so glad your scan didnt show any soft tissue progression and hope the bone lesions arent anything to worry about.
tina i always wanted to go to disney when my kids were wee but never had the money for it and now i have they are too big to care lol… hope you get away and have a fab time and make some lovely memories for your wee family.
Laura glad you had a good holiday and your meeting with your onc sounds really positive… so pleased that there may be no sign of active cancer… thats just brill. would be very interested in hearing about the prostate drug too… might have to do a bit of googling for that.
hope your doc can get your liver pain sorted and that there isnt any spread. the sleepless nights and the wee monsters in your mind that take control are horrid… i think if its affecting your quality of life you need to discuss it with your doc again.
i saw my surgeon today and im booked in for an ultrasound wire guided excision of the nodes in my chest and another couple from my auxilla. he wasnt at the multidisciplinary meeting on tuesday and it was decided i should have this surgery followed by a taxane… dont know which one but never had taxotere so presume it will be that… dont know much about it and whether you can have it on its own… i had epi-cmf last time… and they have said no more rads as its on the left side but hes not happy with that and wants me to have rads and thinks i should have rads more than chemo… but want something systemic but would be happy to have rads too… never thought id be saying id be happy to have chemo and rads but you all know what i mean.
Really worried as was diagnosed with seconderies in the pleaura, was all sorted out with more chemo and zolodex implants with letrazole, finished the chemo on the 1st of June, I then had a ct scan 3/4weeks later which showed a normal ct scan. I now face a further ct scan as my back/lung area is sore again, I had a chest xray last week which read that “there was movement” . Hense the ct scan due on monday.
I fell like a mouse on a continuous wheel, for a while I get off, then I get right back on!!
So down about this,
Hi All - Brain turned to mush so sorry if i forget bits!! Oh, chemo is wonderful!
Jo - Just PMed you with some answers to qu. Good luck for tomorrow! Hugs fellow Worcesterite!
Tina - have you booked Mickey Mouse? Remember to take proof of BC letter / report with you nd take it to the front desk - you will get a fast pass for all rides!! You do not want to be standing in lines all day! Time is so precious. Fingers still crossed for you! PS I agree with your Blue Badge posting - well said!!
Hi Hope15 - My number 11 and 12 were just HORRID!! I thiught it was all downhill from there, but it was not! It got better again. So, hope the same for you. Each one follows the same pattern but the SE are different intensity. I have Piriton and fall asleep within 10 mins! Gets me throgh the chemo day itself - snoring!! Your kids are so little must be very frustrating for you. Mine are 12 and 15 and different frustrations are apparent! ((((hugs to you))))
FQ - Im delighted no soft tissue disease - but hear your concerns about the bones! Sounds really confusing. I hope you get a reply to the other thread that helps you.
Laura - Sounds like you have several exciting options for you now. Hope the scans help you to know which way to go! Hope your feet / hands are OK. How bad are they if you dont mind me asking? Im suffering and not sure how bad they have to be to be ‘bad’?
Jill - What a treadmill for you! Looks like we both have scans on Monday - fingers crossed. There seems to be lots of scanning going on at the moment! So glad we have each other on this site! (((Hugs)))
LuLu - completly understand WANTING chemo! If it keeps us here for longer that has to be good! But, it is hard! Hugs to you too!!
Ive had a bit of a grumpy day. Had such a wonderful summer with the kids and two extra weeks off chemo that the reality of the situation hit home and I dont want cancer!! Kids back at school and I miss them. OH working in USA this week, but had a long chat with him before he went nd he said how hard he is finding it and feels depressed. Glad he told me but hard to ‘spare energy’ to support him. Any tips? How are all your OHs coping?? My SE are also not great today - not moved from the couch. I hope I will pick up mentally tomorrow or Saturday when I pick up physically!
Sorry for all speelyinng mistooks, cant spell at the best of times!
Sorry sadie you are feeling low - I know the feeling just hits you sometimes that wish life could be normal. I think OH hard as their fears and worries different but also real. Mine has changed a lot since last year when diagnosed and was in shock. I do feel sometimes though that cancer takes over the family and affects every relationship but we have more than enough to keep ourselves going. I think counselling helps OH too - maybe yours would consider . Thankyiu for encouraging news about the last cycle of paclitaxol that hopefully will not be too bad. Are you on no treatment now til after scan ?
Lulu - if taxane weekly not too bad as on 14 and up til now wasn’t too bad but had a terrible one this week. Think was as so many pain killers with liver pain as think I have another bleed or tear. They are not rescanning as liver showing good result 4 weeks ago. I’ve been on tramedol and morphine for a week and think didn’t go well with chemo. I am not having IV piriton anymore.
Laura - interesting as my Onc talking of same trial open to stable metastatic triple negative pts for the prostrate tablets. Would be great if we were both eligible and if then had the receptor to get the drug. We need some good tn treatments.
Good luck to Tina with results, sadie and Jill for scans next week and glad that your disease not spread to organs Rachel. I tell myself as long as responding to treatment is a good sign but like you mine recurred within 6 weeks of a scan.
Hi all hope y all doing well sadie sorry to hear your low it is v hard some days my oh sd he finds it hard as well but I think he kps a lot from me I know he sd he had a little cry in the car the other day some days are hard some r ok same as us I guess it’s very hard to say about feet and hands can’t feel them they are numb walking is hard my fingers tip are sore and numb my onc sd it can cause permant damage that is why he stopped chemo what is happening about y chemo are u carrying on. Hope that’s gd news they have got to test my tissue first before I’m allowed to have it what hos u under be gd if we can go on it. Tina gd luck for scan can’t wait to hear your news let’s hope it gd hugs to everyone else xx
Hi all
hope everyone is doing ok
I’m feeling a rant coming on so please bear with me!! No scan results as yet, my bcn checked the system this aft for me. Wheezy chest is definately not improving + I’m feeling out of breath much quicker than usual so i’m naturally expecting a lung mets dx
anyways, I called my onc’s secretary to arrange to see her at clinic this weds (she told me to book in after my scan). Clinic is booked up so I can’t be seen until the following week- 21st! That is just to discuss results so any treatment would commence a week or so later. So I explained my concerns to the secretary, about the deterioration in mybreathing + my general eagerness to ressume chemo sooner not later. She was nice + said she would speak to the onc. Well half an hr later, she called back to say the onc wants to see me on 21st + not sooner. Grrrrrr!!
I feel like it’s a battle of wills with this f*cking woman (sorry but I’m very wound up). I have been virtually begging for appointments + scans since my hol, but she seems to like the power + authority to make me wait longer than necessary. Given she’s told me herself how quickly things can go wrong with tnbc, I feel it’s just a step too far. I feel like phoning + asking them to make a note in my file that once again, they’ve refused to see me urgently. I’m tempted to change oncs- I’ve persevered with this woman despite her negativity + the fact she had me written off + dead by last Xmas! Now I feel she almost wants to delay things so my stuation is worse by the time treatment starts. Has anyone ever changed oncs? I fear I may end up losing my rag + I don’t think it’s good to have such a poor relationship with the person whos in charge of my care + can stop my treatment at any time.
feel better for ranting. Sorry for no personals but I’m totally consumed in my frustration at the mo. Am I being unreasonable??
Tina xx
Tina feel so sorry for you I changed onc when I got dx my other onc told me wasnt concerned about my chest pain if it wasn’t for my gp I don’t know when I wld have got dx with lung mets I’m now Beeing treated by the Marsden have been treated v well by them so glad I changed god nos what wld have happened
Tina that sounds awful. I think you def can ask for a new Onc why not contact PALS and see if they can help. I’m not sure of the process. I changed BCN and that was quite straightforward but think with an Onc it maybe different but everybody is entitled to a second opinion if nothing else and I think you do this through your GP.
Maybe she is holding off cos she’s seen your results and isnt worried about them ?? Wishful thinking maybe !!!
I don’t know why the are dragging their feet my results are on the system within 48 he’s also at my old hos I was told the doctors can see the scans within 24 hrs but won’t have the report then I hate waiting for results try to have gd weekend big hug xx
Think I would be inclined to wander into A and E on a weekday when the oncs are about and tell them you have come in because your breathing is really bad and you are feeling terribly terribly poorly… etc etc.
At least you might get seen by an Onc!! Sneaky I know but if you are not being listened to sometimes maybe you have to be? If you aren’t happy with your onc see if you can change too.
You are not being unreasonable, but the hospital are! I am sorry that you have been treated like this, similar happened to me earlier this Summer and I was suffering with shortness of breath and worried about lung mets! You haven’t mentioned the hospital, but I know from speaking to you previously we are both treated at the same hospital. My appointment to discuss my scan would have been 10 weeks after the scan! I complained to my GP who got involved, he phoned the oncologist and ranted and raved and managed to get me an appointment the next day - it may be worth a try!
that is awful tina, how can she be so dismissive, i had my scan friday and my onc had results ready for me but i know what you mean we need a good relationship with them i really like mine cant say i agree with capecitabine but has shrunk regional lumps so may just see how it goes for bone scan , so bloody frustrating i really feel for you just create and chandge oncs if oyu have to its our bloody lives they are in control of,the anxiety isnt going to help your chest either sending you hugs please keep us posted xxx
Jeez, Tina, sorry to crash the TN thread, but that’s totally unacceptable. Think I’d be knocking on her office door by now, demanding she share her knowledge about me, with me!
I know that at Brighton, they have a multi-disciplinary meeting once a week, and results have to be discussed there before they’ll inform the patient. I wonder if there’s a similar system at your hospital? But if that’s the case, why won’t she just tell you?
How about speaking to her on the phone? If I leave a message for my onc to call, he does. If yours won’t, I reckon I’d request a switch. It’s so very important to have a good relationship with the person who we feel is pulling the strings to perhaps increase our life-expectancy significantly. They really do have a hand of god in our outcomes. Like you say, you’ve persevered with her. I think it’s outrageous in the first place that she made your diagnosis sound so hopeless. False hope is bad, but false-despair, that’s a whole lot worse. Do a swap. Nothing to lose. If it’s not good news, then it’s got to be the best possible treatment. xxxxx Jane
It’s no wonder you feel like ranting I feel like ranting for you. I have to agreed with Ali if you are worried about your breathing please go to A & E and have yourself checked out. You’ve done the right thing contacting your onc and seem to have come against a brickwall.
I can’t believe your onc is so blase about this - take care of yourself.
Love
Chris x x
Tina
Do you have a 24 hour help line cos if I was in your position I would ring mine tell them how I am probably lay it on a bit and I would be admitted & take it from there
I’ve been today spent 40 mins with a different doc who was really nice & answered my questions all instructions had been left by my oncologist drugs changed to
Avastin ( funding obtained)
taxol
Zoledronic acid
Had all 3 today took 5 hours in total with the flushes
Next fri I get just taxol
Following fri get avastin & taxol
A week of and back to week 1
You are so young & need the best available to you i probably know but what you having at mo would avastin be an option Sadie is having it. I know it costs about £150,000 per year but check on your areas cancer funding pot west mids is still good
Thanks for all the messages you are all really kind
I was bloody fuming earlier I just feel she likes to have the upper hand- if I say I want to be seen sooner, she says later…
I’m not really unwell or anything, but I have felt myself noticeably slow down in the last few wks. I can sleep on tap, my chest has become wheezy + I feel out of breath much quicker than usual. I feel ok thoough, I’ve been out + about today with a friend, and out for a nice meal tonight (hubby wanted to cheer me up). I just know I’ve deteriorated and with triple neg, things can happen quickly and treatmentisnt always effective. So common sense says to me that I need some treatment sooner rather than later.
Will post properly tomorrow + reply to personals, my battery is very low on phone + I’m shattered. I really do appreciate all your support + you have confirmed I’m not going mad wanting to be seen asap.
Love to all u lovely ladies
tina xx
