Hi Ladies, hope you have all managed to enjoy the good weather over the weekend and not worry to much about our ‘troubles’. Ladywolf…hope you managed to have your chemo and aren’t feling too bad with it.
Thank you all for your nfo on treatments. I havre just looked back from the start of this thead and notice that many of you have had radiotherapy. I’m not sure though whethe it was as a treatment for the mets or more as a ‘painkiliing’ treatment, if that makes any sense. A lot of you mention that it was to dry the mets…does that mean because they were weeping/ulcerated or to make them ‘disappear’? Mine arent weepy or anything but the rash one is now quite painful…a burning/stinging/itchy sensation…drives me mad. I havent ben ofered any radiotherapy and just ondered if it might help. Any advice?..thanks once agian for ll your support. x
Hi Stresshead - I had radiotherapy as part of my primary treatment - ironically, to prevent a recurrence… My skin mets are all in the region where I had the radio so I can’t have any more there, although my former, unreliable, onc said he could have done some superficial x-ray on them. Sorry to hear yours are itchy/painful. Fortunately mine aren’t at the moment but if I don’t get some form of treatment soon I think they’re going to start ulcerating because one area looks rather like a yellowish blister.
X
Hi everyone I have been away with all my lovely family both sons daughter-in-laws with there 3 children meaning 6 grandchildren one of my little family live in France and we last saw them at Christmas.
Before I left I found to my alarm that I now have what seems to be a rash of small spots all around the skin mets they are not red as you would find with a rash they feel like a lot of tiny mets has anyone else heard of this happening. I have tried to wish it would go away but I feel trapped with my thoughts. I see the onc next Wednesday so maybe she could enlighten me if it’s normal. My chest wall tumour is starting to feel very sore and is seeping a brown discharge not alot but it is there.
I hope everyone is doing ok and love to you all xxx
Hi Marirose - your family holiday sounded wonderful! What a tonic.
I don’t know about the lumps you describe. I had two different types of skin mets. One lot, which has come back, is a red rash which has now developed a yellowy, blistered appearance in part. But last year the original skin mets were fast-growing lumps in my skin which were red and the original one was purple. I understand that feeling of being trapped with your thoughts. It’s horrid, isn’t it.
Hopefully your onc or nurses can put some dressing on the seeping met.
Sending best wishes to all.
X
Hi Downbutnotout your skin mets sound awful I started with 11 spots that turned blistery and red the rash is still there it I see the onc on Wednesday so I will be able to tell you more after then. I am finding it difficult to wear a bra I am only small busted so I suppose that is something to be thankful for depending on the shirt I wear I can go without it.
All the best to you and everyone on this thread xx
Hi Marirose - my mets aren’t so bad at present. I’m lucky that they’re in a location where they don’t rub or catch on anything. I sympathise with your situation. I’m seeing my onc on Tuesday so I’ll catch up with how you get on after your Wednesday appointment.
X
Hi Downbutnotout think I could do with changing my name to something like yours. Wednesday saw the onc and ended up in hospital the same day could have been for a few days but I came home and will see onc Wednesday. I asked about my skin mets a small lump on my neck and asked about whether the met on my sacrum could effect my left leg from being able to walk properly. She wasn’t too concerned about the lump it was squiggy and could be a cist the new rash and old skin mets she was not worried about but the the spine met she was worried it may be a compression on a nerve so she wanted a M.R.I scan on the spine. Because she wanted results as soon as possible she wanted me to stay in the Cancer hospital in Sheffield and she could arrange it better there rather the local hospitals. I waited to hear from a consultant who told me that I had progression in the spine and I would have to wait until all the oncs got thier heads together for my next plan of action in other words the e/e combo has now stopped working. Because he wasn’t sure when the meeting would take place. No way was I going to spend a weekend doing nothing but wait I said my onc wanted to see me Wednesday so he let me have an appointment for then.
Sorry for going on but i thought I would let you know why I hadn’t replied last night. Hope you went on a lot better with your Tuesdays appointment lots of love R xxx
Hi Marirose - sorry to hear about the spine met problem and progression. I don’t blame you for not staying in hospital. Have you had many other treatments?
That’s good news that they’re not worried about the skin mets and lump. I have a harmless lypoma in my leg but had a big panic when I first noticed it. Good luck with your onc appointment. Let us know how you get on.
I started Capecitabine this morning but had the dreaded vomiting again so I don’t know how much I will have absorbed before that. Fingers crossed for this evening. I’ve taken the antisickness a bit sooner this time. I just hope the Cape works as well as Gem-Carbo did.
Best wishes to all the other ladies.
X
Sorry you are going through it with the sickness I hope it sorts itself out all this suffering we go through just to fight gremlins that want to take us over. Not sure what lympona is but I’m glad its harmless you take care and I will let you know what they decide for me next Wednesday love R xxx
Best of luck to all you other ladies going through treatment xx
Oh Bumpkin so sorry to hear about your mets they sound so bad my problems at the moment seem so little compared to yours. I wish I could offer help but I am quite naive my mets have not ulcerated and although I seem to have a rash of small mets they are still in the same area. My treatment has stopped working and I am not sure what is install for me next. So again I can offer no advise on that subject I have just finnished with the e/e combo after 15 cycles and 4 stable ct scan results. I do hope someone will be able to help but I have read back threads on this issue maybe there could be some help for you there. But in the mean time look on the bright side we are still here and plan to go on as long as possible good luck for any helpful information and remember we are all ways here xxx
Hi ladies
Just got back from a lovely holiday with my boys in Crete… It was nice to forget about all this BC cr*p that we deal with…
Next lot of chemo due on Friday if my bloods ok… Worried may have stopped working tho, think my mets are growing again!!
Flo - hope the cape is working well and the side effects are not too bad … I found it very doable
Stresshead - hope you are ok? Haven’t seen any posts from you recently…
Hope everyone else on this thread and the forum is ok - Hugs to everyone…
C xx
Hello ladies, seems we are all having a few struggles at the moment. bumpkin, what a great idea about the picture library…no idea how we could do it though…i’m a complete technophobe!!.
I seem to hve a combination of different mets…i have isolated lumps on abdomen (and now back) and lots of tiny spots and red rash on reconstruction. Have had 6 eribulin cycles now but it doent seem to be working.Had a 3rd opinion in london last week and he seems to favour the hormone route although everything i’ve tried so far has failed…thinking we are looking at going down the everolimus ?? route. I have a scan on 7th september and am going to ask for more biopsies to check my receptor status again. Havent posted on here for a little while as i have been having other troubles…havent said anything before on here as didnt want to burden anyone more than necessary…but on 6th August i lost my mum to this *****disease. She knew she was ill but my dad didnt want her to know with what. Very sad but she did have had a long and lovely life…a blessing we all wish we could have!!
Please keep posting…makes me feel so much better knowing i’m not alone.xx
Dear stresshead. iam so sorry to hear about your mum. I hate this disease! much love SS
Hi stresshead
I am so sorry about your mom… Life is cruel… I lost my dad (totally unexpected) a couple of years ago, and like bumpkin says I can now look at photos and remember the good times…
I will be thinking of you during the next few weeks I know they will be hard especially as you are dealing with this illness yourself…
(((Big hugs)))))
C xx
Hi Flo as promised I said I would let you know how I got on today. My onc wasn’t happy with the Dr I saw he said he doesn’t know about my file and should not have stopped my treatment. She explained I have a slipped disc that and the met in the spine would cause my leg to hurt and the MS would still play up in the other leg he shouldn’t have said it was stable the progression was cancer cells in my spinal column. She wants to compare CT scan from June with MRI and discuss it with radiographer and will concider a bone scan she will ring me tomorrow to let me know. What a complete mess about as if I need this.
Hope your sickness has settled down and your chemo is going ok. x
Bumpkin what a great idea about photos of skin mets mine have been a little different one cluster seem to be dryer and when I think they have shrunk they come back as bad as ever and my rash of tiny mets are still here. I love what your onc said about cirrhosis of the liver I will not feel guilty about drinking now x
C hope you had a lovely holiday it’s what you need to forget this disease for awhile; x
SS I am so sorry you have lost your mum and to this horrible disease as if you haven’t had enough x
Hi ladies
I’ve been catching up on this thread since I’ve only just got back from Holiday… It seems that everyone is currently having a really bad time at the moment.,
Bumpkin - my mets are lumpy with a red rash but haven’t ulcerated yet… So I cant offer you any advice… I hope and pray that your chemo starts working for you…
Marirose - I hate it when we see a different onc, I had five different ones when I was first diagnosed with mets… Hope your regular onc gets things sorted for you… And FAST, the waiting is the worse bit…
Flo - hope cape is having a good effect - zapping those little blighters, and that your sickness meds are working…
Stresshead - all I can say is hugs, and handholding here whenever you need it . ?
My bloods came back yesterday all good so chemo today… Only prob is my picc line came out whilst I was on holiday so they will have to use a cannula… The nurse has already rung me and said she will try her best to get the needle in (my veins are shot from all the chemo) but if she can’t I will have to wait for another picc line to be fitted…, only prob is they can’t fit a picc line until 10/9… I know this is only a little thing compared to some but I’m so so scared she won’t be able to do it and I won’t get my chemo… ?? I think my skin mets are spreading and therefore I’m desperate to get the chemo!! Couldn’t sleep last night even tho I had a sleeping tablet… ???.. I have chemo at home so no other nurse will be around to help…
Was at the Hosp yesterday with my youngest… He’s got to have an operation on his nose, and my eldest is in hospital today for a check up - he has a hernia at 10!! And it really upsets me because I can’t go with him as I have (or may not have!) my chemo… It makes me feel like a really bad mommy, shouldn’t mommys be there to hold their children’s hands when they go thru things like this? I must have hugged him 100+ time to say sorry. He just says ‘mommy, it’s ok, you’ve been there all my life, this once doesn’t matter’… To which I have to go and hide so I can cry!!
And to top it all off my relationship with my ex are not the best at the mo!! So I can’t even talk (or cry on) him!!
I’m so sorry for this rant, having a really bad day today and yesterday… And I know you ladies will be the only one who understand… ???
Nothing like coming back to earth with a bump after a holiday is there!!
C xx
Thank you ladies for all your support.
Bumpkin…my mets are beginning to hurt The rash and small lumps are really itchy…registrar gave me antihistmines which are helping a bit.I have resorted to overing them in sudocrem as well. Some of the skin on the aureola has gone yellow and horrible…the whole reconstruction feels realy tight. The mets on my abdomen and back seem to ache somehow…i just keep worrying that all this is spread to my bones or organs. One minute i think they look a little better, the next i’m in total meltdown.
Ladywolf…oh how i feel for you with your children. My daughter is much older but its stillawful to think yo have ailed them in some way…which of course yu havent. What a fantastic thing for your son to say about you always being there and him not minding this. time…brought tears to my eyes. They are a credit to you.
Cyber hugs to all.x
Hi everyone
Sorry to hear you are having a rough time C after your holiday and what a considerate boy you have my heart goes out to you all who have young children I consider myself to be fortunate that my son’s have grown up with families of their own since my 1st primary.
Stresshead you are not getting much relief from your mets mine tend to itch at times and I cannot bare to wear my bra the mets on my tumour and under my breast are sore so how you go on with skin mets else where I dread to think what it must be like.
I have waited all day for the phone to ring went out at 4.15 sure enough back in at 4.40 and the phone call came at 4.30 and they didn’t leave a message on the answer phone I feel sick. I have been feeling bad all day and now to think I’ve missed an important call from the onc really finnishes me off.
Well wishing you all a good weekend xxx
Barton, thank you for your kind words.
Marierose…i hope you got your phone call sorted…gutting when that happens isnt it, even though you often dont want to hear what they say. xx
Hi everyone
I got my phone call 8.30 this morning the onc said she had examined both June CT and recent MRI with the radiologist and they did a slice by slice on both scans and I am still stable. She said she would be having a word with the onc I saw on the ward. I have a slip disc and along with the met this would be the cause of my bad leg pain also the MS would still play up what a stressful week I have had and the last 4 nights I have been in pain and not fallen to sleep until 3 or 4 in the morning. So now I am back on the e/e combo which he should not have told me to stop and I continue to be a long timer on e/e
Funny enough my skin mets have been irritating today could that mean the drug is attacking them I would like to think so. Love to you all xxx