Hi – I just wanted to introduce myself as a ‘newbie’! Triple negative and diagnosed with Spinal mets a few weeks ago (still in the shocked – oh my goodness this can not be real –stage!!). I am having the affected vertebrae removed next Thursday, then radiotherapy , but no chemo as there is no sign any other tumors at the moment. Following this there will be the bone strengthening infusions and then ‘fingers crossed’ with 3 monthly scans and monitoring. I have read some of the back posts, but any tips / help /ideas / things I ought to know now this horrid disease has taken me into ‘round two’. I recognise some of you from other postings who hve been very helpful, but thought there may be some new brains to pick here as well!! Thank you.
Hi Sadie - nice to have to aboard. Can’t give any helpful advice as struggling myself - but definitely worth trying counselling if you feel you need help in this direction. Amazing they are going to remove your vertebrae!!
Hope everyone OK. Margaret - I hope cough clears up soon. With the aching bones and tingling toes and fingers - I lived with my water bottle as well, plus had plenty of baths. Claire - sounds awful the pains in the head - sometimes they say the steroids can cause problems too. Here here Tina. Scareyfox - hope everything went OK today. Whilst having chemo today a lady had an allergic reaction to docxletaxal!
Had a blood transfusion yesterday - but still able to have chemo today. Platelets low - which I have not had before. One to go - yeepee. But then rads. Then, the worst aspect, living your life as normal as possible and hoping it doesn’t come back for some time yet not being able to do anything about it.
Hi Girlies, just a quickie. Haven’t been on for a while. Had the results of the latest blood test on Monday and pleased to say that the tumour markers have come down again and the liver and bone mets are stable. Hurrah for Arimidex even with all it’s crappy se’s.
Hope everyone is well today and that you all have a peaceful and painfree weekend. Lotsa love, Dianne xxxxxxxxxx
Thanks to those who commented on my good scan news. You all seem like lovely people! I’m really enjoying not having any treatment at the moment, but I’m starting rads again next week to zap my ovaries- oh goody! Claire, you sound like you have had a rotten time on the Abraxane and your scalp pains sounded awful. Hope you’re feeling better now. Incidentally, I had a rash round my collarbone during chemo.after each one which they said was a good sign - a “rebound reaction” from my rads in 08. Tina, thinking of you having your last rads. and wishing you all the best. Scaryfox - you’re in for the long haul with your chemo. but you seem very strong - keep going! Margaret, hope you are able to have your chemo.again next week and it’s " full steam ahead " as you say, from then on. Sandra, hope you enjoyed your Brighton trip. My son is very keen to go there next year to visit The Bluebell railway as he’s steam-train mad! Actually, I’m not sure if I’ve got the railway’s name right, never mind! It’s good you were able to have chemo.yesterday, Kelly. Which bit are you having rads on? Hello to Sadie and Dianne too.
All the best,
You know things aren’t good when you find youself writing a post at 0455 in the morning. I had been getting weaker and weaker and more and more nauseous and all markers were up yet the ct scan failed to show any liver mets. Ten days ago back at clinic with new registrar muttering about hepatitis. My frustrated 77 year old mum demanded to see consultant who swept in felt my liver and said there was no doubt it was liver mets (as if he was announcing the next train into Waterloo) and the fact they were pressing on my diaphragm explained breathlessness. Started Taxol -3 weeks on,1week off For up to six months - yesterday alongside parmidranate for bones. Feeling too tired and grotty to do the necessary weeping and wailing. Friends are being great, puppy is snuggling up to me but so scared and cross. Have I had the best health I’m ever going to have? Is it a steady spiral down from here? Sorry for the downer post especially as everyone on forum seems quite good at present.
Thanks for your continued support. My cough is still there but I feel it is getting better so I am sure I will be able to resume my treatment this coming week.
Diane - great news
Sadie - welcome to the friendliest club in town. Good luck with your op - I have heard of this before and I believe it is very successful. I will keep my fingers crossed that your good news continues. I do agree with Kelly however about counselling. I have had two sessions and I am releasing a lot of my pent up emotions. In the long run I think it will be extremely helpful.
Kelly - one step at a time. Great that you can see your treatment coming to an end - try not to think past that marvellous news.
Rivka - what can I say. I was so upset to read your posting my heart goes out to you. I too suffer from not sleeping and I often look at this site in the middle of the night. There are so many positive (and I hate that word) postings that hopefully you will get comfort from them. Have you thought about writing a diary about your emotions? I know there will be a lot of days when you are feeling good and on the days you don’t you can look back. I found this very useful first time around. In the meantime try to keep your pecker up.
Love to all and sorry if I have missed out anyone.
Hello everyone,
I’ve read all your posts and send best wishes to everyone, hope those that aren’t feeling too good get better and to those feeling ok at the mo, keep it up!
Our trip to Brighton included a couple of the wettest, windiest days imaginable! Our hotel was on the seafront and we managed a short walk to the pier to watch the amazing waves breaking on the beach. We also did a few short trips to the shopping lanes which have some lovely shops. I got a couple of bits for Christmas, always good. The eating places are great, lots of them, the ones we ate in were all good and very reasonable, presumably because of all the competition. I’d def recommend Brighton for a break.
I’ve written to my GP asking if he can do a referral to respiratory dept re my chest fluid. I feel I need a back up plan in case chemo doesn’t solve the problem, which is what my onc is hoping. I don’t think chemo is working at all, had 3rd on Fri, perhaps that’ll be the kick start that’s needed…who knows?
Hi ladies
just a quickie to bump this thread up + to apologise for being awol. Had a sh*tty week, found another lump by collarbone+ having loads of dizziness. Feel severely jetlagged but praying it’s just exhaustion with the rads+ worry. Last rads on Monday just hope it’s been enough…
Will post properly at the weekend + catch up with everyone then. Really hope everyone is doing ok
take care ladies
tina xx
Hi all,
Tina, so so sorry to read of your worries. Have you seen anyone about them yet? Please let us know how things are.
How is everyone else, Margaret, Kelly, Rivka, Sarah,Scareyfox, Sadie, Debs and all other TN’s???
I’m just emerging from the hell of 3rd Carboplatin, one week after treatment. The Se’s aren’t as harsh as Tax, but are much more emotion based. I cry more, have far more dire thoughts and find it difficult to lift myself.
Following my letter to GP about chest fluid, he has said to call him next week, once I’m up to it and he will swing in to action! I’m going to call Monday, as I can’t stand this awful breathlessness. It’s like having a ton weight on my chest, squashing all the air out of me. I can barely do anything indoors at the mo and I haven’t been out of the house for a week!! I’m planning on a very short outing today, thank goodness for my car & blue badge!
I wish you all the very best and hope you manage a reasonable weekend.
Great news started second cycle on Wednesday - still have cough but told Onc that if we wait till it goes it will be sometime next summer. He thought that was funny!!! Was very keen to resume as soon as possible. However, I have been just wiped out with tiredness and can confirm that my specialist subject on Mastermind will definitely be the tv.
Sandra like me you seem to have a good GP. Frankly they are worth their weight in gold - not everyone is as lucky.
Tina - sorry about your Sh’tty week but remember that is now behind you. Do know how you are feeling with the exhaustion though.
Hope everyone else is coping ok and that you are able to have as good a weekend as you would hope.
Sorry to hear about new lump Tina, what a nightmare. Hope the dizziness passes too.
Sandra, glad you enjoyed Brighton despite the rain. I love it - that’s why i live there! Hope the chest gets sorted asap.
As for me, I am in a right state, was hospitalised due to a fever, turns out I had septacemia - apparently if I hadn’t got IV antibiotics when I did I probably wouldn’t be here! That freaked me out a bit. I just thought I had flu, but no I coincidently have a chest/respiratory infecton at the same time, just to make life even more horrid! Still on a ton of antibiotics and chemo cancelled for this week. Hope my lumps don’t see their green light and start growing again!
Scareyfox - what a time you have had recently. I do hope your infections clear up soon.
I have now developed a mouth ulcer. I am being very careful with what I eat and rinsing out frequently. I am also getting quite a lot of nausea although not actually being sick (this chemo is not meant to do that) and this morning I noticed a fair bit of my hair round the plughole of the shower (this chemo is not meant to do this either!!!) It seems to have its own idea of what se will be.
Anyway Friday my brother came down to see me from Chester (I live in London). This is quite a big deal for him as he has ms (what a family eh) It was great seeing him and having some quality time together. Although different diseases we are in a similar boat and therefore can understand what the other is going through.
Anyway hope everyone who I have not mentioned is doing ok and enjoying their weekend.
Hi ladies
hope u are all doing ok today?
Scareyfox- bloody hell woman u are in the wars Really hope ur luck changes soon! Fingers crossed u are well enough for chemo next week + u start feeling better + stronger. Take good care x
sandra- sorry to hear ur having such a tough time on the carboplatin. Hopefully it’ll be all worth it as carbo is said to be really good with triple negs. Good luck with ur gp this week hope he gets you sorted as your situation sounds awful. Take care x
margret- so glad you were able to proceed with chemo last week (but sorry ur having lots of unexpected se’s). Great news that you have spent some quality time with your brother here’s to many more good times with him in the future x
Sarah how are you getting on? You started rads on your ovaries yet? Thanks for your post re my new lump by my collarbone. Your fantastic reaction to rads keeps me hopeful that it is treatable if the lump does turn out to be sinister (no investigations as yet- onc wants to just keep an eye on it). Hope you are well anyway x
claire how are you doing? Hope you are coming out the other side after chemo last wk. I’ve sent u a pm x
rikva- how are you feeling? Hope u are feeling a bit better- it seems ur having a really tough time lately. Please post an update and let us know how u are. Thinking of u x
Kelly- how’s it going with you? Haven’t heard from you in a while. Hope you are feeling well x
hello to anyone I’ve missed too
sorry I’ve not been on much lately as I’ve said I’ve been feeling crap + daily ads been very full on. Finished yesterday which is good coz my skin is in a right state. I’m officially falling apart! Jst PRAYING it’s got things under control. I’m terrified that it could start up again- onc said he honestly doesn’t know only time will tell. But he has said reaction has been good + he’s happy with where we are now. He’s said to go on our Canada holiday as planned at Xmas so I’m going to start looking for insurance next wk. I’m still having dizziness but onc said he’s not worried as I have no other symptoms. He expects me to feel better if I rest up now rads finished. Fingers crossed he is right- I’m naturally petrified about brain mets. Lump by collarbone hasn’t gone down but again, onc just wants to monitor it at this stage. He didn’t seem overly concerned so I’m trying not to worry too much at this stage.
Love to you all
tina x x
Hi all,
Scarefox, OMG what a nightmare! I’m so sorry you are suffering so much. How are you feeling now, have the AB’s done the trick? Lucky you, living in Brighton! I’m thinking of you and wishing you a speedy recovery. x
Margaret, I loved your Mastermind comment,the funniest jokes are usually the ones you can relate to and I can definitely relate to that!!How are you feeling now, has tiredness eased? I went food shopping yesterday, on my own and it wiped me out. I could barely load the bags into the car and was thinking I’d have to call a taxi just to have someone to help with the bags. In the end I got the trolley boy to load them and once home I had a rest first then unloaded. Don’t think I’ll be doing that again!!
Tina, Sorry you’ve been having a tough time too.Please remain positive and tell yourself everything IS under control!(Pot calling kettle??!).Are you going to look at the Travel Ins sticky thread, for your Canadian trip? Do you have relatives in Canada, or is it somewhere you fancy going? Let us know how you how things are, wont you?
To everyone else, where are you?! Has anyone had snow yet?
Feeling a bit sorry for myself at the moment. I am completely wiped out with exhaustion. Sandra I know how you feel with the shopping. I also did some early christmas food shopping yesterday - too much really I should have known better. I managed to get the shopping in the car but getting it up the stairs (I live in a first floor flat) was another thing. I came in and sat down and cried with tiredness.
I am also going through a spate of depression which is really unlike me. I am now into the second week only five and half more days to go. I am also starting to get quite anxious as to my first scan after some treatment. I am sure this is quite normal but it is really hard to cope with.
I think I had better stop now otherwise you will all start crying.
Hi everyone. Been a while since I wrote. Keep reading, then crying as I feel we have all been given a rough deal. What did we do to deserve this? Not looking forward to the future if it means more chemo, more feeling crap and pain - you look around and see everyone else getting on with their lives but you feel so s**t - it takes over your life. Looking forward to going back to work - some normality - but that fills me with dread - can I cope - brain gone to jelly - they’ve managed without me!!! Anyway less of the rant.
Margaret = check your red cell count = I was told by my trial nurse that I am weepy because of being anaemic.
Scareyfox = what can I say that others haven’t. Thinking of you.
Tina = Canadian holiday sounds fantastic. Something to look forward to.
Sandra - Carboplatin does seem to sap the energy. Walking up the stairs is like running a marathon. Keep an eye on your red cells = eventually they gave me a blood transfusion.
Rivka - how are you - missing your honest and witty comments!
Sarah = haven’t had confirmation yet regarding rads, but onc said at the beginning of treatment I would have rads on the lymph nodes in my neck - around the collarbone. I don’t think I will have rads on the node behind the sternum as I received rads there last time.
What bugs me is - my nodes feel smaller - if the rads give them an extra zap - great = but they are not willing to do anymore biopsies or anything to check the cancer cells are inactive. I just have to wait for them to grow again or somewhere else!!! I want to know!!!
I have checked with Brohn for a residential course = shall I do it or not? Scarey on your own and I will probably cry all the time. Want peace and harmony preferrably.
It’s 0730 so a definite improvement on timing of post. Grabbing at anything positive here as my body is enthusiastically embrassing all that’s negative. If only I’d known I had this super efficient cancer spreading potential I might have given my figure a bit more respect than it seeemingly deserved with it’s lumps and bumps in all the wrong places… It looks now as if my overactive tumours have a new ambition: to win the hand of poker with a full house of common mets. They’ve colonised bones and liverand I had an emergency MRI scan on brainand lung x ray yesterday and am going in this morning to have the results. What does get me down is the terrible breathlessness (my liver mets are pressing on my diaphrapm). Run out of breath if I walk five steps or bend over. Any tips to help? Although I’m sorry so many people are having a rough time at the moment it does help to read your threads and know we righteously angry and in distress over the outrageous position we find ourselves in. Keep on writing!
Rivka - good luck with your results today - do keep us posted
Kelly - thanks for the info on the red cell count - that would certainly explain a lot. I know the worse part is the horrible waiting game. I suppose we have to hang on to that well known platitude “no news is good news”. I can’t believe I am now coming out with platitudes.
Tina - good for you booking the Canadian holiday. One place I have always wanted to visit. Please let us know how you get on. Try Bromley Insurance for a quote. Their phone number is 01282 416050. I remember reading on one of the thread that they gave someone a competitive quote.
I am still feeling very low and am considering getting some anti depressants from my GP. I am however somewhat loathe to start on them.
Very interesting what you said about the rads on the lymph nodes of the neck. I have both sides of my neck affected. I thought you could only had rads on one side.
Anyway hope everyone has a peaceful and happy weekend.
I agree with all of the comments on this thread, I’ve been feeling so low recently and I’m only 2 cycles into 6, it’s proving to be so difficult to stay positive this time round. I’ve reluctantly accepted sleeping pills and anti depressents from from GP, this decision wasn’t taken lightly but I feel I need something to help me get to the end of this treatment. I was in the exact same position last Christmas and was looking forward to this Christmas being out on the tiles in my LBD, new boobs and flowing hair, it’s too depressing to think I’d come so far in the 7 months without treatment and now I find myself in the same dark place.
Sorry for the moan but I know you all understand how I’m feeling.
Great to see some activity on the thread ladies. Will catch up With everyone properly over the wkend- I’m just leaving for a night in Manchester- looking forward to several beers;) ! Just wanted to wish rikva all the best with her scan results today really hope it’s good news lets face it you are sure due some.
Love to everyone
Tina xx
Really hope ur luck changes soon! Fingers crossed u are well enough for chemo next week + u start feeling better + stronger. Take good care x