Josephine can I ask what platinum salts are?? Also, what have you been told about the benefits of avastin? I only asked because I was keen to try avastin but my oncs rubbished it, as did the prof I saw at the marsden. We have private healthcare + so could probably access it if worthwhile.
Thanks
tina x
Hi Tina
Platinum salts (sounds like you should put them in your bath) is the generic term for platinum-based chemotherapy like caboplatin, cisplatin. The reason to use avastin is because of the lung adeno, which bleeds easily (i.e is very vascular) and likley to be very susceptible to VEGF-dependent new blood vessel formation. The chest physician wants to start a.s.a.p and is very confident that the tumour will shrink with this. If not it will probably be laser treatment. Avastin (as you know is very expensive) and I too have private insurance, but if the oncologist think that it is suitable they will recommend. I suspect that if it does work, it should happen pretty quickly. Anyway I will keep you posted
Hi all
Tina - hope your scans go well tomorrow and that you are able to get a preliminary report on them at least. Do keep us all posted.
Josephine - welcome to the friendliest club in town (well thats what I have found anyway). You are really going through it at the moment - please don’t worry about your anxious mood - we all feel this at sometime or other. Remember the purpose of this thread is to give support and encouragement to each other because who knows better what you are going through!!
I have had a bad few days and had to stop my treatment on Sunday and Monday. Apparently if the side effects of Capecitabine are too severe if means the body is absorbing more than is needed and the treatment can be stopped for a time to let the body adjust. This in no way depletes the effacy of the treatment or so I am told. Anyway I am now back on it and have another five days to go to complete this cycle. Then only two more (I hope) before I can have some respite. This will of course be subject to the results of the next ct scan. I just wish I had some energy this for me has been the worst and the lack of energy is making me feel very low indeed. I cannot make any arrangements as I know I will end up having to cancel them. This disease really does suck!!!
Anyway I hope everyone who I have not mentioned by name is doing ok.
Love Margaret xx
Hi ladies
still very quiet on here hope u all ok?
Just a quick update from me- ct report showed no organ involvement 
!! I’m hugely relieved to say the least as I was convinced it’d be bad news this time due to various symptoms. Sadly, there is progression to lymph nodes at collarbone but I knew that coz felt a lump there in nov. I know that’s serious but I’m just thankful there’s no organ spread. I will be startin carboplatin in next few wks + maybe more rads too. Will know more on weds wen I see onc.
Thinkin of u all try + post if u can.
Tina x
Hi everyone!
Just nipped on here to see how everyone is and to check your news specifically, Tina. Pleased that no organ involvement in your scan, but sorry there is progression to lymphs, sadly, what you expected, perhaps? I know that its like with lymph mets - I hate lymph nodes! However, I read on the US website that they are “cancer catchers” to stop the cells invading the rest of the body - so trying to think of them in a positive light! Sorry you’re starting chemo. again - what a bummer. Hello to Josephine - you should get plenty of support here. Margaret - hope you’re able to continue and complete your treatment - it’s so awful not being able to get out and about due to feeling grotty.
I’m ok - seeing onc. next week(Weds)to discuss moving onto arimidex or similar after I had my ovaries zapped in Nov.Should also be having another CT scan in the next week or two. He said that i’d be able to leave the next one for 6 months if this one is ok. My arm still feels very stiff and lumpy under it, but I hope it’s just scar tissue and rads effects. Still, time will tell…worrying too about a cough I’ve had since Christmas - you all know the hell of uncertainty!
Love to all on here,
Sarahxxx
Hi Tina
Just wanted to say I’m so glad there’s no spread to organs. Sorry about the node.
Hope the treatment isn’t too bad. I’m about to start radiation to chest wall, axillary and up to my neck - onc thinks because of spread in soft tissue underarm, further spread is most likely in the same direction as yours.
I’m in admiration of your attitude. Hope you’re feeling ok.
xxx
Hi everyone!
Just wanted to say, Jane - what a gorgeous baby you have! hope your rads go well - I had similar to underarm, collar bone and neck in Sept. Pretty nasty effects post-treatment - so keep slathering on the aqueous cream and when better try and do plenty of arm stretches as it all gets pretty stiff and tight under arm and into chest a few weeks after. All the best to all on here - Scaryfox and Claire - how are you both?
Love, Sarahxx
Oh god, Sarah, what were the SEs? And they happened after treatment had finished? I’m dreading it, trying to stay postive about the life-saving aspect and paying a small price and all that. I’m so fair-skinned, onc said I’ll burn 
I was vainly upset that the rads would be so high up on my chest and neck, and the effects so visible. Will I be scarred for life?? xxx
Hi jane
don’t know how I missed ur post? Thanks for ur kind words- really sorry to hear you’re having such a tough time yourself and with such a young baby too. Fantastic that all went well given you had chemo whilst pregnant. If u can get through that then u will fly thru rads!! I completed intensive rads to chest wall (very large area) for skin mets- that finished nov+ I was pretty badly burned. Couldn’t wear a bra for a month + I was literally raw, scars were opening etc. Now collarbone node progression has been confirmed, I’m going to ask my onc about further rads to that area + possibly neck also - alongside chemo. I imagine it will get sore + unsightly BUT if it keeps us here with our babies then it’s gota be done hasn’t it!
Imgutted about progression + more chemo especially so soon after original dx. It’s exactly a year tmoro since I found the lump… My onc was very negative about my prognosis ba k in sept + suggested I might not be around by (last) Xmas- so the fact that my organs are still showing no signs of mets is a big boost to me.
Really hope things go well 4u + the rads do thetrick. Keep in touch x
Sarah- how are u doing? Tganks for your support Things very quiet on here really hope all our buddies are ok x
thinking of u all ladies + hoping all is as well as can be
love tina x
Hi everyone!
Worried this thread is in danger of fizzling out! Hope everyone is ok? Tina, saw your other thread and wishing you well with chemo. this week. I would def.try the anti-deps - you can always come off them if they don’t suit you and they may help lift your mood - after all they are designed to do so! I’ve been on effexor for the best part of 11 years - long story and nothing to do with bc!- and would say steer clear of them - generic name - venlafaxine, but prozac or similar - give it a go!
Got my next CT scan on Tues. - on my birthday - wonderful! Seeing onc.then as soon as. Lymphodema giving me gip- saw lymph. clinic nurse last Thurs and she said it was badly controlled and tissues were hardening due to rads last Autumn. She made me feel like I’d been naughty - although no-one told me to do exercises, perhaps I should have realised myself as I did them after surgery in 08. Anyway,I’m getting on with them now like a good girl!
Love to all here,
Sarahxx
Hi Sarah
good to see activity on the thread. Think I’ll send some pm’s later to see how every1 is as I’ve been worried. Thanks for the anti d advice I need to see my gp anyway this wk as my sick note has ran out etc so I’ll ask 4a prescription. Gota be worth a shot. Sorry to hear about the lymphodema I have it mildly only found out wen getting a precautionary sleeve fitted for my flight to Canada.
Best of luck with your scans- how long will u wait for results? Fingers will be crossed for you. Really hope u manage to do something nice for ur birthday too. Lets know how it all goes I’ll be thinking of you xx
hope everyone is ok please post if you can
love tina x
Hello Ladies
Sorry not been on for a while, not had a laptop for a month and just got it back.
I’m 4 cycles into my treatment now and can’t lie the Gem part of the GEM/Carboplatin is particulary ruff, SE’s I feel very similar to FEC, plus going 2 weeks consecutively really taking it out of me. Think a scan is on the cards soon obviously nervous but need to know what is happening, no idea if surgery or further rads are possible at this stage, the not knowing does make me feel less in control (if thats possible!) so whether its good or bad news at least I’ll know.
Tina I know we’ve messaged each other, but hope it goes ok on Wednesday for you, we can compare SE notes please let me know how your doing.
On a positive note my hair is coming back albeit finely, funny how the little things can make a massive difference.
Claire x
Hi everyone!
Lovely to see you back posting again Claire! Sorry you feel so grotty at the mo. I would def. ask about having rads and any other info.you may need - you might feel a bit more in control if you know what’s planned re: treatment.
Tina - hope you are ok after your first chemo. I was a bit worried about amounts, weights etc last year when having taxol. Perhaps your bcn could answer your questions? Margaret - how are you? Scaryfox and Kelly too, how is it going?
I had some super news today about my scan - all clear!!! Thank God for Marie Curie and her radiation! I had to wait an hour for my onc. and by the last 15 mins was almost hysterical and throwing up with worry! The nurse offered me a "reception"ie sick bag, but I declined it! Was hovvering around his door, saw the onc. and he grabbed my arm and told me to “calm down, Sarah!” and that the results were good. RELIEF! I was holding Mike’s hand through this time and dug my nails into him so hard it was like when I was in labour. I hate losing control and apologised to everyone for my foolishness afterwards!
Thanks everyone for your support, best wishes,
Sarahxxx
Just remembered a sick bag is called a “receiver”!
That is fantastic news sarah :)!! Big congratulations. Enjoy being ned and get the champers out!! xx
Claire good to see you posting I will give you a ring over the next few days xx
Scaryfox, sandra kelly etc I am thinking of you often and praying you are doing ok. Please let us know how you are xxx
I started carboplatin yesterday feeling strangely normal today- long may it continue. Just hoping to god it works as everything seems a bit hit and miss whn it comes to tnbc Had a picc line fitted last week which was a nightmare but really saved me stressing yesterday so Im hoping it stays put and infection free for the duration as I dont think I could go through it again!!
Love to you all xxx
oh yeah meant to say its the anniversary of my primary dx today- cant believe I have been through so much since then and am back on chemo already. Its just so bloody unfair Justpraying I’ll be around to see some more xx
Hi,
I’ve not posted for ages, been in hospital for 5 weeks due to pleural effusions on both sides, which had to be constantly drained. I’ve now had bi-lateral indwelling pleural catheters put in. These are long term under the skin drains which I can manage myself at home.I’ve not got into a routine with them yet, but fingers crossed this helps with my problem.
I’ve been home for a week and this is the first day I’ve managed to get dressed. I’m feeling very, very weak and have lost about 1 stone,(now weigh 7 stone), which I’m trying to put back on. Difficult when my appetite is non existent.Dieticians keep encouraging me to eat snacks between meals, plus supplements, but I just don’t fancy anything.
I was supposed to be starting weekly Taxol, but my onc wont do anything untill I’ve recovered a bit first…in all honesty I don’t think I could face any more chemo at the mo.
I’ve been trying to catch up with everyone and wish you all well and I’ll post again soon.
Sandra x
Hi sandra
so good to hear from you but I’m dreadfully sorry to hear what a tough time you’ve been having. Great to hear ur back home after such a lengthy hospital stay. The chest fluid build up you’ve been suffering really sounds horrible + I pray the drains they’ve fitted can help relieve your symptoms + u will start to feel better very soon. Hopefully then u will get your appetite back + start feeling a little stronger + more able to cope with chemo. Which chemos have u had so far? I’ve heard weeklly taxol is quite well tolerated + side effects are minimal so hopfully once ur feeling a little better, ull be able to cope with the chemo. Big hugs xxx
love tina xxx
ps thanks for the pm’s Sarah, can’t reply on my iPhone but will go on pc at wkend + be in touch xx
Hi all!
So glad you’re back home from hospital - Sandra - but sorry you’re still feeling so yucky. Could you try build-up drinks ( from Boots or supermarket) to boost your weight and strength prior to attempting chemo.again? Fruit juices and manuka honey are also good and an alcoholic drink ( if you can stand the taste) all encourage appetite. I can perfectly understand your reluctance not to do chemo. - I felt like that towards the end of 18 (24 with breaks)weeks on taxol last year and I was relatively well and had plenty of weight on me (understatement of the year!). So, I would say that taxol (weekly) was a lot easier than the FEC I took early 08, but still not exactly a breeze. It was quite effective, though, and the taxanes are known to be strong and to boost performance of rads - which seemed to happen in my case - so very thankful I took it.
Tina - hope you are OK after your first chemo. Don’t worry about sending me a pm about carbo. dosage etc - I realise it wasn’t a very helpful article - after all - all this medical stuff is mumbo - jumbo to the layman (or woman!) You can only really ask your onc. or bcn. about treatment queries and your specific probs.
Hope everone on here is OK and coping,
Love, Sarahxxx
Hello everyone
Just introducing myself.
Dx of mets 29th December, lymph, bone and lungs but only just realised the meaning of the triple negative status. Just about to have my second EC tomorrow. Feeling a bit wobbly as I’m quite anaemic.
I posted on the Triple Neg thread as hadn’t spotted this one, and it was fairly low down on the list too. Hoping that it can start moving up the league table. I would love to get to know you all. Thanks Tina for pointing me in this direction.
Jo x