Advice Please - Treatment Options

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Hi Everyone. Me again, I feel like I am posting too much but need some help once again!!

I am sorry to be asking when everyone is busy trying to forget about cancer for a few days but I desperately need some advice to arm myself for a talk with my oncologist.

History: Dx March 07. Mast. Tumour 3.5mm close to chest wall. Ax node removal, 13 nodes / 9 affected. 4 X FEC & 4 X Taxotere. 20 rads. Treatment finished in Nov 07. Recurrance Oct 08, further node removal (lower down, closer to primary site) 6 Carboplatins planned, 2 done, next due on Tues 30th. Originally told ‘treatable’ but within 2 weeks found further spread and now have clavical node involvement, plus some others between there and original site. They have said there is now no hope of getting it into remission and all they can try for is hold. Also it’s triple negative. Treatment is being provided by a private clinic via Bupa health insurance.

My problem is I don’t feel like the treatments I am getting are enough, it probably is and I am being paranoid but hey… it’s my life! I found out about the spread from the BCN when I went for my 2nd treatment, and in all ways the nurses have been really great. I haven’t seen my onc since my getting the results of the orginal post op (clear) scan and before the first chemo some 7 weeks ago.

I do understand that my options are limited, being TN, but I would love to know what others have been treated with and what options I have for when I meet up with my onc on Tuesday.

I don’t understand why they cannot operate to remove the large and clearly cancerous clavical lymph node that is pressing on my throat and causing discomfort constantly, or could they not treat them with rads, as they are outside of the original rad area. The carboplatin isn’t working and the tumour I can clearly see in my neck has grown, so they are talking of swapping me to Taxol with either carb or gemcitabine, not sure which, or adding gemcitabine to the carb.

I am absolutely terrified that having had all 3 types of chemo since the primary dx none have / are working. So, anyone with any suggestions of what treatment options there might be so I can ask the right questions, I would be most grateful. I do appreciate it is Christmas Eve, and most people are out enjoying the season and won’t be checking in here (can’t say I blame 'em) but if anyone can help it would really be appreciated.

Happy Christmas to everyone, I hope it is filled with joy and love for all of you.

Nikki

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Hey Nikki

I’m sorry to hear about your progression. I don’t think that doctors appreciate what it is like to hear those words and to have to keep on going when treatment options aren’t holding the cancer at bay.

There are many triple neg women on these boards with experience of a variety of treatment options and I’m sure they will drop you a line when shopping is finished and presents have been wrapped! However, I would suggest that if you don’t feel that your oncs are doing enough you could always seek a second opinion. Another consultant may suggest a different treatment plan or simply confirm that your onc is currently choosing the best chemos suited to YOUR condition. Perhaps you should ask your onc if they can operate or offer radiotherapy. There may be a logical reason as to why this hasn’t been suggested. I really do feel that unless we go armed with a list of questions we want answered, many medics won’t offer the information freely.

I was dx with breast, liver and lungs in one hit and, although I had a good reduction from first line of chemo, my lung mets started to grow and multiply during the the last two courses (Taxotere & Carboplatin) and so now I am on Capecitabine along with herceptin. I will find out next week whether it is having an effect (big gulp). I am double neg so for the moment the plan is to target HER2 and select chemos which have good results alongside Herceptin. I always ask my onc what the Plan B is should the chemo not work and why they choose one chemo drug over another. It really helps me if I understand their rationale as I can see how they are tailoring my treatment to suit ME in the light of how my cancer has manifested itself and behaves. Some chemo choices are also made depending on the physical demands of the drugs - e.g. effects on heart etc, so some harder chemo options are kept up their sleeves until they have explored other avenues.

Nikki, I hope you get some suggestions from triple neggers to run past your onc. I always find I feel calmer and more in control before onc appointments when I’m armed and dangerous with questions. This disease robs you of control of your body, so excercising control of your mind is the one thing we can do!

I’m off to hunt for some mince pies now…I hope you have a lovely time with your family.
xxx

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Hi Nikki

It sounds like you’re having a pretty tough time and are understandably worried at the moment. If you think it might help to talk things through please remember the helpline is there for you to use. Here you are able to share your fears and concerns with one of our trained members of staff, who will be happy to offer you a listening ear as well as support and information. The number to call is free phone 0808 800 6000 and the following gives you information on when the lines are open over Christmas.

Christmas Eve: 9am - 2pm
Christmas Day: Closed
Boxing Day: Closed
December 27th: Open as usual (9am,-2pm)
New Years Eve: 9am -2pm
New Year’s Day: Closed

I hope you find this helpful.

Best wishes
Sam (BCC Facilitator)

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Hi Nikki

Really sorry cant help you as such, but wanted to let you know that thinking about you and hope that others that can help are around to give some advice and help. Hope you get it all sorted out soon.

Take care and sending lots of love and cuddles
Dawn
xxx

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Hi Nikki,
Don’t ever worry about posting “too much” . This is what this site is all about and as much as we may try to escape our situation, especially at this time of year when it feels like everyone else is celebrating I think we can all appreciate on this site how difficult that can be as the cancer always seems to be with us.
We’re all different but I wanted to let you know that I was diagnosed with nodules in both lungs,4 badly affected lymph nodes in my upper clavicle area and one in my right hilum of my lung back in February following primary diagnosis back in Dec 02. I had 8 weeks of taxol and Avastin (I have BUPA through my ex’s work)from March-May and the scan in May showed that the 4 strongly affected lymph nodes had completely disappeared and one of the nodules in my lungs had shrunk. I had another 6 weeks of the same regime - the next scan showed the nodules remaining but not showing any cancerous activity - I had another 8 weeks of the same from Sep-Nov and the latest PET scan at the end of Nov showed that the nodules have now disappeared and there is currently no evidence of disease. My onc. still wants me to continue on this regime until March when I’ll have been on the Avastin a year as in the trial but obviously this regmie has so far worked for me although I know it could come back at any time. Obviously we’re all different but I wanted to give you my story as I know my onc’ was very surprised by how quickly the taxol chemo with Avastin worked for me and you mentioned taxol.
I do hope things go well for you and that you are able to feel more “confident” about the treatment you’re receiving. It’s so hard to know what’s right. I had reservations about being kept on the chemo for so long but for me the scans speak for themselves and so I feel better for knowing that.
I was originally diagnosed just before Christmas 6 years ago so know what the awful worry can be like over the “festive period”
Thinking of you
Anne xx

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Hi Nikki
I am triple Neg - was first DX in March 08 tumour was 0.4cm but had already spread to the lymph nodes in the mammary chain and the clavicle - felt very cheated as I had no real signs and symtoms - just picked up in a routine check. I managed to pick the card that said do not pass go do not collect £200 at the first throw of the dice. they weren’t able to offer me a “curative” programme only what they consider to be a “contain and control” programme - sounds more like a US army initiative than something you would expect from an Onc. My understanding is that they can some times remove nodes if they are causing too much upset but they prefer not to. I think its how the lymphatic system works. As far as treatment is concerned the surgeon wouldn’t touch me with a barge pole (which those people who don’t know the full extent of my DX keep telling me how lucky I am - really how I just love living with the thought its still inside me and I can’t see what is doing!!). Anyway my Onc was lovely we started on 6 X AC chemo which was tolerable - significant reductions after first three but it started growing after the next three but was still smaller than when first DX. I then had 29 whole breast rads - was scheduled for 30 but my skin on my collarbone didn’t hold up. that finished on October and I go back for my scan in January and results on how well its worked in February (would be earlier but I am in Florida - this time I got them to work round me as we had to cancel in Oct due to Rads). The Onc and Radio virtually threw everything but the kitchen sink at me to try and put it to sleep. Feel pretty good at the moment and trying not to panic everytime I get a twinge - which I am at the moment which is down to the rads according to the BCN.
From what you have said they are trying the various options available to us TN ladies. It could well be worth asking about further Rads if the clavicle wasn’t zapped before.
There are also various trials that you might want to consider - but you need to get them to explain the different families of chemo to check which ones you have tried and which ones would be worth trying. I know JaneRA is very good and describing them - she may well add to this - I am still learning more and more at each step - its a hell of a journey.
One thing I have learnt is that whilst the DX of “Contain and Control” may seem like the end - its just a slightly different path with bridges for you to cross along the way. Enjoy every day and worry about tomorrows when they get here.
Here’s wishing you a very Happy Xmas
Regards
Helen

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Hi Nikki

I can imagine how you are feeling because I too as you know am triple negative and running out of treatment options. Sadly the reality is that there are few treatment options for those of us with metastatic breast cancer who are triple negative.

When I was diagnosed with my regional recurrence I was told surgery was not possible because I had so many separate sites of cancer in chest wall and neck…some wrapped round muscle, some in nodes, that it just wouldn’be effective. I was told I had already had radiotherapy to the sites of my recurrence and not been possible to have in same areas again. (this view has been confirmed by to further hopsitals including Marsden so I believe them.) I was originally rediagnosed in east London and then swapped treatment to Winchester where I now live. I took a second opinion at Marsden in the summer.

So far my treatment has been: 6 AC cheno for primary bc neo adjuvant. 4 cycles taxoterer post surgery. Then 2 and a half years NED before recurrence. Then 6 cycles xeloda and vinorilbine. (lumps shrunk) Stayed on maintenance xeloda for 3 further cycles…cancer grew. 6 cycles of gemzar and carboplatin kept cancer stable. 4 months chemo break…cancer grew. 8 weekly taxol…cancer progressed including new 4cm node in ‘other’ armpit…so much for taxol… Currently back on vinorilbine, had 1 cycle…this is last mainstream option. (I culd ‘try’ pegylated doxuribycin but AC didn’t work in first place so not keen as this is a variant.) Man at Marsden did not recommend avastin and i am happy with this as trial evidence poor. Marsden has offered me opportunity to discuss Phase 1 trials of PARP inhibitor and will probably have discussion when/if vinorilbine fails.

Like you the tumours in my neck impact on my helath now. My voice is compromised; I have very bad lymphoedema and multiple capillary marks on my arm, chest wall, neck. Also had clot in left jugular vein…on warfarin.

At one level I am angry and scared. at another just philsophical…cause I’m not chasing treatments which patently aren’t there. In US ther’e a chemo called ixempera which trip neg women get but not very good results. There’s also a drug called sutent which some trip negs have there (and on trial here I think.)

In the scheme of things my own cnacer has grown much slower than most recurent trip negs usually do…and probaly slower than yours Nikki…whcih has returend so quickly…so I take a bit of comfrot from that, but that doesn’t help0 you.

If you are unhappy with your current medical team then do consider a second opinion…they are good at Marsden…though mabe they are just better at putting bad news nicely and hopefully rather than coming up with revolutionary tretament…the problem is there isn’t any revolutionary treatment…

sorry if this sounds glum…but the news for trip negs is glum if we get recurrence.

Jane x

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Nikki - sorry to hear your news and how quickly your secondaries have appeared. I can only sympathise and empathise with you. I’m her2+++ but despite continuing with herceptin, all my secondaries have appeared on that and am now on last chemo option unless I can persuade my onc to retry vineralbine - my onc knows JaneRA’s onc so will have to hope that helps me. Is there any chemo that has worked for you - sorry to late at night to get my brain to register which ones you’ve had?
It’s worth asking for a second opinion and see if there are any trials open to you - I suppose it also depends what the trial involves and for me with smallish children, I don’t see the point of trying something that only has a small chance of success, if I’m stuck miles away from my family and friends as I want to spend time with them.
I feel so sorry for you - these neck/clavicle spread are really cruel and I don’t know how you cope.
Wish I could suggest something for you to ask but trials are the only option I can think of.
Kate

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Hi Ripley, Sam, Dawn, Anne, Helen, Jane and Kate.

Thank you all SO SO much for replying to me, especially over the Christmas period. I really do appreciate all of your inputs and support. I hope you each had as good a Christmas as possible under these circumstances, I must say mine was wonderful and I enjoyed it very much.

I think I am probably just panicking about what is to come and eeking out life for as long as possible to be honest, and I am one of those people who just needs to know as much as I can know about something before I feel comfortable about it. In the scheme of things, this is just about the most important thing I have ever needed to know really.

You have all given me some really useful info, I will write down my questions now and feel like I can ask ones that make sense. I am not sure if I am ready to go to trials yet, I am pretty sure there are still some standard options we can go through to see if they work, so now I am ‘armed and dangerous’ :slight_smile: when I go see my onc on Tuesday.

I still don’t feel much different to before this all started again, other than the increasing pressure on my throat, it’s so hard to come to terms with the cold hard fact that I am going to die an awful lot sooner than I had hoped. But when I start to feel ill, I have no doubt that reality will be much clearer to me, I suspect my current ability to get on with it will evaporate and I will fall into a pretty deep hole for a while. I will cross that particular bridge when I come to it though, for now, I will just live each day living and hope one of the treatments I have coming will give me good results, so I can have more time.

Love to each of you amazing women

Nikki

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Nikki,
I’m glad you enjoyed Christmas. I did too despite difficult circumstances. You sound incredibly in control in a situation so hard to control. Your last sentence makes so much sense. going through what we have to and the decisions we have to face it can sometimes feel so overwhelming especially if we try to look too far ahead. I have times when I just fall apart - but to tell the truth I’ve found the break-up of my marriage much harder to come to terms with than my premature death that I will have to face. Then there are other times when I am so grateful for the positives in my life and I’ve just past my 6th anniversary of my original diagnosis and feel I’m into borrowed time and feel grateful for it and keen to enjoy and make the most of every moment.

I, too feel better if I know all the possibles for treatment rather than just leaving it up to the specialists to decide entirely. It’s our life after all.
You are amazing too and do let us know how you get on on Tuesday.

Anne x

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Hi Anne, I am sorry you had to go through a marriage breakup, been there, done that also, but to be honest I felt much better within a shortish space of time as the stress of being with him was far far worse than the pain of walking away.

I can understand why you say that was harder then coming to terms with dyeing early, in my case it still feels somewhat unreal, I cannot yet imagine a world without me in it, time will tell how I adjust to the concept I guess.

It is our life isn’t it, had a bit of a falling out with OH over a decision I have just made because this is my life and I will do what I want with it, will explain that in another update post.

You take care Anne, and keep making the most of things, it’s all we can do really.

Very best wishes

Nikki

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Thanks to everyone who posted, I had my meeting with onc yesterday, thanks to your advice I wrote my questions down this time and I do feel a little better for getting through them. I was a wee bit worried about asking the harder one as my OH was with me, think I will save the more painful aspects until I can see the Onc. alone.

So, chemo is now 2 weeks late becouse of a combo of blood problems and Christmas / NY, will be three weeks by next Wednesday when it has been decided I will start on a new regime of Taxol and Gemcitabine, with both given on day 1, followed by gemcitabine on day 8. They haven’t said how long this will continue for, but I guess we need to see a response before making that decision. They are going to boost me with nuelasta again, as my bloods go from red count down to white count down and just wont stabalise.

The change in timings has totally and utterly screwed up all the plans I had for the next 4 months that were carefully worked around chemos. So I am going to have the 1st cycle, see how it affects me and then I may decide to postpone the 2nd dose for 2 weeks, which will mean I can do all the things that I wanted to as they will fall inbetween cycles. The OH was not happy, saying I am risking my health and it could allow more progression, I explained to him that quite frankly I would rather sacrifice a month or two at the end when I am not capable of so many things, than what we had planned for the coming few months that will make me incredibly happy. There have been frequent delays to my chemo’s due to bloods, so I don’t feel I am doing any damage by doing this, maybe I am wrong. I will have had the first dose which will hopefully do it’s work (please please please) and hold it back enough for those extra 2 weeks.

Rads is an option, but Onc explained that they want to try drugs first, so that if needed we still can use rads in the future when it’s causing more problems in that area, I can see the sense in that. I just need to understand why in all these things. She is also going to see if there are any trails that may suit me, just in case, but not sure if that’s the right thing just yet, can always make that decision if / when I have too.

So, can honestly say I am utterly terrified of the forthcoming treatment. I have been so ‘well’ on carboplatin, but it just doesn’t work for me. Had dreadful experience with taxotere last year, and while I know taxol is different I am still very scared of the pain and side effects, like severe reduction in mobility, that I have suffered with previously. I guess on the positive, it is highly unlikely to be any worse than I imagine, so can only be easier!!!

Thanks everyone, and I hope you each have as a good a New Years Eve as possible, silver lining is that the continues delay in treatment means I can drink and taste and enjoy a glass or three of wine tonight, although the downside is I will probably sleep through midnight!!

Best wishes
Nikki

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Hi Nikki,

like you I hope to start the tax/gem combination. That is, if my onc thinks my body will be able to handle it after I had bloodtests on the 5th. For me it sounds as if it might be the last one they try. Had FEC, Taxotere, Xeloda and Navelbine up til now and only the FEC worked for a little while. For me the Taxotere was the worst too so I am worried about taxol too. I just hope this one will work for a while so I get some more time with my kids. My onc scared me in saying that the chemo might actually shorten my life, but seeing amazing women like Kate and Debs, who have had as many as me or more and still hang on I think I will take my chances. Maybe we can compare side effects etc once we started?

love Maroke

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Hi Nikki

Sounds like you had as productive meeting as possible with your onc. Really sympathise with your chemo dates changing and the impact that has on planning. I have had to change plans so many times because of bloods being down etc…and it always uspet me, even if it only involves changing a date with friends.

I found gemcitibine hard going…had it in combination with carboplatin rathet than taxol and only managed 2 of the 6 Day 8s. Bloods too low for one, and then I actually decided to drop the gemzar myself as the combo was making me feel so permanently exhausted. The combo of carbo and gemzar kept my tumours stable while i wa son it but they grew again as soon as I was off it. I had 8 weekly taxols before that too was badndoned (tumours progressing) but the side effects weren’t actually too bad. Anyway hope taxol and gem works better for you.

Would love to know of any trials your onc suggests…man at Marsden tlod me PARP inhibitor trials main option (Phase 1)

very best wishes

Jane

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Hi Maroke, so sorry you feel it may be the last try for you, maybe there is something they can offer, as, as you say, there are woman on here who have made an amazing job of sticking around and beating the odds, and they also still help others which is incredible.

So, I am really hoping that the tax/gem works for us both and we get good response to it. Would be more than happy to share side effects and progress with you, I do believe it helps to know we’re not alone in going through all this.

I think mine will start on the 7th, assuming my bloods are ok on the 6th, you may be a day ahead of me it seems. I remember Taxotere was like clockwork, was fine fine fine until 48 hours after and then BANG! pain from hell, it also got progressively harder to recover from. I don’t want to stop work, I love my job and I am also scared I will lose it because of all this. It’s all such a worry.

My onc feels that this wont be so bad for me as the previous experience, I am hoping so too! Fingers crossed it’s easier than Taxotere for us both.

{{{{{hugs}}}}}

Nikki

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Hi Jane, exactly, it’s just so frustrating isn’t it! I will see how this combo treats me and just do what I can, but there are 4 events over the next 4 months I am bl***** determined to do! Whats the point in struggling through all this if I can’t do the things that mean so much to me huh. Besides, I am a contrary madam who likes to get her own way, can’t see me changing that anytime soon :slight_smile:

I am hoping the fact that I am at the beginning of all this, ie, only had 2 carboplatins that have been relatively gentle with me, means that I will be able to take this regime on and be relatively ok. Only time will tell on that score but still, needs must. I find it constantly surprising how very differently people seem to react to the same drug regimes, it works well for one and hardly at all for another, our bodies are so complicated aren’t they.

I mentioned to my Onc about the Marsden trail, she is going to ask about it, will see what she comes back with and let you know anything I find out ok.

Take care Jane, hope you can enjoy New Years tonight, I am going to try and stay awake!!! May just wake up randomly and shout hootanny though :slight_smile:

Nikki

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Hi Nikki,
I find taxol really hard but the results I had were more than I could have wished for, I have had 6 this time round and I am due my scan on Monday so fingers crossed it is still holding my liver tumours back and I pray it has done some good on my omental infiltration! Still not got my head around that one I call it ‘mental phil’ but I will post next week and let you all know. Make sure you drink plenty of water I find it has really helped me, 2 days after tax I feel very tired so I just give in to it. I am really amazed at the ladies who are still working I think they are incredible. With luck you will find it easier than me. The results are what count so fingers crossed you have good ones.
Have a wonderful new year, we are going to a veggie restaurant down the road will toast all the ladies on the forum.

Love Debsxxx

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Hi Nikki

Glad that you had a wonderful Christmas and had an informative meeting with your onc.

I just remembered something thay may be worth exploring…my friend’s father-in-law who has osophageal (sp?) cancer has been having laser therapy every 3 or so months at UCH to zap the tumour when it gets bigger and starts giving him problems swallowing etc. Think his onc is called Prof Tobias or something like that…

Good luck with your chemo. I hope that the side effects are minimal - you never know, we are all so different - and that it can keep you stable.

In the meantime, enjoy some good food and wine tonight!
xxx