Breast Cancer Now Forum

Hello all: Rob Bearpark here. I am using my wife's log in code as she was active on the forums a couple of years ago (you may know here as Millikins01). After draining nearly four liters of fluid off her lung she has rallied, so we have her for a little bit longer, although treatment is over and the cancer is now overtaking her lungs, liver, spine, lymph nodes and hips. I saw that someone reposted in this thread the message that I left for this vile organisation, but they continually remove it from their site. I fully understand they are in no way interested in the feelings or opinions of others, but as I am now posting in a community that I know cares about ALL victims of cancer I thought I would add to the message as I did receive a reply from PCA. I wrote back to them to them, but they have not bothered to reply to this second message:   I wrote:    On Thursday, I drove to the hospital to spend my last few days with my terminally ill wife, (hoping she had made it through the night) and wondering if I would be strong enough to tell my 7 year old daughter that Mummy was about to die. With this in my head, I heard news on the radio of this truly sickening campaign. What the hell was Ali Stunt thinking when she created this vile campaign other than  "Oh poor me, I have the very worse disease ever and no-one has ever or could ever suffered as much as me”. Pathetic and Sickening!!!! I have news for you Ali, other people are suffering too and more so now due to YOU! If you wanted publicity this much and didn’t care who you hurt then she should have used photos of Jews being murdered at Auschwitz, or maybe Princess Diana’s bleeding corpse, then compare survival rates against that. The breast cancer community is strong and numerous, and has been rightly outraged by this. It has always tried to bring all sufferers and carers together against the common enemy of cancer, not childishly attacking other victims. My wife is being killed by a particularly nasty type of breast cancer known as “triple negative”, which has far higher death rates than most other types. At no point have we or would we ever use this against other fighting their own battles. The website shows that this group gets support from State owned RBS and I am hopeful that the breast cancer community will mobilise to prevent further funding of an organisation so lacking in empathy and care for anyone outside of itself.   Oh yes Ali, my wife’s chance of surviving five years is 0%.   From: enquiries@panact.org To: robbearpark@hotmail.com Subject: Our heartfelt apologies Date: Mon, 10 Feb 2014 21:12:53 +0000   Dear Rob, First of all, I'd like to say how sorry I am to hear that your wife is facing her final days.  I can't imagine what you and your family are going through right now.   I would not want to burden you with our rationale for the advert but can I say it was not our intention to offend anyone.   We wish you all the best in the coming weeks and I do hope you have all the support you need around you. With best wishes, Natasha Pancreatic Cancer Action Chiltlee Manor | Haslemere Road | Liphook | Hampshire | GU30 7AZ   Tel: 0303 040 1770 (the cost of a local call no matter where you are in the UK) Web: http://pancreaticcanceraction.org Twitter: @OfficialPCA Facebook: www.facebook.com/PancreaticCancerAction Registered Charity No. 1137689    Dear Natasha    As to you understanding what I am going through, I do not know you own personal story or fight against cancer you have gone through, but by your reply it is clear that by continually defending your organisation you have no idea of the sickening offence that this campaign has caused to venerable people at their lowest point in life.   Please burden me further with the full rational for your deeply offensive actions (we both know I called it right in my original message- "poor me"!). As I said in that message, more cheap publicity and offence could have been achieved in many other ways, as long as you remember to say "it was not my intention to offend" after every one of the vile comments.   Most of my family have died at a young age of varying kinds of cancer, I rarely bother to remember the type, just that they died of cancer and in all cases, very quickly (my family survival rate over five years is 0%, with most dying within 6 months). I will continue to support  ALL victims of this horrible disease, not just the ones that have ruined my life and will never try to score points against others and claim I am the only one suffering.   However, some organisations , (such as yours) that look to divide the community, do not deserve funding. The tax payer backed bank RBS bank funds your organisation (at the moment!!!) and I am contacting them to see if they are happy with how their money is being spent.   I understand that as a worker of this organisation, you have no choice but to defend a policy that you realise is WRONG. I do not believe that any person willing to dedicate their time to helping others would ever agree to such a hurtful tactic to gain publicity. Furthermore, the publicity hungry founder of your group is not interested in the pain she has caused and gets others to deal with the thousands she has outraged. There are many other pancreatic cancer charities around that could do your work and I believe that money could be better used to help others rather than upset other cancer victims.   During my wife's fight I have met hundreds of sufferers of many different cancers. Not one of them has ever envied or belittled another's fight, just sympathised and understood what we are all going through. I am being supported by various organisations, none of which has treated me any differently because of my wife's type of cancer.    To let you know, in the evening I was able to inform my daughter of Mummies oncoming death, but it took longer than I expected as I lost control at one point and fell onto the floor screaming for several minutes. You need to be aware that I don't think that the news would have been any less painful to her or I, had she been killed by another primary, but I'm sure your organisation feels differently......   Regards   Rob     ... View more

Hi firstly you are not alone I promise. This is the hardest time to deal with when you first get diagnosed as everything feels like it is up in the air. once you get a treatment plan you will feel much better. I was DX last July with lung, lymph and bone mets. I am triple negative so chemo the only option. I was put on paclitaxel and avastin (possible the drug they are considering) It cleared the lungs completely. I felt like you that I couldn't breath & had oxygen at the start. it did stop working in april as lymphs popped up again but I am now on gemcarbo & that seems to be shrinking it back again. there are lots of treatments to try. definitely go for the DLA (PIP) as it is a good amount of money but suggest you get help with forms to make sure they are completed well & ensure you get what you are due. macmillian can help by phone or in person. also def go for the early retirement - it isn't about "accepting the enevitable" but about basically saying sod it & enjoying time with your family. I was with surrey county council & got a good payout just coming through now which takes all the financial pressure off. I have a 6 year old girl and make the most of everything. that was the hardest thing for me too - thinking of her growing up without her mum. but none of us know what is round the corner. in time you WILL stop dwelling on that & start "living" again rather than just thinking about dying things will ease off emotionally but also good to hear you are using what you need to get respite - diazepam is fab!!!!! I hope some of this helps you & wish you really well. HUGS XXXXXX jo XXXXXXX ... View more

Snap - I am 47 as well - we are just too young to be facing all this but hey ho - I would think NHS has a good pension scheme too? - I have to say my department have been wonderful & it was presented very much as my choice but it was a no brainer. I got a generous lump sum & reasonable annual pension as it is calculated at full amounts as if I had worked til 65. may be worth looking in to yours????? - as I say I was very happy to take that option as I only worked part time anyway & just couldn't see me being able to go back with the treatment I am on so better to bite the bullet & accept it. with my DLA & I also get child tax credits for my daughter as she is 7 I am on more than when I worked but of course the extra DLA pays for all the travel to hosp, parking, heating & all my supplements etc. now I can relax & just enjoy my time especially in my new house - we have a much bigger garden & even a greenhouse so i can fully embrace my new role as a "pensioner" hee hee. A pipe & slippers next methinks!!!!!! ... View more

Hi sarah I don't know if you are already claiming anything but I claim high rate disability living allowance (DLA) - changed to personal independence payment PIP and if you get the high rate mobility & care that is about 550 per month plus contribution based ESA worth about 440 per month after sick pay ran out & if you have paid NI before you get that for a year then it goes to income based which is basically means tested like income support. definitely talk to someone - macmillian are very good for helping you fill out forms etc to make sure you get what you are entitled to or give them a call - you have to be so careful how you do it to make sure you get what you are clearly entitled to. or also if you have a local hospice they have people there who can help as well - they are so used to all this they know what to put down - we tend to underplay things sometimes - It has made a huge difference to us getting the money we need. I have now taken early retirement from work as the deal from local authority was too good not to and means I can spend all my time with my daughter & husband rather than at work. they prob don't like doing ops if they can helkp it cos then you have to recover etc but I trust they will do what is best. I have now changed my chemo after 7 months on paclitaxel & avastin as it stopped working so I am now on Gemcarbo - much harsher as I get a big whammy dose of carboplatin once every 3 weeks which floors me frankly! I have sort of resigned myself to being on some form of chemo indefinitely now for as long as it works. thankfully my lungs remained clear after paclitaxel shrank it all it is just in my lymphs & bones now so it did do it's stuff just sadly stopped. Hope everyone is doing OK - I am hopefully finally moving house in 3 weeks time - can't wait. have lots of help & packers etc so I shall sit on the sofa & direct all the activity ... View more

That's fab news sarah. wonderful to hear XXXXXXXXXXXXXXXXXXXXXXXXX ... View more

Thanks Sarah - As I say the taxol worked well for me til now but there's no reason to think it will stop for you - we are all different & it really is down to how each individuals body reacts & responds. Perforated septum sounds nasty. I do suffer from a sore nose & some nose bleeding but so far septum is intact. luckily no serious side effects like blood pressure rise etc - don't know if they will keep me on it now but will find out in a few weeks I suppose. will stay on it at least until scan results & next ONC meeting in 3 weeks anyway so I just need to try to push things out of my mind until then. big hugs to you & thanks - having freinds on here does help us feel less alone talking to others who truly understand XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX ... View more

Thanks Nina & Nicky - I so appreciate any responses I get as I just feel very scared & alone but I know I am NOT! - If I can just buy myself some more time with my wonderful family and friends that is all I want - well of course I do want the miracle but hey don't we all. being triple negative just feels like the death sentence right now - everything i read 7 see about it says - "This agressive form of BC" "Very hard to treat" etyc etc & it scares the S*** out of me - But I know you understand that part. I have to say my OH & I have spent the day sorting out our mortgage, conveyancers, MOT for the car & other positive things for our near future as we are moving so that felt really good to focus on & I am trying my darndest to stop thinking about the scan & results etc until I have to & know what they say but it isn't easy. I just can't stop the massive feelings of guilt I feel for putting everyone through all this - just like I felt when first diagnosed. They keep telling me it isn't my fault & although I know that really it is very difficult not to feel like this as it is because of me that all this horrible upset & emotional horror is happening. I really do generally stay very positive & get on with things. I have coped very well on chemo & still manage to carry on with life apart from the odd days/times when I get exhausted & have to rest but I am on the whole very well with it. So I am hoping that whatever they put me on next will just flipping well work for me & halt or slow this latest progress. I will put up with no hair, nails or anything just to hang around for longer I really don't care about that it's just nothing compared to living to see my wonderful daughter grow up some more. Huge hugs to you & thanks so much. Jo ... View more

Thanks for your comments - Taxel & avastin is the first treatment they tried & it was working so well this has been a real shock. As you say it is the waiting & uncertainty that is so hard. I was very happy that things seemed to be going well I really think I had convinced myself I was going to be the exception that would end up NED & in full remission - Bloody fool that I am but then just sitting there thinking you are going to die isn't the answer either of course - I know I just have to get through the next few weeks for now and at least they are carrying on with this chemo until they find out what is going on so i don't feel left totally up in the air as I still go in every week & we have a holiday at centreparcs booked for my week off so that will be a great distraction. I booked it thinking I would have finished chemo but they kept me on it as it was working so well at the time after the CT scan. I decided we are going anyway even if I feel rough I will be OK and my daughter & husband deserve a lovely break as well as me. So much for thinking I might get some more hair back - will no doubt end up completely bald if the change chemos - BUT do I care NO - as long as it keeps me here I can cope with anything. Luckily I have coped very well with treatment 7 had no low bloods & fairly OK certainly copeable side effects so I know my body can take more treatment. The team are VERY proactive so I am confident they will have something up their sleeves - As long as they are willing to try so am I. XXXXXXXXXXXXX Jo XXXXXXXXXXXXXXXXXXX ... View more

Hi Notbreastfreind I am also on Taxol for secondaries as well as Avastin & Zolitronic acid. I am given steroids for the first 3 days to combat sickness even though it isn't usually a sicky chemo I did get some sickness with it and these really help my energy for those days which are the worst in terms of energy usually so they can definitely give steroids with it so it might be worth asking. I can also sympathise with you having young children though I only have one daughter of 6. I was due to have 18 sessions on the 3 on 1 off weekly cycles. My onc has actually carried on with chemo after this & I am still on it & am due to have my 24th dose on Friday. I didn't use the cold cap & at the beginning my hair did start to fall out quite quickly but then that slowed down and my hair has actually started to grow again so I am very glad I didn't shave it all off like 1st time around!!!!. This may of course just be me??? but hopefully there's quite a chance you won't loose all your hair. It is very thin & whispy now but not patchy & I do not bother with wigs or hats though I do get some looks sometimes. but it is better than being completely bald as I was on FEC T Early on I struggled to sleep with the stress of everything but I asked my doctor for some diazepam & found that really helped me sleep without the horrid groggy feeling in the mornings that I had with traditional sleeping tablets & it has the bonus of chilling you out a bit from the stress too. Now I occasioanlly take Nytol if I feel I need it. I hope that things are working well for you. waiting for the first scan after treatment starts isn't easy but if your blood markers are showing improvement then that is good. I hope that helps Jo ... View more

hi Salsababe I hadn't heard of people having more but when I spoke to some of the nurses they said it does happen when it is working well & side effects aren't causing too much damage which in my case they son't seem to be. I am at Royal Surrey in Guildford. I know my oncologist said he is often able to prescribe things other people can't in other PCTs so don't know if that has anything to do with it - I am on avastin as well. what might be the difference is that I am triple negative so there is no hormone treatment available to me so chemo & avastin mught be my only hope to keep things under control?????? Sarah - hope you get your CT results soon. waiting is always hard. I have been pl;agued by virals & seem to be going from one cold to another - I ended up in hospital 2 weeks ago & kept in for 24 hours but nutrophils were fine at 5.2 so they reckoned it was just a virus & I still had more chemo on the friday as I felt OK to have it but I am back with another cold again this week. still I don't want to miss chemo for that as long as I am still functioning which I am. we even managed to sell our house & may have found another one in the 2 weeks of easter hols so I am not letting any of this stop me from doing stuff but I know I am lucky not to be suffering too much from the side effetcs. ... View more

Hi Notbreastfreind sorry to hear your news - It is so shocking isn't it. you seem to have been incredibly unlucky with your start to treatment - I know everyone reacts differently but just to say I am still on taxol after 6 months - so far I have had 23 doses on the weekly regime 3 on 1 off plus I am also on avastin and zoletronic acid as well. I know I have been lucky but I have coped really well on it and although there are of course side effects they have been very manageable & I have still been able to get on mostly & enjoy life though with compromise of course. it is certainly nothing like first time around on docetaxol where I as floored. I have lost one big toe nail & the other is on it's way but that was after 5 months. I still have some of my hair & haven't bothered with scarves or wigs it just looks very thin & whispy. my feet are slightly numb & a bit tingly but not painful and my hands are just starting to get a little tingly too & a bit weaker but does not affect me terribly. they have kept me on it longer than the planned 18 doses because it is working so well & shrinking everything back. I had lung nodules, bones & lymph glands and on my CT scan in feb my lungs were completely clear!!!!! I hope this helps you as although we are all different & no one can predict how any individual will react it is possible to cope with this treatment well and so I hope you do too. hope that is the last of your hospital stays & best of luck Jo XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX ... View more

Hi Ann_04. glad you have omeprazole - i find it a real help. re your aches I have been lucky on taxol & not really suffered but when I had docetaxol it's sort of "sister" first time it was bad & my oncologist recommended taking Ibuprofen on the day of transfusion & for 2 days afterwards which he said his patients had anecdotally told hime really helped & it did for me. apparently if you take it on the day it can help prevent the acheing. worth a try?????? esp as he is a stickler for only reccomending things he feels are tried & tested. hope that helps XX ... View more

Hi pinkylou & Sarah 66 - yes I will be going on to avastin fortnightly plus zometa for bones every 4 weeks but at least that is only 45 mins of treatment rather than the current 2 and a half to 3 hours it takes but I will still have to see the nurse in the AM - leave for 2-3 hours while the pharmacy makes it up then have the treatment in the afternoon & still have to travel 50 milesa round trip for it thou- boo. but as long as it works!! I get a sore mouth but use difflam anathstetic mouthwash which numbs it nicely - they prescribe it at the hosp & it worked better than bongela - I also get terrible rhinitis & use a nasal wash with saline which is a wierd sensation but clears the snottiness well. I sometimes use nasal spray if I am going out as my nose just drips permanantly otherwise - like an old lady with a dew drop- mmmmmm nice!!!!! ... View more

Sadly with a lot of all of this it really is just a wait & see situation. You have had the Ct scan & at least that has picked up the problem but realistically they don't often biopsy lung stuff anyway as it is assumed it would be from the BC - lets just hope the chemo blasts them away as it can & you will get another scan at the end of chemo to check what is happening. we would all love definitive answers but unfortunately we can't always get them. Sorry you are having to join in here & that you may have spread even at first diagnosis but there is a lot that can be done - are you hormone positive as this means you would also get hormone treatment after chemo to help halt growth too. ... View more

Hi there - just wanted to check in and share my good new here & hope to give anyone starting on their taxol the hope they might feel they need. I stared treatment for secondaries to lungs, lymphs & bones in Aug 2012 - planned for 18 taxol weekly plus avastin & zolitronic acid. completed 18 taxol on 8th Feb & was told I would carry on as I am coping so well. reasonable side effects totally maneagable. I had my CT scan on 15th feb & went along on the 22nd not expecting any results as it usually takes at least a couple of weeks. anyway long story short my Onc said he would just check to see if they were in so we only had a few minutes of anxiety waiting time & he came back in beaming, shook our hands & said congratulations you have had a really good response - we don't see such good results this often but all is looking very good - he did advise cautionarily that it isn't gone away but is very very pleased. I will now have 3 more taxol then carry on with avastin & ZA for now. I am so so happy it is the best news we could have hoped for & I am now starting the process of getting our house on the market which got all put on hold 2 1/2 years ago when I got first diagnosed and then again when I got secondaries. - I WILL move into a nice new house which will be more suitable whatever the final outcome is for me - none of us knows how long we have but we must make the most of the time we have. rather than spending my time berating the fact that I have to live with this awful disease I intend to carry on making the most of things and enjoying what I can when I can - I have booked a holiday to centerparcs with my gorgeous little girl who is 6 and have another summer holiday booked with friends in August. am planning some theatre trips & have a belated birthday meal in March - lots to enjoy & wonderful family & freinds to share it all with. XXXXXXXXXXXXXXXXX Jo XXXXXXXXXXXXXXXXXXXXXXXXXX ... View more

Hi I am on taxol & avastin & have just had my 18th treatment but am carrying on as I am tolerating it so well. The avastin side effects are not as bad as chemo - main ones I have are Rhinitis - constant nasal irritation & some nosebleeds. all my other SEs are from the chemo like fatigue, etc. they monitor you very closely for high blood pressure & protien in urine as these can be pre cursors to more serious side effetcs but so far no problems. Is the capecitabine not IV as well???? whilst not easy it is copeable with & I agree that I will try anything they can offer. i know some health authorities are limiting their prescriptions of Avastin for breast cancer so I feel lucky to have got it as it is very expensive - about £3k a month apparently!!!! ... View more

Forgot to say i have a Picc line fitted which is a god send as my veins are non existant but it makles treatment easy less painful & slightly quicker too ... View more