Hi Jo, delighted funding through. Exactly the same treatment as me. I. changed my zol acid to week 2, when I do not have the avastin. Was easier to cope with rather than all three drugs on week one. Mine takes 6 hours as pharmacy so slow!! Hope this week goes ok!! Do let me know. Hugs Xx Xx
Hi Tina, pls don’t worry about personals. Sometimes you need to recieve support nd not worry about giving it!! The A&E idea is a v good one. There will be an onc on call who can access your notes nd scans. Then change onc!! You deserve better. Glad you had a good time with your friend nd OH.
I’m off to watch a netball tournament! Need to take a chair as shattered!! Ho Hum!!
I agree with the others on here about some direct and immediate action! I remember last Autumn when you posted and mentioned her “doom and gloom” approach to your prognosis which was unbelievable and unacceptable. You deserve better, as we all would. Maybe the GP could help, as I think Nicky mentioned. It’s a difficult one as maybe you need some advocacy to fight your corner in an official sense. I’m struggling a bit to think of something, I just wanted to help! We shouldn’t have to go private to receive acceptable care, but would it be an option? I really hope you can get to see someone soon.
Love to all and welcome to Rachel’s lovely baby grand-daughter! Been in hospital last night with suspected blood clot on lung - turns out not to be so, but GP and my cancer hosp. will need to liaise over scans as a cloudy area is showing on lung from x-ray. Hoping it’s “just” the rads damage mentioned before by onc. I feel like a cat who’s used up most of its 9 lives these days! Hope you are feeling better, Sadie and love to Jo, Rachel, Laura and Linda. Kelly too - are you coping? Hi to Lulu and Sandra too.
Hi all
Sorry Tina you are struggling. I would leave a message and email Cons to ask to call you. I know I never get results til after weekly meeting but always get seen day after.Onc will have seen so hoping means not worried?
Hopefully you get seen this week. Is so stressful waiting some understanding of that would be nice.
Sadie -are you carrying on tax ? My onc mentioned prostrate trial too if my scan is stable at end of taxol scan. They test tissue for androgen receptor and if present given prostrate tablet medication. Pray I’m eligible but scan not til after 4 more weekly tments.
I am still recovering from last weeks as think all painkillers reacted with chemo and I was out for days. Liver pain settling again. My hubby went away for 4 days and I ended up at hosp all day with youngest 14 month old with upper resp infection and giving inhalers thru night. Had to get friends to have 3 yr old. Am shattered and now full of cold again so doubt chemo tues ? I always avoid hosp but couldnt with baby. Mum in hosp all week and feeling we need a break of health as a family.
Love to you all
Jo x
Hello ladies
thanks again for all your support. I have decided to change oncs + will get the ball rolling tomorrow…
On a more positive note, I booked a trip to Disneyland last nite We are going early hours this fri + heading home Monday nite. I want to take dan whilst I still can + before the really cold weather sets in. we will do some sightseeing in Paris too as we are going by car. Sadie- I will get my bcn to sort a letter out to get me that queue jump pass you mentioned
Rachel- many congrats again on the safe arrival of Bethany. Hope everyone is doing well x
jo- great news on the avastin funding. Hope the treatment has a really positive effect x
Sarah- so sorry to hear you’re still suffering+ that you have anxieties regarding the cloudy area on your lungs How awful for you- really hope it’s rads damage and they can put your mind at rest very soon. I think mets tend to appear as nodules/ solid mass so fingers crossed yours isn’t bc related. Do keep us posted. X
jo/ hope- sorry your having such a tough time You and your family definately deserve a change in fortune- hope it happens very soon! Seems everyone knows about this prostrate drug but my onc hasn’t mentioned it surprise surprise! Best of luck with the last few treatments x
hello to sadie, laura +everyone else on here xx
will be back on later
love tina xx
Hi Hope / Jo - My ONC has not metioned the prostate trial, but I will find out some more about it. Ive got scans on Monday, results the following monday and a meeting to discuss…what next. So im really not sure at the mo. Getting very mixed messages from my Registrar who I see before each treatment. English is not her stong point and communication is not easy! However, I see my ONC for the results. Keep going with it - I know how hard it is every week! I try and fix my mind on something to lookforward to every day - even a hug from the kids after school! Sounds like all your family need a bit of a break! My OH has been in the USA this week, parents and inlaws in France! It makes you feel on your own - but we just get on with it and cope!! I hope your cold goes soon and your bloods are OK for the next treatment.
Hi Tina - SO glad you have a break this weekend! Enjoy! I hope changing your ONC is smooth and they are not rushing to see you cos scans are OK. You never know!!
Hi Sarah - A night of worry on hospital food!! Oh what a shame! I hope they get to the bottom of it and it is ‘just’ rads damage!
Hi Jo (WorcesterJO!!) Ive PMed you! Hope you are having a good weekend!
Love and hugs to all who read this - we are AMAZING!!
As you might be able to tell, ive picked up! I had a long chat with my support worker from the Hospice and admitted for the first time I was scared and really dont want to leave my children! She reassured me that im doing everything I can to stay as long as I can. I did feel better after. I think offloading to family / friends is really difficult as you dont want to upset them or spoil the day as each one is so important! So having an ‘outsider’ is great. She is coming again the day after my scan results - to have a coffee and a chat! Do many of you wonderful ladies get Hospice support? I also have Reflexology once every two weeks from them - I really enjoy it!
Hugs and smiles to all…
Off to research the Prostate drug and Tomotherapy/Cyberknife incase either may be of use to me!
Tina,
Great plan re Disneyland and Paris!
Popping in to wish you all the best in getting a transfer, you deserve someone better than this, you all do. If an old bat like me can get the support I have had, you young ones should have it umpteen times more.
Ten weeks suggested for getting a scan result,Nicky??? What are they on?
Glad your GP fought for you. My GP at the beginning said “I am here to bang the drum for you any time you need it”
Sarah, a friend of mine had radiation pneumonitis as a result of his rads, and has improved a lot with time and treatment, so fingres corssed for you re that. I have had a different kind of pneumonitis for several years now, helped dramatically by steroids and other stuff.
I started reading this thread when I thought I had bone mets, and felt I needed education about available treatments, I see you need training in onc fighting as well! My scan eventually showed arthritis, scan done within a week of asking BCN about symptoms, results took 3 weeks with all the Bank Holidays and that was long enough to wait.
Keep On Keeping On,
Lavender
xx
Hope you get some joy with the onc. situ. Tina - we are all rooting for you on here -I mean that!
Glad you’ve picked up, Sadie - we miss your sunny vibes. It was good to chat to your support woman. Love to your kids too.
Jo - you are having a terribly tough time, I really hope you can have a break from it soon. Sorry about your Mum. We are all here for you.
Lavender Lass - thanks for your input - I did see something about radition pneumonitis on here before and wondered about it. I love your sign-off line “Keep on Keeping on”! Is it from the Gladys Knight song ?- I love that song! Thanks for your kind wishes, Lulu - best of luck with your treatment.
Hi ladies
The support on here is bril. I hope all goes well for you Tina this week- thinking of you, and hope you have a bril time in Disneyland .
Hi to all ladies on here and hope your feeling ok.
Have been suffering from awful nose bleeds all thro the day for last few weeks and sore throats too. On weekly avastin n paxel was wondering if any one else is too? Sadie you’ve been on avastin, did you suffer from them too? I m having half way thro my treatment now.
As lavender lass said Keep on keeping on, luv that
Luv n hugs to you all
Sandra x
It wasn’t Gladys Knight I got it from but from another message board - maybe they were Gladys Knight fans? I know a lot of her stuff but not that one having googled it.
Shows there is nothing new it is all recycled!
Yes, it’s a great song - I have it on my “Forrest Gump” CD - which is totally brilliant too! Kind of like “I will survive” in tone, but with more of a thumping disco beat - gotta love the oldies!
Scans yesterday! They refused to use my hickman line for the contrast. I gently pointed out to them that they were going to use it! And guess what, they did!! Last time had to get v stroppy with them and this time smiles and persistance worked! So now just crossing everything! Difficult to walk with legs crossed but Im sure it will help!!
Phone low on battery so will be back later for personals!!
I’ve stumbled across this thread doing a search for Gemcarbo and wondered if it’s okay to join in?
A brief background, diagnosed March 2010, secondaries Feb 2011 to liver, lymph and lungs. Tried capcitibine for 3 months but had further progression. New Onc tried me on Arimidex and Zoladex for 4 months, but lots of progression (my original tumour was only very weakly ER+)
On to Oncologist number 4 (I think, I’ve lost count…) She’s confirmed I’m basically TN when it comes to treatment and I’m about to start Gemcarbo next week.
My head is all over the place. I asked how long I had, everyone has been talking years up to now, and she responded that, if the treatment works, she hopes I can spend christmas with my little boy!
I keep thinking I must have misheard or misunderstood, but my lovely husband was with me and he heard exactly the same. I wish I’d never asked but at the same time, what happens if the treatment doesn’t work?
It’s all too much to take in. I knew it was bad news because a new lump has come up in my chest, exactly like my original BC diagnosis and have been feeling more tired, but I’ve put that down from spending 5 days in Disney and feeling a bit down.
Sorry I do tend to ramble on, I’ll finish off now, I really just wondered if I fit in here and whether anyone can tell me more about Gemcarbo.
Hi Wendy - a MASSIVE welcome! I am so sorry you find yourself here - but HELLO! Pls do not feel you are ‘rambling on’ - we are here to listen (well - read!!) and help where we can. I cant help with the drugs as Im on Taxol / Avastin but im sure others can. Others have been given very poor prognosis and are still here WAY BEYOND so, pls dont take what your ONC said as fact! All sorts of things can happen! Hugs (XXXXX) and more hugs (XXXXX)
FQ - Thx for crossed fingers! Hope it is not too inconvenient for you!!
Hi LLassie - Must watch that film again!! Its been years!!
Sandra - I did suffer from a sore and a bloody nose (not dripping, just tissues full). It has got a bit better but still feels uncomfortable - however, less blood!! (Lovely conversation!). Sore throats too - but again - better receintly! I have had two extra weeks off last cycle cos of holidays so maybe my body has recocvered a bit! Hugs!!
Hi Sarah68 - Thanks for your love!! Hope you are OK.
LuLu - You ok?? Do hope so!
Tina - Hope you are moving forward with your ONC change and packing for the weekend!!
Love, hugs and smiles to everyone. I hoping to book a place on the Birmingham course. Anyone else close to Birmingham?
Hello ladies
just a quickie to update u + to welcome wendy to our thread
wendy I’m really sorry to hear ur having such a crap time + have had progression + a grim prognosis. Please try to stay positive because these oncs don’t have a crystal ball + noone truly knows how long we have or if a particular treatment will work. I was told last sept that I’d be lucky to see Xmas + thankfully, I’m still very much here. I see you have a little boy- I do too. He’s only 2 + I’m determined to be here as long as poss for him. We too are goingto Disney at the wkend! Are u another youngie then? I’m 33. Wishing u all the best with the gemcarbo- I’ve had carbo on it’s own + found it relatively easy in terms of the se’s. More importanly, I had a fantastic response, after being told my bc was ‘most probably chemo resistant’. Fingers are crossed you have a great response too. Keep in touch x
sadie hope ur not too stressed over the scan. Got everything crossed x
lulu is it tmoro u have ur surgery? Will be thinking of u + hoping it all goes smoothly.let us no how u are as soon as ur up to it. X
Sarah any news on the scan query? Hope all is good x
well my onc has been informed about my wish to swap. She was ok about it apparently, and would u believe, she has suddenly found time to see me tomorrow to gi e me my results + to arrange the transfer!! Funny that when she refused to see me tomorrow, when I pleaded last week. Anyway, I’m standing by my decision + will simply say I’m not happy with her palliative approach to my care- I have alot to live for + I want an aggressive approach. My scan had been reported on but hadnt been signed off + verified today, so my bcn was sworn to secrecy. She did however hint that the unverified report was much more positive than I am expecting so that’s calmed my nerves a little. I’d rather not hav2 see the current onc now but will be an adult about it! Will give u my news tomorrow…
Love to everyone on here- rachel, sandra, lavender, laura, jo + anyone else xx
spk tomorrow xx
wendy i hope your treatment works wonders and like the others have said the oncs really have no idea how long somebody has regardless of how good or bad the response… im sure there are still lots of options… not sure why they decided to try the zoladex/arimidex combo… my primary tumour was a true triple neg but my recurrence is weakly ER pos… when they say weakly its normally between 0 and 1% or 10% maximum so even if hormones do help they would only be effective on a very small proportion of the tumour… but i guess tehy were just wanting to make sure they had crossed everything off their list.
and dont worry about rambling on we all do it and we are all happy to read and support you.
tina that sounds so promising hunny… fingers are well and truly crossed.
sadie hoping for good news following your scan too and well done for standing up for yourself… i plan to be adamant about a picc or hickman this time as my veins are mangled.
had my pre-op today all went ok… and surgery is on thur… not feeling too anxious… Yet!!
dont know how long im gonna be in yet cos he doesnt know if he needs to cut this big vessel in my chest as the tumour is on either side so a wee bit anxious about bleeding and drains etc… but my biggest fear is post op nausea and vomiting i usually feel terrible but was written up for lots of antiemetics.
Lulu - just to add to what you said just now - I am weakly er+ only and have femara. The onc. told me it’s worth taking it even for low amounts of er receptors and on the US site it was more positive, saying that it just meant it would take a bit longer to chip away at a tumour and you were less likely to become resistant to it in the long term.
Love to all awaiting scan results. Tina, that does sound as if the bcn knows something positive. Haven’t heard yet about the 2 scan comparisons, but feeling fluey again and will have to miss the meet up in Cardiff tomorrow, which is annoying. Hello to Wendy and good luck with the new treatment.
We are going early hours this fri + heading home Monday nite. I want to take dan whilst I still can + before the really cold weather sets in. we will do some sightseeing in Paris too as we are going by car. Sadie- I will get my bcn to sort a letter out to get me that queue jump pass you mentioned 
How awful for you- really hope it’s rads damage and they can put your mind at rest very soon. I think mets tend to appear as nodules/ solid mass so fingers crossed yours isn’t bc related. Do keep us posted. X