Hi Marirose - I’ve changed my diet too (although it was pretty healthy already) and am juicing daily and eating more greens than before. I’ve also reduced the amount of meat, dairy and sugar but, as you are doing, I’m not cutting things out entirely. As for sugar, I use unrefined and/or stevia if I need to use it, other than that, I have a couple of Medjool dates each day, which generally satisfy that sugar craving - though I did give in to a rhubarb crumble last week when one of my rhubarb plants had grown sufficiently!
Stillhere - I shall keep everything crossed for you to get on the trial at the Marsden. It’s so stressful and frustrating trying to meet the eligibility criteria for trials and hoping things happen at the right time.
My current treatment has stopped working so I’m delving into other options. I shall let you know how I get on.
Sending extra hugs to my skinny friends.
(((((((((((((((((xxxxxxxxxxxx))))))))))))))))))))))
Hiya
I have had a very interesting afternoon at the clinic didn’t see my onc saw registra I knew I would. We got chatting about my last visit to bring her up to date we got talking about the skin mets I showed them to her and I asked her if she knew anything about them as everyone seems to know little. She said my Dr (onc) had been discussing the with her and had mentioned something about a treatment using electro something. I was quick to tell her what it was called and said I was going to ask the onc about it she said just a minuet I will see Dr. Then she came back in and said they didn’t do it at Sheffield but Hull,Leeds and Nottingham do it which is great because we are only 1hr away from them all.
So watch this space
DBNO I hope we will hear your plan soon.
Stillhere I hope you manage to get on that trial I will keep my fingers crossed for you
Stresshead I hope you are feeling a little better would love to chat with you
Well we have had everything today with the weather sunny, windy. hail stones, snow,calm and now a thunder storm glad I’m back home
Love and hugs to all of you xxxxx
Hi Mo
I am so pleased the radiotherapy has worked for you not many post on here about skin mets surely there are more women with them I hate being able to feel mine through my blouse when I cross my arms.
Anyway what I wanted to say my hubby has been for his checkup and his bladder is clear his problem was his pipes tightening and he needs to drink more water. Thank goodness I don’t know what I would do if things went wrong with him.
So we both ended up with good news
Love to my skinny friends ((((((((((((((((((hugs))))))))))))))))))
Hoorah Marirose! That’s great news about your hubby - what a relief.
Mo - great to hear of the improvement with your mets, sounds like the radio is still working on them too. We’ve had a lot of hail, rain, snow up north over the last week and it’s jolly cold. I need to brave the outside to go for some kindling to light the stove…brrrr
Hello to all the other ladies; I’m thinking of you whether you’re currently posting or not.
X
ladies, i have just opened the thread to read abot Cress…devastated. Just brings home that this is really happening. I wasnt aware that you are all posting on the private site s it just shows ‘no posts’ on my screen. Perhps i ought to be using it…maybe someone can tell me hoe to do it, then i can read Cress’s daughters post. My love and best wishes to all her family.
Thank you all for the info about my arm…havent been on here for a few days so missed all the advice. It does seem to have settled down at the moment and i have got a bit more use in it but i will keep a close eye on it.
I dont see my onc for 2 weeks so if necessary i will go to GP. Breathing is a little easier but still get very breathless if i move about…i am literally sitting/lying still all day. Home oxygen is a help but would feel more safe if i had a portable one so i could at least go out. I have Macmillan nurse coming next week so will ask her.Seem to be doing a lot more coughing (dry/tickly) just lately which is another worry.
I know it hasnt ben confirmed that i now have bone mets in sp
ine/pelvis but can anyone help me with symptoms…i do have a lot of lower back pain lately bt dont know if its from sitting about all the time.
Was glad to se that ECT seems to be becoming more widely used and t more hospitals…Nottingham wold have been brilliant for me but it was never mentioned.BTW Mo, i had my treatment at the Royal London but it is also done at the Royal Free.
Stillhere…really hope you get on the trial. i fear my chance has now passed but my Onc CNS said she has seen people much iller than me go on them so maybe theres always hope. Keeping eerything crose for you.
Well, as i sit here doing very litle, my thoughts and best wishes go out to you all. Much love xx
Thankyou Girls for your Well Wishes for my hub
At least we can get on with life a little better now. Wish the weather could be a little warmer I would like to spend more time outside but it is so cold sunny though and dry for a change look as though the white stuff.
Lovely to hear from Stresshead there’s a pm for you and DBNO I am sending you a pm
Love and ((((((hugs)))))) to you all xxx
Wow Mo it seems to have altered since I first joined I am glad you have explained it to Stresshead
Love and (((hugs))) x
Mo I am rubbish with technology I’m now on my phone I can’t use this right either
Night night xxx
Hello anyhope
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
Hi all,
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 :smileyhappy:
- 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.
- 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 moderator@breastcancercare.org.uk.
Best wishes,
Lizzy
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
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.
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
Hi Janice
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
(((((hugs))))) xxx
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
Hi Janice
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
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
Hi Stresshead
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
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.
Jan
Hi Jan
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