Hello ladies - I mentioned to Bumpkin that you were worrying about her. She’s just taking a break from the Forum for a while but she appreciates your concern and kind wishes.
X
Thank you so much DBNO thank you so much I was worried that no-one could get in touch with Bumpkin I do hope she is ok and will you please pass on our love to her.xxx
DBNO…thank you so much for telling us about Bumpkin…i have been so worried. Please pass on my very best wishes: tell her i think about her all the time and hope that she will feel able to post soon.x
Marierose…can you remember how long it was before your ulcerated mets began to dry up and new skin appear? since my last post mine have started to exudate again and i’m scarted that the cape isnt working and they are getting worse. They seem to have got worse since i started to shower so my district rse has told me not to do this to see if they improve then just use process of elimination. I find it hard sometimes when i suddenly remember that ‘because of what they are’ as my nurse says, they will never heal and my skin look normal. I dont think i’ll ever be able to wear a normal bra again or be without dressings for that matter. Its often little thigs like that and not beingable to wear many clothes that get me down more than the disease itself.
Love to all. x
hi ladies…i’m not really going mad writing two seperate posts at the same time…i wrote the last one yesterday but forgot to post it…bit of chemo brain kicking in !!
Disappointing day ay hospital today…my tumour markers are up…since asking for them to be done they have gone up from 34-37-42-44-51. The doc said not to bother about such small jumps but i wold have been mch happier to see a small decrease. The last one was done after one cycle of cape which he said may not have been enough to have an effect. Also for the first time ever (apart from one episode of netropenia when my primary was diagnosed) my bloods came back showing low calcium even though i am taking ad-cal. again i’ve been told not to worry but it doesnt stop me. I’m just worried that things are going to go wrong before i get to try the electrochemotherapy or start the trial. Sorry to be so negative…think i just need some reassrance from you dear ladies who know what its really like. Hope you are as well as possible and keeping upbeat. Lots of love.xx
Dear Stresshead
Please don’t allow yourself to get stressed again you were doing so well. I was reading a magazine that was being given away in our waiting room at the hospital it’s called ICON and describes its self as integrative cancer and oncology news. It really has given me alot of interesting reading. It named stress as being very detrimental to cancer so please please settle down I know it is hard lets hope the electrotherapy oppointment comes soon.
You asked about my skin met ulcers healing looking back on past pages no4 is when they started to heal which was 11 Nov I remember one began bleeding instead of the awful excudate I did get a little discharge that was hit and miss until it gradually stopped.Scabs started to form eventually dropping off and revealing pink skin on the ulcers the one on top of tumour took a little longer but formed a whiteish skin I decided to try to go without dressings and just relied on the vest I had been using instead of bras. The gp nurses were suprised how quick they had healed although they were still a little raw. I started cape on the 18th Nov the next time I saw the onc was 2nd Dec she maintained it was the cape that had healed it funny it started healing before the cape.Gradually white skin appeared after being red raw for months that was before Christmas and I bought myself some new bras from a shop that fitted the right size for prosthetics. I know they were dear but they feel so good. My old mets look less about 3 dissappeared from the second ulcer and the tumour ulcer I think 4 I am left with 2 oval scars one pink and one white and loads and loads of tiny bubbles underneath both breasts down the upper stomach a few old red ones with white skin and the odd paler ones dotted about the other side on the breast and upper stomach again but I feel better with myself and I don’t wear the prosthetic because I don’t want anything to irritate the bad ulcer again because it falls in the crease under the breast.
I do hope you get on with your ulcers Stress I am trying to send you lots of good vibes to help you.
Lots of hugs and love xxx
Cress - what a nightmare with your allergic reaction. It must have been pretty scary and I can understand your reservations about tomorrow’s treatment. Best of luck with it all - sounds like the nab-Paclitaxel is going to be better.
Marirose - your skin mets sound much improved, which is fabulous to hear.
Stresshead - I will pass on your message to Bumpkin. I did tell her that you all care very much about her. No apology needed for being negative. I hope you can take heart from Marirose’s experience but it’s hard waiting and wondering if a treatment is going to improve things. It’s not surprising that you’re feeling stressed and I hope you can find a way to feel calmer. No wonder it gets you down when you can’t just put on the clothes you want to wear and at least have that bit of comfort and normality. I hope you soon get the appointment for the electrochemotherapy.
Jan - I’m glad some of your mets have dried. I’ll be keeping my fingers crossed for your scan results next week that it shows reduction, or at least stable.
Best wishes to the other ladies not mentioned.
X
Hi Julia,
Goodness, what a scary experience it must have been. At least there is the alternative of nab-paclitaxol so you aren’t going to miss on taxol treatment due to your allergy. All the best. xx
Hi Jan - that’s great news that the chemo is working but I understand your feelings about when this chemo finishes. I can see my skin mets growing again whenever I have a week’s break in treatment, so it is pretty scary (however, I know I’ve been lucky to have such a good response to chemo so far). I suppose they could keep you on this chemo until the side effects become too debilitating but we all react so differently that it doesn’t necessarily it will have that effect on you.
There are a few immunotherapy trials currently on the go and more will be coming up in the next months, so hopefully there will be something else for us all to try when we come to the end of the current chemo options.
X
Hi everyone
Julia what a terrible experience you had must have been very frightening I do hope you are ok now:heart:
Jan I was so pleased to read your results were so good I bet you are feeling much better about yourself.
Stresshead how are you I do hope those ulcers are showing some sign of healing I am keeping my fingers,heart crossed in the hope that they are.
Redridinghood I do hope your patch is still stable and you are ok.
DBNO just read your post your skin mets are returning what a sick feeling you must have wouldn’t it be great to get rid of them. Mine are settle at the moment but look as though they are laying in waiting.
Sorry if I have missed anyone.
JulieD has opened a thread for Belinda on the dedications threads I know we all miss her and she deserves to be remembered.
Love to you all xxx
Dear Mo
Thankyou for the accolade I don’t really deserve it there are so many knowledgeable ladies on this forum of which I am not one of them they have taught me alot. I think we all learn from one another which makes this forum good.
Your radiotherapy sounds like a good idea but it will wear you out for that week but good luck with it. I couldn’t have had rads to my skin mets because I had 25 intensive shots back in 1996 and it has left me scared I couldn’t have it for my chest wall tumour or the new lump in the same breast.
It’s not going to help if you are getting up at 3 am you need to get your sleep especially working too. It is funny how 2.30am to 4am seems the time to wake up and gets you thinking. Usually mine is pain I used to get up and try to do something to make me want to sleep but I found it brought me more awake. I now get up take a couple of paracetamol and go back to bed it usually it works.
Well keep us in touch with how you go on.
Best wishes to everyone xxx
Hi Ladies, thank you all for your encouragement in my ‘dark’ hour. Not over it yet but at least a bit of positive news. I am to have electrochemotherapy in MArch, assuming i grt through the pre op and lung function tests…that is worrying me a bit as i had the pulmonary embolism so all i can do is cros everything and hope!!
Of course i will keep you all informed. I also have been told there is a trial (immunology) i can go on but have been advisd to keep going eith the ‘proven’ treatments first. Only trouble is i worry that by that time i wont be fit/well enough to go on it. As you can see my name on here is very appropriate but i am trying to follow your advice Marierose…honest!! By the way Marierose want to echo what Mo said…you are an inspiration…i’ve lost count of al the times you’ve picked me up…bless you.
Thanks for the update on your mets Marierose and Janice…sometimes i think mine are going well and then the gunge starts again. My district nirse is trying a new dressing called hydrosorb…supposed to be cooling and soothing…only doing a smalll patch so cant really tell if its having much effect yet.
Cress…hope the nab is going well and your 's have subsided.I did ask about Abraxane when they put me on weekly taxol bt my onc said it was no more effective than weekly taxol. Sometimes i wonder whether it all comes down to money!!..sorry i shouldnt be so sceptical.
RRHood…how is the radiotherpay going? I sympathise with the driving…i seem to spend most of my time to and froing to London…its ok for me i have OH to drive me (although he is now has arthritis in his knee and it is very painful for him to drive). Can’t realy afford the train every time and i find it very diofficult to knowwht time to book return journeys for as you never know how long your apointment will take. Still, as long as i think its doing some good i will get there one wayt or another!!
Jan…was so pleased to hear your good news but understand exactly how you feel…living life on a knife edge is no fun is it? still try to enjoy the good news as best you can.
Sending hugs and kisses to all and apologies to those i haven’t mentioned…much love xx
Hello Ladies I do hope you are all feeling fine
Jan pleased to hear your chemo is doing some good but it is hard to trust these treatments not knowing if they work. I am waiting for results for the cape on Wednesday. I have been reading back posts and I saw your age in one do you know you are one year older than me so I think feel I know how you feel.
Stresshead how I am keeping my fingers crossed for you that the pre tests for your elctrochemotherapy. It sounds your team are at last working for you about time. The last patch I had was aquacel which was small and it kept falling out of the tube holding it in place on one occasion my OH found it and made a fuss about the discharge on it and that was only a light one near to the end when it stopped. So goodness knows what he would have thought when it was really bad. I hope yours will come to an end soon. It feels so much better having the ulcers healed just wish the spots would disappear but that doesn’t seem to be happening. I hope your OH is managing his arthritis it really is bad when it gets in the knees my brother was to have his knees done on the 4th Jan when anaesthetic said because his heart was bad he wouldn’t do it.
Redridding Hood are you getting your sleep in readiness for your radiotherapy you will need to build up your strengh enjoy your stews.
Bumpkin DBNO hope you two are both fine. Wolfie were are you when is your next adventure. Julia and Waffles thinking of you too.
Love to you all xxx
Hello my dear ‘skinny’ friends…things seem a bit slow on here lately…hope ypu are all feeling as well as possible and hopefully looking forward to spring.
I went yesterday for my pre op and lng function tests and as far as i know all were ok (the lung nurse even said my readings were better than hers but don’t know if she meant it) so hopefully it will be all systems go for eletrochemo in march.
Marierose…thanks for your good wishes…tjings do indeed seem to be moving but none of it down to my ‘team’…i have had to source all the info atc myself and practically force my team to do referrals. I consider myself lucky that i have been able to do this…i often think what wold have happened if i hadnt been able/had the nounce to trawl the net, make endless phonecalls etc or been able to afford trips to and from London virtually every week!!
My ulcerated mets are looking better i think but still have the red rash and bumps all over my stomach and back…and i am in constant ‘itch’ mode…its driving me mad!!
RRH…hope the radio is underway and helping. My onc said i couldnt have it as i have already had it but i may push the fact that i had it to my chest wall not my stomach and back…anything to get a bit of relief! iI am currently under UCH, Royal Free and Marsden…they all seem to work and communicate well together so i’m hoping i get some success…won’t be for the want of trying!
DBNO…how are you? was interested to hear aboot new immnotherapy trials…if you get any more info please let us know. I’m nor sure if the one i am ‘down’ for is immunotherpay or targeted therapy…i’ll have to check up. Please continue to give Bumpkin my best wishes and tell her i miss her.
Janice…hope you are still on the ‘improving’ road and that you have been able to enjoy it. If only everyone in this world could understand how precious time is.
Wolfie…how are you? havent heard from you in a while…hope you are just very busy with your lovely boys.
Any more holidays planned?i really dont know how you all do it…apart from the odd long weekend we havent been anywhere…just don’t know how i would cope with dressings, line etc especially abroad when not as easy to get to a hospital if necessary(not to mention the insurance!), not being able to get in the water, shower etc…if only we could guarantee good weather in England.
I seem to be saying a lot of ‘if only’s’ lately…IF ONLY WE DIDNT HAVE THIS WRETCHED DISEASE!!!..there i’ve had my rant…i’ll try to be more positive with the help of all my cyber friends.
Much love to you alln and anyone i’ve not mentioned…Waffles, Cress etc.xx
Hi Stressshead
So nice to hear from you but sorry you have got that rash. Do you remember when I got a rash that looked like nettle rash and itched real bad I had it all over the chest and down my stomach. The onc said it was foliculitis and gave me antihistamine which stopped the itching and antibiotics but that rash took ages to go she adimited that it looked as though it was cancer based. If you are not seeing a doctor yet I would get some piriton to stop the itching I remember it being sooo bad.
You are sounding so much more positive these days and yes you have fought so hard to get answers. I am glad you are fit enough to have the electrochemo and I look forward to seeing how you go on with it. Btw where are you having this treatment.
Sending you and our other skinny friends much love xxx
Marirose.when I went on capecitabine I developed a really itchy rash all over back stomach looked like id been attacked by a tiger.it felt hot .and i felt better to keep cool.onc said it was allergy to capecitabine.gave me antihistamine injection and tablets.it went after couple weeks.and i stayed on capecitabine…Sharon…x
Hello Scratch
How long have you been on capecitabine? I don’t think your rash will have been any thing to do with cutaneous mets you really don’t want those they are like chicken spots but grouped together. Your onc would have been right about it being a reaction to cape I am glad it has gone.
You are welcome on this thread so do not feel because you have not got the skin mets you don’t belong.
Love M xxx
Marirose. I was on cape for about 15months.it stopped working.then letrozole for ten months.but got progression …treatment at moment docetaxol scan yesterday dont get results till 23rd.x.
Hi cress
.iv used ice cap on docetaxol and had 3 so far and no noticable hair loss.finger nails seem to have changed a bit lifting a tiny bit from top of nail.not on all nails.I read to wear dark nail varnish to stop uv light to get thru and react to taxols…no I havnt used icemits and feet.as the coldcap is enough cold for me to cope with.best wishes Sharon.x
Hello all
Hope everyone is as well as they can be.
I’ve been struggling this past week, had 11 treatments now and have felt rough after last weeks and this weeks is almost here. One lady at hoispital is on weekly Paclitaxel same as me and I’m sure she said she’s had 33,not sure I’ll be able to cope with that. I find all the chemos I’ve had have had an accumulated effect so that doesn’t bode well.
Weekly chemo means weekly blood tests, up till a few weeks ago the nurse really struggled to do this having numerous attempts, but the last couple of weeks I have drunk loads of water before I go and she’s managed it first time.
My mets haven’t gone but have improved,I know if I stop chemo it will get worse and I must be running out of options as far as treatment is concerned now.
At least the suns been shinning makes such a difference.
Best wishes.
Jan
Hi Janice
So pleased to hear from you glad your skin mets are behaving themselves mine are doing on cape as we all know it only lasts until the end of chemo treatment. Will you be given a rest from treatment at some time I am not knowledgeable with paclitaxel. All I can say is hold on in there and keep yourself fit in mind and spirit maybe the drug will get easier I hope so for your sake :heart:
I am feeling quite well on this cape apart from the discomfort with the hands I have lost sensation with the finger tips but they could worse I keeep them well moisturised. But what we have to put up with to grasp more time.
Anyway lovely to hear from you I miss one or two on here who have not posted for a while You take care and thanks for posting.
Love to all our skinny friends xxx.