Hello marirose
Please don’t be annoyed for me gatecrashing here as I normally don’t get involved but :
My son’s dog has cancer in his leg and vet cut out as much as poss but left him with a big hole in leg that after 8 weeks wouldn’t heal …then came up with a final idea …Manuka honey …after five days …it was all healed .
Have u tried that on your Mets for a bit of relief.
Hugs xc
Dear Carolyn
I have heard of Manuka Honey but I don’t think itt will do anything for my skin mets. I keep them moisturised but they do not give me any grief other than just being there and increasing. But thankyou for your concern it is much appreciated.
Dear Mo
You always know what to say. I will see the onc in 2 weeks time so not too long to wait. I just don’t feel so sure about Hull hospital after I have googled it. I cannot see anything about ECT. But then my onc should know if it is suitable for me she would not have applyed if it was not I suppose it will be the waiting game for an appointment like most hospitals. You do not always get proper answers from google and many treatments are outdated information. I will contact the secretary if I have any queries about it she is really nice and helpful.
I do hope you are moisturising your patch and I am glad it is no worse.
To all my skinny friends hello and stresshead you are in my thoughts Jan I hope you feel a little better about yourself.
Love and (((((hugs))))) to you all xxx
Thanks for taking an interest Carolyn, I have heard how good this is for various sores,but not sure it would work on ours.
Appreciate your responses to my post but I am not sure about more chemo, feel that in couple of months I will be back here having suffered yet more side effects for what. Fed up with eyes and nose running all the time, due to having no eyebrows or lashes, mascara was the only makeup I used.
I have been on one chemo or another for 5 years now they all seem to work for a while,this last one Paclitaxel I had weekly for 5/6 months was at hospital twice a weeks some weeks.
Maybe I will feel differently in a couple of weeks time,have to wait and see.
I wish there was someone to discuss the way I feel with, at hospital I was told I could try Eribulin and then given a sheet with information on,not the same.
Jan
Hiya ladies.
I will say goodbye from this thread as I have no experience at all of what you are going through!
Felt awful after I posted about the honey thing that helped the dogs cancer and realised it was very thoughtless of me . Sometimes I just don’t think !!
Anyway I will say hugs to you all and get back on my bone Mets thread ! !???
Dear Carolyn
I agree with Jan you are only trying to help and we didn’t mind your comments it is good that people read this thread we would not like you to have to join us but would like you all to be aware that this can happen to anyone with metastatic breast cancer.
Jan I can understand how you must feel spending so long having chemo maybe they will give you a little rest from it before starting again. Smartie is on Elibrulin she has been on it awhile maybe she will look on the thread she started she did not get anyone to answer her post.Scroll down the threads on here nearly to the bottom it says Eribulin and Skin Rash maybe you could get in touch with her from that. Best of luck
Mo you are a treasure I went onto the web page you put me on but I could not open the thread you suggested because I did not understand the Pdf or my computer but I managed to get into it this time and printed the information it sounds quite good at least I am not as worried about Hull Royal Hospital and like you say I can make notes for my onc when I see her.
DBNO are you home yet would love to hear from you.
Love and ((((hugs)))) to all skinny friends xxx
Hello all and thank you for your reassurance about denosmab…off to dentist tomorrow to have teeth and jaw checked before hopeflly starting it next friday. My breathing is still ok and i’m using the oxygen mch less now so something seems to be working at the moment.
Marierose…my onc at home put me on carboplatin: i still havent heard from the (removed due to Ts and Cs) about seeing Dr (removed due to Ts and Cs) despite input from my Oncolgy nurse, UCH etc…looks like i will have do do more chasing myself.When i had my ECT i had to stop cape for 5 days before and 5 days after so that wasnt too bad at all…i think the complication comes when you are on iv chemo but i may have more info when my onc has decided if i can have more treatment. Keep plugging away at Hull!!
RRH…i already take Adcal so hopefully will be ok with the denomab…i hate them and try to chew them away as quickly as possible but if they are doing me good thats all that matters.
Janice…so sorry to hear aboit the progression…as you know i was hit with a double whammy recently and it does knock you for six, esprecially when, like you i am going through diferent chemo’s at a rate of knots(??).
I had eibulin which unfortunately didnt work bt it was an easy chemo as far as i can remember. Also same story with weekly paclitaxel but i’m sre you will ahve more success…please keep us posted.
Carolyn…if you are reading this please dont think yhou are gatecrashing and dont think you need to apologise for anything. As the others have said we are grateful for any information. In fact, i have also heard of manka honey and found out about a dressing which contained it. my district nurse said it was good but could stick to the wound so in my case (with open wounds) probably wouldnt be suitable, so what you said was not insensitive or rubbish at all.
Love to all. xx
Hello Skinny friends
Mo thankyou for your help with the Hull hospital you have helped alot I now feel more confident about going there also the wait for an appointment I will have to be patient. I have printed it out so that I can study it.
I used to like my vista program but when hubby changed it to windows 7 I wanted to give my computer to my grandson and buy a new one (laptop) the new one drives me up the wall it is so sensitive and jumps about such alot but then I am not very computer wise and cannot get the hang of it. I really need to get used to cut and paste even that is hard on this one but I will persevere.
Hello Stressshead you really do seem so much better. I am pleased you are needing the oxygen less good luck with the Denosumab I hope you don’t get any side effects I have not had any trouble with it in over 3 1/2 Years and as you know I have many bone mets.
Jan I hope you are feeling better with yourself you know we are all here for you.
Love and (((hugs))) to you all xxx.
Hi Skinny friends
Good news this morning I got a phone call from Hull Castle Hill hospital they have vacancy for Friday this week to see the plastic surgeon for ECT so it looks as though things may be moving now. Just have to find out where it is. Sat Nav says it is 1 hour and 6 minuets away thats not including traffic jams or road works
.
Mo thankyou for all your concern sharing with me and making me feel better about Hull.
DBNO I read your post regarding your Germany visit it all sounds very positive and I am glad you enjoyed the visit. I am sorry your skin mets have spread did they suggest anything regarding them. I would love to know how you are getting along with it all.
Stresshead I do hope you are continuing to be positive and using that oxygen less.
Jan I hope you are getting on with your new treatment ok
Love and (((((((((((((((hugs)))))))))))))))) to you all xxx
MArirose
So glad u have an appointment for ect. .hopefully they will fit you in fairly quickly and get it over with. It will make you feel so much better and what with your bones stable now …you will be running the London marathon soon !!!
Sending hugs xxxx
Hello fellow skinnies - I’m trying to trawl through all the posts that I missed while I was away.
Marirose - that’s great news about Hull, and so quick. Roll on Friday. Do keep us posted on how that goes. Thanks for your support, as usual. My mets are back under control from the two lots of chemo I had in Germany. I’m having weekly Paclitaxel at my usual hospital to keep things in check while hoping the immuno gets going. I shall let you know how that gets on. So far I just have some big lumps from the peptide injections, but that’s the response they were looking for. The Taxol has made my hair fall out, again. If I could just keep my eyelashes that would do me.
Re Carolyn’s comment about the Manuka honey, many years ago I was in hospital and the husband of the lady in the next bed had Manuka honey put into a rather large hole in his abdomen to heal some surgery which had become infected. So it does sound like a possibility for healing ulcerated mets. Carolyn, if you’re looking at this thread, I think anything’s worth a suggestion when other things are failing and it’s kind of you to take the time to try to help others.
Stresshead - I’m glad to hear your breathing has improved. I wish you continued improvement. Good luck with the Denosumab and I hope all was well with your teeth and jaw.
Jan - I’m sorry you’re feeling so down at the moment. It has certainly been a long, hard slog for you and when I’m faced with a new chemo my heart sinks at the prospect of the potential side effects. Apologies for only just seeing your post but I was on Eribulin for 7 months. It kept my mets stable and it was by far the easiest chemo I’ve had. In fact, it was hard to believe I was having treatment, I felt so good on it. I even got back to fell walking after losing all my muscle and stamina from the Capecitabine last August & September.
Mo - your stitching group sounds great, it’s just my kind of thing - sewing or knitting and a cup of tea. Also, you’ve put a lovely image of bats in my head! I once woke up to find one whizzing around my bedroom. It eventually latched on to the curtain so I just left it and it had disappeared by morning.
I hope I haven’t missed anyone. I shall say night night for now.
X
Morning Skinny friends
Oh Carolyn how I wish I could run even if it was just across our lawn to chase the grandchildren. My MS took care of that years ago it turned my right leg into a dead leg the hips are going and the ‘C’ decided to visit both legs in other words I am a wreck in the running dept.
DBNO I will let you all know how I get on tomorrow at Hull and Mo thankyou for the advice about making notes Stresshead maybe if you are reading this you could advice me on what to ask.
Love and ((((hugs)))) to all xxx
MArirose.
This is so cruel loosing mobility and I miss being active with the grandchildren too. When I c oncologist in a few weeks time with the scan result …my first wish is to b able to drive again. Hoping bone juice is strengthened the hip and femur enough . I know an automatic car is the perfect option but am holding on to my own car for a bit longer. In the meantime I get chauffeured everywhere but we are central to lots of shops etc so don’t have far to go.
Xxxx
Hello all my skinny friends,
hope you are all as well as possible. i’m back on the old rollercoaster: went to onc clinic yesterday…i’m still losing weight (about 2kg every 3 weeks) and my TM’s were higher than ever…jumped from 73 to 125. I am so down and scared after thinking that things were looking up. I also have a bleeding area on my left breast now which i havent had before…it was completely healed, which all leads me to believe that the carboplagtin isnt working. Altho Onc regisrar said he wasnt particularly concerned he did mention bringign forward the scan he had arranged for July. I dont know what i’ll do if this one isnt working.
Marierose…so pleased about your appointment. I will be thinking of you tomorrow…please let us know how you get on. I cant really remember asking many questions beore the treatment but i do know i was in great pain afterwards and needed morphine…should have had oramorph after but they just gave ne codeine…not enough!! Also be prepared for very messy wounds, long healing time and lots of dressing changes. I’m not trying to scare you or anything but just trying to prepare you as i wasn’t. remember my mets are very extensive and i had lots of ECT…you probably will be fine. Out it this way, if they told me it was helping and i could have some more, i would do it.
DBNO…glad to hear your recent treatment is working. I remember reading about it but have forgotten the details…will have to look back. Is this something you found for yourself or were you told my medical professionals about it? What status are you…i’m triple neg so dont know if its worth pursuing. You also mention Taxol, which i ahve had to no effect. any info would be great> YOu can PM me if you would prefer.
Well, off to do a bit more research and digging.
Love to you all.xx
Hi Skinny friends
Had a really nice reception at Hull hosp we arrived 30mins early but didn’t have to wait long before he called me in. He was a very nice Italian and made me feel quite comfortable he said I was the only one today who had come so far to see him. He took all the details medication history of both cancers and then looked at my skin mets took 4 or 5 photos and then explained what would be happening and I would hear from them in two weeks time regarding the tests before hand.
He said it would not stop me getting more skin mets but it would hold it back. Where my tumour and old ulcer scar were I would get very sore and become ulcerated again and there will be lots of dressings and it may take time to heal.
Does this sound familiar Stresshead? Sorry you are back in a state of blank thoughts you are bound to wonder what your onc is thinking and worry about the chemo not working I would be. Don’t like the sound of your sores bleeding again will you be able to get it checked by the nurse. Maybe it may not be a bad idea to get your scan earlier at least you will get to know sooner. My skin mets have continued to spread they now cover my other breast now. I would like a scan but don’t know when I will get one now.
Thanks to all of you for your concerns and Mo my hubby is ok thanks he needs to drink more water to keep his pipes from shrinking sounds lovely doesn’t it.
Well love and ((((hugs)))) to you all xxx
Hi Skinny friends
I had a phone call yesterday pre op next Monday 13th and surgery following Monday 20th how quick is that. My hospital visit was today to see onc she wasn’t there so I saw Rachel onc’s registra. I didn’t mind because I have seen her often and can chat with her. She was excited when I told her how soon it was all going to be and she asked if she could see the skin mets and said it was the first time she had heard about electrochemotherapy and she was quite interested in it. I did not mind I am all for helping her becoming a doctor. Pity I did not see the onc Lucy I wonder if i am a first for her but at least she came good getting me an appointment for the ECT. The BN came in wanting to chat about the treatment she asked me about it and we had a good chat. It seems I am a first at our hospital oh and she said he was going to try and find my lost photo’s that I had taken first when the mets first appeared and then again when they increased.
Stresshead mine have increased to both breasts abdomen and my left side. So they will have plenty to blast I do hope I will get some decent after care it will be left to my local authority and I dont rate them very highly.But we will see I managed my ulcers mainly on my own with a little help from Tissue Viability nurse.
Thankyou Mo hubby makes too many cups of tea now I cannot cope with the amount he drinks makes me wonder just what he did at work.
Well love and (((((((hugs)))))) to you all xxx
MArirose … I’m so pleased that you have got this new treatment in place and its going ahead. It’s so nice for us ladies reading the board’s to hear that newer stuff is available and being given.
You are obviously feeling a bit nervous but we will support you through it as much as we can with some humour maybe?
Just think you will be able to sunbathe topless in France soon !!
Positive vibes xxxxx
Thankyou Carolyn for your kind words it seems where ever I go no-one has heard of this proceedure I know it is relitively new Stresshead being the one who introduced it to the skin met thread. I was pleased when i knew my onc had been discussing it. I have been to the pre assessment today and the girl doing it hadn’t heard of it either so it would seem it is new at this hospital (hope they know what they are doing don’t feel like being a guinea pig pin cushion lol ) xxx
Well my big day on Monday I have been trying to get jobs done knowing I will not feel like doing much when i get home. I have to be there for 7.00am so we have decided to stay overnight at a hotel near by. I spent ages looking for pj’s that open with buttons found some at TKMax lovely cotton ones with crop type pants. Thank goodness we have been spared the rain today I have not been able to get the washing out this week yesterday was ok but very cloudy and I dare not trust the weather as I was out for most of the day.
Love and (((hugs))) to all xxx
MArirose
Wishing you all the best for Monday and hope that all goes to plan.
Obviously you will not feel like posting here for a while but we will all be thinking of you and maybe post a few jolly things !!
??
Hello fellow skinnies
Janice - it’s nice to hear that the break from chemo has enabled you to enjoy a holiday. I’m on my 5th chemo in 5 years too but I’ve had some nice gaps along the way and Eribulin was so easy for me. I’m finding the Paclitaxel rather taxing though. I can understand how fed up you feel at the prospect of another.
Marirose - best of luck for tomorrow. You must have a mix of feelings about it but hang in there while it takes time to work. As Carolyn says, we’ll all be thinking of you.
Love and hugs to all.
xxxxx(((())))xxxxx