Breast Cancer Care Forum

Hi ladies.  Just wanted to bring you up to date on my news.   Since late March my liver has been growing (size of tumours), so it was no surprise to discover June scans show progression in all mets and new ones appearing.  I now look 9 months pregnant and every day brings new challenges getting comfortable, moving around, doing all the jobs and things we all take for granted.  I am on regular pain relief due to the pressure of internal organs on my ribs and back and getting to the point I need top up pain relief for when the tumours get busy.   Onc offered another chemo (gemcitabine/docetaxel), but when I researched the side effects I declined.  I know I have weeks or days left and I dont want to spend any of them at hospital or suffering chemo side effects.  So I am at home awaiting the OT from the hospice to come and assess what equipment we can have to make all of our lives easier.  I slept on the sofa for the first time last night as it was easier to prop myself into a position comfortable enough to sleep and I didn't have to worry about disturbing my husband.   Family and friends are being wonderful, but it's a very strange situation to be in!  I have a faith and I'm not scared of dying, but the bit between now and then scares me - the lack of control, possible loss of dignity, dependence.... let's hope the hospice people are as good as everyone says they are!     I've talked before about my emotions around leaving my children and the rest of my family, so I'm not gong to add to that.  I am concentrating on making sure all the people who are important to me know just that, and that includes you lot!  Sharing the us and downs of rads and life around that time and since with you was a gift.  Thank you :)   Love Tat xxxx ... View more

Well, it's been an 'interesting' month.......   First week of April I began to experience breathlessness.  I felt it was due to my liver becoming (visibly) enlarged and therefore pressing on my diaphragm, but I called the hospital and they sent me to the local A&E as there were no assessment bays at my treating hospital.  After 15 hours of waiting, mostly, and a few tests, I was sent home at 3am with an appointment for a pulmonary angiogram (CTPA).  At 8am that morning the ward phoned to say there wasn't a bed for me and I had a mini meltdown.... with my symptoms increasing by the day, I felt I'd been written off as a problem that would solve itself fairly quickly.  I had to attend anyway to have a picc fitted and they made the decision to do the CTPA at the treating hospital so all records were available there....that led to a 7 hour wait and no CTPA.  I was so tired and emotional I didn't have any fight left in me, so left with an appointment for a CTPA at 9am the following morning.  The results were fast tracked and my Onc's registrar came to the ward to see me with the results.  As I expected, no pulmonary embolism, just my enlarged liver pressing on my ribs and diaphragm, the cause of my abdo discomfort and breathlessness along with declining haemoglobin counts.   My OH and I gave the Reg a good grilling about beds and waiting.  He was very good and promised to make enquiries which is why I got a call on Sunday afternoon asking if I could come in at 8pm.  Duly did so and started a 20 hour wait for the trabectedin!!  I know enough about the process now to know there are numerous bottlenecks before the chemo arrives on the ward, but it's unblelievably frustrating that beds are occupied when no treatment is being given!   There were 2 other ladies on trabectedin in the bay I was in, so we had lots of notes to compare.  I eventually got the treatment and escaped at 9pm on the Tuesday night.  I was well enough to walk the dog on Wednesday morning and then it was like someone switched me off....I slept the 3 hours to our cottage in Dorset.  When our son arrived on the Saturday I could hardly get off the sofa to greet him.  Certainly not ticking the quality of life box :(   Lots of ups and downs since then, culminating in 2 units of blood and a bottle of calcium just to keep me busy for 7 hours yesterday.  Now I have a clear week (famous last words?) before it all starts again....  My LFTs were all down quite a lot per blood results on Friday and breathlessness improved with a transfusion.  My liver is still enlarged - very obvious when lying down - but the symptoms have eased a little.  I know that things can change very quickly with the liver, and I've seen the CTPA image (largest tumour close to joining up with the one next to it) so am mentally preparing myself and the family for the inevitable.  My daughter has been having counselling at uni and started a conversation on Easter Monday where she essentially gave me permission to stop treatment when I felt the time was right.  It makes my heart actually ache, but I'm trying to focus on the mature way she is handling herself.  I know it won't be easy for either of them, but I'm confident they will be OK.     Are you having any treatment for your osteoporosis/penia, Bibi?  The secondary ladies usually have denosumab injections to strengthen bones. AC, hope your mammo was clear.  I'm very envious of your skiing trip, Brave.  Hope the training is going well for the London to Surrey.  A friend of my daughter's is doing London to Paris this summer - young legs!   Lots of love to all xxxx ... View more

Thanks, Carolyn.  It is hard, but I'm a tough bird ;)  A couple of school friends came for lunch today and we sat outside in the glorious sunshine and laughed, mostly inapprpriately, at the sh!tuation! xxx ... View more

Hi ladies.  Thanks for your updates, I'm pleased to hear you are both doing well on the whole.     I wish I could say the same, but I've just stopped doxorubicin after 3 cycles because of progression of my liver mets.  The largest is now over 8cm and I had started to have symptoms, so the CT results weren't a massive surprise, but the news still hits like a runaway train.  The next chemo is trabectedin which is administered over 24 hours so that means a stay in hospital and introduces the bed availablilty variable into a life already choc full of uncertainties.  I'm trying to get my head around yet another set of side effects and restrictions on my life - back to weekly blood tests as trabectedin is very tough on the liver and kidneys. If trabectedin doesn't work we're left with clinical trials.  Just a shame there aren't many for sarcoma and not a single one open for angiosarcoma!  If trabectedin is too much for my liver and I get jaundiced, it's game over in treatment terms.   I knew this point was coming, just shocked at how quickly we ticked off the chemo options and not even a whiff of a period of NED or a planned treatment break :(  Breaking the news to our children and my parents was the hardest thing I've ever done - I can't think about it without crying.  Anyway, we're concentrating on making the most of the summer and trying not to think beyond that!  I'll try to remember to pop in here from time to time - I was using the secondary boards regularly while on taxol, but stopped at the beginning of the year.  The number and range of treatment options for secondary bc only served to highlight how few I have and I found it wasn't helping my mental health to be reminded of that constantly.  I sometimes put stuff on FB, so if you use it and want to stay in touch, PM me your details and I'll send you a friend request.   Sorry this isn't a more positive post - kind of sums up where I am at the moment.  Tat xx ... View more

Shocking news and a real loss to this lovely community.  Among a group of wonderful, warm and supportive members, Marirose was among the best.  She always had a kind and encouraging word for everyone, remembering details of their dx and treatment, whilst clearly downplaying her own struggles.  I do hope the BCC team can pass on to Marirose's family our genuine love and respect for this thoughtful, generous and caring woman.     Rest in peace, Marirose, we miss you xxx ... View more

Well, Christmas happened!  So good for you to have your boys home, AC, despite the teenage fridge-emptying trick they all seem to excel at ;)  Hope everyone else's was the right mix of chaos and fun!   We had a lovely time playing grown up 'sardines' in our little cottage! So many laughs and, most importantly, the food was delicious (even if it was the usual constant round of prep and washing up over 5 days!). Boxing day was spent walking on the beach in glorious sunshine and we visited an old family friend in Bournemouth on Wednesday.  I really couldn't have asked for a better Christmas if I'd written a script for it :)  The kids are driving back home today, so anxiously watching the weather and traffic reports!   There was a slight sense at times of the elephant in the room - will I be around to celebrate next Christmas.  I've talked about it with my husband and close friends, but no one else in the family, although I am sure they have all considered it....   Thanks for the heads up on doxorubicin, brave.  I had only looked on the secondaries boards so had missed that adriamycins are used for primary bc.  I had the option of combining it with ifosfamide, but that involves a 4 day inpatient stay each time because it's so harsh.  For me it's quality of life every time and a minimum of 4 days in hospital each cycle doesn't tick that box....   Lots of love to everyone and best wishes for a very happy and, of course, healthy new year :) xxx ... View more

Hi all :)  Your blog post dropped into my inbox today, brave, and that made me check on this forum.  I am sooo glad your mammo was clear and your consultant organised a bone scan pdq to put your mind at rest.  It's a relief that it's 'only' arthritis - plucked that one out of the 'Things you thought you'd never say until you had cancer' booklet that I seem to use quite a lot!  Hope the ibuprofen helps get the discomfort under control and a longer term plan is sorted for you.     I had been mostly hanging out on the secondaries part of the forum while on paclitaxel, but scans at the end of Nov showed progression in all existing tumours (no new ones, thankfully), so I haven't had Taxol since 22nd November.  I will start doxorubicin in January, not a chemo that seems to be used for bc, so I've been using the sarcoma FB groups for info on side effects.  It'll be a much harsher regime, delivered every 3 weeks, for a max of 6 doses.  I'll be scanned again after 3 cycles.  If it works I'll have the second 3 cycles and if it doesn't there's one more chemo - trabectedin - to try before we're in clinical trial territory.   We found all this out on 2nd Dec and I have been trying to climb out of the hole since then.  Every bit of bad news seems to be harder to bounce back from, especially when one of the 3 chemo options (and the most manageable in quality of life terms) has been ticked off the list so quickly.  On a brighter note, our daughter came home from uni a week ago and my son arrived home today and has the whole of the Christmas period off!  We are spending Christmas in Dorset so I've been keeping busy planning the cooking of Christmas dinner in the Aga and hoping McDonalds is open in case it doesn't work out!    How are you, Bibi and AC?  Be good to hear your news   I hear your worry about your boys, brave, the teenage wing spreading is a terrifying time - especially because I remember what I got up to!  I would say, though, from a personal and professional viewpoint that all the good stuff you've put in over the years still counts.  Try to keep the lines of communication open and keep having fun as a family - young people from families where parents are interested and spend time with their kids are far, far less likely for the 'experimentation' to become a crutch or habitual coping mechanism.   Wishing everyone a happy Christmas with the people who mean the most to you :)   Love, tat xx     ... View more

Well, that's me off Taxol now.  Results of Monday's scan show all liver tumours have grown :'(  Going to have a break until the new year and then start doxorubicin on a three weekly cycle.  There's a lifetime dose of 6 cycles of dox, so whether it works or not I'll be moving onto something else before too long.  Feeling pretty low tonight, but my daughter's coming home from uni, so that'll help.     Hope everyone else is having a better week! Hugs, Tat xx ... View more

How have I not stumbled into the Cyber Cafe before??  Who wouldn't feel better with a Bailey's latte while watching the Gay Gordons? Priceless :) ... View more

I'm with stillhere, Marirose, in everything she says.  Please don't worry and paint on a 'I'm fine' face!  It's absolutely not fine for you to feel this way!!  It's perfectly reasonable for you to call for an appt with your onc to discuss this new treatment, especially in view of the pain you're feeling and the rather rushed way the switch was made.  Big hugs xxx   ... View more

Gosh, what a long inpatient stint, Carabel.  So sorry you had to spend so much time in hospital, but hope you are breathing easy now and quickly get your strength back now you are back in your own home.  I'll be thinking of you on Thursday xx ... View more

Saw your post about the results of your scan, Marirose.  It's so strange how paclitaxel can work on your lung mets but not on the liver!  Blasted disease :( I really hope stopping Taxol allows your ulcerated skin met to improve and you hang on to the rest of your hair.  I don't know anything about Fulvestrant, but I hope it works and has minimal side effects. Your BCNs sound lovely, that level of thoughtfulness and care makes such a difference when you receive mixed or bad news, eh?   I have a scan at the end of this month and will find out whether Taxol is working for me.  I'm not a big worrier, but I'm already quite anxious about this - probably because it'll be the first scans since my 2ndary dx and starting chemo.  I had T6 (although it was the first of cycle 3, so technically number 7) on Tuesday.  My onc reduced the dose to see if my white blood cell count stays up..... watch this space!   Carabel, we hope you are home and feeling much, much better.   Take care everyone xx ... View more

I do hope they have chucked everything possible at any infection, Carabel, and you are out of hospital now and breathing more easily.  Wherever you are, I'm sending hugs xx   Lovely that you saw your family, Marierose, and especially your grandchildren.  Nothing like a cuddle with little people to make me smile :)   They ran my bloods immediately today and wbc is down to 0.63, so no chemo tomorrow.  We're seeing my onc on Friday, so have lots of questions...who'd have ever thought we wouldn't want to miss a chemo session!! Just another weird thing about living with cancer, eh?     ... View more

I hope you are now on the mend at home, Carabel, and the blood clots are gone.  Have the medics able to say why the clots developed?  If your tumours have reduced in size according to the CT, it's rotten luck to be in hospital with blood clots :(   Marierose, glad you are finding Taxol do-able and your wbc is holding up.  You'll have had your CT by now so I hope you got through it OK and the results are swift and good.  Your hair is holding up well, I just have a fine down now!  I don't mind wearing headscarves (the wig's too hot and itchy!) and will probably go completely bald once all the hair is gone.  After worrying about it I've discovered I rather like the shape of my head!   I didn't have chemo last Tuesday..... On the Monday my wbc was only 1.5.  After a 4 hour wait the next day, I was called into the ward and the nurse took bloods again which came back with a wbc of 1.3, too low for chemo.  It was a bit frustrating as I'd wasted 4 hours waiting (lots and lots of waiting at my hospital!) only to be sent home again!  I can check my bloods via the hospital's patient health portal, so if they are low again I will be proactive in asking if they need to be checked again to, hopefully, avoid a long wait for no reason.  I'm learning!   Had a lovely half term with my family visiting for a few days :)  Hope everyone else's half term has been good and you are ready for the clocks to go back :(   Keep on keeping on, Taxol Team!  Tat xx ... View more

I'm a fan of PolyMem too, Artermax, except I was told to moisten them with cooled, boiled water.  I had 33 rads and used PolyMem from 2.5 weeks in through to 2 weeks after my last rad.  I don't think I could have finished rads without the PolyMem; the glycerine type compound in the dressings gave huge relief from the itching, soreness and tightness.  I also took regular painkillers and antihistamines when the itching became almost constant.  According to my onc, I had a grade 4 skin reaction, but 2 weeks after my last rad my skin was almost back to normal.   I hope you find something that works for you x ... View more

So, taxol number 5 has produced reaction number 4.... bit bored with this now!  Been here 6 hours already, 2+ in the waiting room, then lots of delays with pre meds and an ECG after the reaction.  Now infusing at a slower rate. Yawn!  Other than problems during chemo, I've been ok.  Felt unwell  and sleepy Thursday, but fine since then.  Wbc 3.2 from yesterday's bloods, so slowly sliding...   Hope everyone else is having minimal se's.   hugs, tat xx ... View more

It's SO good to hear from you, AC!  And especially good to hear such a positive overall outlook in spite of the unbelievably difficult year you've had.  If there's one thing I've learned, it's not to look too far ahead (I'm not very good at this, but I'm working on it!) and celebrate little and often; it really helps me to actively look for the good in life - there's plenty out there that I probably didn't acknowledge before this whole cancer **bleep**uation descended!   Warwick uni is less than half an hour from me, so if you ever need somewhere to stay or want to meet for a coffee when you visit your son, just say the word.  It is a very good uni and I am glad your son is enjoying it. The empty nest is a weird feeling, isn't it?  I keep telling myself I've done my job by equipping my kids to live independently and, most of the time, it works ;)  Sometimes I feel frustrated about being tied to the hospital for weekly pallliative chemo (not how I thought we would be spending our time once the children were living away from home!), but we're trying to make the best of it.   Lots of love for you as you sort through your mum's things and deal with probate; such a difficult time anyway and so much harder if family are being awkward.  We have just signed new Wills and are in the process of collecting signatures for Lasting Power of Attorney over financial and health and welfare for me.  I am the kind of person who needs to have that sort of thing signed and sealed, but the discussions have been surreal at times.   Anyway, I have just placed an order on that well known auction site for lots of silly hats for Christmas.  I will have to wear something on my baldy head, so decided to make it a 3 line whip (no one can argue with the terminal cancer patient!) that everyone wears a daft hat AND walks the dog wearing it :)   Lots of love to all xxxx ... View more