Wendy - I second your ‘best christmas gift ever - more treatment options!!’ Hope we get them in our stockings!!
Jaxette - Thanks for info! Ive tried to Google it, but think I have the wrong spelling as I cant find anything. Could you check please - thank you very much!! ‘geneaalsl’???
Hi Hope / Jo - What a coincedence, we also had our sons funeral on 23rd Dec!! It was all so tied up with Christmas that it is really hard to seperate the two! My son died on 20th Dec, 12 years ago. So, it is further away than your little one. Some how it does get ‘better’ as time goes by - not so heavy hearted when I think of him now. But it still is very hard, so my thoughts are with you too. As you say though, the thought that we will not be arround for our other children is just the worst thing you can imagine especially when we have had to say goodbye to a precious little one allready. (Sorry - i was trying to cheer you up - but prob made things worse - its just all PANTS!!) Lets hope for more treatment options NOW!!
Lulu - Love the hair! Wish I had the guts to do that!! LOVELY!! Xx Xx
Tina - DO hope all went well yesterday. Great news about funding. PHEW!
Sandra - How is just the Avastin in comparison to the Avasin and Taxol? I always thought it was the Taxol that was heavy with the SE - but never had one without the outher! Hope you are doing OK on it!
Hi LavenderLassie, Laura and anyone else!!
Rachel - I do hope you prove the Dr’s wrong. I hope you have a good Christmas and then look forward to Spring. Gentle hugs Xx Xx
Hope you are all keeping warm! Im just about over the trauma of Marcus loosing the X factor!! Little Mix were very good on the night! My daughter is coming with me for chemo on Monday. She wants to see what happens. She is 16 so im sure she will be ok - but still want to distance her from it as much as poss! Anyway, she is seriously thinking of studying medicine - so will be a good experinece for her! As long as she can find her way to the coffee shop we will be ok!
Hi
Sadie - sorry to hear you too had your sons funeral same day as ours - does all get mixed in with Christmas. Our son died 24 nov but was a wait for post morgen etc.
I am praying we all get more treatment options soon -I get results from marsden in New Year if I have any receptors for the trials including the androgen receptor. They are phase 1 trials but non chemo and target a receptor if you have one. Means weekly trips there though.
Hope everyone has as good a Christmas as possible, the kids make it and this year will be the first time my older little one at 3 knows about santa. The older two are over the fantasy sadly and baby not yet aware what it’s all about! I was told I would not be getting any presents as Santa only brings presents to children which did make me smile.
Love jo x
Hi everyone-I was watching the news and got the info on the tv so then I started googling and came across it accidentally almost. Maybe if you put in AMERICAN VACCINE or AMERICAN VACCINE TRIAL 2012 -sorry i’m not much help! It may even be on th BBC news website for yesterday? I’ll keep trying and post on here if I can find it.
Hi everyone
how is everyone feeling? Hope you are all coping ok Special hugs to jo, sadie + rachel, all dealing with very difficult anniversaries at the moment. Thinking of you all ladies xxx
laura, Lulu, Wendy, Sandra, hope you are doing ok + are looking forard to Christmas despite all the anxieties we are facing xxx
I’ve been a bt quiet for a few days because I’ve been feeling a little better + have been keeping busy getting stuff sorted for Xmas + also had a workman in doing dans room. It’s pretty much done now + looks amazing! It’s really cheered me up (but tired me out)- Just looks like a bomb has gone off everywhere in the house so a busy weekend ahead! Feeling much mre normal but exhausted by nightime + in bed 9ish.
Neck/ clavicle nodes are giving me jib at the moment, really sore + swollen. Keen to start a new treatment asap. Have decided to seek referral to a private onc thrugh our private healthcare. Saw my onc on weds + she ruled out avastin unless I have it with weekly tax, and even then we would have to apply for special funding. She is also doubtful with regards to eribulin funding, as I don’t fully meet the criteria. So I decided today to bite the bullet + go private. It would be foolish not to- I’m very lucky to have this option I know, so I will have a private consultation and take it from there. I am going to push for capecitabine with avastin as my 1st choice, as I think avastin will lose it’s licence in the uk soon (already has in the states), so I want to get on it now before that option is taken
away from me. Ideally, Eribulin will then be my second chemo in line. If this plan comes off, I will get to keep my hair for a little while longer… Hope my new onc is cooperative lol!
I haven’t had a drink since my last scan results but I’m going out with hubby Sunday eve + I might just have a cuple of drinks if I’m feeling ok.
Right off to bed now, I’m completely wiped!
Love to everyone, Tina xxx
ps Hi to Sarah too xx
Hi all will catch up after weekend been so much going on will explain later I just wanted to post this for Tina hope it helps tc Laura Breast Cancer Drugs rejected by NICE during 2011
Added to this, the Sunday Telegraph recently reported that Accuray (who make Cyberknife), offered to install Cyberknife, and let the NHS use it for two and a half years, free of charge (after which the NHS would be able to buy it interest free), but the Govt declined (even though the Govts expert committee - the NRIG- said it could save in the region of 3000 lives per year).
Just can’t understand why cancer patients are not getting together and fighting this?
Hi Tina and everyone else. I too am looking at eribulin next (done capecitabine, parp trial, gemcarbo and currently on taxotere) - not sure who you’re next oncologist will be or where you are in the country, but if you get a really good one, they should be able to access eribulin on cancer drugs fund with relative ease.
Also there is apparently a new trial coming up which looks good for triple neg, at the Sarah McKinnon research centre (I think that’s what it’s called) in London. My onc has referred me to the trial director to see if I’m eligible. About an 80 pc chance I won’t be but at least I’ll be on his books then in case anything else comes up. Good luck x
Hi francesca how are u getting on? Have often wondered how you are I think the problem with specal cancer funding is the ever changing criteria! Each area has it’s own strict criteria (I’m in Liverpool) + these are updated monthly! My onc showed me the current criteria for eribulin + it states the patient must have had at least 2 types of chemo for metastatic disease. I have only had carboplatin (albeit, twice) so onc thinks my request may be rejected for that reason. Obviously if I were to try something else then reapply, the request should be successful. It pees me off that I should have to consider going private but if it gives me access to a wider range of drugs I will give it a shot. Have you ever discussed trying avastin? I’m hoping to have it with capecitabine.
Would you mind keeping me posted about the trial at the marsden please? I have been there before + have enquired about a new parp trial for brca negative patients, that they are planning. I might contact them again after Xmas.
Good luck with the tax- it’s nasty in terms of se’s but it worth it if it works
take care x
Hi Tina, it’s not actually at the marsden (if you’re talking about this new potential trial?). It’s at something called Sarah McKinnon research centre, something like that anyway. If you google leading oncologists group in Harley st, they have links to them. My oncologist is involved. I had my parp trial at UCH in April this year and have since heard Parps aren’t all they were cracked up to be which is a shame but I know there has just been a big breast cancer mtg in San Antonio that a lot of the world’s experts were all at and apparently there was some interesting stuff coming from there so fingers crossed.
I think eribulin is next for me, then avastin combined with taxol (hence we went for taxotere this time to ‘save’ the taxol for when we needed it). You’re right, it’s a lottery, I just feel v lucky I have my oncologist who I have loads of confidence in. She seems to be able to access a lot of things and people!
Francescap29 - Thx v much for the link! I will look it up…
Tina - Good luck with the Private consultation! WHen are you seeing them?
Laura - I think it is all very complicated and channging all the time! Worth knowing about all the options though and what people have been told.
LuLu - Glad you are feeling better now nd looking forward to Christmas!
Hope / Jo - I do hope this next week is Ok for you. When I light a candle for my son, I will think of yours too. Do you mind me asking his name? My son was called Fraser. Hugs to both our little stars!
Hi Lav Lassie - hope you are OK and looking forward to Christmas!
Rachel - Hugs and Happy Christmas to you and your family.
Wendy - Hi nd Happy Christmas to you too!
Hi to everyone else!
Ive got Chemo tomorrow! Not looking forward to it at all! Im all ready for Christmas as will not be able to do anything after tomorrow. As some of you know, it is the Anniversary of my son’s death on 19 / 20th and 3 years from my Primary diagnosis too. We always spend the day as a family and DO something together. However, OH has arranged some work away so he can get his Ipod installed in his car later in the week back here!!! I am really not very happy about this! It is a difficult day esp this year as I will be feeling really unwell - but he does just not see it! I will not ask him to alter it - but wish he had different priorities sometimes!! Feel better for sharing! Thx for ‘listening’
Hi all sadie sorry to hear about y oh moan away so sorry to hear of y loss I hope chemo goes as well as can do. Tina gd luck with onc it will be intreasting to hear wat they say hi to everyone else hope y doing ok fq big hug to you a update on wat been happening as u know I had a cough anti b a inhaler nothing worked I had a bad pain in my shoulder blade so gp sent me for x ray but thankfully all ok he did say my mets were still stable but not getting my hopes up as I don’t no how gd a x ray is to a ct scan I’ve had a lot of neck head pain so they are gona scan them on the 29 th already convinced my self I’ve got skull mets god u no wat it’s like but here’s hoping. My little boy as not been well either he had a red patch on he’s head and a lump behind he’s ear and neck had a lump on it gp sd lymphs were swollen because of red patch not sure wat it is but he guessing either shingles or a virus wonderful just wat I need on top of everything on anti b so hoping will settle so been busy at my house tc everyone love Laura x
Laura sorry you sons not well especially coming up to Christmas… Good luck with your scan on 29th will be keeping fingers crossed it’s something innocent like stress headaches or muscular pain… Glad your mets appear stable… I don’t think they would do stays if they didn’t think they were beneficial.
Sadie sending much love for a difficult few days for you… Sorry your OH is being a bit clueless, think that’s a common man problem! I’m sure you could really do with his support on Frasers anniversary especially as you will be feeling poop from Chemo too… Big hugs.
Francesca I hadn’t heard that the PARPs werent as good as they first thought… Are you a mutation carrier? I’ll be interested to hear what cones out of San antionio… Hope the tax is going ok for you.
Tina I your new onc is able to give you more options.
Not much to report here… Feeling better now so should be fine until next Chemo in 29th… Got my halfway review appt with onc tomorrow… Then I guess I’ll need to get some supplies in for christmas.
Sending much lovely to all you lovely ladies
Lulu xxxx
Hi Lulu, I am BRCA-1, yes. Parps didn’t do anything for me and as far as I can work out the results so far haven’t been great (I went to a really good conference at the Royal Society of Medicine a couple of months ago on secondary breast cancer where they were talking about parps then) but I guess that’s the point of research, they take it back to the lab and fiddle about with it. Let’s hope so anyway.
Merry Christmas everyone
Hi all
Thinking of you sadie and Fraser, as know how difficult anniversaries are. Our son was called Christopher and was just 9 days old and died from sudden infant death. I will pray for your son too on 23rd when we both had funerals.
We are holidaying but so tired hard to be out all day. Will there but energy not ! Is hard work with 4 kids but also keeps you busy. The trials I am waiting for are at marsden and being tested for androgen and other receptors, are phase 1 trials. Hope your son gets better Laura.
Hope consultation goes okay Tina
Love jo x
Anniversary of my sons death. He was five months old. I miss his magic smile and wonderful giggle. He was one of twins. His precious brother has a shadow nd tonight Im surrounded by candles struggling in chemo fog.
sadie im sending much love to you today sweetie… such sadness especially so close to christmas must also make his twin all the more special.
sandra i was lucky my last chemo was on the 8th and my next is the 29th so im on my good week for xmas… mine is three weekly… dont think i would be well enough to have it two weekly… hope your gonna be ok for christmas.
jo thinking of you and christopher too… be interested to find out more about the trials too.
francesca sorry to hear the parps werent very effective for you… im brca2.
i had my review appt with my onc yesterday and he confirmed my recurrence is stage 3 but said there is so little information he couldnt give me a real prognosis just that he hopes this regimen of chemo may still be curative so thats quite positive… he also thinks my side effects are bit too severe and may reduce the chemo after the next cycle to see if it helps reduce the shortness of breath, faintness and palpitations.
had a good day out christmas shopping with my mum and im very tired now but was a really enjoyable day.
Hello ladies
sadie- sending lots of love + cyber hugs your way at this difficult time. I’ve said it before but it seems some people have far more than their fair share of sad times Hope ur not feeling too rotten after your chemo? Fingers crossed ur feeling much brighter by the weekend xx
jo- u too hunny. Big hugs at this difficult time. Where are you holidaying? Hope u enjoy it despite the tiredness. Good luck with the trial- is it for the prostrate drug (ameriterone?). I read up but it said over 45’s I think+ post menopausal, and I’m neither! Xx
rAchel- how are you feeling? Hope ur ok + well enough to enjoy Xmas with your family xx
lulu, hope your feelin good this week + have a wonderful Xmas Sorry to hear about ur se’s- hopefully the Dose reduction will help. Got everything crossed for a curative outcome xx
Sarah- haven’t heard from you in a while. Hope u and yours are well? Have a fab Xmas xx
laura- hope u + ur son feeling better? Good luck for scan next wk. Have a nice Xmas xx
sandra- how are you getting on with just the avastin? Great news about your hair growing back + ur nails healing too. Have a great Xmas xx
wendy- how are you doing ? Hope the gemcarbo still working wonders Have a great Xmas with ur little man
xx
some good news from me- had special funding approved for the eribulin on the nhs. So decided to hold back on using the private health cover for the mo. I’m havin my 1st infusion next thurs. It’s 2wks out of 3 + there’s a good chance I will lose my hair BUT gota stay positive! If it keeps me here then it’s so worth it! On a less positive note, felt unwell yesterday + had a high temp so ended up in a+e last night. Was told I have pneumonia (!) coz shadow on left lung, was pretty upset + worried, then a few hours later another doc said he’s unsure but prib just a chest infection?!? Noone seemed 2have a clue so ended up discharging myself at 3.30am. Onc concerned today so on more anti b’s now for a week + had iv anti b’s last night. Great timing (not) but hopefully will be ok by next wk for chemo. Feeling shattered, had workman here for a week doing dans room + new floor in bathroom (had a leak). He finished today so I’m looking for a duvet day tomorrow!!
Had a big upsset at the hospital today, the chemo nurse who nearly killed me the other week (ignoring the allergic reaction) was offhand with me last week and really nasty to me today. I ended up in tears+ she was denying what she’d said. I think my reaction showed her up a bit coz she didn’t have a clue + even tho I kept smiling + said nothing (I even took them a lovely tin of biscuits in today!), she now seems to have a real problem with me. Told my onc who was really embarrassed but I’m going to make an official complaint next week. As if I haven’t got enough to deal with?! Hardly the way to deal with a terminally ill patient- a but of compassion + sensitivity wouldn’t go amiss!
Anyway, rant over. Thanks for listening. Hopefully tomorrow will be a better day.
Ladies wishing you all a lovely Xmas+ a new year that brings us all miracles, and failingtgat, lots more effective treatment options+ happy times
love to you all
tina xxx
lavender- wishing you a lovely Xmas too. Thanks for your support on this thread xx
Special hugs to jo, sadie + rachel, all dealing with very difficult anniversaries at the moment. Thinking of you all ladies xxx
Hope ur not feeling too rotten after your chemo? Fingers crossed ur feeling much brighter by the weekend xx