Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
181

Hi everyone,

Welcome to the thread Jo,I think we’re all guilty of sporadic posts, sometimes I just haven’t had the energy to post, but I do try and read what’s going on with the ladies on this thread.

Sarah, thanks for your empathy. I’m feeling a little bit stronger and am trying to eat more. One problem is that I can’t swallow very well (food sticks in my throat)meaning eating much of anything proves hard work. I’ve seen dietician and have been given a mountain of supplements!!At the mo my stomach is playing up and taking them is a bit hit and miss, but I’ll persevere. I see you had FEC in 08,how long was it before you had to have Taxol? I had Taxotere March 10, which initially worked very well, unfortunately the effects didn’t last and I started Carboplatin in Aug 10,but this didn’t work at all and I was taken off it after 3 treatments. This is when the pleural fluid started in earnest and as I said I don’t feel up to anymore chemo yet…but worry that I should be having it!

Tina, I’ve caught up with what can only be described as your nightmare, instead of dream, holiday and I’m so sorry you had to go through it. I hope you’re feeling reasonable after your chemo, let us know.

To anyone else from this thread, hope you are bearing up!!

Sandra xx

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Hi Sandra and all! (And Welcome to Jo!)

So pleased to see you posting again Sandra, you have had a terrible time - God, this is SO unfair…I didn’t realise you had had so many chemos recently - no wonder you don’t want to go through all that again in a hurry! I’m glad you are eating a bit more and feeling a bit better - obviously, you know and the dietician would have told you about soft food - soups, yogurts, ice-cream, jelly, fruit etc - (so sorry if I’m stating the obvious!) - being better. I make batches of soups sometimes if I’m slimming or got the energy - not very often - I’m not an organised type!- and you can freeze the extras. Chicken noodle soup and veg. is lovely and very nourishing and I also like sweet pot. butternut squash and lentil which is yummy too and a nice bright colour! I’ll send you the recipes if you like… Sorry for rabbiting on about soup!!! Btw, in answer you your question, I had taxol from Feb. to Aug. last year - 2 years after FEC and it worked moderately well.

Love to all on here, hope the chemo. is going OK, Tina,

Sarah xxx

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Hi Sarah,

I’d love the soup recipes please! I’ve been looking for a nice chicken soup as I know it’s really nourishing, I remember someone saying it’s got everything needed in it.

Thanks, Sandra x

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Hi Ladies
Great to see activity on our thread :slight_smile:

Sandra Im so sorry you are still struggling and having a sh*tty time its so unfair. Really hope you can build yourself up and face chemo very soon. What chemo is planned for you next? Sounds like you have had lots already so can understand why you cant face it at the mo especially if so unwell :frowning: I read on our last post that carboplain didnt work for you- that is what I am on at the mo and my gut instinct is that its not working. Ealy days I know but still. It tends to have good results with triple negs but its usually given in combination but Im having it on its own, hence my worries. Im anxiously watching my hair as Ive been warned it might thin or worse still, go altogether but Im hoping it doesnt. I’ll be scanned after chemo 3- chemo 2 is on wednesday. Anyway, get eating that soup and build up your strength. Take care xx

Sarah how are you dong? enjoying being NED I hope :slight_smile: When is your next apppintment/ scan? I bet you are enjoying a break from hospitals at the minute! I will have to ask my onc again about rads after your success. She fobbed me off last time I asked and suggested she would rather save that option. Have a great weekend xx

Claire- hope you are ok and are recovering well from this weeks chemo. Ive sent you a pm xx

Jo- welcome to the thread that noone wants to join!! Hope you are feeling well after your chemo this week? when was your initial dx then? What chemo did you have 1st time around? The whole triple neg thing is a nightmare but we have to hope and pray chemo will be effective for us. Thanks for your pm I will reply over the weekend xx

Scaryfox, margaret, kelly thinking of you and hoping you can update us soon. Hoping all is okay xx
Im out for a meal and drinks with 2 friends tonight- taking advantage of the fact that Im feeling so well post chemo. So far, Ive found the crbo very easy (*touches wood*) and have only really had 2 weak days after finishing steroids. Quite tired but with a 21 month old I think that comes with the territory…! Been thinking about starting a memory box for dan- know I need to do it but it kills m just thinking about it and its so hard with him being so young. we dont have anywherer near enough memories together yet so Im Praying (pleading) for lots more quality time with him. Just cant cope with the alternative. Its so not fair on him (and the rest of my family)- not just me. How this has happened at age 32 it just beggars belief :frowning:
Anyway, thinking of you all, praying for miracles all round and hoping youi all enjoy this weekend whatever your plans.
Lots of love xx

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Hi all!

Just nipped back on with my Nigella “hat” on to give soup recipes to Sandra and anyone else who might like to try them. Hope you don’t mind, Sandra, and can print them out OK - when I try to print out one page, I end up with reams of paper coming out - I am quite technologically dense! If you have any probs., I’ll ask Mike how to cut and paste stuff to send it as a pm.

Anyway, please excuse approx.amounts as I tend not to weigh and measure things out - it’s all quite flexible if you want to add or remove things.

CHICKEN NOODLE AND VEG.SOUP. - about 4 portions - depending on greed!

1 large pack chicken thighs.(skins off/bones left in)
1 med. onion - finely chopped.
6 med/large carrots - peeled and chunked.
5 med/large potatoes - peeled and cut into largish chunks.
1 pack mushrooms.
About 3 handfuls frozen peas,
1 “slab” Sharwoods fine noodles.
1 Knorr chicken stock cube/2/3 tablespoons Knorr liquid chicken stock.
1 tablespoon oil - olive or sunflower - can use Fry light spray, but not so good for frying onions.
1 bouquet garni sachet/1 tsp mixed herbs(optional)
Any other veg you fancy - leeks, celery, few garlic cloves would all be nice…
Few sprinkles salt and pepper.

Parsley/thyme dumplings to go with it (for piggy moments - I don’t put these in if doing Slimming World!)

4oz SR flour
2oz beef or veg. suet
1/2 tsp salt
Black pepper to taste
Small bunch parsley - chopped fine
1 tsp. dried thyme.

Right…instructions…you will need a large cooking pot…

1.Fry onions in oil until golden.
2. Add chicken thighs - cook a few mins.
3. Add carrots, seasonings and stock.
4. Pour in a good kettle full boiling water - about 1.5/1.8 litres, I think.
5. Bring to boil/skim off scummy bits which rise to surface if you like/ simmer for about 45 mins with lid on.
6. Add mushrooms - chopped in 1/2 is nice and chunky
7. Add pots.Cook another 20 mins or so until pots. are tender.
8. Add peas and noodles - another 10 mins simmering.
9.If using dumplings - mix ingredients together with cold water until a firm but slightly sticky dough is formed - turn up heat so soup is boiling - add dumps. to pan, cover and cook until they are all nice and fluffy - 10/15 mins.
10. Soup is ready - take off heat - de-bone chicken and pop meat back in pot - enjoy!

PS - as you can tell - soup is more of a chunky stew - although still soft to eat. You can always blend it all together after de-boning chicken, if you wish.
Love, Sarahxx (Soup no.2 to follow in next post!)

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Sarah’s soup saga continues…

BUTTERNUT SQUASH< SWEET POTATO AND LENTIL SOUP.-

You will need -

1 large b.n. squash - cut into 1/4s length-wise - de-seeded with fibrous bits scraped out - I use a metal spoon. Peel left on.
4 med/large sweet pots.
2/3 handfuls orange lentils
2 carrots - chopped.
2 med. potatoes - chopped
1 med. onion - chopped
1 tablespoon oil. (can use fry light spray)
1 - 2 knorr pork stock cubes
2 tsps ground coriander
Few shakes tabasco sauce
1 tsp. paprika
lemon juice
black pepper
3 tablespoons light creme fraiche

Chopped lean back bacon ( about 4 rashers) or some chopped chorizo sausage - both optional.

What you do…

  1. Put butternut squash on a baking tray after spraying it with fry light or rubbing surface with oil. Roast for about 40 - 45 mins in 200 degree oven/gas mark 6 until soft and a bit browned.

2.Prick sweet pots. and cook in micro. for 12(?) mins on high or until all soft and squishy. Take out and split to help cool.

3.Meanwhile, fry onions in large pot until soft.

4.Add potatoes and carrots, fry a bit.

  1. Add paprika, coriander,pepper, tabasco and 1 stock cube.

6.Fill pot with about 1.5 litres boiling water from kettle and bring to boil. Simmer for 15-20 mins with lid on until carrot and pots. are cooked through.

  1. Wash lentils in a sieve and add to pot - bring soup to boil and boil hard for 10 mins. Turn heat down and simmer for 15 mins or so until lentils are cooked.

8.Using oven gloves to hold them - scrape in innards of sweet pots and butternuts into soup - discard skins. Cook soup for another few mins - stir well as it gets pretty thick.

9.Using a stick blender or other blender, carefully, as v.hot, blend the soup until smooth. You might want to add some more water if it is a bit too thick.

  1. Add creme fraiche and blend again. Taste for seasonings - I often add a few squirts of lemon juice at this point to bring out the flavour as well as another bit of stock cube and black pepper. Butter melted in is also nice! You can also fry up the bacon bits in fry light or oil and add it to blended soup. Chorizo pieces fried off then added also yum but not Slimming world friendly!

Hope I’ve remembered all of it! I have plenty more recipes for soup too - Spinach and watercress, haddock and bacon chowder, chicken and mushroom, cream of mushroom, fish soup (like bouillabaise) which I have made in the past and can recommend …phew! Can’t think of anymore, but just remembered rissotto, which is also v.soft - don’t get me started on that!

Thinking of you too, Tina, your baby boy is adorable - did you say before his name is Daniel or am I imagining things? I’ve got a Dan too - an enormous 12 year old one! He’s still delicious to me! Here’s wishing you lots of time with your little one! I can’t begin to describe the unfairness of all this…hope you can get some more rads to your dodgy areas. Lots of love to others on this thread.

Sarahxx

187

Morning all

I am not triple neg but love making soup so thanks for the recipes I will give them a try. I don’t tend to use recipes much (although I have the Covent Garden Soup Books), my soups are often what I can ‘kitchen sink soup’, everything but the sink in there! MIne are often a bit thick and chunky, more like stew, but always lovely.

Happy souping girls!

Sue x

188

Hi ladies,

Sarah, you’re a star!! Thanks so much for the recipes, I’m compiling a shopping list for OH, let’s hope he copes with “butternut squash & the Noodles”!!

Tina, chemo in the pipeline is Taxol, which is a cousin of Taxotere (I had this one first with good, but short lived response). I didn’t lose any hair with Carboplatin and I had 3 treatments, hopefully you wont either. I agree with Sarah, your son looks adorable. I have an adorable grandaughter, Lilly who is 6 months old and I want to be around at least long enough for her to remember me.

I’ve started writing a sort of diary to her. Nothing morbid or slushy, more of a monthly update of what she’s been doing when she’s been with me, little things like what made her laugh, cry etc. I suppose it’s the sort of things I’d remind her of when she’s older.
I need some embarrassing baby photos next!!

I was supposed to have done the baby sitting when her mum went back to work, this has all changed as there are days I can hardly look after myself! This is the one of my biggest regrets, my mum looked after both my girls and they looked on their grandparents home as their own They had their own room, toys, books etc and often stayed the weekend because they wanted to. IT’S NOT FAIR! There I’ve said it…don’t want to moan, but it really is crap which ever way any of us look at it.

On that cheerful note I’m off!

Have a good weekend one and all,
Love Sandra x

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Hi everyone!

Glad you found the recipes useful, Sue and Sandra. They are a bit fiddly, but at least its a meal in itself and you’ll probably have some left over to freeze for another time. Hope your OH copes with shopping list - my parner, Mike, is an excellent shopper, but tends to stick too rigidly to the list and not think of alternatives if something’s not there! Then again, I am the orginal “Fat Controller” - awful memories of my son’s Thomas the tank days! - and want everything just right! I wish I could come over and make the soups for you, but it would be rather a long trek! You can rant and moan all you like on here btw! Is that your lovely grand-daughter in the photo? Hope you manage to build up your strength a bit. I’m off to try a new Nigella recipe called Bolognese rissotto - sound nice but we’ll see…

Love to all on this thread - Tina, Scaryfox, Claire, Margaret, Kelly and all who’ve posted,

Sarahxx

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Hi to everyone old and new. First I am so sorry that I have been absent from this thread for what seems like ages. I have been going through a bad patch (when is there a good patch with this illness - I hear you say!). Anyway I have just got results of latest scans and mri. Not very good news. Now spread to hips and spine. Am not dealing with this so well. I have however just started taking ante depressants which I had been putting off. Decided that I feel so yucky might as well try these to see if they make a difference. Have been experiencing a lot of pain and finding it difficult to get around. Am on a break of treatment at the present time but will have to start again in a few weeks time. I am desperate to get some quality of life back during this break but frankly have very little energy. Thankfully most of the family and friends are now feeling better after the awful last couple of months and are eager to give their support. Am still going to counsellor and have also enlisted the help of another organisation called Chai Cancer Care. Hate, hate, having to rely on others. Have always been so self reliant. Sorry for banging on for so long. I know one way and another you are all in the same boat.

I do wish you all well.

Love Margaret xx

191

Hi Everyone
Been a while! Had radiotherapy on my chest and started chemo at the same time - hence ended up in hospital with low white cells and high temperature. the antibiotics gave me diarrhea (can’t spell it) which affected by liver!!!
Lump on chest seems to be shrinking - had a moan at my onc for not investigating the lump back in April 10 - she just dismissed it as radiotherapy damage from 3 years ago as it did show up on the bone scan. Maybe it wouldn’t have spread so much!! Who knows. Clinging onto the idea that the lumph nodes are filtering the cancer cells and pestering my onc to do everything possible - but it is sometimes so difficult to look forward positively when you are told you don’t have long left.
Being in hospital is also so depressing - seeing others die around you. Told Alan (my partner) that I do not wish to die in the hospital - take me to Loros or home may have more dignity.
Very frustrating as wanting to do stuff - but don’t know what during the day - and I am tired. Can only go on hols when school hols and not sure how well I am going to be - very impatient as I don’t want to wait until chemo finished in May/June - even then you don’t know how you will be!
Anyway, enough of the rant - all so difficult.
Penny Brohn was brilliant - recommend it. It is very spiritual and not everyone’s cup of tea - but being with people in the same situation as you was very comforting and you are well looked after - so relaxing.
Well best go now.
Speak later. Love to all
Kelly x

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Hi Kelly, Margaret and all!

I am pleased that you’ve both been posting again and wish I could offer some words of comfort for your situations. I wonder if you may be interested in a couple of topics going on in other threads recently - firstly the use of metformin (v.common and effective diabetic drug)in the treatment of (particularly trip. neg).bc - for non-diabetics too - see 2x’s thread on the subject and secondly, cyberknife - a v.precisely targeted rads. treatment (I think, don’t quote me on that) offered by some NHS places and privately. I think the subject comes up in Tina’s thread about rads to same area twice.

Thinking of you,

Love Sarahxx

193

Hi

Just read recent threads. About Cyberknife. At the moment it is only being offered privately (disgraceful really). Also my onc tells me mainly for brain and lung secondaries. Apparently not suitable at present time for any other secondaries. However, they are making strides all the time. I am lucky that the hospital I attend is one of the few hospitals in the country to have one. I am seeing my Onc on Tuesday and will ask him about metformin. My sister and friend takes this drug but they are both diabetics. I will certainly look at the thread you are talking about. Thanks for the info. Thanks also for all the recipes - I am a great soup maker as it is nourishing and when your appetite goes you know at least you are getting something good inside you. I make butternut squash and sweet potato, tomato and good old fashioned vegetable which I do not liquidise as I like eating the veg in pieces. I grate cheese on top of this. Delicious especially when you don’t really feel like eating. I recommend plenty of chocolate to follow!!! Diet certainly gone for a burton!.

Keep smiling.

Love Margaret xxx

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Hello everyone and thanks for the lovely welcome. It is good to catch up with your stories and current situations, and many thoughts going out to all of you. I look forward to getting to know you better as time goes on.

I had my primary 3 years ago, and thought that was the end of it. Only had surgery and radio and no lymph involvement. As I hadn’t taken in the triple neg bit, my secondaries diagnosis was a bit of a surprise on 29th December. Now on EC2 and getting used to the pattern as it is first time chemo for me. The first day after is weird. The first week is the worst. Second week wobbly. Third week okish. I guess I am pretty early on in stage IV but, being a realist and want to have a handle on things. Mind you, this disease forces you to be a realist, so no surprise there.

I’m still dealing with the letting people know bit and, as you all know, that has its pressures. Other people are either more upset than I am, or they tell me I am an “inspiration” (groan groan). I have now learned to avoid anyone who has had more than one alcoholic beverage as I have had enough tears on my shoulder! I’m a musician of sorts so I do end up in these compromising situations…

I have a newish boyfriend rather than an OH. Have two sons 19 and 21. The older boy has Asperger’s so I worry about his future more than anything else. I’m trying to do some gentle “pushing out of the nest” exercises with them both. Though when I think about it, at their age I had long left home!

Mmm soup. Must go and eat.

Jo x

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Hi Jo!

I’m sorry you have had to join us on here. I’m a sort of (self appointed!) “honourary” member of this TN thread as I am actually weakly er+ - I did have a regional/secondary recurrance last year while on tamox. so a fat lot of good that did! So, since I had lymph node mets I have found a sort of “home” here, as a few of the lovely women on here have similar.

Anyway,the main reason that I am posting this is that I noticed you have a son with Asperger’s and it is the same for me. My son is only 12 and I worry constantly about not being around for him when he is grown up. I have this extremely morbid (realistic?!!) obsession about not reaching 50 (I’ve just turned 43) and Dan’s extreme dislike of change makes it difficult to imagine his life without me. Perhaps I’m being egotistical and he’ll be fine, I don’t know! Is your son able to manage independently? Does he work/go to uni? I guess I’m just looking for reassurance. Any thoughts you have on the subject would be appreciated. Thanks.

Sarahxx

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If it’s any help, I’m a mum with a dx of breast cancer and I’m on the autism spectrum myself…(and a national adviser on it, oddly) and having lost both parents at a relatively young age (first and arguably most important of the two in my early 20s). Many of us do cope with the loss of parents, because we can be quite logical about things. If we know what will happen and when, we’re often able to plan and think and get through it. I’m not saying it’s not hard, but it’s not impossible for most of us, provided there’s someone to still rely on afterwards. Awful to have to think about such things, but as our own son is disabled, I know what sort of things a mum worries about in advance…

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Hi there!

Thanks Amber for your post - it’s good to have the other side of things explained. It’s heartening too that you have ASD and gone on to have a “normal” life( whatever that is!) My son certainly has got a lot closer to his dad since my initial dx in Dec 07 and enjoys “man time” ,as he calls it, with him! Hope you are OK at the moment,
Love Sarahxx

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Sarah and Amber

I am so pleased that I posted about my worries about my son as both your messages have been really helpful. I hope I can be helpful and reassuring for you, Sarah, in that my son is independent in a practical way, a great cook, can just about manage most travel situations. His difficulties are that he is both very isolated and also has not managed to find a “direction” in life yet despite being clever academeically. Things rather fell apart after GCSEs. I’ll pm and we might be able to support each other that way a bit. Amber, your message was so reassuring. It is something that has crossed my mind as I know that my son has a very different way of coping with things that I consider to be sad and difficult. The hardest thing is how much to tell him about things as I don’t want to make him feel that he has to rush off and find an independent life right now! Again, if it is alright, I’d like to send you a pm and take advantage of your wisdom on this.

Good wishes and thoughts to all of you out there.

Go gently

Jo xx

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Hi ladies
Hope you are all as well as can be today? This is just a quick post as Im trying to cram allsorts in today before my chemo tomorrow!! I promise I will catch up poroperly over the next few days whilst Im resting and recouperating :wink:
Kelly and margaret Im so glad to hear that you are doing ok and to see you posting again. I was worried about you both. I am increasingly worried about scaryfox- has anyone heard anything from her. I hope and prey she is ok as she was having a terrible time.
Im feeling ok just a bit anxious about whether this carboplatin will be effective. Ive only had 1 treatment but I feel no difference in my lumps and bumps and if Im honest, I think there is significant activity in my chest wall in spite of the intensive rads I had there in Nov. I have dcided to go back to the marsden as things have progressed since I was last there and I want to know of other options to treat the chest wall area (I doubt my onc will give me more rads) and I want updated info about parp trials. I have found a parp trial that is recruiting triple negs and you dont need to be brca1/2, which is unusual.Only prob is its in amsterdam BUT Im gong to look into it.I also want to look further ino the benefits of avastin and changing to dose-dense chemo (2weekly instead of 3 weekly) as I found the 1st cycle really easy to tolerate and felt back to normal after a week.
Anyway, will do personals over the next few days- Im thinking of you all and hoping that some miracles come our way…
Love Tina xx

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Hi all

Tina I’m keeping my fingers crossed for you. Good luck at The Royal Marsden. A wonderful hospital. I believe it is the cancer centre of the country.

Saw my onc today. I am going to have some radiotherapy in a couple of weeks both on my neck lymph nodes and back as pallative treatment. I am also starting next rounds of capecitabine at the beginning of April as well as a Bisphosphoates (zoledronic acid - zometa) Has anyone had this treatment which apparently is given in infusion form once every three weeks? It further looks as though the cancer has spread to one of my ovaries. I could kick myself as I had a hysterectomy 25 years ago and I did not want my ovaries removed as they were healthy at the time. If only I had not been so stupid I would not have had this complication now. Anyway on the positive side, my scans otherwise showed my disease was stable. My Onc has said I can have another 4/6 week break once I have had another four or five cycles. At least this gives me something to look forward to.

Anyway hope everyone is keeping their pecker up.

Love Margaret xxx