Hello to my lovely skinny friends
Thankyou for your posts you always give me more strength
Daisy your input is just as valued as you have seen we all help one another. I do hope your Mother is feeling well and it is good she has a daugher like you by her
I go to a cancer support group and the Lady who started it is a retired nurse who has done research concerning cancer mainly mx's she had cancer in 1994 she is really helpful and although I am the only secondary she does know quite alot. She also has other issues with her breast. We had a chat about my situation her feelings were have the surgery if it gets rid of the mets and she showed me a skin graft that she had on her breast.
I still want to keep my options open until I get the results and find out who will be my temporary onc. What annoys me is the fact that all this could have been under discussion when I first got my skin mets 2 years ago but I will not be swept under the carpet again. My biggest concern is the cancer on my ribs this will now effect things if it is any worse.
While I still need to search for more information and chat with knowledgeable people I am determined to not let them fob me off. I am finding my inner strength.
Again thankyou for being here for me I love you all
Cant really remember what happened with my mets throughout all the different chemo's i've had except that they got worse!! i have had things ranging from spots to lumps to red rash which basically kept spreading, hence moving from chemo to chemo. I think the ect probably got them under some sort of control apart from my cancer site (right breast) helped b ymy last chemo (carboplatin). my onc has stopped my chemo now so we will see what happens...i'm very scared.
Marierose, think i misunderstood your dilemma on the pm site....i didnt realise you had the option of surgery/skin grafts.....i didnt know that was an option. I know when my first lump turned into a rash i was told removal by srgwry wasnt an option so now i am covered with them it is definitely ot of the question. i would be interested to learn more though. As the others have said, you are the one who helps and supports everyone else but you should always remember that you are entitled to be 'down' and in need of support and we all want to help if we can.
Sending you all masses of hugs.xx
Marirose, to follow up DBNO and then my reply I have found a posting by Dawn on this page with a bit of browsing: https://forum.breastcancercare.org.uk/t5/Treatments-and-medical-issues/metastatic-breast-cancer-with.... If you go to her details you could.........if you like........see her other postings, and even maybe private message her. I think it is ok to give this link as it is a link to another public page, from a public page. And Dawn may know others who had surgery........hers was done quite a long time ago. I'm sure her experience will be different to you in many ways, but in the end I have found we are each quite unique with our situations. But I try to pick up things here and there to help build up a wider picture.
Nice day, not too hot. I'm thinking of you, Marirose, re scan. Fingers crossed it will be fine. Stable Mabel! We'll see. Take care DBNO, and stresshead........hope things settling down. If Daisy is reading I hope your mum is coping on her treatment.
Good morning, DBNO,
You are so right to tell Marirose that she is so good at supporting everyone else........a quick responder!...........so she can get down herself whenever she likes, and share it here. We all need support and sharing is what it's about. We can freely think aloud here which is part of why it is so important.
You said in your post that you were trying to remember who had had skin mets surgically removed years ago..........was it Dawn I wonder? She is another wonderful member of these forums, with good advice, sharing. She hasn't posted for a bit, but suddenly pops up! I certainly remember her saying she had surgical removal because I noted that as a possibility for me perhaps, although the surgeon at my hospital said he couldn't remove my tiny patch for some reason. I didn't ask why. Stupid me. Taken by surprise again. I wasn't expecting a consultant to do a teeny biopsy that morning so was wrong footed. Had radio instead via onc. Dawn did have surgical removal and has referred to it other times on here, so it may be her you are thinking of. Could be others too of course! I do remember her here not long ago saying she doesn't visit the skin thread much any more because her skin problems didn't recur, so she may be posting elsewhere on here.
i am hoping it will be a bit cooler today. hate the heat. Take care everyone here, especially Marirose! Your scans could well be boring old stable! The surgeon you saw has to be cautious though, just in case. Let it all sink in for now. There are options.
Hello skinny friends
Sorry I've not been posting for a while. I've only trawled through a few posts so I'm not entirely up to date with everything.
Marirose - I'm so sorry that you have such a hard decision to make and that it's getting you down. You really shouldn't feel that you're in any way letting the side down. You're so supportive of everyone else; you should share your feelings and let others support you. I shall be keeping my fingers crossed that your CT scan results are good. I agree that it's too big a decision to rush and you need time to consider all the pros and cons. I'm desperatey racking my chemo brain to try to remember who it was who had skin mets surgically removed years ago and they never came back........I'll work on remembering that.
I shall try to spend a bit of time catching up with how everyone else is doing on our thread and will then post again but I must get to sleep now.
Sleep well other skinnies and lots of belated hugs from me ((((((((()))))))))
Hi Marirose, you, also give very valuable advice and I enjoy reading your posts.p
Its easier sometimes to see from a distance for other people than for ourselves, isnt it?
My own fears are currently around having to have a port o cath put in! I wont specify what they are, as I dont want to frighten other people...I have been considering it for a while now( know I wouldnt want a picc or hickman etc) and so every i/v is another experience.
Today it took 6 goes, sometimes only one, but im now booked to speak to the n spec about suitability. I hate being invaded!
Re ensuring we have time to think..I find it takes me a while...Im not happy to make on the spot decisions. So I totally understand your dillemna. And lets face it, once we make our decision thats that, so its good to take a bit of breathing space( I find) best wishes for the scan....thinking of you
Dear Mo and Moijan
Thankyou for your replies Moijan you are right Mo gives such caring advice as so do you. I am doing alot of thinking but I will not let it rule me. If I get the chance to ring the BN I will do as she was interested in my ECT and skin mets. She wanted me to give her some feed back on BCC's resource pack as she is wanting to become a SCBN so I can discuss that and my present situation.
The CT scan is tonight and my husband said it is stressful wondering what it will show so he feels it too. But at least I don't have to wait long for the results so thats a plus Wednesday is not far away.
Take care all skinny friends Love and ((((hugs)))) xxx
I think Mo is absolutely right and she set it out so nicely. The only thing I might add, is that often during this cancer journey, we are put in a position where we feel pressured to make a quick decision! From your discussion it seems that you could quite legitimatly ask for time to make up your mind., why not take a bit longer to think things over. God bless
Marirose, First of all you aren't letting the side down! You are allowed to feel low at times like this. It is inevitable really. You always try so hard to be on top and it is horrible to have new things thrown at you. We really need to have proper seminars about our dx and as it develops. But we have these rather quick and infrequent appointments with so much squeezed in. You are right to try to talk it through with your BN, just as you have explained it all here so clearly. And maybe try the BCC helpline too. I find them very knowledgeable and patient. You have been surprised about the surgical route, using grafts. But it sounds very possible.
I think I understand it like this............your new mets have responded well to ect, with the lower dose he used. The older mets would ulcerate with the required higher ect dose, so he avoided that. But he suggests perhaps a surgical option for those, removing them physically and using grafts. That avoids ulceration with the higher ect dose. It sounds drastic perhaps, in comparison to the ect, but as you said you would be having it done at a top plastic surgery hospital. I don't think my hospital is top in anything!
You don't know who you will be seeing.....next Wed is it, post scan? But you will see someone, and like when you started with the ect route I think you will need to know as much as poss when you go in, and have a good idea of the way you think you'll go. See what they say after listening to you. Mr Mattuecci said he would be writing to them to explain. You may be surprised. Whoever it is may be excellent. But if you are interested in the surgical route for the old mets, avoiding the higher dose ect, whoever you see will refer you to Sheffield, and you will see someone experienced in grafting there.
So you are still on a journey, turning new corners all the time! It is exhausting I know, but you will regroup. Do talk to your BN and the BCC nurses. I think talking helps one to think better. You have thinking time before seeing your onc. You can choose to be referred to the Sheffield surgical team and see what they say. They can describe what the proceedure would involve, after looking at your particular skin situation.
I'm just sort of thinking aloud here!!
so Marirose, I hope you are feeling a bit better, even tonight. Give yourself time to adjust, and you will float up again! Don't expect too much of yourself. Be kind to yourself, and remember you are on a journey. Take care for now, and sleep well if you can tonight. It is too hot for me. I toss and turn in this heat. Upstairs my bedroom is like an oven! Ho hum.
Hi everyone this is going to be a long one.
I went to Hull to see Mr Mattuecci but after waiting 3/4 hour saw his registra. I told her that I was unsure it had worked because I still had the spots. She quickly wanted to fetch the surgeon who came straight away. He looked at the mets and said He hadn't given me the stronger probe as he did not want to cause ulcerations on the old mets he felt that the new ones would go. He said as he explained there was another way to remove the mets with slicing the areas and using skin on the back to skin graft. I told him he had not told me that when I first met him.
He wants me to see my onc when I have had my CT scan tomorrow and get the results next Wednesday. He is concerned about all the bone mets I have if I should have a progression. But he would put me on a urgent waiting list for more ECT if that is what I want bearing in mind I would get ulcerations. He said he would send my onc an e-mail to explain it all.
I told him that I was unsure who I will be seeing as my onc was leaving to have a baby. The only other good onc has retired last week so that leaves me in a sitution of not knowing who I am seeing. Also if I was to use the surgery to have them removed it would be at our main hospital which is a top plastic surgery hospital at Sheffield.
I really feel at a loss to it all and feel quite down. I was told by the registra I would have to ring appointments to explain it would be ok if I choose the ECT and she gave me a number that I should ring. She said she had done her training at Sheffield and it was the best place to have the skin grafting route. So what do I do. I am now dreading the scan dreading the onc that I will see or will it be a registra. I always pride myself with positivity but at the moment I don't feel I am positive. Sorry if i am letting the side down. I will get some answers from somewhere I may phone Jenny the BN
Love and ((((hugs)))) to all my skinny friends xxx
Daisy, So glad your mum is at last started on her treatment. Time will tell, but hopefully good will come of it. The response of skin is, as Marirose has described, unpredictable, even thought it should be the same as elsewhere. In my case, despite having had 2 small mets biopsied from under the chest skin which didn't return, I had this one small patch that actually appeared and developed during the same time. Onc has said the biopsied ones must have responded to the letrozole, but has nothing to say about the one that appeared and grew at the same time. Cancer is strange. I haven't had chemo of course. Yet. But I was given radio locally to the new skin patch and it has responded to that. Meanwhile everything else stable, lungs disappeared.
You are right that there could be 'withdrawal' effects among the side effects, coming off tamoxifen. The body needs time to adjust to all these invasions!
Take care, Daisy. Little Anna is coming this weekend. I have found a recipe for giant bubbles online. It works! so I am hoping for good weather to have a go in the garden. i have crocheted 'food' for the cafe. I have found a few dvds in the charity shop. she is full of energy! You must understand that with your little boy!
Love to all skinnies!!! I'm off to bed!
My skin mets increased while still on chemo the last increase was afew months ago I saw a different onc to my normal one and she put me forward for a MRI and CT scan which showed a significant reduction in my chestwall tumour and everything else was stable. So to your answer question skin mets can reduce with some chemo's but mine haven't. Skin mets do not always show on scans.
Hello to all my other skinny friends hope you are all doing ok. I see the lovely Mr Matteucci (surgeon who did the ECT) I shall have to be up bright and early to get there for 9.30 am. I have like stresshead said hers were like henna marks so too are mine but they seem to be fading a little and I have red areas which looks like new skin but i can still feel spots. We will see what he says tomorrow.
Well love and ((((hugs)))) to you all xxx
Just to say, that my onc mentioned that there is soon to be a study of looking at the blood, cancer dna of the circulating rogue cancer cells in the blood. This study would detect changes in dna early and target these. I think it will be run by the institute of cancer research NOT im glad to say a drug company! I will post any mre news I get asap as I think it eill benefit us all and lkely be a national study. Apparently thry are waiting for money....which
is a bit like waiting for a miracle..but hey ho. Lets keep fingers crossed. I belive this work on ca cells in the blodd is similar to ehat the usa drs call a 'liquid biopsy' and on the inspre web site they chat about this too.
apols if you all already knew sbout this,
love and hugsxxx
Thank you ladies, I am seeing my onc every three weeks currently. And do show him everything i worry about.
i was really curious and your explanations have helped me understand.
i dont think I have skn mets..thank God! But now feel that I might recognise them.
i am sorry you have these problems, having mets of other kinds is already too much!
lots of love and thank you for sharingxxxMoijan
My skin mets appeared over night while on holiday 11 just like heat lumps chicken pox but all around the chest wall tumour. the onc did not seem too concerned although he was a locum and soon to finish. My gp asked if they had done a biopsy on them I said no. Looking back i should have questioned it more but I didn't and no-one seemed concerned. So i read up on it all googled it and found a good web site in America but have been unable to find it since. This thread was my salvation and stresshead and Bumpkin and DBNO were there for me who helped me accept what I had got. Sadly Bumpkin is no longer with us and i miss her so much she helped so much when my mets became ulcerated. Since then the mets have increased and at least my onc has made the good decission for ECT which as you know I am currently going through and stresshead was the one who introduced me to it.
If you feel you may have these invaders get them checked out and insist on them being examined properly. Quote my case if necessary. My second lot were small little spots but lots of them then others continued to appear.
Thankyou so much mo and stresshead you have been brilliant with your help with our newbies.
Daisy my heart goes out to you and your Mother I am following your progress and wish you both well.
Moijan I hope my explanation of my skin mets has helped they seem to come in all different shape an sizes but what ever they look like insist on getting them to check them out. Dawn another lady who sounds as though she had skin mets years ago had different treatment.
Love to all my Skinny Friends ((((hugs)))) xxx
Moijan, Stresshead and Daisy have both given very good explanations of skin mets. Basically they don't look like anything in particular. The appearance is very variable, and the main way of knowing is to notice when they appeared as well as where. i think it is very common for skin mets to be dismissed as sebaceous cysts. Mine was. But the crucial thing was that it was right beside my mx scar and that should have prompted the GP to go for a safe side biopsy. I lost time there. But iin my case it was that teeny spot that dropped me on the conveyor belt for secondary dx.
So the main thing is, have you mentioned your concerns, if they are concerns, to anyone? You should, even though they may well be just ordinary skin stuff. Do you have a breast nurse? Do you have an onc appt coming up? Ring your bcn and tell her. Have you had these lumps and bumps a long time? Or are they recent? My original was like a little pimple, but was right beside my scar. My next one that emerged a bit lower down, after starting on letrozole, was a small, puffy patch, starting from a tiny crease. it was dismissed, but again eventually a biopsy showed it up. I had local radiotherapy and it has shrunk away....for now at least.
We have to learn to speak up a bit for ourselves with our dx. So don't be shy! But it may be nothing too. Let 'them' decide. Today is wet and windy here, but the ground needs a bit of water. Take care everyone!
hi Mojan, my skin mets startedbetween my reconstructions as a small lump which was mistaken for 5 months for a sebaceous cyst. By then i had aslo developed what they called 'plaques' which i think arte patches of raised red marks. After my first treatment i was told i was in remission as my scan was clear but within a few weeks i developed a red rash over my right 'breast'.....skin mets are not picked p on scans so theyare very difficult to monitor but i would say if anyone notices any cahnge in their skin eg, redness, lumpy, uneven etc then please, please insist on biopsies. If only i had done that and hadnt had treatment delayed i may not be as bad as i am now.
Daisy, i had weekly taxol as my 3rd line chemoandit was a bit tough but not as bad as some. I have found carboplatin ok even though my onc says its very toxic and therefore didnt combine it with anything else: i believe the usual combination is gemcitibine & carboplatin but maybe yor mums combo hads been found to be better. I'm sure she will be fine. As for having a line pt in it was the best thing i did. I used to dread the blood tests and cannulas but now itsno worry at all. I do seem to be having a little troouble with mine at the moment ..seems to be a bit 'weepy' but i'm hoping i can sort it with some antiseptic...would hate to think i will have to have it removed.
Good luck to yor mum...keep us informed of her progress. xx
Daisy, You must be right about cancer subtype & protein expression etc. There must be something going on to differentiate your mum's breast cancer......in unlikely kidneys and more widespread in her skin........from something like mine, with much more common bone spread, and only a few skin spots near the original primary. i hope somebody somewhere is into research on this! Anything we learn has to be useful. Breast cancer may always appear as a primary in the breast, but there are so many types and expressions of it.
Having a line might be a good idea for your mum. I have read others saying that in the end it is simpler and easier than using veins. If her veins are already not too good, then why wait? Her chemo visits will be much nicer for her. I hope it goes well se wise. Someone may post here who knows about this combination, but as usual everyone is different. We are all keeping fingers crossed for her and hoping it all goes well. She is having treatment at last!
Anna's mummy is my daughter-in-law, and we get on very well. Mummy is Czech, from Prague, so she takes little Anna there for visits, although not often. Twice a year. It's quite expensive. They have just returned, and won't visit again for a while as anna is starting school in Sept. Goodness. School? She is still a baby!
Best wishes to your mum, and hugs to your little boy,
Hi Ladies, yes I agree with all thats been said. Wanted to ask. Tho, how would one recognise a skin met please? I seem to have little lumps and tags and warty stuff displayed around my body...so how would one know
Daisy, I have been thinking about your mum's situation and looking for specific info and for what it's worth I wonder if having mets in her kidneys is particularly significant in itself. Rare obviously, but probably not significant or different to the mets in her lungs. Her onc commented on the rarity, but nothing else. She is also unusual in having no bone mets! That is the most common place for spread. But from reading the threads here there are quite a lot with just lung mets, or lung and liver, but no bones. From the reading I have done since my sec dx I don't think there is any real understanding about why some cells set up shop in one place rather than another.
I think the main thing for your mum is that it is all breast cancer cells, and in theory her treatment should have an effect wherever the mets are. I am learning that adding carboplatin to the taxol is a successful development for TNBC so just wait and see.
I have an old friend whose husband has just been dx with prostate cancer..........spread for that is usually bones and lymph nodes, but he has spots on his kidneys like your mum. All so unpredictable. He can't have usual hormone treatments because of recent coronary surgery so he is going onto radiotherapy. Your mum's treatments may change and develop.
Sorry to ramble on. I end up thinking through this keyboard! But I have been thinking about you and your dear mum quite a lot, trying to understand like you. But I hope she is happy to be on a pathway now, and I hope it is what they call 'doable' on these threads! There is probably a thread for that chemo somewhere here. There will be an August thread for people starting their chemo this month. Do take care. My little Anna is coming this weekend with mummy.........a little whirlwind! I have been making food for her little cafe.......crochet.......little doughnuts, cakes, slices of bread, tomato slices, eggs, biscuits. She can make us sandwiches!
Stresshead, you are right about skin mets. We are in a small group. And I agree that I don't know where I would be without this skin thread. I have found so much info, and so much support. I read everything! So thank you, and everyone else, including Marirose of course! for sharing and posting.
Goodnight, and sleep tight. Rain tomorrow!!
Hi ladies, thank yo all for your good wishes. I am now up and running again...still dont know whether it was chemo or a bug.
Daisy, so sorry to hear your news bt at least your mm is getting treatement. I had taxol, which unfortunately didnt work and have just finishes carbo which seemed to have help.......just wish i could stay on it but my onc is insistiong i have treatment break. I cant help with your concerns abot kidneys but keep searching.....there must be something somewhere. I know skin mets is uncommon in itself and if it hadnt been for this forum i dont know what i would have done. We are all here for you both.xx
So sorry to hear your latest news Mo has given you some good advice and some useful information. She really is such a lovely concerned lady. She mentioned BCC I think this would be a good move they really help to give you an understanding of treatments. Please don't give up hope prognosis's can be wrong and ladies have lived longer than what they have been told. Keep us informed how you both get on.
Wishing you both lots of love and ((((((((((((((hugs))))))))))))))))))) xxx
Very sorry to hear your news, Daisy, but your mum now has a treatment, so let's see how that goes. I think others on here will caution you about being given a timeline/prognosis. It all depends on how she responds to the carboplatin + taxol. Everybody is different. As usual in this world it is one day at a time. I haven't been able to find out much about kidney mets either, although haven't done too much searching. There is an old thread here.........https://forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/kidney-mets/td-p/502405. There is a little discussion but something current would be much better. Do you ever ring the BCC helpline? They are very informed and very helpful. See what they say.
But, at least your mum is now on a treatment which may control things or better. I assume she will have another scan after a period on the chemo they have chosen. And it will be booked well ahead this time!
I have had a look for the combo prescribed for your mum and found this on the Triple Negative website: http://forum.tnbcfoundation.org/adding-carboplatin-increases-pcr_topic11688.html ..........although I know the trial sample were primary, not metastatic. But interesting about the added carboplatin. And remember that the onc did say her TNBC is less aggressive because she was not triple negative from the start.
Take care, Daisy. You and your dear mum have stepped out together onto the pathway now, so we'll see how it goes. No looking too far ahead.
Love to others here this evening,
All the best tomorrow, Daisy. As Marirose says, have plenty of questions, although I know myself that you can easily be wrong footed in the heat of the appointment! So have your piece of paper ready. There is no hurry. You & your mum have been waiting a long time for this. I am hoping there will be a clear way forward now. Try and remember the support you have from this thread. Good luck! Hugs to your little one,
I do hope you and your Mother get some answers tomorrow write down all questions you feel you need answers for. I always try to do this and I think the onc respects me for it.
The ECT I have to wait to see what benefit it has had. I started with 11 spots which stayed stable for about a year but then they started to increase and I cannot count the amount any more. I am still waiting to see the surgeon to see what he has to say. I can still feel spots whether they will dissappear I am not sure.
Some ladies have been fortunate to lose them when they have gone onto different treatment even the one that I am on Capecitabine but it did not happen for me mine increased.
thankyou for the accolade but if it hadn't been for stresshead I would not have known about it Although the onc had been making enquiries about it and I let them know I knew about the treatment so it all worked out ok.
Love to all my skinny friends ((((hugs)))) xxx
Good news, Daisy, that the onc appt is now nearly here! At last. A nervy time, on Tuesday, but a treatment plan to move forward with. Hopefully whatever it is it will bring your mum's skin bumps under control, and any other mets the scan might show. But if she is going to the Ritz with you and your hub this means she is otherwise quite well! No other obvious symptoms, which makes me optimistic. We'll see. You have both been so patient and deserve some good news now. Enjoy the Ritz! A wonderful treat and fun to look back on with smiles. Try to take some photos or nobody will believe you!
I'm exhausted watching Olympic exertion on tv. GB doing so well, but this GB is pooped and off to bed. Goodnight and love to all.........glad you are safely home, Marirose and your skin responding so well. You are a poster girl for ECT!
Dear Mo and all skinny friends
My holiday was very enjoyable with my little French family but it is always nice to be back home. I did have a bad pain in my back and constipation (see capecitabine thread)
The skin mets are doing fine healing with no soreness as the surgeon predicted I would have. The area has gone very hard and I still feel spots but my onc thinks I am healing very well. I do put cream on the Balneum that my TV nurse prescribed when I had the bad ulcers.
Apparently this proceedure has been around since 1991 when it was first performed at a top clinic in France and is performed all over europe. So why is so little known about it here in the UK Nice have agreed it and it is cost effective strange.
Stresshead I have sent you a pm I do hope you are feeling better and you are now out of bed.
I have heard from DBNO she is doing very well at the Hallwang Clinic in Germany again it is a pity she could not get the right treatment from the Doctors here and it has cost quite alot of money.
Love and (((((hugs))))) to you all xxx
Daisy, Just thinking this morning that your mum's scan must be coming up.......this week? Best of luck and hoping it's the start of her treatment plan.
Stresshead, hope the tummy is settling. Certainly chemos must upset the internal balance, and that can vary........depending on how you are at any given time. The digestion is very sensitive anyway. So i am hoping things have settled on that score. Good to hear your skin is feeling more comfortable. I don't think oncs appreciate the skin situation. My experience is that nobody really worries about skin progression, but as you have said skin mets can be a misery. So more comfortable is good.
Marirose, I think you might be home again now, refreshed! Nothing like a change of scene. But it's also nice to be 'home and dry' too. Hope your skin is still responding well. Ect was a good move for you. Fongers crossed it will become much more available for everyone. Greta.......Norwegian.......on the BCC helpline told me it is standard in Europe. Come on, NHS!
Sun is out here. What happened to the 'plume' we were told about, hot weather coming up from Spain?? Oh well. A drab morning, but sun coming out now. It gives me a boost so see sunshine. Love to all,
Hello to all my skinny friends. Just a quick catch p with everyone:
Marierose...hope the holiday is going/has gone well and that your skin is behaving. I still have some sore patches etc but the nurses all seem to think it is getting better. Although it is rock hard it does feel a little more comfortable. I am just really scared to have finished my chemo.
I have been in bed with horrendous sickness all this week but not sure if its chemo-related or a bug. To be honest i have been worse after the last 2 chemo's so maybe my body is telling me something???
Daisy, how are things with your mum? i do hope you have managed to get somewhere. As RRH said, oncs dont view skin as so serious but the effect on the sufferer is horrendous and often painful.
Carolyn, if you have any news on DBNO please let us know. I havent done anything about the clinic yet, although i told her i would, because i just dont see how to raise the money....isnt it awful when money can mean the difference between life and death!!
The thread seems to have gone a little quiet...may be due to holidays but please post and let us all know evertyone is ok. Love to all.xx
I think I've got it Daisy. But the situation they have put her in makes it all quite complicated. Unnecessarily so in my opinion. Why such a holdup for scans? My hospital is not a main one.........High wycombe General........but scans can be arranged faster than this. But scanners can break down or need servicing and this can spoil things. My (well, 'my') scanner broke down once the day before my scan, which was cancelled, but I had another appt about one week later. Still, every hospital is different, with different pressures. Once it is all together they can pounce with the correct treatment. I suppose you are wondering what 'option' to take, but as you said that was the nurse who was explaining things. Best go to the horse's mouth. An MDT meeting would be usual, but the onc may be happy to go once he has the results. He's in charge. This is all very hard on you two, but you are following what is happening, understanding it all, which for me is very important. With the right drugs your mum's bumps could just subside.
Not sure about what you said about using her options if she goes for IV early. If you do talk to the onc just ask about that. She may be left with the cape option for the future instead, with the downside being going on full chemo when not needed yet. And there must be other chemo options for later. It can't be the only one. The best would be to have the scan tomorrow, and choose what is right for her right now. Isn't life strange? You have been handed the hard journey all along. But I am still hopeful and optimistic. Skin is not taken as seriously as internal spread because people don't die from it, although it can become uncomfortable. So in a way if her skin bumps aren't ulcerous she can afford to wait, remembering she has no symptoms of internal spread. So even if she has internal mets they can't be too bad yet. She is not coughing and has no pain. No liver-y digestion problems. Maybe no spread at all.
I shouldn't be interfering here. I am really just thinking aloud. i know how hard it can be without someone to discuss things with. I made so many decisions about my little parents on my own, and just had to live with it. You always try to do the best. Whatever you decide it will be wanting the best, which is what matters. So........still thinking of you and hoping for perhaps a cancellation! Your mum could just jump into a taxi!
By the way, how is your father-in-law? I know he was having tests to see how his treatment had gone. I hope he had positive results.
Take care for now. In a few months time you will be looking back on all this and hopefully smiling and heaving a sigh.
Oh Daisy, they really are putting your mum (and you) through it arent they. Keeping my fingers crossed that they sort it soon....keep pushing,its the only way.x
Yes, Daisy, I agree with your wishes that stresshead gets on the trial. Bst of luck with it stresshead. My fingers are crossed......toes too! I struggled around like that for a few days for Marirose and her ect and it worked!
Daisy, I am getting rather angry at your 'team' who don't seem to be able to get things sorted. Your mum's urgent scan is URGENT. Results can take a while too, although in fact the onc should be able to access them within a few days on his mobile phone when you are with him. I know that from experience. So the post-scan appt need not be long after the scan. So.........I am cross! What about the onc's secretary? Sometimes they are good at putting pressure, so perhaps give her a ring? But you may have done that. The whole dx is bad enough, but one wants to get going with an appropriate treatment. I was hoping you would be coming on here telling us of the date. Try the sec, even if it is the umpteenth time! I managed to dig up the scan bookings number........again ask the sec, to 'save her time'........and a direct call may trigger something. There may be a sympathetic bookings person on the other end. But again you may have done that. Er-r-r-r-r-.
Anyway, hang on in there. We are thinking of you and willing things to move on. Sorry about the moaning above, but just wanted to vent my anger! Take care, and love to your mum,
Hi daisy, just replied to you on another post without realising it was you....so sorry.
So frustrating about your mums scan. There is nothing worse than waiting especially for results.
I too was a little confused about the tamoxifen...i thought that was for pre menopause and that rimidex, aromasin and letrozole were for post menopause?? still, like me, if her stats has changed non of them will work so dont worry about whether it is the right on e or not ntil her 'status' is confirmed. I was even more interested to read what the onc had said about it not being true TNeg and therefore not as aggressive...gives me a bit of hope too...thank you.
I dont know much about node biopsies bt when i was first diagnosed my onc said i shold have axillary clearance....just before my mx, my surgeon asked me if i wanted sentinel node biopsy but i stuck with what my onc said and had the hole caboodle. Nodes from both sides all came back clear bt i still got secondary so i dont think anyone has a definitive answer....i assume mine has spread through my blood and i cant have a 'clearance' of that.
I hope things get sorted quickly and that you get started on a treatment plan.Keep posting on your mums progress and remember we are always here.
Just a quick update......saw the Dr in london i have been trying to see for 8 months and he basicaly said that he would be doing what my onc is doing. He crossed more things off my list than he left on whn iasked about immunology, targeted therapies, new drugs etc so not very helpful there.
He recommended that i have a break after crboplatin and then if necesary he would recommend epiribcin...my onc had already mentioned ryting fec again so at least they are singing off the same hymn sheet. When i asked about new drugs, treatments etc he told me to be careful what i read which worried me a bit as it sounds as though there is not as much stuff in the pipeline as i imagined. He did say there is a trial coming up in the next fewmonths which i may be eligible for so...watch this space!!
Hope everyone is feeling and coping well. XX
Thanks so much for your interesting reply, Daisy. I have always said since my sec dx that it would all be very interesting if I wasn't standing waist deep in it! I won't say too much as my internet connection is up and down. (Need a new filter I think.) But I don't like the sound of the 'arrogant' locum. Arrogance is too common among docs. I had better not start. Anyway, I am just sorry about your mum's winding route through this. But you are on the path now. And interesting what the onc said about triple neg........your mum not being truly TN because of her history of being er+ve even if that has changed. As she said, true TN can be much more aggressive, so that is good news. I agree that the breathing problems could be this hot weather if she has copd. Very humid too. Can you go on a scan cancellation list? Just a thought.
Don't apologise for the long story. I am clearer now and am very impressed at how you have absorbed it all and how your mum has coped.....punctured artery, diverticulitis, and fistula! For heaven's sake. It has been quite a journey, and the medics haven't helped. I think they pursue the sentinel node method for various reasons.......like statistically limiting lymphodoema........but it doesn't always work. I had no chemo or radio because no spread to sentinel nodes. But of course cells had in fact escaped and chemo might have zapped them. Ho hum.
Enjoy your day tomorrow with little boy and gramma!