Triple negative secondaries/ recurrences

Thanks again guys for your wishes, and hair advice! I will look into scarves as already my scalp is tingling which I think means it’s ready to drop?

I’ve had a rough weekend, very sore all over though I think a lot of it from skin damage from the allergy. I’ve cut down on the morphine and upped the steroids so am slightly less itchy, tough though as the chemo/ avastin will stop me healing as well as I would.

Re avastin, Tina I am a little undecided whether I want to continue after what you said on the other thread! It wasn’t covered by my insurance limit, but they said they are making an exception - and granting me it for at least a year. God knows what my onc must have said to them! He seemed pretty keen coming in and discussing it with me on a sunday like that. Bit worried, maybe like you said, it is a last resort and my only hope? I am going to have to discuss the side effects more though, I’m worried about the possible stomach bleeding etc etc… Already a risk when on all the steroids I take for my autoimmune condition.

Hope you all had a better weekend!


Morning ladies,

Tina, I’ve sent you a reply on the other thread you started. Good luck for today, let us know how things go.

Scarefox, I’m so sorry you’re having such a s**t time. Have you spoken to chemo unit re your symptoms? (sorry if that’s a "sucking eggs) idea!). My hair started to come out after about 3 weeks from first chemo. It didn’t all fall out, but big patches did and I shaved it off in the end cos it was driving me mad! I don’t have any words of wisdom re Avistan, but hope you can discuss it with your onc asap.

Sarah, hope you are ok?

The weather in Essex was lovely yesterday, I didn’t really make the most of it though! It was just lovely seeing it through the window.

Thinking of you all and sending hugs for all appointments etc.,speak soon,
Sandra x

Hi Everyone, just to say I hope you are all feeling a bit better today and that the se’s wear off soon Scaryfox. I found that the first one was the worst and after that things improved greatly, so fingers crossed.

Tina, thinking of you today and hoping all will be well.

Take care everyone, have a great day. Lots of love, Dianne x x x

Hi Scaryfox

Re the Avastin side effects, when I went through all the possible se’s with my onc prior to staring Avastin, she made the point that most of the worst se’s were seen in people with bowel cancer, and she had seen only very minimal se’s in breast cancer patients so far, and only one patient of hers has had to stop taking it (a kidney problem).

I have also been told that Avastin is just starting to be used much earlier on - this is the case with me as my secondaries are very minimal so far, so I think you have to look at success rates in the light of that as well.

finty xx

Hi everyone
Due for a scan on Friday 15th. Getting rather anxious about it. Don’t think I can cope at the moment with it not working - it has to be working.

There are so many different chemo out there - I don’t understand how they choose rather than you can’t have that because you’ve had it already. In someways I have already shot myself in the foot as I had the NeoTango trial which consisted of four different drugs. The EC didn’t work and only had two cycles; the gemicidibine and paclitaxol I had for four cycles. Because I had taxol it limits the other taxol based ones - but then the onc said I would have docletaxol (?) so very confused as to future options - if it comes back!!!

Well, well a truly miserable - I think I need to go eat or shop.
Kelly x

Hi all,
Kelly, so sorry you are feeling miserable.I have everything crossed for you that your results are going to be positive news. How long will you have to wait for results?
How are you feeling today? It’s a nightmare trying to keep control of emotions, when deep down we are just scared,scared,scared.I got a relaxation dvd and have found it helps. The hardest part is making myself put it on, sit down & listen to it.
I asked chemo nurse if it’s possible to repeat chemos. He said there are some that have a maximum dose because of the effects on the rest of the body, but other than that info I don’t know how things are decided. Will you ask at your next appointment?
I hope you can find something to take your mind off things, I know, easier said than done!
Hi everyone else, how are you all?

Sandra x

Sandra x

Hi Sandra, Kelly and everyone,

In response to your question, Sandra, yes I’m fine thanks. Not having any treatment at the moment, thank goodness. Waiting for the results for rads from CT Scan happening in a few weeks. I’m trying hard to lose some weight after putting on 1 1/2 stone after 6 months of chemo. followed by generally stuffing my face! I found I’d reached the ridiculous weight of 15 stone 10 last week and thought it was time for action since I may be on more chemo (oral) come end of Nov. if scans aren’t positive. Sorry Kelly you are feeling so anxious - it’s hellish waiting for scans - I hope it goes OK on the 15th. I know it sounds silly and obvious but sometimes something like a good film can help you take your mind off things. At the time of my primary dx late 07, I spent about 2 weeks not eating or sleeping properly and watched the DVD of Love Actually day before going for op. I felt so much better after it. Daft advice, sorry. Beautiful Autumn weather here in Neath. Love and best wishes to you all,

Sarah x

Thanks Sandra and Sarah
Great to get replies - makes me feel better and not alone. I will get the results on Tuesday when I am due for my next appt with onc re: chemo next Thursday.

I am finding being at home and not working difficult. I don’t think I would be much use at work, but at least you are occupied. I am not a housework person and usually after walking the dogs I am tired anyway. Like you say, need to find something to distract - not sure what yet. Looking at meditation and head massage but I keep missing them - something gets in the way. Need to get into gear and do something.

Have great friends wanting to meet for coffee, but even that is emotionally exhausting - they have a ‘normal’ life, but mine is not. Even haven’t replied to one lady who wants to meet up because I can’t bear the thought of having nothing to talk about or interesting to talk about other than ‘my cancer’.

Anyway, enough moaning - time for bed I think. Speak to you all again soon.

Scareyfox - hope you are OK.

Love Kelly x

Hi all,
I have just started my first cycle of Capcitabine (second day completed). I think my first reaction when I was told that this was happening to someone else and not me. Anyway it is me and I suppose I must just get on with it. It is certainly good to know that I am not alone although I am obviously sorry that anyone has to go through this dreadful disease. My thoughts are with you all and I wish you all the best. My Onc has said that my prognosis is years rather than months although not very many years. He is obviously talking about what is available at the present time. He did however say that there is new drug in trial yet to be licensed which will be offered to Triple Negative Secondaries. Has anyone heard about this. Of course with the cutbacks even when it is licensed it is likely that it will not be available on the NHS. Love to all, Margaret

Just checking in to wish Kelly good luck for tomorrows scan!

I am stuck in hospital again, I not only had an allergic reaction to morphine but now also to my first taxol. My skin is burning and falling off and I look and feel disgusting, eyes all swelled up, so painful. I am hoping they can switch me to abraxane but may be too expensive… Don’t know what else I can do.

Hope everyone else ok x

Oh Scaryfox, I’m so sorry you are having such a bad time. The reaction sounds dreadful, hopefully they have got you more comfortable today. I didnt have any such reaction when I first had chemo and had a tax along with FEC so I cant offer any constructive help unfortunately. I kind of got the impression when I saw my onc yesterday and we spoke about very expensive drugs that it doesnt matter, the cancer drug fund is set up and there is money to spend before March, so whip your blazing guns out and stick to them if you can. I guess each area is different in the amounts they have to spend, but ours covers a huge area and she still said to me dont worry about cost. I dont need anything yet, I was asking about a new drug which I had read about on the site for triple negative secondaries which it said is as yet unlicensed and is likely to be very expensive. I dont know which trust you fall under but if you need a certain drug then you need it and if its the best option for you then there isnt any choice, expensive or not. Thinking of you and sending big hugs for you to feel better soon.

Debs xx

Hi Everyone, Scaryfox, so sorry to hear you are having such a bad time. This is just to let you know that I am thinking of you and sending you lots of love and hugs and all good wishes for a speedy recovery.

I hope everyone else is feeling well and that you all have a happy, peaceful and painfree weekend.

Loads of love to you all. Dianne xxxxxxxxxxxx

Hi all

Not sure why the posts I send keep going missing into cyberspace, its just done it again so here I go again!

Went for chemo yesterday and blood levels were 0.75 so had another test to see if they had come up, they had to 1,3 so all ok to go ahead. Wasnt feeling great as had a chat with Onc about the number of CT scans Im having and am a bit worried I might be making things worse. She agreed I have had a lot lately with blood clots and fluid on lungs etc but we should still push ahead with one planned for next month. I asked if there were alternatives but she said with lungs CTs are the best for getting the minute detail. She said I would only really realise the effects of so many Cts in 10-20 years and I wont be here then anyway. I was a bit taken aback even though I know its serious stuff now its in lungs and floating around god knows where else, but Im ever hopeful that with all the reserach and funding a treatment is just around the corner. Anyway she has just rung to day one of the blood tests came back late which showed liver function is high and she wants to get an ultrasound done quickly. This could be due to chemo, the fact im on antibiotics for a heavy chest infection or cancer. Needless to say Im worried to death now. Has anyone any advice or been in a similar situation?


Hi everyone

Hope you are feeling a bit better today scaryfox. What you are going through sounds awful. My thoughts are with you. I am making enquiries with a relative in the pharmacutical business about the new triple negative drug in trial at the present time and I will post what I find out. I agree completely that if there is a drug out there which will help money is no option. I was just a little concerned because of these new cuts that we keep hearing about!!. I am now on the fifth day of my first cycle of Capecitabine. So far not too bad but would I be right in saying that the effects are a build up and that I should not be too complacent. Love Margaret

Thanks Margaret!

Definitely let us know what you find out re the new drug. About capecitabine, I did 4 cycles of it, the main side effect was sore hands - very dry palms, and to a lesser degree feet. It was cumulative, but cleared up a couple of weeks after stopping the pills. It kept my tumours stable but no significant shrinkage so I switched chemo, but there are people on this site who’ve been on it for years without too many problems. Some people get tummy trouble but mine was ok.

Taxol on the other hand… I never ever want to touch the stuff again! As well as all the skin allergy, flaking, bleeding and itching, it feels as if someone is trying to yank out my hair by the roots! Obviously it’s all going to fall out soon, I am praying that when it does the pain will stop. I am so desperate to neck a handful of those morphine pills… But can’t as it’ll just be short term relief and make my skin even worse… Grrrr!


Hi everyone,
Scareyfox, I’m so sorry to hear about your allergic reactions, they sound awful,I hope they’ve managed to make you more comfortable…do let us know how you are when you can.Sending all best wishes to you.

Kelly, Scans done? Now it’s the worst part,waiting for results. Funny you talking about friends, I haven’t seen mine since my latest recurrence and I couldn’t be bothered, but this week I invited them round for a coffee…and I really enjoyed it. I found that being in my own home was better than a coffee shop and not as tiring.

Margaret, I think we’ll all be very interested in what you mange to find out from your relative. Sorry, don’t know about Capecitabine, but pleased you are ok so far, long may it continue!

Debs, Sorry to read your post re liver function, have you got your ultasound app yet? I really don’t have any advice to offer, sorry! I do know, from some of the other threads, that drinking lots and lots before & after chemo helps the liver flush the drugs out and that the liver can be greatly affected by chemo. Please, please let that be the case for you.Did you actually have your chemo?

Sarah, hope you continue to feel well.

Thinking of you all, try and have a decent weekend…I know, easier said than done!

Sandra x

Hi Scarefox,
We were posting at the same time! Are you still in hospital?

Sandra x

Tina, I’ve just read your post on other thread re your scan…great news!!! So pleased you have a positive to focus on.

Sandra x

Hi ladies
sorry I haven’t been around much this week it’s been very hectic. I did post last night on this thread along with a few others but I lost it in cyberspace + I was too tired to retype as it was a long one! Hate it when that happens!!
Scaryfox I can’t believe how your suffering at the mo it’s just not fair. I really hope you feel better soon. Are u still in hospital? If u have reacted to taxol does that mean ur likely to be allergic to all taxane chemos? Hope there is another chemo option that suits you + works wonders. Have u discussed parp inhibitors? U take care x
margaret I am very interested in this new drug?? Is it parp inhibitors or something else? Please do keep us posted . Good luck with the capcetabine x
Kelly how are things with you? Have you had your scans to see if the carbo is working? Hope it has + ur not being kept waiting for results. Lets no how you are x
I am posting this half of my message now before it disappears + I’ll carry on on a new post!

Right part 2…!
Sandra how are u doing? Thanks for your congrats :slight_smile: I am delghted with my scan results I did mention it on my post last night that vanished! Any plans for the weekend? Thanks for all your support on here x
debs sorry to hear about your new worries. Really hope the liver function is down to something innocent + they don’t leave you fretting for weeks? Any sign of an ultrasound/ scan appointment? Push your bcn if not. Best of luck x
Sarah how are you? When are u due to start rads? Have you had your ct results yet? I had another scan this week + thankfully it was clear- no changes since Augusts scan :slight_smile: Im starting rads next week hopefully. Hope your well x
Dianne- thanks for all your supportive posts. You are lovely :). Hope you are feeling well + have a great weekend x
hello to anyone I’ve missed too!
I’m feeling a bit better following my ct scan on Monday. It’s only short term reassurance but that’ll do for me at tge mo- gota grab what we can haven’t we!! I’ve been in + out all week with scans, results, various rads planning sessions etc but I’m glad I’m nearer to treatment. Hoping to start at the end of next week- it’s my bday Friday so getting started with rads will be a good birthday pressie. God I’m wasily pleased these days :wink: !
Right I’m submitting this now before I lose it. Love to you all
tina xx