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blondie
Member
since
01-05-2012
475
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28
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2 hours ago
Hi Windflower, My story is very similar. I'd been to the GP with leg-pain a week or two before my incidence of breathlessness, as I really thought I had a DVT. She did all of the tests (except the one that would have shown this!), and I was sent away and told to take Ibruprofen 😞 Anyhow, I started to get breathless to the point that I relly thought I was having a heart attack and called 111. The rest is history... multiple PEs, caused by spine mets. I was followed for 10 years post my original diagnosis - Mainly because I was 'young' (40) when first dxd., but the follow-up included local breast exam only. I asked loads of times how that examination would show whether my cancer had progressed, but never really got an answer! I'm on a few fora like this one now, and a lady on an American-based one I've been chatting to has bone mets, picked up during an appendectomy of all things. The cancer was in her appendix too. Like us, this wouldn't have been picked up without the appendectomy... It does make you wonder doesn't it? However at least we are being treated now I guess... Stay well xx
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26-05-2020
12:03
Hi Kelliebear, I'm so sorry to hear what you're going through. I spotted your post on the 'latest posts' tab but I see it is part of a string of posts so I am wondering if you might get more replies if you posted it again under its own heading? Both my aunt and I have breast cancer. Mine has hopefully been treated but my aunt is too unwell to have an op. She was a nurse all her life, retired now, and is also trying to cut down oestrogen like foods in her diet. She swears by the books by Jane Plant, a scientist who lived for many many years after her diagnosis. She looked at the diets of countries where breast cancer is less common and devised a diet that cuts out many foods that she thought 'fed' cancer. I just checked and there are various books by her on Amazon and some news articles about her too. The problem is there are so many weird and wonderful claims it is hard to know which have some science behind them and which ones are just trying to cash in on it. I personally cannot vouch for the Jane Plant books because I haven't read them yet but I just wanted to pass on my aunt's enthusiasm for them. If you re-posted your query under another tab you might get seen by other forum members with more experience and advice. Maybe Macmillan could send you one of their recipe books? I remember being given one when I was in hospital as there was a table there with Macmillan resources, and the book was all about simple recipes to have good well-balanced nutrition when cancer and its treatments can make you lose weight and have a poor appetite. The Breast Cancer Now nurses are also really great to talk to on the phone. Some telephone advice lines can be really general and vague but I've found the Breast Cancer Now nurses really listen to your particular circumstances, have loads of knowledge and experience, ask you questions that help you think things through, offer good advice about the physical and emotional side of things, and know how to point you on to further help. I hope you get all the help and support you deserve and that it makes a big difference to you and your family x
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08-04-2019
02:02
Blondie your post has given me some hope!!! Diagnosis this Jan of mets in lungs TN diagnosis primary was April 2017 so I was a year out of treatment when they found the mets 5 of the little sods in total watch and wait yes I feel you as I am on this too had a stable scan a week ago following my diagnostic scan in Jan and onc has therefore decided to keep me on this for at least another 6 weeks if no changes on xrays more watching till my next ct which will be 12 weeks on from this last one My onc doesn't want to start treatment as yet it's not helping my anxiety at all but he has a plan once he thinks the time is right for me To here someone is still going strong after all these years is a huge thing for me as I have been beginning to feel like it's going to be over for me pretty soon as I just don't trust my body as it has already let me down twice now and so desperately want to live as long a life as possible
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26-01-2019
09:41
Blondie you are amazing and your story gives all us secondary ladies hope for the future! So sorry to hear about your husband you must be feeling very lonely without your best friend, also want to wish your mum the best. Take care Blondie. Hugs Janette xx
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20-06-2008
07:36
Hi Kate. I, too, read your posts on both forums, and it never ceases to amaze me how you can give advice to others about their problems, when you are having such an awful time yourself. I'll never forget your reply when I posted on the other forum about my worries re. my mum, it meant a lot to me. I'm sure they'll look after you well in the hospice, and I hope they keep your pain under control. I hope you manage to spend the quality time with your family that you so desperately want, and deserve. Bless you, Kate, you are always in my thoughts.
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17-12-2007
09:45
Lucy Ann - sorry not to have replied before, I have only just worked out how to keep track of replies on these forums as they don't email you automatically like some forums do,
Yes, mine is (or maybe was) a breast cancer met. It was right at the head of the pancreas leaning on my biliary tree, which gave me jaundice, so I have a biliary stent (actually I have had 3 so far). It is apparently very difficult to "see" the pancreas on a CT scan because it is behind other organs, so they missed it at first and only found it with an ultrasound after I stopped eating and started going yellow. Since then I have have courses of both Taxol and vinorelbine, and my last scan said "pancreas normal", so at the least it has shrunk a lot (wish the same had happened in my liver!).
The main problem I had was the anorexia; not sure how much that was the met itself and how much the jaundice, because I had the biliary stent put in and starte Taxol more or less at the same time. I did subsequently have much worse jaundice when the stent blocked, however, and the anorexia was not nearly so pronounced, so I suspect the first lot was mostly the met.
Best of luck with your chemo, and hope it is as successful against your pancreatic met as mine was.
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01-12-2007
01:09
Hi Marilyn and Jenny
Thanks for both your comments.
I think the main reason why my oncologist is concerned is because I'm the only person she knows who has been on it for just over a year and I think she probably feels she's in unknown territory.
I am responding well to it and feel that while I am I don't want them to mess with it! I remember my oncologist saying last year that they might consider taking me off it for a rest (which didn't happen because I was improving all the time) but she said, at that time, that if it started to grow again then she wouldn't be able to put me back on it, which seems to be different to what your oncologist is saying.
I totally relate to what you're saying as well Jenny about preferring to stay on it. I feel so well on it now and am completely different to last year. I'm just so grateful to my oncologist for giving me the opportunity to try it and it proved to be the right decision.
Marilyn - my mum was treated at The Christie way back in 1982 (lived in Preston) and it's supposed to be an excellent hospital. My oncologist is brilliant and I'll probably mention your doctor to her if she does have any concerns about me remaining on it.
Good luck to both of you - long may we continue to be well!!! You may well have burning ears when I next see my oncologist on 22 December!
Pinkdove
xxx
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20-10-2007
01:50
Thank you all for your kind words, even as some of you are fighting with your backs against the wall.
I wish I could say I had a magic answer, but I don't. I didn't wildly change my diet, but I have eaten a "healthy" Mediterranean diet for years. I didn't find the power of prayer, though I know many people have prayed for me. I just accepted my treatment path (rads, ooph, switch from Tamoxifen to Arimidex), and then spoiled myself with Reflexology, Reiki and red wine. I have also recently been referred to an Acupuncturist. These complementary therapies have helped treat the symptoms (menopause at 35, chronic fatigue with a full-time job,... ), but I believe it was the rads that really zapped the bugger into remission... And I know that was just down to luck.
But if I can win the cancer lottery, maybe you can too. I really hope we all can.
Much love,
Mel xxx
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19-10-2007
09:39
Hi all
Yeah avastin went welll yesterday although they were short staffed so were well over an hour late starting. Don't know about being on holiday I seem to be totally rudderless...... in fact my mobilty is crap and my liver still seems to be growing by the inch..... I seem to be writing a lot of crap tonite there seem to be several threads for us and I keep repeating myself or am I just making up fairy stories?
Must go to bed before I go mad... on the steroids
Good night
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16-10-2007
12:11
Hi Mills glad you are feeling better - get in there and fight your corner.. best of luck. Sometimes it just needs us to get a focus on things and we feel better. Big hug.
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10-10-2007
11:03
Jacksy
Well done you! I hope you are planning your post-chemo celebration.
Blondie
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05-10-2007
11:57
According to my husband, the problem was that she couldn't get the drugs locally, so she had to travel to Nottingham and that was a tremendous burden when she was so poorly.
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05-10-2007
11:49
Maybe - but they said they were removing my name from the list, so I shall just have to wait and see.
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18-09-2007
10:17
Hi all,
It's brilliant to read about you all, especially the ones who are further on than me and living full and well lives. A special welcome to Mrswilky/Debbie. Glad you had the courage to post for the first time. You'll be putting your two pen'worth in on everyones threads from now on!
Sadly can't go to the forum in London - half term's not a good time, for future reference!! (are you listening, moderator or whoever)
All the best
jacquie x
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05-06-2007
03:50
Good on you Hi Irene
Well done for pushing for help and getting it. I am glad your shoulder pain was not BC related - what a plus, but painful none the less and I am pleased that you are on your way to better health.
We have enough to put up with without all the 'extra' side-effects we pick up along the way!
Blondie
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09-05-2007
11:47
back pain Hi all, I am looking for advice re. secondary cancer diagnosis ,
What would be the symptoms of secondary bone cancer
I am a bit worried as I have a lot of back pain , I had a mastectomy in December,and being 60 and with recurrence being assessed as low I did not take tamoxifen
I also take long term steroids for vasculitis, and have osteoporosis caused by steroids. and diabetes and asthma
I guess we all with cancer fear worse but would be grateful to hear how it is diagnosed I have full bloods checked every month for vasculitis and ESR but dont know if it would have blood markers that would show
Please forgive me for asking I am humbled reading of courage and support of you all ,you meet angels unaware
Thank you
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02-05-2007
10:02
thanks jetty thats really usefull to know ( I have visions of being hung upside down while they try and get to my tumour, as its in an difficult location IO: !!) glad things went well for you.
Blondie I think all of those criteria's still have to be met except they will do it now if you have bone mets.
Tracey, I would get a 2nd opinion, I think you live in the Isle of man?? maybe you should take a trip to london, I've seen a couple of specialist you can see there names and locations in my profile, there is no way of knowing untill the surgeon has seen your scans as location of the tumour is a big factor.
Good luck all
love Amber xx
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01-05-2007
11:29
thanks blondie,
results are at 330 pm today , this is pure agony . will be back teatime to reveal xx
Tracy
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