Hello Daisy
Welcome to our thread you will get lots of good advice on here from all our skinny friends. Mo speaks alot of wise advice as do others. Your mother will feel alot better when she gets her treatment plan. Some treatments can help the skin mets dissappear so lets hope this will work for your mother. Just keep showing her how much you care she is lucky to have you.I hope it all goes well for her next Wednesday. Do let us know how she gets on.
Hi to all my skinny friends skin mets still doing well. Although when I go off to France I will take dressings just incase I don’t want to tempt fate at least I managed to heal my ulcers last time.
Love and ((((hugs)))) xxx
Thanks Mo and Marirose. They confirmed it is the cancer today but said it has changed its receptor status. The breast originally had 5/8 oestrogen (pr and her2 neg), then the lymph node that they failed to remove for months that was removed this year was 4/8 oestrogen and now there are no oestrogen receptors. Still haven’t got final report yet though he said so there will be more info. Oncology appt Monday and urgent ct scan ordered. Said it is aggressive as the lumps have come up fast, although she had no new ones for a week.
So I have a mind that works overtime. Concerned about the receptor change. I know it can happen but now wondering if it is definately the same cancer or even if it could be lung cancer. I assume they look for other characteristics that inform them it’s from the breast (other than those three receptors above?). I’ll ask on Monday as found some info on line about other stains etc but hard to figure out how it’s done when its metastisised cells and not directly taken from breast.
I think he said no receptors now - not just er loss. I’m guessing it’s now become triple negative and therefore chemo is only option. Xx
Hi mo
I know they’ll be able to tell what time of cancer it is - but wondered if they’d got to that conclusion and although he said there were cancer cells, he said thought it must be from the original tumour but that they didn’t have complete picture yet.
It was the breast surgeon we saw so no idea which chemo yet, that’ll obviously be the decision of the oncologists on Monday. He said that the scan results probably will not be available then as my mum hasn’t had it yet - just an urgent scan had been requested but no date yet.
I live about 15 miles from the hospital but my mum only lives about 3-4 miles from it. She can drive but of course I always want to take her.
I have a full time job to so its back to work today - not looking forward to it. My son has a mixture of pre school, my mum and my in laws looking after him. One of my in laws is terminal too. Hard times for all.
Do you have bone metastisis or are they strengthening injections?
Xx
Up early as I start work at 7.30! Had to wake my son.
My mum has no other symptoms yet. Sore wrists but she puts that down to arthritis.
No word on ct scan - she’s going to call tomorrow. My background is science so I feel I need to know everything - even awkward questions they sometimes cannot answer.
It’s my father in law that finished chemo about two months ago for multiple myeloma. He has a bone marrow biopsy on Monday to see how successful the treatment has been.
You’re very right about uncertainty - none of us know what is awaiting us tomorrow.
I’m having my mum stop here Saturday and Sunday. Taking her for a meal and cocktails on Saturday and to the beach on Sunday .
Thanks for all of your input and help.
Xx
hi Daisy, sorry to hear that your mum has had confirmation of SBC bt at least now you are working towards a plan. I too was er+ bt changed to triple neg, which scared the wits out of me, especially as i lost my mum to the same thing almost a year ago. I wasnt told at first until i asked about all the hormone treatments available to me andwas then told they wouldnt work…so many things i thought i could have which would probably have extended my life to be swiped way just like that.I have gone through many chemo’s (wont bamboozle you with names unless you want me to) you in a short space of time so not many options left but i’m sure your mum will respond well. I just wish there was as much emphasis put on finding treatments for TN as er+ and her2+.Please keep posting and tell us how things go…you never know betwen us we might get to hear of different, new treatments. Good thoughts and best wishes for Monday.
Just a quick update…have just ben for more oxygen tests and even duringn exercise they are normal. Whatever cases my breathlessness its notlack of oxygen. They are taking the oxygen away from home but just to keep my mind at rest are leaving me the portable one.
Cyber hugs to all ((( ))).xx
Hi Stresshead, thanks for sharing your story. I’m guessing my mum will go on cape first? Did you? I too am panicking about the triple neg conversion. We knew the hormone treatment wasn’t working when her lymph node (that they thought they had removed) enlarged. Once they took the node out, they thought they had it all though.
When you say a short space of time, how long have you been on treatment?
Mum was told that the urgent waiting list for ct scan is up to two weeks. She sees the onc on Monday though so not sure if they’d start treatment before the scan? Don’t they need a baseline scan to see if treatment is working?
I hope you’re right - I wonder if they have new drugs ready to trial?
Xx
So sorry to hear about your mum too. It’s all too awful for words really. Xx
Hi Skinny friends
Sorry I cannot keep in touch often but I am in France at the moment with my 3 lovely grandchildren oh and my son and daughter-in-law.
Daisy I am glad your mother is getting sorted and she will soon have a treatment plan. You are in capeable hands with Mo and stresshead who are both wonderful ladies with good knowledge of treatments.
Stresshead I am so pleased your breathing is getting better although when the weather is hot it can make you breathless. You have come a long way these past few months and I am glad you are more like your old self.
Sorry if the post is a bit rushed but I get little chance to come on here at the moment.
Love and (((((hugs))))) to all my friends xxx
Dearest Marierose, please donrt worry about posting…yo just enjoy your well deserved time with your family and let us know when you are back.xx
Daisy, have got everything crossed for today .I’m sure the onc will be able to reassure you but i would imagine you will have to wait for the scan before they can start treatment…maybe they can rush it through…its the waiting that makes things worse.
I have now been on treatment since August 2014. I was given docetaxol and capecitibine (this was a harsh regime but cape on its own not too bad) and when i finished that in Feb i was told i was in remission. Two weeks later i developed a rash on my right reconstructed breast which turned out to be more spread. I was then given eribulin which, although it didnt work for me, has given lots of ladies good results. Then i had weekly taxol, then my onc pt me back on capeitibine as it ‘had worked before’ (i pleaded with him the first time to keep me on it but he said no).this didnt work so am now on carboplatin but only have one cycle left…then i think they want me to have a rest from chemo’s. This is scary because in order to have any more treatment the disease has to progress by which time its too late??
Please let us know how you get on and ask us any questions you want.
xxxx
Hi all
My mums appt with the oncologist didn’t give us much more info - no prognosis due to lack of CT scan. The full histology report not back - although the breast consultant seemed to think it had lost all its er receptors, that hasn’t actually been reported yet the onc said. How we, apparently the node they removed in January was only 3/8 , we were told 4/8 originally and last week - maybe it was different in different areas. Mum still on tamoxifen until final report in as original breast tumour was 5/8 and onc said as they took two different biopsies, we need to confirm both wouldn’t respond. Hasn’t so far though, hence the spread.
Still no CT scan appt - and you were right - no chemo until then. Discussed the two chemo options - iv paclitaxel and cape - onc said if ct scan shows organs involved then iv first for 6 months, scan half way, then cape after that - for as long as it works (if it does). Worried about how my mum is going to be on the paclitaxel. She is only 65, but has copd (mild to moderate). When on fect she developed neutropenic sepsis and chronic constipation - had a bad time with it. I’ve just posted asking how others found paclitaxel in comparison to fect. Any of you had these two to compare?
Marirose it must be wonderful havin some quality family time. Are you on treatment now?
Stresshead - why do they have to allow profession? For a different population of cells to target? It does sound scary but why would it be too late - could it not just be reduced again? The onc said so thin to my mum about maybe need to have a break then going back on.
Xx
Profession should say progression. Sorry .
Thanks for the links Mo. I have read some of them but need more time to trawl through. The tamoxifen - I’ll explain what happened to my mum.(approx dates)
Nov 14 - diagnosed breast lump by biopsy and a positive node by fine needle aspiration.
Jan 2015 - Chemo first (fect) - reduced tumour and lymph node - was big node.
June 2015 Then lump removal and slnb post chemo. Apparently new way to do it - if clear nodes then chemo has worked and no need to full node removal. All 4 nodes taken were negative - they were v convincing and happy.
July 2015 - Radiotherapy. Mum goes to see oncologist to tell him lymph node feels enlarged. Referred back to locum breast surgeon (arrogant) who examined by hand and said its just a reactive node from surgery - ‘I’m not chasing lymph nodes’ he said. No further action.
At some point after surgery mum was put on anastrozole.
October 2015 - lymph node much bigger. Back to breast clinic - new surgeon. Immediately does ultrasound. It’s the cancer and worse still, it’s the original positive node (plus a second one it was matted too). Seems they took the wrong 4 nodes out and claimed the chemo had worked whilst the original cancer node just sat there. They have admitted this.
Jan 2016 - ct scan clear.
Full node clearance arranged.
Full node clearance done - a few days later a punctured artery from the op so back for emergency operation.
During mums chemo she suffered constipation. This let to diverticulitis which led to a fistula between her bowel and bladder. She had this operated on in april 2016. They had wanted to change her med to tamoxifen as clearly the anastrozole hadn’t worked but she had to wait several weeks post op due to higher DVT risk. When she went to get it changed - in June - that was when her skin met was discovered. She was still put on tamoxifen that day. But lumps have still popped up.
Still on it now until full results. The onc (a woman and very nice) has said its not really triple neg even if it’s lost all receptors and true triple negs start off that way. However they still have to be treated as though they are but not usually quite as aggressive.
Sorry for the long story - just thought I’d explain more.
No key worker yet - just someone to call to chase up future scans. No appt yet either - all waiting for ct and then the MDT meeting which I know is Friday at out hospital - so it will be another week.
My mum said her breathing was better today - hoping it’s the copd in this hot weather.
I have the day off work tomorrow so will have time with my mum and my boy again.
Take care all.
Xx
Thanks mo. After my mums experience of the incorrect lymph nodes being taken - it makes me wonder how often it happens. I know the cells can escape by other means but it does make a concern for me. Now sure how I’d feel should this happen to someone else I know or me and they do a SLNB. Not sure I’d be confident now.
It’s hard to not feel angry about the fact they left her node it - has it cost her her life? It’s impossible to know and I know we cannot hang onto that anger as we have to deal with now but life is always full of ‘what ifs’.
The scan should apparently be any time - they checked and it’s in process of being made apparently (the appointment).
Take care
Speak soon
Xx
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
Hope you get on the trial stresshead.
Still waiting for my mums ct scan. They told her urgent referral - 2 weeks max - then she got a fat which was 3.5 weeks away. So annoyed - they are trying to sort it but they seem to be having problems contacting the consultant who is apparently the only one who can extradite it. So worrying as they will not start chemo until they have scan results. She is getting new mets popping up. 4 in the last week. She now has one on the scalp we think. The whole worry of not know where else it is and not being able to begin chemo is awful.
Hope everyone else is doing well.
Xxx
Thanks Mo. The team, including thr oncologist and radiologist have apparently tried everything today to try and bring it forward but it’s so busy that it cannot be moved. They said she can start chemo before scan but it has to be he intravenous one. Only problem with that is that if it was in organs then hats recommended first anyhow, but if not, then cape recommended first. They said once she starts intravenous she has to continue regardless of what scan showed. Concern - from us- is that she may use her intravenous option before she needs to. I think we need to speak to oncologist (this all came from nurse). it depend on whether they have to review her scan/case at MDT before deciding her chemo. The scan is a Friday (12th)but so is MDT so concerned it would delay came two weeks if they had to discuss following week as chemo would be the following week. Or she can start chemo on 11th. Hope that makes sense xx
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
Hi everyone
The holiday is going well the skin mets are doing well no eruptions (thank goodness) I do feel useless though I have been getting pains especially in the back. I am hoping the pressure from being constipated has caused it so now I have got the system running better it might go. Next week I see the onc and I shall be getting a scan soon (fingers crossed)
Daisy you are getting good advice from Mo and Stresshead I trust their judgement. So I will leave you in their capable hands and I do agree your mother should get her treatment plan after the MDT meeting. I hope she is feeling ok.
Stresshead I do hope you hear about the trial you seem to have your Dr’s working for you at last. I have you in my thoughts alot and you seem so much more positive these days.
DBNO I hope you are doing ok I have not heard from you lately
Love and ((((hugs)))) to you all xxx
MArirose
You were asking after downbutnotout in your earlier posting …she’s in hallwang clinic in Germany having alternative therapy as I’m in touch with gerdre from Australia who is also there.
Hope it puts your mind at rest and enjoy France.
Hugs xxx
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