Hope everyone had a good Christmas, I wasn't particularly looking forward to it,had to take my chemo on Tuesday so knew I wouldn't be feeling wonderful. Have had 3 cycles now and I have big doubts as to whether its working, skin Mets look worse to me,have dried up but that's all. Having scan on Wednesday so hopefully will have results a week on Tuesday at clinic,won't hold my breath what with bank holidays, always delays everthing.
Still finding nausea a big problem,a part of me hopes its not working,don't think I could cope indefinitely with this,not and have a life anyway.
That's my whinging over, should feel better for a few days next week,week off.
Best wishes to all.
Hi to all my 'skn mets' friends...
seems to have been little activity on here..have you all ben posting on the bone mets site?
Does make more sense for everyone to use the same thread even htough, if you 'miss' a few days, it takes ages to catch up!!
Just to let you know where i am , so to speak, I have finished my dotaxetol/capecitabine combination and have just started my second cycle of cape only. Side effects not as severe re; taste changes, nausea but am still constantly worn out, breathless and my toes and fingers are really suffering. Have also had a cough for ages but keep being told my chest is clear. Have managed to get through christmas |(which i was dreading...so emotional for us) but am not loking forward to New Year...very hard to see others celebrating and looking forward when we know what we're facing. Seeing Onc end Jan: he still says i cant have any more than 10 cycles of cape but will review other treatments after scans. Will keep you posted. Please let me know how you're all getting on. Much love to all. x
I was at the hospital yesterday and asked about the cream, unfortunately I forgot the name, anyway she said she hadn't heard of any, (worrying as yours has). What she did say was that if it was as easy as just applying cream why would she give chemo,which I must admit was my thoughts, I'll take the name of it with me next time.
Took my chemo last night and I've changed my anti sickness meds, also got ginger beer, ginger cake and ginger chews so let the battle commence.
Hope everyone is as well as they can be.
Teej - sorry you're in a lot of pain. I was until I started chemo. How long have you been having the immunotherapy? When I first started the chemo the area of skin mets which shows as a rash flared up the first evening, which I felt was a sign the chemo was attacking the cancer cells. After a couple of days I could see the rash was reducing, so I hope the flare up is the trial drug killing the cancer for you and that the pain will soon reduce.
As Bumpkin says, I think sometimes using the Internet is necessary. We need to be armed with information and keep fighting to get the best treatments available.
Lynnq - that's great news that you haven't had any more eruptions of the skin mets and reassuring that they can be stopped.
It's good to have a specific thread to share info.
Take care all.
Seems I am not on my own with this problem, like you surgery is not an option, would need too big a skin graph. When I changed over to the chemo I am on now I had a 3 week break and it was Scary, had so many breakouts so much so I went back to the hospital but they insisted I needed the break. I have only had one cycle of vinorabline, think it has dried up but that's about all.
Its wonderful that your Mets are being kept stable Lynn, that's the best we can hope for. I use to be really optimistic even when I was told it couldn't be cured, I thought just maybe. Well that ship has sailed and to control them would be good now.
How do you cope with the chemo, any sickness? I am finding that the hardest to handle I have anti sickness pills but they don't do a very good job.
Hello Jan and other ladies
We all have times when we feel sorry for ourselves, and why shouldn't we with all we have to go through.
I also have skin mets and I know what you mean about it being more real when you can see it growing. Bumpkin and I are in a very similar situation and I don't know where I would have been now without her help and support.Like Bumpkin, I'm TN. I had all my axillary lymph nodes removed at my primary diagnosis in 2011 but the recurrence this year was in the area where I had extra nodal extension of one node that was missed at the WLE and only found in the breast tail a month later, during the MX. I also had LVI.
When things were not going well on the oncology side of things with this recurrence, I sought a second opinion and I was put on Gem Carbo, like Bumpkin. I've just had 2 cycles but I can see that it's working. Once it got into my skin I was told it's incurable and they stopped operating because they said that was spreading the cancer. I also have a subpectoral node which showed up as being cancerous on a PET scan. I can feel it and had it checked by US in March but it either didn't show up then or I pointed to the wrong area.
I hadn't heard of Imimiquod cream but will look it up next, but I've also seen Fluorouracil cream mentioned on this Forum (I Googled it and it's used for various skin conditions, including skin cancer), with regard to skin mets but I was also told it's possible to give superficial x-ray/radiotherapy which just goes a few millimetres below the skin surface. My problem was that the skin mets were spreading so quickly, in different places and with different morphologies, that it wasn't possible to treat that way. I prefer the systemic treatment (as awful as it is) because I'd rather try to kill off any microscopic seedlings that may be elsewhere before they have chance to grow.
Chemo has a habit of causing me nausea and vomiting and the main thing that has helped me above others is Cyclizine. I have had it as an injection to stop the vomiting and I now have it in tablet form - just need to make sure I start taking it soon enough.
Jan, I hope you soon find something to control the nodules.
Best wishes to all.
Hello ladies, think i need to be added to this 'club'...i had Gr 3 lobular bc with LVI diagnosed in 2011. I had fec, bi lateral mastectomy, diep reconstruction, radiotherapy then arimidex and aromasin. In Jan 2014 i noticed a small lump between the reconsructed reasts and for 5 months was told it ws a sebaceous cyst. Did not have any treatment for 6 months by which time the skin mets, according to my onc, was 'in about 3 places'. I was told it was incurable but controllable. Fortunately scanns at the time showed no further spread...i havent had any since. I have had 6 cycles of dotaxol and cpaecitabine and am due to have 4 more cycles of just cape. I asked my onc last week if it was inevitable that this would spread and he said not inevitable but, as it seems to have spread via the bloodstream, it was probable. Not really want you want to hear is it. I am concerned at the moment that after the cape the only way forward seems to be regular monitoring, maybe radiotherapy and femara (why this one will work when the other two AI's obviously didnt i have no idea). I have also been told that they canot operate because it is in 'too awkward a place' and thatit would involve substantial skin grafts. It seems that everything will be reviewed at the end of the chemo. I find living with the uncertainty very difficult and while i wish this on no one its comforting to know there are others who really understand what its like... I am interested to know anything about the cream mentioned in these posts and also the types of treatment you are expecting after the chemo. Love to all xx
Just been reading about that cream on line, sounds wonderful if it works. I might mention it to my onc on Tuesday be interesting to hear what she says. Would'nt it be great if it was that simple no chemo just rub some cream on and that's it. I expect there will be something similar around one day chemo has been with us for so long its about time it was designated to the history books.
We can dream, making the most of feeling good before I have to go and collect my poison next Tuesday.
Think I have too many to remove now, I did have a lymph node removed under my arm after about a year of pestering. I knew there was a problem, had it removed under a local anaesthetic at our local cottage hospital and yes it was cancerous. Other than that my scans have shown no further spread to any other organs, was a mark on my liver but the powers that be seem to think it is a cyst nothing more sinister, hope they are right. Seems my cancer is trying to make a break for it through my skin, wish it would hurry up. Its hard to make a decision to have all that surgery, especially when there's no guarantee that would be an end to it. I also had LD reconstruction.
My first cancer diagnosis was would you believe way back in 1985, I had 20 years before my recurrence, I have never had any intravenous chemo over all these years,
Thanks for your reply 2catlady.
Thought I was on my own here, couldn't find anyone with similar. I have had them for about 2 years but only really noticeable for a year. I had mastectomy with recon 9 years ago and are not actually on that but to the side and on what was my good side. At first I thought why not just take them away but was told they would just come back.
What's that treatment like you are on?, not heard of that, mind its surprising what's in their arsenal, keep thinking I most be running out of options then along comes another.
Back to hospital on Tuesday for next oral cycle, see if they will give me some stronger anti sickness meds.
Just wondered if anyone else has this, its like nodules over my chest area, some break out and weep or even bleed sometimes. With the various chemos namely capitabine, Faslodex, and everolimus and exemestane have kept them under control up to a point, but now changed to vinorelbine as there has been recent progression.
Only have done one cycle and have had a fair bit of nausea hope it works, being able to see it makes it more real.
Having a feel sorry for my self day today.
Best wishes Jan.