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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

Re: chemo response/non response

3network3,
Thanks for your reply
Yes, it is interesting. So perhaps the 'complete response' is less common, and the partial is the most realistic to try to achieve? Also it is intersting to note there is a scale in existence to measure it. 3 would to me seem pretty low, but obviously your onc was pleased with it being reported as a 'significant response'
It is so difficult to work out what things mean, statistics, fast growing, slow, stages, - when all of us just want the thing not to be there!
I am not sure it works for me to scrutinise all this, but when told that response to chemo is 'modest'. I think it is perhaps natural to question 'why?' - but one must trust that the team have seen it before and know what the best for the patient.
i think I feel the need to feel reassured the tumour is not still 'active' ie a limited response means that it is 'still growing'. If that makes sense???
Thanks everyone.
WS
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Member
3network3
Posts: 767
Registered: ‎01-05-2012

Re: chemo response/non response

Interesting subject. I had 3 FEC and 3 Docetaxel pre MX and acc to scans pre OP they were happy and said the tumour responded well to it. After MX the path report declared "significant response" but on a scale of 6 it was 3. I had IBC, grade 2, ductual invasive, HER2 +++ and ER 4/8. Onc said it's called a partial response and it it very common in comparison to a so called complete reponse.
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Member
Sascha
Posts: 198
Registered: ‎01-05-2012

Re: chemo response/non response

Wow lucky you, great news - what kind of cancer did you have? It is true that grade 3 tumours do respond a lot faster to chemo as it is most vulnerable in the growth stage.........but the ones that seem to appear overnight is a bit doubtful to me as mine was lobular so it lurks and then seemed to appear overnight but clearly had not, its just the way it grows like tendrils.....its so difficult to know isn´t it?
Where did you have dose dense chemo then? In the UK?
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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

Re: chemo response/non response

Samlee,
Thanks for your reply, I think what you are saying about fast growing tumors responding better is really interesting and supports what Em has said. I do know that my tumor was present for a long time, and I am surprised that it was still only a grade 2. Samlee the dose dense regime as you have said does not appear to be widely given.
I do now feel a bit better now that I have a little insight as to why my response has not been 'dramatic'. I guess I should try to see it now a little more positively.
It is quite difficult, as others must feel to be wondering what the next plan is I am unsure whether to prepare for another chemo ( that will be no 6, the onc did say I might have to go up to 8 that will be 3 EC and 5 tax.) or begin thinking 'surgery' .
I guess I will have just to be patient and hope the team come up with the best plan, it's just uncertainty can be hard to deal with at times and the thought of more chemo.....
Thanks
WS
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Member
SamLee
Posts: 280
Registered: ‎01-05-2012

Re: chemo response/non response

I am one of the annoying people whose tumour shrank from 4.5cm to dead cells and I went from needing a MX to a WLE. I had no node involvement.
I was told by my surgeon that the tumours which grow the fastest and which seem to appear overnight, are the ones which shrink the most.
I would also say that I also had dose dense chemo which doesn't seem to be a very popular regime on here. I had AC and Paclitaxol - 4 of each and as well as being dose dense the Taxol was also 1½ times strength, so it really had all guns thrown at it.
Don't forget though, as Sascha says, the chemo isn't just to shrink the tumour but to pick up any stray cells that might be lurking elsewhere.
Sam
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Member
Sascha
Posts: 198
Registered: ‎01-05-2012

Re: chemo response/non response

I have sent you a private message wintersocks re chemo sensitivity testing.......
I have decided against having chemo here in spain having had a second opinion in the UK re the regime and dosage but I may take up modified chemo in the UK - for now I have started hormone therapy and will be having radiotherapy st some stage also. I am also investigating sono photodynamic therapy.
Your experiences are very interesting but of course chemo is often used for the stray cells that are not visible.......so it does not eman there has been no benefit to you but of course its disappointing it was not more dramatic
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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

Re: chemo response/non response

Thank- you both Flower 20 and Em,
I think the issue of response/non response is curious and I must admit I do feel I need to know why it is so....and what the implications are??
I will ask the onc when I see her on the 5th or the bcn if she rings before then.
thanks
WSxx
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Member
Emylou9
Posts: 297
Registered: ‎01-05-2012

Re: chemo response/non response

WS - no my onc didnt give any possible reaseons but just said that I would be moving on to TAX so presumably she is hoping that will have better results. She did say that a scan might show up differences (hopefully shrinkage!!) that a physical exam might not. I will get a scan after my third FEC before I start the TAX. It may be somthing to do with the grade as I read somewhere that faster growing/changing cells are more susceptable to the effects of chemo - maybe we have lazy, slow-acting tumors that take a while to grow and also to shrink - lol!! I know what you mean about meeting your onc - they always manage to say things that leave you worrying about stuff you hadnt worried about before!!! Hope you get good results from your scan, Em X
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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

Re: chemo response/non response

Hi Emylou09
This non-response scenario seems surprisingly common, It is still difficult to work out why that is the case? do you suppose it is our individual reactions? or the type of cancer? or the grade? or the stage?
I have had a quick rummage today, and there is definately some kind of change, but there still appears to be a 'hard core' in the breast. I will know more following the scan I had yesterday, hopefully towards the end of the week.
Yes, also my onc seemed a little disappointed, did yours give a reason as to why shrinkage was not happening?
I too am grade 2 with 1 node that I know of, I have ductal/lobular in the same breast (perhaps that's why??) and strongly er too
WS x
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Member
Emylou9
Posts: 297
Registered: ‎01-05-2012

Re: chemo response/non response

Hi Wintersocks - hope the scan went ok. I've onlly had two FEC doses so far but my tumor hasnt changed/shrunk as yet and my onc seemed a little disappointed. I've got one more FEC and then move onto TAX for the last three so am really hoping they do the trick. It feels like we're going through all this horrible chemo for no results at the end of it......I have invasive ductal, grade 2 with at least one node affected and am strongly ER+. Em x
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Member
Flower20
Posts: 98
Registered: ‎01-05-2012

Re: chemo response/non response

Hi WS

Like you i have ILC and I worry about this too... only thing is I had my mx in Feb so I don;t know if the chemo is working on the cancer. I can sure as hell tell you that it is working on all my good cells becuase FEC has floored me and hospitalised me once already. I read somewhere that for ILC sometimes chemo is not used before surgery; docs would rather tackle the cancer by hormone treatment. I'm not sure how that works for you as you seem to be mixed IDC/ILC though. I had one node positive but was told i wasn't getting tax- just 6 X FEC. Call me an old cynic but i couldn't help wonder if this was due to cost of the tax as jsut about everyone i know who has +ve node gets tax. I sought a second opinion ( and another from an oncologist who is a friend of a friend) and they all seemed to agree that FEC was suitable based in a risk benefit analysis. Hope this helps a bit x
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Member
Historygirl
Posts: 218
Registered: ‎01-05-2012

Re: chemo response/non response

Hi WS

I think it is possible for the cancer to sit there neither shrinking nor growing. My onc says there has been no change. He showed me the CT report which said "essentially no change". OK there is that word essentially but I'm assuming that means any change either way is so tiny as to be neither here nor there.
Here's hoping that now we have both been changed onto tax the chemo will give the little b******s a good kicking.

D x

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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

Re: chemo response/non response

Thank- you Alesta and Libby,
Thank-you for your replies, Libby my cancer grade is 2 with 1 node involvement at least...more will be known I guess following surgery.
I have my MRI tomorrow and a decision will be made upon review, whether I proceed with more TAX or go to surgery for the MX.
I have read many times now on the forum of people who have 'modest' responses in tumor shrinkage to those whose tumors disappear completely!
It is interesting what you say about the grade being a factor, I guess thare must be other stuff too.
I just feel a bit worried that if it isn't shrinking it must be growing?? (If that makes sense) I don't think it just sits there doing nothing???
Alesta, my TAX has been bearable second easier than the first, (in which I ended up with IV antibiotics) but I don't want to have to do 2 more to have a minimal return.
I guess these questions are for the onc, but to be honest I just go in and spend the next 5 mins trying to get out...as my anxiety levels hit the ceiling. I just want to escape..
Thanks
WS
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Member
libby_2010
Posts: 1,052
Registered: ‎01-05-2012

Re: chemo response/non response

Hii WS my tumour apparently showed no response to chemo either based on MRI after 3 chemos and MRI after 6th.I had been anticipating some response as I had had a metal marker put in and tattoes to breast guided by u/s so the the surgeon wwould be able to identify were the tumour was/had been. It was 4.2 cms. I was devastated at this apparent lack of response. The MDT meeting decided surgey should follow and a decision regarding more chemo be made after the histology.
In the event there had been some response and the tumour was 2.1 cms when removed. You do not say what grade your tumour is but I was told by my Onc that Grade 1 tumours respond less well to chemo. It is all so worrying isn't it? Hope all goes well for you. MRI scans are only one tool and the results are not written in stone. XXX
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Member
alesta29
Posts: 625
Registered: ‎01-05-2012

Re: chemo response/non response

WS
There are no predictors to chemo. It is a crap shoot.
A modest response could just mean that the tumour didn't completely disappear - it doesn't usually mean that it has grown.
Good luck with the TAX. You might want to check out the thread - 'need positive posts about TAX' which is somewhere in the chemo thread. Some folk have a hard time but some breeze through. Hoping your in the second group!
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Member
wintersocks
Posts: 410
Registered: ‎01-05-2012

chemo response/non response

Hello,
I wonder if anyone else has this situation? I was diagnosed in Feb with lobular/ductal in the same breast. I have had 3 EC chemos and 2 Tax. I am due for an MRI on Monday to check the response to chemo.
Following EC, the oncologist remarked that chemo had achieved a 'modest response' (MRI) so it was decided to switch to TAX. My question is if the response is 'modest' does that mean the cancer is continuing to grow whilst on chemo? The lump/mass is 5cm.
Why do some peoples cancer disappear on chemo and others remain?

Thanks
WS
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