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Needing some more inspiring news

22 REPLIES 22
Downbutnotout
Member

Re: Needing some more inspiring news

Angelina - I know what it's like when you feel written off, it's awful. Your poor husband too.

 

Perhaps it would be worth getting a 2nd opinion? I'm so glad I did after being written off by my local onc. At my referral last week their opinion regarding treatment was completely opposite to the awful onc. My surgeon referred me but my GP also would have done it. Do you have a good GP who you could talk through your concerns with?

 

Glo - good luck with your new regime. I hope you return quickly to the land of NED.

 

Hugs((()))

Flo

X

Glo
Member

Re: Needing some more inspiring news

I know I've had a really good run on letrozole, and my onc feels that as I had such a good response that the next treatment will also work quite well but .... Since diagnosis in Sept 2010 it's been my first progression so I'm feeling pretty scared! Start new regime on 13/10 as they have to get paperwork sorted for funding. Hopefully once treatment starts (and the SE are doable!) I will feel more positive!
Angelina, can't you adk about letrozole or E+E ?

ginette65
Member

Re: Needing some more inspiring news

thanks bev and glo

only cape was mentioned but i have an appointment with my onc on the 27 oct after my 1st cycle.i was very taken aback by the attitude of both my onc and breast surgeon,who said to me last week "most people give up at this stage" what?? i replied,do i look like i`m ready to giveup?!! have been treated really well for 3yrs,no complaints but dont understand at the mo.i did have inflammatory bc with 2 recurrances last year,so maybe the lung mets are very bad.i will ask at next app.my husband is devastated when he heard 6months keeps crying which doesnt help me,but he is 74 and not too well.i havent cried yet.

i dont really have anyone to talk to about all this,my family are very good but too emotional,difficult to talk about how much time i may have,so these forums are so helpful

angelina

Downbutnotout
Member

Re: Needing some more inspiring news

Bev and Angelina - Glo's post sounds very encouraging. I hope we're going to be chatting for many years to come.

XX

Smiley Happy

Bevlaar
Member

Re: Needing some more inspiring news

Oh Flo...what a horrible way to be treated! No-one deserves that! Why are some oncologists so uncaring? Why wait for spread and then treat palliatively? Thats madness. Hope you get to be treated more sympathetically in the future.
Keep going!
Angelina... ive been on Cape since july and found it really manageable. Not too many side effects...slight dry skin on heels and occasional diarrhoea and i went for 2 months before the side effects started. I suffer with breathlessness too and find it really frustrating after being so fit for many years before. You should be fine on Cape though.
I cant believe you had a bad experience with your Onc too....whats wrong with these people? So heartless.
If the Cape doesnt work then there are countless other drugs that probably will. Why tell you that you only have limited time?
No wonder you're demoralised! You must be desolate and at your wits end...i know i would be. I really feel for you.
Hoping you'll have more encouraging news and sending huge hug 💖💖
Love bev xxxxx
Glo
Member

Re: Needing some more inspiring news

Hi Angelina,
Have you tried letrozole, it's a really easy treatment (I had no SE). If you are ER+ and no symptons from your mets it's Worth trying.
Alternatively the combo I am about to start (exemestane/everolimus) which does need funding from cancer fund. I am 61 and no other medical issues, my onc always taks of how many treatments are available and often quotes a patient of his who has lung mets for 25yrs!

ginette65
Member

Re: Needing some more inspiring news

hi Glo

no,i tried anastrazole for a while,but i just couldnt tolerate it,so i stopped.maybe i shouldnt but too late now.

my onc only put me on cap but after reading the forums i dont know if this is enough? maybe i should have something else along side it? i felt my onc thought i  am a lost cause. i am 68 but healthy-apart from bc-and on no other meds.i am er+ but her2- you seem to have done so well,4yrs with lung mets. i`ve been given 2yrs max with treatment!

angelina

Glo
Member

Re: Needing some more inspiring news

I was diagnosed 4 years ago (stage 4 from the start) with numerous small mets in both lungs. After 2 1/2 years on letrozole I was NED, last scan Nov '13 still clear then recent scan (Sept '14) showed progression to right lung and a liver lesion of 1.7cm.
So I basically y have had 4 years on letrozole and about to start exemestane/everolimus combo.
Ginette65 have you had an AI? Or are you ER-?

ginette65
Member

Re: Needing some more inspiring news

hi,

was diagnosed with lung mets 2 weeks ago.am starting capecitabine on tuesday. am very nervous about side effects as dont feel too well with breathlessness ect, and 3 years since i had fec and taxotere.i suffered terribly with mouth ulcers. suppose i will get them again?

also i feel very down as my onc told me if i dont respond to treatment i have 6 months left?!! i didnt expect that as i thought there were various options.my mets are very extensive. feel so demoralised

angelina

Downbutnotout
Member

Re: Needing some more inspiring news

Thanks  Bev - I'm hoping for an appointment this week re starting Gem Carbo chemo. I got my 2nd opinion last Wednesday at The Christie in Manchester and they were sending an urgent letter to a different hospital as I have no trust or faith in the onc at my local hospital. They said chemo is the priority now before it all gets completely out of control and I'm too ill for a full dose. Their recommendation is opposite to what my former onc said, who was waiting for symptoms of distant spread and then treat me palliatively. He cancelled a PET scan that my surgeon had suggested and told me I was better off not knowing! I'm going to send a letter of complaint about the things he said to me and the bullying way he said it. I'd hate anyone else to be treated the way I have been.

 

I'm so sorry to hear how you were let down by your hospital. I'll be keeping my fingers crossed that your Nov scan shows shrinkage. I hope your Solicitor is able to get you something but of course it doesn't change all those months of no treatment.

 

Hugs to you too Bev.

Love from Flo

X

Bevlaar
Member

Re: Needing some more inspiring news

Hi Flo...i really hope you get a good treatment plan in place soon. When are you due to start? I'm sure things will start to improve then. Keep positive...its hard i know at times.
Sending a big hug (((( ))))
Love bev xxx
Downbutnotout
Member

Re: Needing some more inspiring news

Hi Monica, Bev and BC-lass

 

I keep looking for inspiring news too. I'm always delighted to see anyone's good news but particularly pleased to hear how well you've been responding to treatment, Monica. As a fellow TN I really need some hope. I have fast growing/spreading skin mets and a sub pectoral tumour, plus I've just noticed a new lump today above the sub pec tumour. Desperately need to get started on treatment as it's all been growing uncontrolled for 3 1/2 months..... but I'll leave that story for another day and thread.

 

Flo

X

Bevlaar
Member

Re: Needing some more inspiring news

Thats good to hear Monica! Just shows that you can get on with life and do normal things if you have the right treatment plan in place.
Long may it continue and hope the hands and feet are not too sore for you ?💖
Love bev xxx
Moneck
Member

Re: Needing some more inspiring news

In a few weeks time it will be a year since I was given my treatment plan for TNBC lobular tumour mass in abdomen, told chemo only option. Capecitabine was doable but by end of 8th cycle (2weeks on & rest week) my hands were very sore & neuropathy was making caring for myself difficult. I am a single lady with some understanding neighbours who will open tight bottles & jars - including the Manuka honey!!

 

In April I went to France for a week (extra week off) & then given extra 3 weeks to allow hands & feet to heal, a month after the last dose tumour markers were down to 600 - still extremely high but a whole lot lower than where they started at 1,800. Markers stayed down until August, I couldn't believe how well I felt out & about seeing friends & joined a couple of 'Knit & Natter' groups - I had been unwell last summer until my diagnosis. saw Onc last week, markers now 1,200 so restart Cape on 20th, awaiting appt for 3 mthly CT before then.

 

I never dreamt in April that my 'chemo holiday' would be 6 months. So it gives me some hope for the future.

Monica

bc-lass
Member

Re: Needing some more inspiring news

Didnt really last year for me as far as i can remember.
Bevlaar
Member

Re: Needing some more inspiring news

I get same problem with stairs...and i cough if i breathe in too deeply! I wonder if these symptoms will worsen with the cold weather? xxx
bc-lass
Member

Re: Needing some more inspiring news

I get some bone pain, breathlessness when climbing stairs etc. Had cough but that seems to be down to reglux caused by ibandronic acid.x
Bevlaar
Member

Re: Needing some more inspiring news

Just dx in may this year. 2 opacities found on xray 5cm and 2.5cm. One at base of right lung and the other more central compressing on windpipe. So i have a cough and breathlessness. But theyve recently started me on small doses of oramorph which helps.

I had a routine chest xray in aug last year at a local hosp after being admitted for something else which i was given to believe was clear. It was only when i had another xray in may in same hospital when i was referred by my GP, that it came to light that the August xray had also shown 2 small shadows but had failed to be reported to anyone.

I made a complaint to the health board insisting on a full investigation and have just had a 6 page letter from them admitting a breach of duty of care and admitting a catalogue of errors during my admission. Its now in the hands of solicitors.
So my treatment could have started 9 months earlier and may not have been as aggressive.
Still...can't change anything now sadly 😯

Do you have any symptoms at all?

My next ct scan is 4th Nov so im hoping there's some shrinkage. The first scan 2 mths ago after 3 cycles of Capecitabine was exactly the same as at dx. Stable but no shrinkage at that stage.
Love bev cxx
bc-lass
Member

Re: Needing some more inspiring news

Double whammy last july to bones and lungs. Have thankfully stayed stable with fec then tamoxifen. I also use mistletoe iv. How about you?
Bevlaar
Member

Re: Needing some more inspiring news

Hi bc-lass....its funny but when youre talking to so many people on here you forget who's got what! You have to keep scrolling through previous posts to find out lol! How long have you had yours?
Love bev xxx
bc-lass
Member

Re: Needing some more inspiring news

I have lung.mets too x
Bevlaar
Member

Re: Needing some more inspiring news

Yes i noticed that myself. Ive been looking on here for a few weeks now but no recent posts.
Could do with some uplifting....especially on lung mets ☺
love bev xxx
bc-lass
Member

Needing some more inspiring news

This has been too quiet x