Hi marirose
That is good news… Hope your oncologist has a very stern word with the onc you saw… Need to realise how what they say can really affect us…
Here’s hoping you have a better nights sleep…
C xx
Hello ladies
I’ve been trying to catch up today with what’s been happening with everyone. Sounds like we’ve all been having a mixture of good and bad.
Stresshead - I’m so sorry to hear about your mum. It must be so much more difficult to cope with when you’re going through such a lot yourself.
Bumpkin - fingers crossed that the mets will improve soon.
Ladywolf - what a shame the holiday high was short lived! Your son sounds like a lovely, caring lad - clearly gets that from you and not his dad…
Marirose - great news from your onc…phew!
Hello to all the other ladies - I hope things are going as well as can be. I often think about Janice and how she’s getting on after setting us up with this thread.
I haven’t taken at all well to the Cape. Had to stop taking it after 5 1/2 days and have some steroids. I just couldn’t function and have had a number of bouts of really gut wrenching vomiting. My body is now completely devoid of any bile…yuk. Started it again today so felt less well than yesterday. I have managed a 5 minute walk the last 2 days. Not convinced it’s worth the side effects so will have to discuss at my next onc meeting.
X
Hello Downbutnotout, sorry to hear you are having such problems with Cap. Did your Onc prescribe any anti-sickness meds with the Cap? Mine did, but luckily I didn’t need them for the time that I was on Cap. If he didn’t, it would certainly be worth asking when you see him/her. Wishing you all the best. Hugs, Barton.x
Hi Barton - thanks for your good wishes. Yes, I have antisickness tablets but I was even sick a day and a half after taking a break from the Cape, which really took me by surprise. I’m just wondering if I’d caught some sort of bug the week before starting the treatment as I already felt a bit sick in the days beforehand. I’ve been completely wiped out by the tablets again all morning but things are improving now, and two whole days without vomiting… yay!
I hope things are going well for you.
X
Hello all
Well I finished 6 cycles of ec chemo and just as my last cycle ended my Mets came back,seems its only while on treatment its effective. I had ct scan 2 weeks ago and I am due at hospital next Wednesday for results,don’t feel overly optimistic.
Before I started this thread I had not read of anyone having skin Mets, seems I’m not on my own after all.
Best wishes
Jan
Hello Jan - I’m really sorry to hear your mets have returned after all those cycles of EC. I hope things are better than expected with your scan results.
X
Marierose…great news. I think the e/e combo is next for me as chemo doesnt seem to be working…hope i have as much luck with it.
Downbutnotout…have you tried Emend antisickness? its not routinely given as i believe it is very expensive. I have to go an hor before my chemo to take it because they wont let you take it home (although after chemo you take 2 tablets home to see you through the next two days). I have it along with metroclopromide as and when necesary. May be worth asking.
My mets dont seem to be any better…in fact they are worse. I am really struggling with a very sore and weeping reconstructed breast specially aroung the aureola area. I have now resorted to breast pads and sudocreme but nothing is helping. The itching is driving me mad. Back at oncology Thursday so going to ask breast nurse for help. Any of you had same problems??
Hope everyone is well and coping as best as possible.x
Before I had 5 rads treatment, mine were weeping badly I use to use a tenna lady inside my bra, the sticky part stuck to bra and it really helped. No doubt be back to that the way things are going.
I hate seeing myself it looks such a mess,as if having cancer wasn’t bad enough without having it in your face.
Hope you get on all right at your hospital appointment, mines tomorrow for CT results,not looking forward to that. I use to be very positive but not anymore,too many knock backs.
Best wishes.
Jan
Hi everyone hope you are not suffering too much with the irritating skin invaders mine seem to be itching more than usual wish it was getting better but its alot worse from 11 spots I must have loads more now with the rash of very tiny spots.
Jan how did your scan go I do hope it was ok. I thought the tena lady pad was a good idea I cannot wear my bra because the mets now surround my chest wall tumour and the crease under my breast these are now ulcerated. The onc knows about this and she has seen me trying to dress it myself also leaving my bra off but I have never been offered any help with it but then I have never asked for help maybe she thought I was treating it quite well myself. I don’t think they will ever go away so I must resign myself to the fact.
Sorry to go on abit but love to you all xxx
Hi ladies…a little more on the itchy, weepy saga…i saw the oncology registrar on Thursday and i told him about the problem (which i had made worse by securing a pad with micropore and even that rippes my skin off, like burns). He advised to leave the area open to breathe…impossible!! Previous to that my psychologist had suggested i contact the breast unit…why didnt i think of that!!! Anyway i went across and they put an iodine dressing on and gave me some cream (eye ointment whch apparently they use a lot)…they also advised to leave open to air as much as possible and not to use pads or padded bras. The Dr there also said something about remaining positive so now i’m thinking that they think it couls be something else!! Also because of the open sores i wasnt allowed to have my chemo which worried me even more, even though i know its not working. My mets seem to be spreading a lot. My other ‘breast’ has now got an area of rough thickened skin so it looks like it has reached the other side. I have asked for a ‘second mastectomy’ before but seems its not possible. I have a scan tomorrow which i’m dreading and then back to my onc, who i now havent seen for 10 weeks!!. to get results. I can’t see how its spreading over my skin without getting to my organs. Needless to say i’m now terrified they are going to say as nothing has worked so far, its too late. Irrational i know but i’m sure you all understand. Thank you for listening yet again. Love to all.xx
Hello all
I was at hospital last Wednesday and the oncologist was thrilled with my CT scan results,seems the legions on my liver almost gone. This was until I told her that my skin Mets had returned after last cycle of chemo had finished.
She has put me on Tamoxifen to try and stabilise things for the time being,but that didn’t work for me before.
She then suggested TAC chemo in the new year,this would be weekly and indefinitely which I don’t think I could do, knowing I only had to have 6 of EC helped me get through it.
Think I am getting to the stage where enough is enough after almost 5 years of various chemos, anyone else ever feel like that?
Well while we can we are going to book a holiday and think about treatment or not later.
Best wishes
Jan
Hello ladies
Janice - after such great news about your liver mets it must be really sickening that the skin mets have returned. I do understand your feelings re the indefinite TAC. I haven’t had as much treatment as you but my recent experience with Cape has made me really think long and hard about quality of life against longevity. I suppose the best thing would be to give it a go and see how you respond. We tolerate some treatments more than others.
Enjoy your holiday. I hope you can put it all as much to the back as your mind as possible while you’re away.
Stresshead - I’m so sorry to hear things are so difficult. Skin mets are such a nightmare. I hope you’ve had a positive experience seeing your onc following your scan yesterday.
Thinking of you all.
X
Hi Belinda I agree we need to ask for help from our GP’s to see a nurse to help with dressings for the mets. I am not using anything but cream and I am wearing top simular to a camisol and no bra it has stopped the mets from being sore but they itch so much wish it meant they were getting better but they are not.
SS You sound as though you are really suffering I do hope your BC team can help you. You mentioned in one of your posts you may go on e/e remember it has done nothing for my mets infact they have increased and I have been on it 14 month my mets have been with me 17 month. Please try to not let it get you down easy to say when it’s not me I will be thinking of you good luck for the scan.
Jan good news about the scan but sorry you have got the dreaded invaders back it must be so distressing to see them back again my heart goes out to you.
Love to all fellow sufferers xxx
Hi just been to the Doctors to get advice about dressing for mets. All seemed a waste of time never seen this Doctor before because she was a women I thought she would understand more. She didn’t say much never looked at my details and passed me onto a practise nurse who patched me up the best way she could think of gave me an appointment for next Monday also gave me 3 dressings. I felt neither one knew what they were I had to explain that they were from the breast cancer tumour. Wish I hadn’t bothered all she did was what I had done myself before. Feel quite depressed it’s as though they don’t care. The mets are driving me up the wall continually itching or is it my tumour good job I am at the hospital next week. Do I sound as though I am moaning. x
Hi marirose
I’m so sorry that you didn’t get any help at your gp’s… I sometimes think that female doctors are less understanding than the men!! Don’t give up, keep pestering them until you get something that will help… I use sudocreme on mine without dressings but mine haven’t ulcerated and tbh are not that ichy… As belinda says it is a quality of life issue and they should be able to sort something for you… Sorry I can’t offer advice… But I am thinking of you and send a cyber hug…
Wolfie xx
Thanks Belinda and Wolfie
I am not giving up yet next Monday is when I see the nurse again and they have an inspection from someone that checks up on surgerys I cannot remember the initials I may get asked for my opinions with any luck. I have been out for dinner and have felt so down I cannot let them do this to me. x
Oh Bumpkin
What a lovely lady you are. I am not sure how to use a computer properly with pm’s although I have had a look and I think I could do it. Can you buy the creams and coconut oil from Boots? Now that the dressing has been on a while the itching seems more in the breast as I have another tumour there I now am starting to get concerned I shall be seeing my onc on Wednesday. I really wish I had gone ahead with a mastectomy 19 years ago but was talked out of it by a registra. Too late to let that bother me now I’m fighting another battle and this time I have Cyber friends to chat with who give me lots of information.
Thankyou everyone xxx
Now I must join Nurse Marie at the cafe I loved your post x
Hello ladies
Marirose - the mastectomy didn’t stop my recurrence.
Sorry to hear everyone’s having such a rubbish time. My main problem has been the intolerance to Cape, which I’m still struggling to recover from. Just when I think things are improving I have a setback. I’m hoping to be well enough to start a new treatment next week because I hate delays in treatment when I know the mets are spreading but I’m so worried about how I’ll react to it.
Stresshead - I hope your onc meeting went well.
Sending good vibes to you all.
X
Dear All
I would like to thank you all for your help I found the dressings make the tumour area and the cluster of the biggest mets have well and truly ulcerated I think trying to dry them seems to be the best method. The itching seemed to ease a little but now my breast is now covered with more mets can’t wait for Wednesday.
SS how did your scan go we haven’t heard from you for a bit I do hope you are ok
Flo I do hope cape starts to get easier for you it really doesn’t help when something that is supposed to help you causes so much discomfort and makes you feel worse
My love to you all xxx
Hello Marirose, thanks for asking. Actually just come back from the hosptal today as the breathlessness was getting worse and I was getting a bit scared. They are going to do an ultrasound on my lungs tomorrow to see how much plueral effusion there is and if there is enough (?) they will drain it. I must say I will be relieved as this breathlessness is getting me down and stopping me from doing anything. The doc did say that the plueral effusion causing me more breathlessnes is not neccesarly a symptom of the cancer getting worse it could just be that is particulary irritating. Not sure about that we’ll see. Anyway going to spend another day at the hospital and may have to stay in overnight. Worth it though if I can get a reduction on the breathlessness. Marirose the se from your mets do not sound good. I remember I had an ucerated wound once from a liver ablation that got infected and the Marsden used to dress it 3 times a week with a silver compound that they pressed right down inot it , they also said they used medical honey as well. Just a thought. Much love to all xx