Hi,I just wanted to wish Tina all the best with her rads appointment today. xx
Hi everyone,
Still here and coping ok 2 days since my abraxane…
Kelly, abraxane is the chemo (alternative for those alergic to taxol) and avastin is a non- chemo drug, which works by starving tumours of a blood supply cos it stops new blood vessels forming. Problem with that is that it slows healing in the body in general, and can cause bleeding etc.
The pain in my chest is another tumour, which while it hasn’t shrunk yet seems to have stopped causing pain… For the time being anyway. Lucky considering my allergy to morphine!
Margaret, no way are you a wimp having counselling, you are doing something brave and positive. I had counselling after both primary and secondary diagnosis, I thought it was offered to all cancer patients. Very useful provided you get a good counsellor, if you don’t click with the one you get just ask to switch. Best of luck with everything…
Good luck Tina for today, hope everyone else is ok x
Hi all
Havent been on for a little while so just wanted to say hello. No chemo today, everything too low and rather than defer they are going to omit this one. Strange really as was dreading going but then felt terribly disappointed when I couldnt have it, they cant win!
Welcome to the thread Scarylady, goes without saying wish you didnt have to join us.
Scaryfox, sounds like you’re getting there, have been thinking of you and hope all continues to go well
Sandra, hope you;re feeling more comfortable and the chest drain went okay for you, again been thinking of you.
Good luck for today Tina and many, many happy return for tomorrow.
Margaret Im considering counselling too, havent had it before but as you said feel I need to vent somewhere exactly how Im feeling and try to get on top of my mounting fears, as Scaryfox says if you dont immedaitely click with them I guess you can always ask to switch. Where do you go to ask for support, ours is at the hospice which is taking some getting my head around as I always (wrongly) associate that with bad news.
Hello to Dianne, Claire and Kelly and anyone Ive missed, hope youa re all doing okay.
Debs xx
Me again, Im so forgetful, I came on to leave a note for Sarah68 and forgot all about it! Sorry.
Sarah, I was going to have a private BRCA 1 and 2 test too, but when I went to Marsden last time the guy said he would try and get me onto a genetics research trial. Wasnt really sure what he meant even though I was nodding my head all the way through. Anyway I got sent the form re family history, we have a very small and unfortunately dysfunctional family where nobody tends to keep in touch so I had no idea whether anyone further afield has been affected, also we are very short on females. I filled in as much as I could but it wasnt much at all. Anyway yesterday a lady from the genetics research trial contacted me. The first thing they do is check BRCA status and then you remain on the genetics trial. She is sending me all the gunf so when I get it I will let you know as maybe thats an option you could look at to rule out BRCAs, might be barking up the wrong tree, but will see how it goes.
Debs x
Hi all
Thanks for your continued support.
As to Counselling I suppose I am pretty lucky as in the grounds of the hospital i am being treated at (Mount Vernon Hospital - Northwood) is a unit called the Lynda Jackson Cancer Centre. They have so much info as well as services including complimentary therapies ie indian head massage, aromatherapy, reiki, and my favourite reflexology. In addition they have meditation sessions twice a week as well as counsellors. In addition being jewish I am fortunate to be able to use the facilities of Chai Lifeline. They have a number of branches around the country.
Debs I agree the hospice whilst being a wonderful facility is not somewhere I would wish to go at the present time (I may need it in the future - but not yet).
I believe there is another organisation called The Haven (they have two branches) which offer all the above services.
The two other places would be to speak to your GP - they could certainly organise a referral to a Counsellor or ask your Oncologist or Macmillan Nurse. I am sure somewhere you could get help.
Good luck and keep well to everyone.
Margaret xxx
Hi to everyone here,
Sorry, buggered up my post!
Hi to everyone,
Thanks to Debs for info.re:brca gene test - it’s something I may need to look at in the future. However, reading post from Tina, I think, it seems to be limited to triple negs. and I’m actually weakly er+ and,I suppose,double neg the other ones, so I’m going down hormonal route still.
Saw my onc. yesterday and he says I will have have my ovaries closed down with rads soonish and then take another drug, Arimidex. Got my CT scan sooner than expected to check on effects of rads on lymph mets - next week or two - and then they’ll take it from there. Obviously hoping there’s not going to be chemo (capecitabine (?) before Christmas. Had max. dose of rads too Tina, so expect, if you are fair skinned, quite a lot of redness and pain. Still, it’s worth it if it works!
Kelly, hope you are feeling more positive today - at least you didn’t get any progression. Dianne, you seem like a wise and sensible woman! Also, Scary/Itchy/Scabbyfox, really hope the Abraxane does the trick this time. Best wishes to all,
Love Sarahxx
ps Claire, got your pm. I didn’t have any prep. before my PICC was fitted- wonder what the nasal spray is for?
Hi Sarah, the nasal cream is to reduce infection apparently, had the central line fitted today so feeling a little sore to say the least, hoping in a few days I will get used to it. One other thing I’ve had a MX and wondered if anyone had any experience of wearing a prothesis with the line in…is it ok? 1st chemo tom so will check with the hospital.
Lots of love to anyone starting ‘back’ on treatment.
Claire x
Hi Claire,
Just sent you 1 then another PM. No record of them on my sent messages, so not sure where they are! Hope chemo. went OK today. I had a PICC line not central, so can’t really help with your question.
All the best,
Sarahx
Hi Ladies
Just a quick post to seehow everyone is? All been a bit quiet on this thread 
Claire- didnt realise you were having a central line! Thought a picc was planned. Hope chemo went ok today thinking of you x
Scaryfox- how you feeling after the abraxan? Hope the s/e’s havent been too bad and you are doing ok and less scabby now x
Sandra- how are you since the chest drain? Hope you are as well as can be x
Sarah- any news on your ct scan? Do keep us posted. Fingers crossed that its all good news and you have a chemo fee christmas (Im also praying for that!) x
Kelly how are you doing. Hope you are not too down following your scan results. Seems carboplatin isnt the wonder drug we all hoped it was but at least there was no progression. Chin up x
Margaret and debs- how are you two lovely ladies feeling? Good I hope x
Hi to anyone else Ive missed 
Im a week into rads. Its prety full on travelling to clatterbridge every day and im feeling pretty crap if Im honest. Feel really exhauted by mid afternoon and have been to bed every day this week. Had a hectic birthday weekend though so that has probably contributed to my tiredness. Feel quite fuzzy headed so Im worrying a little (comes with the territory I guess) but my bcn has assured me that the rads will wipe me out especially having such a large area treated. The skin mets are quite nasty so Im so glad to be underway with treatment. Still hopeful that we’ll get to canada as planned at christmas but Im trying not to think too far ahead. We’ve justre-booked my little boys christening for 5th dec (we cancelled it back in april coz of chemo)and even thats making me anxious as its nearly 6wks away. Not surprising really after the nightmare appointment with my onc a few weeks back…
Look forward to hearing how you are all doing
Love Tina xx
Hi Tina and all!
Tina, sorry to hear rads are wearing you out… I think there is a special supplement you can take for this but can’t remember! Will have a look on the penny brohn website, think I saw it there. I found after rads my main prob was upset tummy, but probiotics fixed that.
I had my second abraxane on Tuesday, avastin postponed again as although my face has healed well my neck and chest are still scabby. Side effects from abraxane much less severe than the taxol - have sore tingly hands and slightly dodgy tum, but no more pain and itching easing off gradually. Just hoping it all doesn’t flare up again when I restart avastin next Tuesday! I have onc appointment tonight.
Oh and my hair kept landing in my lunch, so my husband shaved it off. My little boy said “mummy, you look like a big BOY now.” not feeling at my most attractive to say the least!
Wishing everyone a good day. Keep us posted!
Scary (and I really do look scary now) x
Hi everyone!
Glad to see a few more people back on this thread - I was starting to get a bit concerned! So pleased that your chemo. is kinder than your last horrendous exp. with taxol, Scaryfox. My son, who’s nearly 12 and has a mild form of autism has always been one for the unflattering comments about how fat, ugly and generally egg-like I have looked this year! I know he doesn’t mean harm, though, and is always upset when it’s pointed out to him. Mostly I just laugh!
I know what you mean about the rads, Tina. I was travelling to Cardiff everyday through late Aug. to mid Sept. which is quite a way from Neath, where I live. I was knackered from the outset and had to conk out in bed for naps most days. Still, hope it’s done the trick and hoping the same for you. I have my CT scan on Monday - what joy! Hopefully seeing my Onc. on Weds.
Love and best wishes too to Sandra - any news? Also, Claire, hope you’re OK after chemo. and not feeling too sick or tired. Love to Margaret and Debs too.
All the best,
Sarahxx
Hi everyone
Had chemo last Thursday and have had it rough - starting to feel human again.
Spoke to my trial nurse - well cried to her - and she has suggested I get counselling. In Leicester there is Helen Webb House for such things. She also said she would get a Macmillan nurse to contact me.
Hope you are all OK - radiotherapy regimes seem very bad. When I had rads it was a piece of cake but I am suffering now with pain in the ribs - can’t remember them telling me about damage 3 years down the line. Quite worried about rads on the neck though - what damage is that going to cause.
I have booked a holiday for just before Xmas - really really looking forward to it. I just hope I have enough strength to dodge the paint balls!!! I am exhausted just walking up the stairs.
Thanks for the info Scareyfox - good luck for Tuesday.
Thinking of you all - as you say = lets have a good day today.
Love
Kelly x
Hi everyone,
Remember me!!!
Warning…this is going to be a moaning post, sorry!!
I haven’t posted much recently, not been feeling too good. Chest drain wasn’t a success, apparently the fluid has thickened & is in pockets, a bit like a honeycomb. They drained 700cl, but then draining stopped,despite xray showing loads of fluid (& collapsed lung.)
My onc isn’t keen on doing anything further at the mo, just wants to get on with chemo, with the hope this will improve the fluid situation.It’s very uncomfortable, I can’t lay down as I feel as though I can’t breathe & the pressure around my chest is almost unbearable.Hence the reason I’m up at this time!
I don’t think the chemo is doing anything so far,I had second one last Fri and am just recovering.I feel really fed up with it all, one long grind of feeling ill, uncomfortable, no sleep, etc. etc.
I’m going to see my gp next week to have a chat & ask for sleeping & happy pills!!
Kelly, so sorry you too have had it rough, try & keep positive (pot calling kettle?!!) and focus on that holiday.
Sarah, Fingers crossed for good news for you next week, please let us know how you get on.
S/fox, how did your onc app go? Glad to hear se’s not too bad with abraxane & fingers crossed for avistan once you get started.
Tina, belated birthday wishes. How are you feeling ?
Claire, how are you feeling? I’m hoping se’s are minimal and your line has settled.
Debs,Margaret,& anyone I’ve missed, hope you are all ok.
Sandra x
I was happy (in a sad way) to find this triple negative thread. I was fx in June 09 and told that it had spread to my spine in September after an MRI scan. This Monday I’m going to find out whether it has as the docs think spread to my lungs and liver. Being TN is odd I’m very impatient with older Bc cancer sufferers who talk about one lympth node being “involved” (always thought that’s a strange euphamism as it makes it sound that a romantic entanglement!) and being hormone receptive as well. I want stand up and shout that I am the Manchester united to their sad tranmere rovers that I have 26 involved lympth nodes and a cancer as energetic as any 15 year old boy in search of vodka and girls. Despite this perverse pride I’m so frightened of the future and if I felt less I’ll and grotty I would spend the whole day wailing and gnashing my teeth. Has anyone joined the tn trial for chemo options? Please keep on with your posts. The description of looking like an egg during chemo made me laugh out loud when I realised that was exactly how I looked after mine and it was great to discover other women had put on weight during chemo as I thought it was only me. Please think of me on Monday afternoon. I don’t know any of you but I know that only you faceless people know what it’s like to sit in the waiting room waiting for your scan results. Best wishes.
All the best for tomorrow Rivka
LooLoo
Rivka, I will def be thinking of you on Monday, let us know how you get on?
Sandra x
Hi Rivka,
Your last post had a big impact on me - you articulated your feelings so well. I for sure will be one of the faceless people thinking of you tomorrow. Sending you a big cuddle.
Lynn
x.
Hello All,
Rivka I’ll be most definitely thinking of you at your appointment.
I’m doing ok after my 1st Chemo,(errghh feel like I’ve been pulled back into a timewarp last Sept when I started my original chemo) slight nausea but mostly bone and stomach aches, pins and needles and constipation…crack open the prunes!! My central line is ok although the insertion sight on my neck does pull a little, but I’m hoping once the stitches are out it will settle down a little, got no choice really its in for 3 months!! I must say it took all the hassle out of having my bloods taken and I was in and out of the chemo chair in 40 mins so its worth it just for that.
Hope everyone is feeling as well as can be expected.
Claire x
Hi Girls
Rivka- I am sorry to hear what you are going through. I will be thinking abiout you and keeping everything cossed that your scan results are clear. Do let us know tomorrow how you are x
Claire glad to ear you are (sort of) back in the land of the living!! Hope your recovery progresses quickly and you are feeling better soon x
Sandra- sorry to hear you are having such a tough time at the moment 
The chest fluid sounds a complete nightmare and you sound really uncomfortable and fed up, which is sad. Really hope they can get you sorted and more comfy soon- there must be something they can do for you x
Kelly good to hear you are feeling a little better after a tough chemo. the Xmas holiday sounds like just what the dr ordered. x
Hi to everyone else- sarah, debs, scaryfox hope you are all feeling ok
Love Tina x