Triple negative secondaries/ recurrences

Living with secondary breast cancer Supporting each other and sharing experiences
121

Hiya!!
Margaret, Poor you, I can whole heartedly sympathise with you about the exhaustion and yes, it is normal to be anxious about your up and coming scan, made worse by the fact you are feeling down at the moment. A couple of ladies on another thread have been extolling the virtues of A.D’s, saying they couldn’t manage without them. I must admit I’m thinking of asking my GP for some the next time I’m feeling down. Another thing I’ve got up my sleeve is counselling…I’ve already lined up the Mac lady at my hospital! Somehow I think just keeping these options in reserve helps me through the bad days. I hope you are feeling a bit better today, thinking of you.

Kelly, You’ve put into words what we all think, what have we done? I can’t think of anything that deserves this c**p. I looked at Penny Brohn and it looks wonderful. It’s such a long trip for me, about 4 hours, I just don’t feel up to it. When are you thinking of going? I’m sure that once you are there, being on your own wouldn’t be a problem. After all everyone is in the same boat. I was told that scans aren’t done needlessly, because the scan might come back clear, but a small cell wouldn’t necessarily show up, meaning we’d be lulled into a false sense of security??!

Rivka, Please let us know how your app today went. Re the breathlessness, I’m not sure if it’s the same as mine,which is caused by fluid round the lung resulting in collapsed lung, but I’ve learnt to breath into the diaphragm to try & regulate breathing. I looked on line for tips to help cope with breathlessness.When I go up stairs I breath in thro nose and take one step, out through mouth while taking second step etc etc. I find it helps. The worse thing is when I’m bursting for the loo and can’t dash up the stairs…Tena Lady here I come!!!Oh Joy!!
As for bending over, no tips other than DON’T!!

Poppet, Quite right, we do understand, totally. Have you started the AD’s yet, if so are they working? I know what you mean about the reluctance, silly really! Christmas is such a marker, isn’t it? We are going away, to a hotel. This was originally booked to celebrate the end of treatment, little knowing I’d be back on chemo so soon. Now it’s a relief to think everything will be done for us, but a bit worrying in case I don’t feel well…as seems to be the case so often.The rest of the family keep telling me not to worry, but I can’t help it.

Tina, Have fun!!I’m out for dinner on Sat and I’m looking forward to a few wines!! We’ll have to swap notes!!

Hope everyone manages to enjoy at least some of their weekend, let it be pain & worry free…Sandra x

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Hi Everyone

Sandra - I am not sure about Brohn yet. They do a 3 day and 2 day course. The 3 day courses are when I am due back to work and it will be difficult for me to have time off as I work at a primary school. So looking at the 2 day courses as there are some space in January. Need to look on their website again to see what is what. But I think I will go - why not.

Rivka - great to hear from you but such sad news. Let us know how you got on today.

Thinking of going out to our local town Lutterworth for the switch on lights or do I go and visit my mum (Alzheimers)in the care home, or both - tricky decision! Hopefully will have enough energy to do a Dickens night at Atherstone on Saturday and then my son’s schools Xmas Fair on Sunday. Busy weekend but must try and do - will not let this b***ard beat me!!

Love to all
Kelly x

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Don’t like breaking with tradition but the scans were all clear! Nothing sinister, no sympathetic looks from docs or hand holding. I know it doesn’t change things radically but it’s these small victories that help us pick ourselves up, dust ourselves down and start all over again. (even if we do have to stop after five minutes for a rest). My breathlessness is caused by mets pressing on the diaphraphram and it’s so scary.

Not sure about brohn. Is it too late to drink spinach raw smoothies with raw garlic shots. Very hot o. Nutritition. I also think it’s full of people post treatment with v different issues to those with secondaries. This is all hearsay ive never gone and do quite fancy the meditation side of it. Have good weekends, take the ADs and here’s to small victories!

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Great news Rivka, any good news should be embraced…heres to the small victories!!!

Yes Sandra started on the A.D’s today, the small print says it may take around 2 weeks to feel the benefit and you may feel worse before you feel better…feel worse, not sure how much lower I can get. I also slept well last night after my first sleeping pill, think I woke twice and felt fairly refreshed this morning, having a good nights sleep does make a difference.

Started with my complimentary therapies at the local Macmillan Centre today, having reflexolgy, the therapist mentioned a website today called imperfectlynatural.com, lots of features and info, plus you can sign up for a free newsletter.

Keep well everyone.

XX

125

Hi all

Tina - hope you enjoyed your night on the town in Manchester!!

Rivka - Brilliant news on the scan results - is there anything they can do for your breathlessness. In this day and age I would have thought they would be able to alleviate any s.e.

Poppet - hope you enjoy your reflexology. It is my favourite complimentary therapy - had six sessions first time round and am due to start this time round just as soon as I can muster up some energy.

Kelly - Hope you enjoyed watching the switching on the lights. However, your upcoming weekend is making me feel exhausted just reading about it. I did a Dickens evening many years ago and thoroughly enjoyed it.

So sorry to read about your Mum - it must be extremely difficult for you with everything else going on in your life.

Sandra - thanks for the advice about the A.D. Have been considering this for a while now. Again I went on them for a short time when initially diagnosed but at that time knew I would be able to come off them once I was over my treatment and had been cured!!!
This time round is of course different and I am a little scared about getting hooked. I am going to speak to my Chemo nurse tomorrow and if she thinks it would be a good idea I will arrange to see my GP.

My Counsellor has advised me to start a “mood diary”. One feeling very low and ten great. I have another two and half days to the end of this cycle of treatment and so far my mood diary has ranged between 3 and 5. I really do hope things improve as this is making me feel very depressed and that is not from the side effects which have not been too bad. The exhaustion is another thing however. The other night I was awake all night long and without sleep it is so difficult to cope. Anyway enough of me.

Hope everyone has a good week.

Love Margaret xx

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Thank you Margaret, Tina, Sandra, Kelly for your sympathies! As predicted my lumps have seen the green light from the enforced 3 week chemo-break and are bulging out of my neck and chest, causing pain again. Nightmare. Never thought I’d be looking forward to chemo on Thursday! Just hope it works and the cells haven’t become ‘immune’ or something.

Rivka, great news! I was pleased to hear your scan result was good.

Sorry to hear so many of you are feeling low. I only tried anti-depressants once briefly (for postnatal depression) and didn’t get on with them at all… but hope they work out for you Claire, and Margaret & Sandra if you do give them a go.

Re Penny Brohn, I would recommend it, I went in the summer. I don’t think it’s ever too late to learn about nutrition and complementary stuff, they might not cure us but can defo. make us feel better and maybe even live a bit longer! I loved the food at PB and at home my husband makes me a fresh veggie juice every day, although I’m too weak to cook much these days I do try to eat as many of the cancer fighting foods as I can. Kelly, no need to be scared, they are so friendly and crying is allowed (i saw lots of it!) The only downside is it IS a pain to get to, unless you live in Bristol (£25 cab ride from central bristol). But it’s the most peaceful and harmonious place you can imagine. They have a great library too, I borrowed an interesting book on Cancer Art Therapy, which was very inspiring. Been trying to do some at home…

Tina, very jealous re the Canada trip! Hope you find some cheap insurance. Let us know?

Best wishes to all…

SFx

127

Hi all
Well, didn’t make the Switch On nor the Dickens - my son was too poorly. So stayed at home - oh well.

Seeing onc tomorrow. Last chemo, I hope, on Thursday. Desperate to have my CT scan to see how well it is going. Must also speak to them about the pain in my chest - getting worse. Have nerve problems as well, which I hope is related to the radiotherapy damage they say I have - but they are making assumptions - no-one has really checked. The CT scan showed no ominous signs which is good, but the pain radiating from the chest to the underarm, and around the back is some days excrutiating and debilitating.

Have decided to go to PBrohn in January. I am not sure of when I will be going back to work (phased return), but I will just have to tell them I cant work for those 3 days.

Great news Rivka.

Off to make a cuppa now and a pain killer and try and get some sleep. Ha Ha.

Love to you all.
Kelly

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Morning everyone,
It’s snowing heavily here,(Essex), at the mo and I’m just hoping I’ll be able to get to hospital for my onc app!

Kelly, what a shame your son wasn’t well and you all had to miss your planned outings, is he feeling better now? Well done on your decision to go to PB. I’m sure your work will understand if you need to have a few days off, after all it will benefit them as well as you in the long run. Good luck for your onc app today, let us know how you get on, I’m keeping everything crossed for good news. Hope you’ve managed to get your pain under control, have you got specific pain killers or just paracetamol?

Scareyfox, I’m so sorry your lumps have got worse,good luck with chemo for Thurs. I’m def jealous of your PB visit, wish there was one nearer to me, or some sort of alternative, but there doesn’t seem to be.

Margaret, How are you feeling, are you at the end of this cycle now? Sorry if I’ve missed this, but what is and how is your treatment given? I do hope you are feeling a bit brighter now. Did you see Poppets mail talking about ADs and sleeping tabs? The sleeping tabs seem to help, perhaps this might be an option? The nights are so long, too much time to think, too much time to feel ill, the day time is more than enough time for all of this!! I take a Sainsburys sleeping aid, which help, not always, but more often than not. I only take them for a few days at a time, just to try and get me back in the sleeping habit! Let us know how things are?

Rivka, Good news re your scans! I’m finding breathlessness the hardest thing to cope with. It’s hard to believe I was walking to our local park in the summer, when now just getting myself dressed puffs me out!! As you say, very scarey! Is there anything that can be done re your problem? I think PB do meditation CDs, have a look at their website?

Poppet, How are you?

Tina, Did you have a good time in Manchester? Have you had your referral about Iscador? I’d be interested in how it went…

Love to you all, keep warm! Sandra x

129

Hi all,
Managed to get to hosp. Not the best onc app I’ve ever had.When she asked how I was I told her, not too good. Then explained how my breathing has got much worse, plus none of my other symptoms have improved.
I was told there isn’t much they can do about the chest. I explained I’d been to my GP who had done a referral…onc wasn’t impressed! She asked why he’d done that… confusing things! I told her she was the one who told me to go to my GP with any problems!!
She measured my lumps and agreed they hadn’t shrunk, but on a plus they hadn’t grown. Then suddenly she’s telling me she’s going to cancel my chemo for tomorrow & contact chest unit re getting something done about the fluid! Upshot is that I’ve got to have a CT asap, then app with chest consultant…which is just what my GP was doing!!
I got the impression, rightly or wrongly, that she was saying in not so many words that there isn’t much more they can do for me and getting the chest sorted will make me more comfortable.
My onc is very difficult to speak to, she doesn’t have much of a bedside manner & is very disjointed in the way she tells you things.
All in all I’m feeling very fearful & tearful.
There’s so much to live for, but I feel as though I’m heading in the wrong direction.

Sandra xx

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Hi all,

Sandra - I was so upset to read your thread. How unfortunate not to have an Onc who is sympathetic to you and your needs. Surely it is not too late to ask for a second opinion. Could you perhaps speak to your GP who appears to be on your side. Anyway at least good news about the lumps. The fact that they stayed the same is the next best thing to them strinking. Hope your CT gives you some answers - do keep us posted - I am sure I speak for everyone in saying we are all here for you.

As for me I have now finished cycle 2. I am on capecitabine tablets twice a day for 14 days and then 7 days of rest. I am not feeling great however as I am extremely tired and suffering a lot of nausea as well as insomnia. In fact last night at 5.00 am had to get out of bed for the upteenth time to take anti emetics. My mood is around the 5 mark but I am having counselling so I do at least have someone to talk my issues through with.

I am hoping to have my scan after cycle 3 - am seeing Onc later in the month and will have a word with him. My cancer at the present time is in the lymph nodes on both sides of my neck under shoulder blade but I am having pain going up one side of my neck. My joints are also giving me a lot of gip. My liver is also looking suspicious so at the moment I feel I have a lot of anxiety - I am sure this is preventing me sleeping.

Anyway I am going to have a nice shower (disgraceful that I am not even up yet at 1.30 pm ) unfortunately baths are out as I find it difficult getting out. What a sh…y disease this is!

Hope everyone is well and keeping warm.

Love Margaret xx

131

Hi all,

Haven’t posted for a while for various resaons, but have been having a nose at the thread most days to see how you all are.

Sandra, I’m sorry to hear your news - your onc. doesn’t sound the most sensitive of people - making things less not more clear and totally unsuited to dealing with patients who are often upset and frightened. I really hope something can be done soon regarding your chest and breathing problems.

Scaryfox - thinking of you too and hopng chemo. will get stuck into those lumps. I had IV anti-biotics once for bad cellulitus caused by my breast drain tube.It’s pretty similar to septicemia, I think, and not that uncommon. You have suffered with a spate of rotten luck re treatment but you are always full of good humour and un-self-pitying-and no-one would blame you if you did moan. Penny Brohn centre sounds good and not too far away from me in Bristol (I’m in Neath, near Swansea S.Wales). Is it v.expensive as we’re always skint?!

Tina - hope you are OK after rads.My skin was awful for nearly a month afterwards. Had my rads to ovaries all last week. Not too bad after apart from incredibly bad wind for a couple of days! Then had the predicted bowel problems last weekend. I was in the kitchen dept. of B&Q on Sat. and had an attack of the tell-tale tummy grumbling and pains and thought I’d have to make a mad dash for the staff toilets. Asked the guy serving us if I could sit down and have a glass of water to take my immodium and, weirdly, he said he’d had the same rads to stomach a couple of years ago (although for prostate) - strange coincidence!

Kelly - glad to hear that it’s your last chemo. this week. Hope your scan goes well when you have it and that they can find out what’s causing your pain. They also may be able to re-do your sternum nodes if you didn’t have a large dose last time. I had my collarbone area done twice - this summer/autumn and in June08 - so you never know. My son’s been off school for 10 days with a broken arm (he’s back now, thank God!)and because he can’t write I’ve been helping him with homework - ie doing it all! It’s really hard - my old brain isn’t what it was!

Margaret - I’m sorry to hear you’re not sleeping well. I think sleepng tabs or diazepam may be worth trying in the short term. i also find piriton zonks me out quite well. I’ve been on ADs myself for nearly 11 years so i guess you could say I was hooked! I’ve tried many times to come off them but to no avail, but I think the newer ones are less addictive - mine are effexor ( venlafaxine) and I wouldn’t recommend them!

Best wishes too to Claire - reflexology is v.relaxing, I found and Rivka - hope the chemo. works quickly for you. Hope I haven’t missed anyone out.

Love Sarahxxx

132

Hi all

I hope the fact that there have been no threads for a few days means everyone is feeling brill and enjoying themselves!

For my part I am still feeling a little low although I am on the my rest week at the moment. Cycle 3 starts Wednesday yippee …

I did get some a.d. and they are at the present in my cupboard - I am being a bit of a woose about taking them. I decided to see how I go when I start my next cycle. If my mood diary is still around 3/4 then I will give them a go.

Although I have been exhausted I have felt like a rat in a trap recently not being able to get out. Thank goodness where I live we have seen the last of the snow for the time being at least. It vanished finally on Saturday and I went to my library and supermarket - well it was an outing!!!

Spent all night Saturday up (couldn’t sleep) felt like a zombie on Sunday - got into bed at 10 pm on Sunday slept soundly for one and half hours and that was it. Hence the reason I am writing this thread.

Anyway enough about me - I do hope you all have had a warm and nice weekend and that the coming week is kind to you.

Love Margaret xx

133

Hello All,

Sadly not had the best of weeks, went for my 3rd cycle of Abraxne yesterday and it’s been decided that it isn’t shrinking my lumps in actual fact it feels like there getting bigger, plus I think I’ve now discovered one in my neck, so there changing the regime. Feel very helpless and low and that the last 2 cycles have been in vain. I’m going to start on Gemcitabine & Carboplatin next Wed (providing my GFR Kidney test comes back ok) not sure how many cycles I guess it depends on how I respond to it.

I’m fed up of feeling sorry for myself but just can’t seem to get a break at the moment.

Hope everyone is doing ok.

Claire x

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Hello All,

Sadly not had the best of weeks, went for my 3rd cycle of Abraxne yesterday and it’s been decided that it isn’t shrinking my lumps in actual fact it feels like there getting bigger, plus I think I’ve now discovered one in my neck, so there changing the regime. Feel very helpless and low and that the last 2 cycles have been in vain. I’m going to start on Gemcitabine & Carboplatin next Wed (providing my GFR Kidney test comes back ok) not sure how many cycles I guess it depends on how I respond to it.

I’m fed up of feeling sorry for myself but just can’t seem to get a break at the moment.

Hope everyone is doing ok.

Claire x

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Really sorry it’s not working , I really hope this next lot works for you

vickie
xxxxx

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Hello ladies
Hope evryone is doing okay- I am a little concerned at the lack of activity on our thread but I’m hoping that like me, there is a simple explanation for the lack of posts :slight_smile:
Sorry I have been a crap buddy lately- my iphone broke a few weeks ago which put a stop to my frequent browsing of the site. We do have a laptop but its often in hubby’s work and when I do get on, my little boy is usually hanging off my leg and my visit is cut very short. Ive also had a hectic month as we had daniel christened on the 5th, and went to centreparcs courtesy of the willow foundation the following weekend. This weekend we’ve had an early christmas with family as we go to canada on tuesday. Wasnt sure if we would get there but Im feeling ok, my skin has healed well now Ive finished rads, and I found an insurance company mad enough to cover me (insurepink- very cheap too!)!! Im just praying I stay well especially whilst away and Im hoping beyond hope that the skin mets dont start up again- its possible according to my onc and my skin feels a bit itchy so im a little anxious. Dont think I could cope… I see my onc on 6th Jan and will be having full body CT soon after so lots to look forward to on my return from canada… not!
Anyway enough about me- just wanted to explain my absence and update as to where Im upto. How is everyone else? Scaryfox, Rikva, Sandra?? How are you ladies doing. Last time we spoke you were all having a really tough time. Im hoping the tide has turned for you ladies and treatment is going well you are feeling as good as can be. Please update us as I know Im not alone in feeling concerned about you guys xxx
How is everyone else doing? Margart- hope things are good with you and treatment has been going according to plan after all the previous delays. Lets know how you are doing? x
Claire- hope you are feeling ok after your first carboplatin on wednesday. Keeping everything crossed it is effective and gets things under control for you. Was lovely to finally meet up with you last week x
Sarah- how are you feeling? Thanks for your pm x
Hello to anyone else Ive missed x

Please lets keep this thread going and keep on supporting each other. I am taking my laptop to canada so will log on every few days to see how everyone is doing. I really hope everyone is able to feel well and enjoy christmas. We all deserve it :slight_smile:

Lots of love to you lovely ladies

Tina xxxx

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Hi Tina,

Glad your skin’s a bit better… and that you found insurance… you must be ready for that trip! Hope you have a great time.

I’ve had a rough few weeks, lumps all grew following my septacemia induced chemo-break, and my autoimmune condition flared with it causing me lots more pain and weakness. But I’ve resumed chemo now, had 3 lots - one a week, and am feeling *slightly* better, lumps still there but less painful. They have also suggested Fentanyl patches as I had allergies to everything else, but I’ve been resisting so far… don’t want more skin problems or constipation if I can help it!

We did an early christmas this weekend too, for my little boy, as he is going with his Dad to the grandparents in France on Thurs. I have my girlie friends coming in shifts to take care of me - looking forward to some pampering and british TV for once! Just praying I don’t pick up any more horrid infections, my friends all seem to be dropping like flies with flu.

Hoping everyone else is OK? Claire, really sorry abraxane didn’t work. Hows the gem/carb going? Any better or too early to say?

SFx

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Hi All

Scaryfox sorry to hear about your lumps, mine too have been giving me gip-I was gonna ask for some more effective pain relief, what is Fentanyl? Back in on Wed for next lot of Chemo, SE’s have been similar to FEC, nausea, flu like symptons, aches ands pains plus hot sweats like you wouldn’t believe, just hoping that this lot on Wed is a bit easier on me as its half the dose, just wanna try to enjoy Christmas Day if possible.

Tina I hope you have a safe journey to Canada.

Christmas wishes to all.

XX

139

Hi all

Have felt very guilty about letting thread lapse but have not been great. I have now just finished the third cycle of my capecitabine and am having my first scan tomorrow. Seeing Onc on Friday am to get result (am really nervous about it). I have been seeing Counsellor is has been great but when I leave her I feel like sh… If mood does not improve after Christmas will definitely start on the a.d. The weather has not helped either as it has been too bad to go out and everyone around me seems to have had this dreaded virus. They have been too scared to visit and quite frankly I did not want them around with the chance that I could pick something up. Therefore have felt extremely isolated. Even my specialist subject - the tv has not helped a lot. Anyway it looks as though family will be here for Christmas - brother and family coming to London from Chester and niece and family coming from Holland. I just hope the extreme exhaustion abates for a while.

Tina - I was so glad to read that your skin condition has improved and I will keep my fingers crossed that you have an incredible trip to Canada. Lets hope weather does not curtail your flight!!
Keep us posted if you have the time and inclination and tell us about all the wonderful sights and people you meet.

Claire - hope the Carboplatin and Gemcitabine does the trick. These treatments are really trial and error. However the alternative does not bear thinking about. We just have to give everything out there a try. Lets hope your lumps are not getting bigger. The trouble is your imagination can just go mad = I know mine does.

Scaryfox so sorry to learn that you have been in so much pain = I really hope this improve very quickly and that you and everyone is able to enjoy Christmas.

Keep warm and well everyone and I hope the coming season brings you all everything you wish for and deserve.

Love Margaret xx

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Great to see some activity on here :slight_smile: margaret + scaryfox hope u start to feel much better + enjoy the Xmas period. My iPhone is fixed (yippee!) so I’ll be keeping an eye on this thread whilst away. We fly in a few hours… Weather permitting!!
Claire- good luck with round 2 tday Hun xx
take care all speak soon xx