Waiting for symptoms before restarting chemo?

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blondedoris
blondedoris Member Posts: 197
edited September 2016 in Stage IV/Metastatic Breast Cancer ONLY

Heyas everyone

Just had a really strange (I thought) convo with my oncologist and wondered if anyone else had been told similar.

Scan results are back - radiotherapy for skulls mets worked completely (yay!!) but Armidex hasn't controlled the lung mets and there's a couple of new spots popped up (boo!).

She told me they're small, and as I don't have any symptoms as yet that I don't have to start chemo again straight away, unless I wanted to. Her advice was to stop Armidex and then decide if I want to do chemo again or wait until things progress further.

I thought (rightly or wrongly) that if there was active cancer in one place then it has the potential to seed cancer cells elsewhere (like spread to the liver or another organ). I understand the theory of 'treating the person and not the scan', but this came across as being a bit strange. I'm 42 so it's not like I'm in my 90s and already on my last legs...the chemo would most likely be Halaven which seems do-able from the threads about it.

Any thoughts? What's your doc ever said to you that you thought was odd?

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  • Boo123
    Boo123 Member Posts: 182
    edited September 2016

    Gosh, that sounds a surprising approach. Have you tried the other hormonals? Aromasin or Letrazole? I have been through all of those and Arimidex without much luck but am now on Faslodex injections , another hormonal, and that seems to be working. I'm in the UK too. My onc is pro-active in trying all hormonal out before chemo, maybe speak again or seek another opinion? Anything to keep things under control...

    Boo


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  • blondedoris
    blondedoris Member Posts: 197
    edited September 2016

    Hey Boo

    Yeah, I've been on tamoxifen, letrozole, aromasin and arimidex so far with limited success...not tried faslodex though. I don't mind trying different chemos; it was the attitude of letting things grow until,they cause issues that surprised me. Think a second opinion is in order...there's a couple of patients who share the same Onc who aren't comfortable with her either

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  • Fitztwins
    Fitztwins Member Posts: 7,969
    edited September 2016

    I think this is a new approach , my doc pretty much said something similar.

    Our mindset has been to go after any kind of progression, any cancer should be eliminated right? however with mets it seems we are on the palliative approach. Control and minimal side effects. I too have small spots in the lungs that have minimal growth and my doc usually does a wait and see approach, I have never had symptoms with my lung mets...

    I am thinking that they don't want to burn through our chemo options faster than needed and most of the times it comes with a cost of side effects more harmful then what the cancer is doing right now. Does that make sense?

    What about adding Ibrance? my doc wont add it until we have major progression because of side effects and he doesn't like using up his options. I seem to get about 1 1/2 - 2 years out of a hormonal.

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  • Longtermsurvivor
    Longtermsurvivor Member Posts: 1,438
    edited September 2016

    Hi Blond Doris and Fitz Twins,

    Yes, it makes sense in MBC to not burn through all options until clinically necessary, but to treat palliatively by balancing quality and quantity of life. This has been my oncologist's approach for 24 years (please remember, my anecdote isn't proof of anything!).

    Many oncologists approach MBC treatment choices with the question - will this improve my patient's situation or worsen it?

    Chemo and hormonal treatments take a toll on those with minimal symptoms and can be even worse for those with very advanced disease who have no resistance to unwanted effects, infections, etc. There's a reason this is called "chemo unto death".

    It does no good to cure the disease at the cost of the patient's life or well-being.

    Waiting for symptoms is a valid approach and one used by many oncologists.

    Yes, we patients want to dance with NED/NEAD, but it's an illusion to confuse disease response, progression-free survival and overall survival.

    I'll try to find some of the large studies showing that's statistically true for large populations, but won't necessarily hold true for individuals.

    That's why we need oncologists who are aware of studies/statistics and are finely tuned to us and our individual needs.

    Blond Doris, perhaps a second opinion is in order, if you feel uncertain with this one.

    I'll be curious how other bco members weigh on this weighty issue!

    warmest wishes for all, Stephanie


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  • hansaim
    hansaim Member Posts: 278
    edited September 2016

    My MO said a similar thing. Though the pathology said ER+, I have not benefited from hormonal treatments. Last year, I had 6 cycles of Abraxane and had 2 months of break from treatment. Then, a CT scan showed some progression on the lungs but my MO felt that I could go 2 more months without treatment. She said there there was no evidence that continuous treatment was more beneficial. After some discussion, I went with Faslodex/Afinitor, but they didn't work for me anyways. I would definitely ask about targeted therapy like Afinitor, Ibrance. No treatment did make me nervous.

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  • blondedoris
    blondedoris Member Posts: 197
    edited September 2016

    Thanks peeps!

    Ibrance was mentioned as well, but like Halaven, it's not on the 'routine' prescription list so I'd need to apply for the drug on compassionate grounds; there's no guarantee I'd be approved for it anyway. Like Hansaim, I'm ER+ but I seem to be resistant to hormonals so far. I did really well on paclitaxel but came off that as I'd had more cycles of it than they'd have liked (I was advised to come off it so I didn't develop resistance to taxanes, which was fine with me). The new spots have appeared in the past 6 months, and are still small so they're not exactly running amok in my lungs at the moment. It's just hoping they stay lazy and not start sprinting if I do nothing.

    Partly why I'm dithering is that I'm planning to go to a resort wedding next June, and would rather not be on chemo whilst I go on holiday! This disease is such a PITA...I'm a compulsive planner and cancer is so unpredictable it drives me nuts! lol *sigh*

    I'll discuss it again with her when i go back in a couple of weeks...

    Here's hoping if we have mets they all stay lazy and can't be bothered to grow!

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