)))))))))))))))))))))) xxx
Well it's all change for me yet again. Been to hospital today and my scan results show slight progression to liver, Paclitaxel not working anymore, not really surprised had my suspicion that all was not well. I am going to have Eribulin,anybody else had this? must be about my 7th chemo, at this rate I will die of toxic poisoning.
Have to go back in 2 weeks so have a little break after over 6 months of weekly treatment.
Sometimes I think what's the point.
Hope you are all coping.
Just to say it's good to hear from you. Your update is interesting, and rather typical of medics! They hate to commit themselves and some find it difficult to be clear. My onc isn't too bad, but the registrar just beams and smiles. But you are sounding more positive, and it sounds as though the actual treatment area has responded, from what you say. Must be good.
Denosumab? Like Marirose I have denosumab....about 18 months now...... and have had no ses whatever. So easy........tiny subcutaneous injection, rather like a flu jab. Takes moments. Well, perhaps several moments........it is supposed to be given a bit slowly. But easy. No blood! Apparently my bones are healing after a year. That just means the bone is regrowing, so stronger again. You will probably have to take Adcal because denosumab uses up calcium. A rather chalky but fruity tablet. I now just suck mine. i have tried grinding it up and sprinkling it on food, but that takes so long, and not worth it. So you won't find denosumab any trouble. At the Churchill.....where my onc comes from......they allow you to receive it through the post and do it yourself! But my hospital won't have that so I have to go to the chemo unit once a month. Bother. Some people have it done at the GP surgery, or a district nurse visits. It all depends.
Anyway, thanks for keeping in touch. it is just good to hear what is happening to us all! Glad the breathing has improved, and the hospitals are in touch to decide further treatment. But you have carboplatin for now. Take care. It's getting late and I should be in my bed! My little grandaughter is coming tomorrow.......4.......she's a little whirlwind! Grandma needs all her energy! Goodnight,
Lovely to hear from you and you sound a little more positive which is good. Lets hope the carboplatin does work. Also it is good that the 2 hospitals are communicating Did your onc put you on the carboplatin or the Dr at the Marsden?
I have Denosumab had it since it was new the nurses who injeccted it had not heard of it before now it is so common place to have it for bone strengthening. Nothing to it quick injection into the tummy you don't need a plaster after it. Not had any se from it but some complain they have aches after it for a few days I never did have.
I have not heard anything yet about the ECT but I do know that the onc said she had wrote to Hull hospital so it's wait and see syndrome. Would I still continue with cape while I have the ECT?
Well love and (((((((hugs))))))) to you and all our skinny friends xxx
Hi to all my 'skinny' friends and everyone lse. Qick pdate on my ECT follow-up appointment.Ie 'been left up in the air' somewhat.
I asked the consultant how they assessed whether or not it had worked and he said generally by looking 'clinically' but if there were any anomalies then they would biopsy. There was no oncologist available and he didnt sggest any biopsy but didnt say 'oh yes, this has worked'. He said the mets had gone further than the original treatment site so i assume thats a failure??
He didnt think my pleural efusion and lung problems were related (if anything it causes fibrosis) so that is more progression. I asked if this would preclude me from further treatments and he said maybe but he would write to my onc. So the only thing really to come from this is that the two hospitals are now communicating.
Marirose, so pleased you are going to have ECT...will give us something to compare. Keep us posted.
On a better note, my breathing is much better.Dont know if its down to the chest drains and pleurodesis or the carboplatin working. Worried if its the latter cos i have been told i can only have 6 cycles of this so could end up at square one again. Hoping to start denosmab at next chemo....not sure what to expect so am going to take a dip into that thread. Much love to all. xx
I really have not found any change in appetite I have taken them for years now my weight has remained steady until I was on E/E combo I lost weight by 1stone which is now creeping back up.
But I also have had trouble with my big toe from the chemo tablet I thought it was an ingrowing toe nail but I saw a podiatrist and she said she had seen many ladies on chemo with the same thing now my other toe looks like acting up. I look for wide shoes and I have gone up a size. I am always pleased to be back in sandles when it is warm I even have to look for suitable slippers without seams near the toes.
Things we have to put up with just to grab a few more years.
Love and ((((hugs)))) xxx
I'm still cutting my 25mg in half and find I struggle in the mornings to wake up even though I am not sleeping that well. Think they are helping by toes and fingers but I am finding that I can't wear certain shoes as my toes really hurt especially my big ones. Reading the blurb about Amitriptyline they are also used for depression, also that they make you feel hungry and crave carbs,have you found this?
Get my scan results next week,see where we go from there,must admit I am really fed up with my weekly trips to hospital for Paclitaxel but I know what will happen if I stop.
Hope everyone is keeping as well as they can.
Hello skinny friends
Seen the onc today and she has wrote to the Hull hospital to refer me for ECT so the registra was right I will be hearing from them but when I don't know.
Janice I have been taking double dose of Amitriptyline and I have not had a hang over in the morning. Maybe I have slept a little better,
Love and ((((hugs)))) to you all xxx
I have been to see my MS nurse and we got talking about medication and I asked about Amitriptyline she wants me to try doubleing my dose but warned I could find that I could feel as though I could have a hangover in the morning. I had a look at my tablets and they are only 10mg so I would ask your Dr if you could have a lower doze.
I hope this is of some help to you. Take care
Hi skinny friends
Hello Janice lovely to hear from you I am having trouble with my hand and feet with cape so I know how you feel. I take Amitriptyline have done since the beginning of my MS I could not sleep so they said to take it about a hour before going to bed to relax my muscles and if it got worse to take 2 but I never have.
ECT electrochemotherapy it sends electrric probes in the skin I am not 100% about it I need to read up a little more about it.
Hello Mo I love to read your posts you talk alot of sense. I could not have radio on my mets because I had intense rads in 1996 and I am badly scarred. But I remember Dawn posting on here and her skin trouble was surgically removed which sounded harsh but she has been clear for years in that area.I find Dawn a remarkable lady. If you scroll back a few pages you will see it.
Stresshead Hi hope you are feeling ok (((hugs)))
DBNO Love to you over in Germany
Love and (((((((((hugs)))))))) to you all xxx
Guten tag ladies (must learn 'ladies' in German)
Marirose - I'm sorry to hear your skin mets are worsening. It's such an awfully sinking feeling.
Janice - nice to hear from you and good to hear that your skin mets have dried up.
Mo - long may your skin mets be quiet!
Anyhope - sorry to hear of you and your wife's situation. I hope you can gain some help to assure you your wife is getting the right treatment.
Anyone I've missed - Guten abend!
Well, I'm in a German oncology clinic at present. I'm going to be completely broke, it's going to take all of my retirement lump sum plus lots of my parent's savings, and I'll probably have to sell my house and buy a cheaper one but.....in for a penny, in for a LOT of pounds.
After a stressful trip to The Christie to discuss clinical trials last week (the stress was caused by Royal Mail's not 'first class' post and the unreliable UK public transport which meant I would have missed my consultation had the doctors and nurses at the hospital not been very kind and fitted me in late) my skin mets started spreading rapidly and extended their range beyond all previous spread. As I was at the clinic for a biopsy to get screened for Tumour Associated Antigens (TAA) with a view to paying for immunotherapy treatments, my friend persuaded me that I should stay on to get some treatment, which will then control the mets and that stress (though I think the cancer stress has now been replaced by financial stress.....there's always something!). They've given me some Abraxane (Nab Paclitaxel) today to try to stop the mets spreading while I wait to get the results of the TAA and have the targeted treatment.
If any of you want to PM me about it I'm happy to tell you of my experience so far. I don't want to raise any false hopes but I'm glad I found out that there was an option to get targeted treatment, even if it means losing my lovely cottage in the process. I figure it's no good having a nice house if I'm not here to live in it.
(((((((((((((((xxxxxxxxxxxxxx))))))))))))))))))) to everyone. You are in my thoughts every day.
It has been quiet on here for a while, there can't be many of us left,very sad.
I have this morning had my 21st Paclitaxel, having problems with my hands and feet, onc. gave me some amitriptyline 25gm to help but they made me feel nauseas so I am cutting them in half. Going for a CT scan tomorrow to see what's going on. Although my skin Mets have dried I know they are still there as I can feel a couple under my skin. I know the cancer inside is more serious but when you can actually see them somehow it's more upsetting as it's impossible to ignore.
I agree it's the onc and not the registra that makes the decisions especially about change of treatment,although they are usually very nice.
What does ect do?
Marirose..........you just pipped me! I came to the skinnie thread now to 'bump up'..........it has been quiet. I remember dear Belinda used to bump up, to get the threads up the list again. You mention ect, and I think you should talk to your onc about it. I find that my onc takes notice of things if I bring them up...........like the radiotherapy, which he didn't suggest himself, but was enthusiastic about straight away..........so give it a go. I think we have to show we know things, and have learnt things from other ladies, here for example, and their experience. I think it was you that said that they are doing ect at Hull, Leeds, & Nottingham, and I know it is done down here in London too. so it isn't as 'experimental' as my onc suggested. I think he just wanted to play safe and go for radio first for me. I will push for ect though if needed. But I think mine is quiet for now.......it is more sore now, and very wrinkly! I have now read that radio effects can go on for many months, even years! So it's wait and see.
Anyway, good to hear from you. Funny that I came here thinking to bump up, and there you were, bumping up! I'm sorry to hear your skin is spreading, but I'm glad you are sharp about ect. I was told by a very nice Norwegian BCN on the BCC Helpline that ect is standard in Europe. She was surprised that it is so slow to catch on here. I think the NHS is always very/too cautious. At our secondary stage we need to try what is out there. You are near to several ect centres. Go for it!
Can you ask the secretary if you can see the onc himself? Registrars dont make decisions like embarking on ect. She would have to ring the onc. It would be nice if you could talk to him directly. I asked if I could see my onc definitely next time.....I'd like him to comment on the effects of the radio......and the sec said yes, fine, and changed the appointment to his own full day. He comes from the Churchill. I now know that if my appointment is on a Tuesday it will be with the registrar, although she can phone him.
Hope your hub is still downing the fluids!
Stresshead, I read your post on the bone thread & hoping things go well. I would not think your bone progression would make any difference to going on a trial. Good luck at UCH. Keep us posted. Was thinking of you today. Very wet here today, drizzle all day.
Bumping up the Skin Met thread.
My skin mets continue to spread wish I could hear about the ECT I see the onc or registra next week will have to chase it up again.
Love and ((((((((((hugs)))))))))))) to my skinny friends xxx
I am very sorry to hear that there has been some confusion over how to ask to join the Secondary Private Group. I hope the below helps
1. First, click on the Secondary Private Group (no posts will appear until you have been accepted into the group). I have included a screenshot below.
2. Then click the 'Ask to Join' button in the top right hand corner of the screen. The moderators will then receive your request and confirm your diagnosis.
I hope this helps, if you have any other questions please do email us at email@example.com.
Like Marirose I welcome you here, although we all wish we weren't! But do ask questions as everyone wants to share and help.
I can't say much as I don't know when your wife's dx was, or any details, but she must be oestrogen +ve which is why she is on exemestane. It is anti hormone. Her cancer will need oestrogen and examestane will starve it. That might be the onc's immediate line of attack. Has she had any scans etc? They will compare scans to see how it is working. Surgery to remove lumps is not always an option as it can make things worse. They may try to shrink things first and then reconsider. I was put on letrozole.....similar drug to exemestane......straight away, and my lung mets vanished after 3 months. My bone mets have been stable since sec dx which was Nov 2014. i have regular scans and they always ask how I feel.......pain, breathless, loss of appetite, etc. So far I have none of that. So........exemestane might simply be the first way forward and time will tell. Some of these drugs are suprisingly powerful. They need to find the right one for your wife but it may be exemestane.
Do contact someone.......Marirose suggests the breast care nurse if your wife has been given one, or your GP, or even ask for another onc appointment if there isn't one coming up. Then ask questions. I do understand that questions only arise with time and understanding. At first I knew NOTHING, and had no questions to ask!
All the best, and do continue to come here to pick brains!
Sorry you have found youselves here. Has your wife had any scans ie: CT, MRI or BONE or a biopsy the drug she is on is an Hormone drug to control cancer and is usually given after a diagnosis as a treatment after one of these. If she has not had one of these i should contact the Doctor through the sectretary or if she has been given a Breast Cancer Nurse through her.
If you are not happy with the treatment I would have a word with your GP.
I hope this is some help to you. x
My wife has lump on collar bone and is desperate to have something done all the consultant has done is give her examastane
I think BCC have tightened it up a bit, Marirose..........going through moderators before being able to get into the private group............as described by Lizzy the Community Manager on this page at the bottom:
That was just before Christmas. She talks about the privacy of the group here, but doesn't actually say how to get into it. I think I rang BCC to ask what to do! It gives more security than the open threads for the group using it.
Marirose, Well, it took me ages to work it out! I am a bit slow of course, and a bit frightened of all this technology. I'm not 'tecchy' but have been forced into it! But now I don't know what I'd do without my little laptop. And Breast Cancer Care of course. I've learned so much on here.
Goodnight. mo x