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blondie
Member
since
01-05-2012
475
Posts
28
Hugs
02-05-2020
08:47
1 Hug
Hi Beebs I was early 50s when my cancer returned and had spread to liver and bone - is that enough information? i was so lucky that I managed to last 9 years before reoccurrence. Obviously I am HER2 but when I was first diagnosed we knew some women died within about 5 years but not why. The discovery of HER2 status and the development of Herceptin in the US for secondary BC, was going on throughout the late 80s and 90s and was only approved by NICE in the UK in 2002!! You can see just how lucky (relatively!) I have been. The amazing story of the development of Herceptin (the luck, the dedication etc) is in a book: Her2 The Making of Herceptin a revolutionary treatment for Breast Cancer by Robert Bazell (1998 Random House NY) and this has been made into a film: Living Proof (2008) Available on Amazon
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02-05-2020
08:19
Hi lollipop i was diagnosed with mets in liver (specks/spots throughout the liver) and a spot on my sternum. After FEC I had a reoccurrence as I had a large and fast growing growth. Taxotere and Herceptin followed and the rest is history. As for diet - I became a vegetarian (I eat fish) aged 32 (BC diagnosed aged 44) and from diagnosis have cut back on my dairy intake. When I say cut down I mean that I don’t drink milk (I don’t like it) and only eat ice cream, cream etc occasionally. I can’t say I am strict about any of it but I do try to eat well, lots of veg and fruit. Hope that helps. blondie
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22-04-2020
06:20
Hi Beebs - my first treatment after reoccurrence was stronger FEC but the cancer kicked off again about six months later. Taxotere and Herceptin followed towards the end of 2003 and into 2004. It did the job so I suppose I was NED sometime in 2004. My lovely oncologist, to give me hope, told me that he knew of a woman in America who had survived four years - and I’m still here!
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21-04-2020
05:30
6 Hugs
My annual update but in such strange times! I can report that I am still fine and still NED. I have taken the, once unthinkable, decision to stop my Ontruzant treatment for a few weeks(?) while I re-assess the risks to me of attending hospital and breaking my shielding status. As I now have a form of leukaemia the risks of the dreaded CV19 are heightened by my weakened immune system. The lack of evidence of what happens to those ‘long term survivors’ who stop taking Herceptin/Ontruzant really doesn’t help me in my decision making. I know that for some the term ‘cure’ has been bandied about but I have seen no statistics or papers to back this up. I know we have all railed at the tabloids for putting ‘breast cancer’ and ‘cure’ in the same sentence for so many years now, but it is so hard to make an informed choice if the information isn’t there! I have no idea how many of us ‘long term survivors’ there are. Are we not statistically significant enough for a study? Are we not an interesting phenomenon? Is there nothing to be gained by a close look at us to see why we are still here? Do I want to be an, unintended, Covid19 experiment into seeing whether my tumour returns if I stop treatment? Well ok I’ve got that out of my system so you can see that I am definitely fine for now! Wishing you all well, especially those going through treatment, coping with postponed treatment and in lockdown. My thoughts and virtual hugs to all my Secondary friends - stay well and safe blondie
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27-03-2019
05:52
3 Hugs
Well folks here I am again - still beating the odds, still going. The Breast Cancer is behaving itself (still no evidence of disease) and my CLL (Chronic Lymphocytic Leukaemia) status is still ‘Watch and Wait’ - so different from breast cancer where the quicker the intervention the better, that does take a bit of getting used to! This year has been a hard one as Mum has had bowel cancer metastasised to liver. Mum is nearing the end now but is still positive, never complains and, thank goodness, isn’t in any pain. My approach of ‘not looking too far ahead’ has got me through this year (and probably the previous few years caring for my husband) that and attempting to find something, just for me, that brings me joy on a weekly basis (more if you can find the time!) Sending you all positive vibes!!! Take care blondie
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29-10-2018
05:26
10 Hugs
Yes I am still here (for those of you who have followed my posts), still on Herceptin (actually Ontruzant now), and still no sign of Breast Cancer after 260 infusions. That's secondary BC since 2003 to liver and bone. That's the good news but this year hasn't been a good one for me - hence not coming on here to post my yearly update. My husband of nearly 46 years died this year, my mother has terminal cancer and I have recently been diagnosed with a second cancer CLL (Chronic Lymphocytic Leukemia). It's an awful lot to take onboard and process but I am getting there (I hope) and remain positive. Who knows whether the 3 lots of chemo I have had since 1995 have damaged my DNA somehow and caused this new cancer but the way I look at it is this - if I hadn't had the chemo treatments I wouldn't have lived long enough to get this CLL! CLL (I hadn't even heard of it before!) is a blood cancer that you can live with for years with, relatively, few side effects and there is no benefit to treating early, unlike Breast Cancer. I will live with this, alongside my BC treatment and now have an Oncologist and a Haematologist (lucky me!). I am now on 'Watch and Wait', or 'wait and worry' as many CLL patients have renamed it. See - BC patients aren't the only ones with 'cancer humour'! I never thought that, when I started this cancer journey in 1994, that I would outlive my strong, healthy, handsome life partner of 49 years. Certainly in 2003, when I was given 4 months and told by the Liver Specialist to 'put my affairs in order', it wasn't a conceivable option. I want to pay tribute to my wonderful husband who was with me every step of my BC journey. I hope I can manage without his loving care and I want to be here to continue to support our family as well as he did. I also want to acknowledge the debt that we all owe to those of our friends and family that help us to 'hang in there' when life gets tough. All power to you all blondie
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02-04-2017
12:57
4 Hugs
April 2017 and diagnosed with secondaries to liver and bone in 2003 - still here and doing well! For those of you who are Her2 and on Herceptin - I have now been on Herceptin since December 2003. This year saw a, surprise but very much welcomed, new grandchild. That makes four grandchildren that I have seen born and cherished since diagnosed with secondary breast cancer, something I never dreamt was a possibility in the early days of my secondary diagnosis. I have been able to see my own children grow into dependable, resourceful and caring adults and parents - for that I am eternally grateful. i hope that news of my continued good health and fortune can give hope to fellow survivors and I wish you all the best luck in the world in your struggles with this disease. All love Blondie
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21-05-2015
10:37
Hi Sam123 Tried to send you a message but you aren't 'enabled'! Actually I am now 12 years on (see recent post). I had spread to my liver (spots throughout my liver) and bone (my sternum) but I have been NED for years now. I have a scan on 4 June so hopefully that too will be clear - but I can never get complacent as it could come back any time. Hope that answers your question but feel free to contact me anytime if you feel I can help. Look after yourself! blondie x
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12-05-2015
11:00
Hi Kander I have been on Herceptin for years and know just what you are talking about. I can't find the right word or a wrong one will pop out instead! I was told it was 'chemo brain' (3 lots of chemo) but I suppose it could be the Herceptin as I did get better after the first chemo. I don't get pressure anywhere in my head but that could be anxiety related. Don't worry that will add to your symptoms - get checked and then you can learn to cope with the word thing. blondie
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05-05-2015
10:45
Sod6162 I have been on Herceptin so long the protocol has changed several times. I have been offered 'treatment holidays' ie miss a treatment or even two (not that I ever did - but knowing I could was a comfort). I was often moved forward a week to avoid Christmas and bank holiday rushes. Then the rule changed and - miss a week and you have to re-load. Now I will move a few days or so either side of my treatment date so I can fit in holidays etc and that doesn't seem to be a problem. Hope this answers your question. blondie
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05-05-2015
10:28
It has been mentioned but more as a confidence booster - ie 'there are people in the U.S. who have been considered cured and come off Herceptin, do you want to? No? That's fine.' The consensus here is if it ain't broke..... So I plug on - 201st here I come!
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05-05-2015
06:02
Hi Sheila No I haven't worked since my secondary diagnosis as I was given about 6 weeks to live and was very poorly. I couldn't do my job now anyway as I don't have the speed of thought needed (chemo brain) or the energy. Somehow I ended up on a lower dose. We aren't sure how, possibly I was neutropenic one time and it was reduced and never put back up! Details lost in the mists of time. It means that I can't have the subcut as it is a pre-prepared standard dose so it is injections for me. blondie
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05-05-2015
05:54
Hi Jo The answer is, hopefully ( scan soon) none! I have been NED for years now. Hope that is a help and encouragement to you Blondie
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04-05-2015
09:54
Number 1 for me too. So glad I found this thread (my fault for not keeping up with the forum). We called ourselves the Cinderellas all those years ago - such a shame so little has changed! Mrs Blue - so sorry to hear your news, you are in my thoughts. May your candle burn on Love blondie
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03-05-2015
08:28
Just to let all you fellow liver mets ladies know - I have had my 200th Herceptin injection!! Amazing, unbelievable - I feel very humble as a appreciate all the work, dedication and money that has gone into getting me this far. Let's hear it for all those unsung researchers out there - keep up the good work A very grateful Blondie
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07-04-2015
10:07
Mrs merc and fruitfap Aren't we all 12 month prognosis as secondary BC patients? I know I got the full payout on my pension because I had a 12 month prognosis, and that was years ago! As far as I am aware, the 12 months is your prognosis without treatment - makes sense. With treatment the medics have no idea how long we will have and the odds are getting better all the time. HER2 was a death sentence when I got my primary in 1994. They didn't know about HER2 just that some women died within 5 years - those usually with HER2 - and I was never tested for HER2 until my cancer reappeared 9 years later. With my chemo failing and cancer spots throughout my liver, I was put on Herceptin and told, optimistically, that there was a woman in America who had lasted 4 years on Herceptin - here I am still going (and I often wonder about 'that woman in America'). So you see they can tell you what will happen if you don't have treatment but cannot predict the outcome if you do. Blondie
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07-04-2015
09:37
My place/Sandra The waiting is awful. You will feel so much better (relative term!!!) when you feel something is being done and you are moving forward. All the best in your treatment and I will be thinking of you. Blondie
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07-04-2015
09:29
Elliedog - re Scan frequency Probably one a year but I have to ask and they agree, but just to give me peace of mind rather than because they think I need it. I am seeing the consultant (again hardly ever see consultant either) in a months time and will ask for a scan .
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25-03-2015
09:39
3 Hugs
Well I have made another year - 12 years since secondary diagnosis (spread to liver and bone) and 11 years plus on Herceptin. I am fine and well. I was originally diagnosed with breast cancer in 1994 and it came back in 2003. In April I will have my 200th Herceptin treatment - still by intravenous injection as I never did get the subcut (a long discussion and much agonising but probably for the best, for me). So the message is, try to be positive (everyone tell you that, as if it's easy and it's not!) but the fear of cancer will rob you of your good days just as effectively as the beast itself. Get some joy for yourself out of every day and hang in there. Blondie
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