I stopped active treatment for my triple negative regional recurrence in March. This coincided with my oncologist retiring and a couple of days ago I saw her successor: …a really young man, all keen and up to the minute on research, and very nice too. I got an hour and a quarter with him (guilt guilt…private consultation!).
Basically he agrees its pretty pointless to try or retry any more chemos. All that is left is the old one MMM but he thinks it highly unlikely to do anything. The only things to try would be ‘novel agents’ of which he mentioned sutent…but trial evidence not brilliant on it…let alone the fact its not NICE approved…indeed a couple of days ago Ffiser (sp) stopped a trial of sutent for breast cancer as results so poor. Next…its Phase 1 trials…there are several PARP inhibitor trials at Marsden though he’s not sure I will meet the criteria for any of them having had so much chemo. Anyway I have decided to go for a conversation about trials with SJ (brilliant guy at Marsden who I saw last year). I would need to be heavily persuaded to do a Phase 1 trial but…
Onc talked about how regional recurrences particulary in triple negatives are very very hard to treat, and its not unusual for chemos to have very little impact (oh how easily and wrongly it is said that triple negatives respond well to chemo…it depends). But he said he has known similar cases to mine where spread to major organs is very slow, though the impact of the regional stuff can be nasty…and can kill (usually though its the major organ spread that kills).
I actually came away feeling quite cheered…my decision not to pursue treatment still feels the right one for me…and my hope is in hoping that the cancer continues to be much much slower growing than would usually be the case with most triple negatives. And I will have the talk at the Marsden…though at this stage don’t think I’ll do a Phase 1.
Oh…and he thinks the damage at the bottom of my left lung (queried on several CTs) is from nodes outside the lung pressing on the entrance to the lung. My left lobe may have collapsed…which explains breathlessness. He emphasisied this not lungs mets but nodal disease.
I’m having another CT and an MRI soon as poss. MRI is to look in detail at my neck, shoulder area to confirm or not whether I can have more rads.
I have written before about the strange lonely place it is when treatments are all used up and how you have to reframe hope. I do recognise that in the scheme of things I have been ‘lucky’ to have lasted this long without major organ spread.
But there is still such a lack of effective treatment for triple negative breast cancer…would that the research going on now did really come up with something new.
Jane
Hi Jane,
really pleased that you have met your new onc and that first impressions were good. I think it is really important that we feel some sort of connection with those we are dealing with. Plus fresh face fresh mind and all that.
As you know I am not triple neg, but like all the other types of bc I have a great deal of interest them the treatment and responses.
Strange isn’t it how ‘hope’ and ‘lucky’ take on different meanings when we are in the bc shoes!
I hope you are feeling better, energy level wise. It seems to be taking me ages to get my strength back and I too have the breathlessness. I think the responsibility for that could be the removal of the hickman lines or avastin. I see my onc on Tuesday so with luck with find out then.
Keep traveling and enjoy this lovely weather.
Love Debsxxx
Hi Jane
Glad to hear you had a positive encounter with your new onc, who seems to be simultaneously on the ball and on the same wavelength as you.
But why the guilt at a private consultation? (Did you rob a bank to pay for it?) If it’s your own money, honestly come by, do go for it and spend it as you please without any pangs of conscience!
Take care - hope the Marsden can come up with something that both you and they feel would help.
X
S
Hi Jane,
I am pleased too that you had a long consult with your new Oncologist. It sounds like it did you the power of good to be able to have a good long constructive chat about your choices and whats medically available or not available to you.
Best wishes
Tess
Hi Jane
It was nice to hear an update from you. I was wondering how things have gone since March but didn’t want to wite a ‘fishing’ post as I have noticed how you feel about them! As the other ladies have said it sounds like meeting your new oncologist has given positive food for thought and it was good you had the time to talk with him for so long. I hope everything with your BC continues to be as slow as possible without further chemo or trials involved, for a long time yet. Enjoy the ‘gormless’ dining that I am sure you are making the most of.
Nicky x
Hi Jane
I am really pleased that you the new onc is up to scratch and you can get a long with him. Its great when you can have a bit more time to discuss things ( I started off having private treatment until the insurance company stopped paying).
I am also glad that you still feel your decision to stop the chemo was the right one as that must have been a very hard decision to make.
The lungs are strange things as my onc keeps telling me I have a similar problem with the bottom of my lung which apparently isn’t mets but lymphangitis and sometimes they say it is an infection I don’t think the ct scans really tell them very much.
It would be really great if something new came along (very soon)
Caroline
Jane,
Very glad to read about your new oncologist, even though, like Policemen, they seem to get younger and younger. At least the Community Support Officers have grey hairs!
Glad that you are still comfortable with your decision about treatment, there must always be a nagging doubt I suppose but you have grasped the nettle, fully informed and in control.
Wishing you a long and worthwhile association with this young man and hope that he learns a lot from you.
Best wishes
D
Hi Jane
I just wanted to say how pleased I am that you like your new Onc and can get along with him. As from one of your previous posts, you did sound a little worried when your old onc retired.
Glad to that your decision to stop treatment was the right one for you. Must be quite a hard thing to decide, as to the pros and cons of benefits of continuing.
Wishing you a happy summer, and hope your weekend is going well. Lets hope the sun returns soon.
Love
Dawn
xx
Hi Jane
Glad to hear that you had a productive meeting and you must feel reassured that you have confidence in your new oncologist.
Love Kathryn
Hi Jane
Reading your post has given me confidence (a little more!) as my onc is retiring end of july and then they have a LOCUM!!! in for 6 months befor the new one starts in dec jan time, i am so un-nerved by the switch over but it maybe that we get a super-dooper newly uptodate trained locum and then onc so i suppose it will be ok, just my onc has been with me for 6 years so knows every step but a change may be good.
i too have seen SJ at the marsden and he is amazing seen him 3 times now, over the years, and he is fantastic at explaining everythin and is very calm and talks to you as if you have years ahead of you which is so reassuring.
anwyay, glad you had a good appointment with your new onc. xx
Hi Jane hope you dont mind my answering here even though I am still primary.Any info on post primary treatment of triple neg [or lack of it] is of great interest to me for obvious reasons.I too am glad that you are able to work with your new onc and that you are still seeing SJ occasionally.Its good that the spread is still not into major organs-long may it continue.I often think of you as I am now 2yrs and 8 mnths post dx and 2 years on from end of treatment.I dont think I will ever in my life feel totally secure about bc and I am following any info available about research into tn bc.
Good Luck
Love Valx
Hi Jane, thank you for posting your update, it is appreciate by those of us in a similar situation (selfish of me I know!)
Hope the things you explore can give you some help, and if they can’t I hope you can continue to bring your sense of humour and amazing control over what is happening to you into play.
My thoughts are with you as always
Nikki
Hi Jane, thanks for your update. Actually I have read the results of a big trial with PPAR inhibitors and carboplatinum for triple negative, and they seemed to be encouraging. I don’t remember the details but I can find out.
I am also quite fed up with this b…s…t that TN responds very well to chemo. This is what my first oncologist told me when I was diagnosed with a tiny primary in 2005. Recently they told me instead that TN responds very badly to chemo, so either things have changed, or they know better now, that makes me think that not everything is known of course, which is good in a way.
I don’t know if you read my post about my change from TN(8% ER+)in the primary tumor, to ER+(60%), in my lung met (recent biopsy).
a breast cancer mass (I mean a primary tumor) can be very heterogenous, and at the moment there are a few studies that underline these type of changes from the primary mass to the metastatic ones, and maybe it is worth considering it, for exploring more therapeutic options.
If you have the chance to talk about it with your oncologist, I would be interested to know what he thinks.
I wish you a great summer
xx
sabrina
Thanks Sabrina
Would be interested in more info. on the carbo/PARP trial.
I had one of my regional lumps biopsied and it was triple negative. Apparently the pathology of my particular brand of triple negative is very distinctive.
My summer of fun isn’t quite turing out as planned. I’ve been in really bad pain with regional tumours pressing on nerves, and persistent tiredness which may be pain medication sie effects and/or damage of the cancer (e.g. my left lower lung lobe has collapsed and that has impact on breathing, blood circulation etc.)
Jane
Jane, I just found this, it is not the article I was reading the other day (can’t find it now, but I will keep looking for it) but it refers to the same study
oncolink.com/resources/article.cfm?c=3&s=8&ss=23&Year=2009&Month=06&id=16271
reading this web site today, I am just thinking of a guy I saw in the hospital some years ago, where I was taking my mum for chemo. He was there with his mum and had a T shirt saying “Cancer sucks”, much better than the pink ribbon we see too often. I just googled the words and I find the web page!
cancersucks.com/
where they have T shirts like that! I think I will get one of those!
sabrina
Thanks Sabrina
I have seen the Reuters article about PARP inhibitor trial…in fact it promped my starting a thread called Significant improvement or a load of hype…
Jane x
but of course you know Jane, that the median does not represent the totality of the cases. If a therapy improves the median survival three months, this does not mean that everybody will have three extra months. some will have nothing, and some will have many months or years. There is always the tail in the curve, and that’s what we are aiming for…
sab
Hi Sabrina
Yes I understand ( I think!) what median means and would recommend everyone reads Stephen Jay Gould The Median is not the message. An uplifting message about how statistics can be misunderstood.
But as far as the results I am quoting are concerned the figures are for already dead people. No one in this particular trial has survived for many years…
My general point is that treatments for cancer are just not good enough. Focus should be on cure, cure and more cure. Those of us with cancer who are going to die of cancer need to say loud and clearr that cancer treatment is simply not good enough. We are dying for that cure. We are not impressed nor grateful for measly extra months of life.
Jane
Jane
I feel like I’m sneaking in on your thread but hope you don’t mind (I’m neither triple neg nor have secondary spread/regional recurrence like yours as far as I know). I so enjoy reading your comments on this site and just want to wish you well.
I’m really pleased you got on well with your new oncologist but also recognise and value your comments about the lack of treatments. I’m hopefully still in primary phase but believe that because my cancer is hormone positive I probably have various options ahead. All well and good. But to know that there are women out there whose cancer is triple negative and without so many treatment choices is so diabolically awful. A lot of emphasis is placed on women like me because I guess we’re easier … but no! That’s not good enough!
I wish I knew more. I wish I could do more. I can’t.
Best wishes
Gill