Hiya Diane
Hello …try not to worry too much but mention your fears to your breast care nurse and hopefully push for a mri scan just to put your mind at ease.
Every niggle we get …always puts us into panic mode …sometimes its nothing .
Xxx
Diane, we all understand your anxieties and are here for you. Please let us know how you get on.
Would be lovely to hear from all my TN friends…please let me know how you all are and any news on treatments, etc. Love to all. x
hi , was recently told in May that I was stable after my ct scan . I recently went to GP about increased pain around lung area, had pleurodesis via vats last November, I asked if he had last ct report which he printed out for me. Reading the report I was shocked to see that it said there was an increase in size and number of pleural and lung mets largest being 10mm ( this was 6mm in feb 2016) also state I have a dominant metastasis in the left lung which I had never been told about.
I have contaced my oncologists secretary and asked for copies of previous scans. Also just had a ct scan and get the results on 5th sept.
Is is there a certain growth that is considered stable ? What size of met is considered large?
my GP felt that it was likely I would need chemo again. I finished gem/carbo in feb 2016.
any advice welcome
thanks x
Hi Sarah, sorry cant really help with your query…no one ever mentioned size when they told me i had pleural and bone mets and to be honest, i darent ask.
EJ…i know how you feel. I have been through the same treatments of you except vinorelbine and i have had weekly taxol which i dont think you mentioned, so that may be an option. Like you, i will try anything.
Please let me know how you get on and shout up[ if yo hear of any new treatements. xx
Hi there,
I found out I have TN secondaries at the end of May. There have been lots of complications with starting treatment, but I had my second chemo yesterday.
I had a bit of a rough night last night. My 12 year old daughter asked if I would die of old age or die of cancer. I told her that I would get more poorly with cancer but I would try to stay alive as long as possible,
She said she wants me to stay alive through her teens and got really upset, it was just awful, and all I could think of saying was that we just need to be happy and do lots of great things as a family for as long as we can.
If I go with Onc’s prognosis, it is unlikely I’ll see the end of her teens which is heartbreaking for me too.
He told me there are 3 or 4 treatment options for me, which seems very low. Is that really all there is for TN Mets?
I am having Docetaxel at the mo, 6 rounds. I am guessing if it works I’ll have a break from chemo until the mets start to appear again. Could that be weeks / months / years?
I’m just not dealing with this well today. No child should have to be worrying about these things.
Thanks for listening .
xxx
Spudgirl, EJ, Helen…oh how we suffer. I think our children are our reason for living and thats why its so hard for us to deal with this god awful disease, not for us but because of them. My daughter isnt so young but its no easier. When i was first diagnosed she was 19 and when i told her the first thing she said was ‘are you going to die?’ i replied ‘not if i can help it’. i have never told her a lie and i wasnt about to start. Of course, we are all experts in ‘softening the truth’ !! Four and a half years down the line its talk about weddings and baies and it breaks my heart to know that i’m not likely to be around. i dont know if she truly doesnt get it or she is trying to forget it and ‘gee’ me along…i feel its the latter.
I have also had several chemo’s so EJ if you dont want to list them on here i would love it if you could pm me so we can compare. I was er+ and thoughtni had loads of treatments to go at but i then changed to TN and had them wiped away. I dont know whats worse, being TN from the start so knowing where you stand or changing and having the wrench of lots of treatments being taken from you.
It does seem that there are fewer options for us but srely this should put research into TN treatments to the fore??
Lets just keep hoping that our treatments keep s going til more come along…and we’ll keep trying to help each other get there. xx
Hello ladies, I hope you don’t mind me dipping in on your thread. I have tn secondary in thyroid, lung ,chest,armpits and skin. I have had through two ops everything removed last sept but it came back in scar skin and now secondary. I have tried gem carbo, capecitabone, carboplatin, eribulin …,no joy. Just found out last week eribulin not worked so I have had had since Feb at Royal marsden two lots of gruelling chemo that hadn’t worked. Largest tumour is over 6 cm. Lots visible in skin. I am devastated…nothing is working. They gave offered me now weekly taxol…just not sure I feel strong enough …any experience in the group of it weekly and side effect? I need to go back to work soon and have little kids so I am not saying I don’t want to fight, very down and I am due taxol Friday…dreading it . Any advice/views very very welcome as I do feel after 3 years now that maybe my time is up xxxx
Sarahmummy…please ‘dip’ in anytime, yo are very welcome. You sound like you are in a very similar sitation to me. My SBC came back as skin mets which then spread to the pleura in my lungs and spine and pelvis. On top of this i have had a pulmonary embolism and 2 pleural effusions/pleurodeses. I had docetaxol/capecitibine, eribulin, weekly taxol and carboplatin. My last scan showed no progression. Am now on a chemo break and just having denosumab for bones. I coped pretty well with weekly taxol…no hair loss, little nausea. Was very tired but as you said after having all those chemo’s its not surprising. I’m sure you will be fine with it. We have a good thread under Treatments and Medical Issues especially for skin mets…feel free to have a look and/or post on there. Please try not to worry too much about the taxol…it could be the one that works for you. We will be ‘holding your hand’ all the way. Please ley us know how you get on, xx
Sarahmummy, did you find the treatments thread?
I forgot to mention that my skin mets are extensive…breast, abdomen, back and i had electrochemotherapy in march which seems to have helped. Marierose has also had it. Look back on previos posts or if that takes to long and you ae interested send me a private message and i’ll tell you what i can, rather than repeating it all agin on the forum. XX
Hi Saramummy, as promised, I have pmd you about sonething entirely different.
however, I hope you find all you are looking for, zmoijanxx
Bumping up for the new ladies!
also SaraMummy, how are things now?
Moijanxx
Hi Spudgirl, sorry to hear your news…always seems to be that they give good news with one hand and take it away with the other!!
I was fine on the carboplatin and it did seem to help with the lung fluid. It sounds s if yours isnt bad enough to warrant chest drain and pleurodesis??? As i had these i dont know whether my lungs got better throough this or the chemo. I do still have some fluid but it isnt causing me problems …i hope it stays that way. I do get a little breatlkess at times and some pain when i am in bed. I was told thiogh that my lung capacity would always be reduced. I was tired of course with the carbo but no real side effects. I hae been ok dring the chemo break…so far i have had no progression or so i’m told. I have been having neck/skull pain so that was included in my last ct scan and it did show some deposits but not whether they were new or had always been there. A recent mri showed i have collapsed discs in my neck but apparently not cancer related???
I have certainly had more stamina and energy since being off chemo. I’m sure you’ll be fine on carbo and that it will do the trick. Please keep in touch. xx
Sarahmummy…please post and let us know how things are going. xx
Gosh that’s a lot of treatments with no response. I started on chemo (nab paclitaxel), along side either atezolizumab (Immunotherapy) or placebo in February on a clinical trial called the impassion study and the early scan looked very promising reducing all mets by at least 50% and 1 lung met completely disappearing. I wish you the best of luck in finding a treatment for you that starts working and quickly
Hugs
Tracy
Hi Tracy! I’m on that trial too. If you fancy having a partner in crime through this I’m here! Xxx
Hi all, jumping into this thread as I think it seems quite active. I have been diagnosed with TNBC again. 2014, 2016 now 4 months after gem/carbo and Mascetomy. It is localised they think and I am having that long wait for surgery appointment. They want to remove my chest skin and replace with stomach skin. Whilst waiting I fee l it growing. Not sure what will happen next as they have to do a histology report. I am in a mess. Trying to hold it together but often can’t. I am angry as I eat healthy, don’t drink and do lots of walking.
Anyone had this surgery? Not sure if it will work as lots of discussions about what should come first treatment or surgery but at moment in discomfort, scared and feel lonely when daughter is at school and husband at work. He holds onto hope still but mine sadly is fading!
Anyone had this surgery and can talk me through it?
Arnie x
Am i standing looking a gift horse in the mouth?
I’m having to choose between a trial Olaparib with AZD6738 or treatment with Eribulin
It’s the wait to join the trial that again leaves me in limbo, one you can start nearly straight away the other you must wait …
Oh what to do and why can’t we ask a Dr “what would you do if it were you?”
Hi hellyhead,
Just wanted to see how you are?
Xx
Hello, this is my first posting on the sbc forum so hope I’m doing it right. I’m feeling a big low today after my trip to see onc. I was diagnosed with metastatic tnbc in Feb 2016, with extensive spinal mets. I’ve been on capecitabane since Dec 2016 and have seen my tumour markers steadily falling. However just had a 7 week chemo break to go on holiday and cea marker has gone back up from 9 to 37. Got to have a ct scan to see what’s going on. Feeling rather deflated.
Hello ladies, never thought I’d be here again… I had TNBC grade 3 in 2013…thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know…be grateful for any advice ?xx
Hello ladies, never thought I’d be here again… I had TNBC grade 3 in 2013…thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know…be grateful for any advice ?xx Teresa xx