Marirose thanks for your encouraging post. It helps to read that we can enjoy a good quality of life. Lovely to be told you look so well. Like you I try to think of myself as living with cancer. Although I have an onc appointment next week That never fails to have me terrified. Sue xx
Welcome back Lynn. Glad to read that you enjoyed your break. It is so encouraging to think that our lives can be normal, Well sometimes. Love to all. Sue xx
Hello everyone. I am back from my hols now had a brilliant time, been a bit jetlagged but feeling better now.
i did lots of walking and felt fine most of the time.
I have been catching up on the posts and hope that everyone is as well as they can be. Welcome to the new people who are posting now, it is good to have so much input and to be able to share good times and support and info when needed.
it feels very cold here, I am making full use of the heating evev though tiday us bright and sunny
My dx for secondary was 2013 with tumours on sacrum(spine) left breast and 2nd primary in the chestwall because of where it was I could not have surgery and radiotherapy was out as I had already had it in that area in 1996 with my first primary. So I was put on Letrazole which stopped working then I was on e/e and because the 5th scan showed progression and receptors had changed hormone treatments are no longer working for me. I now have mets to ribs left pelvis femur tibia and right femur. Hence my new treatment is capecitabine I am now at the end of 5th cycle and feeling really fine apart from sore hands.
I really do not think about how long but my phylosophy is I am living with cancer not dying and make every day count. Yes I am upset when I think about Belinda and Helen also others that I used to follow in the beginning but I'm pleased to have known them. I know there are more treatments to try after this stops working.
I was quite pleased with myself today I went into my old place of work to see my friends and work colleagues and they could not believe how well I looked, I get this all the time makes me feel so good.
Thanks again for rejoining us Linda and I hope others will pop in too.
Love M xxx
Started on 10mg for 3 months but found side effects too much. Felt weak all the time with acne spots on face and body and a very itchy skin. Got changed to 5mg. I don't think it is working as well as tumour markers are about 50 which quite abit above norm. Due next scan in April. I retired at Xmas 2015 as I am now 63. Is your mets still in bone only? Have managed well on cap? I dread what the next treatment will be. So sorry to hear we have lost Helen and Belinda. Helen lived at Cullercoats and I live in Washington Tyne & Wear. I felt we had alot in common with both coming from North East. I don't about know you I feel as time goes on I get more worried about things and what is next. I am so pleased you replied to my post . Sorry about all the questions. I don't talk to hubby about my worries as it really upsets him. Sending cyber hugs. Linda
Nice to see you back. Sadly we lost the lovely Belinda at Christmas and everyone seems to have gone quiet since then it came as quite a shock because she was still posting just a few weeks before. The cyber cafe has not been the same since we lost Helen although Marie and Chocolates has brought a laugh and Julie.
I am pleased to see you are still on the e/e combo I managed 17 cycles and then it stopped working so I have gone onto capecitabine which has shown some results after 4 cycles bones are healing and everything stable.I am at the end of my 5th and starting my week off. This one is 2 weeks tablet and 1 week free that makes it better than e/e.
Have you stayed on10mg mine was 7.5mg I wanted to go back on full but onc would not let me because I had had 4 stables. But at the end the scan showed growth in my main tumour and then a bone scan showed more mets in ribs both femurs left pelvis and left tibia.
Again it is lovely to hear from you take care xxx
. Hi All
I have not posted for quite awhile. Since I posted I see we have lost many of the regulars that were posting when I first started on the forum. For the newbies. I was diagnosed with lobular breast cancer and bone mets back in 2009. Had primary removed in September of tha year.. Got CT scans before starting chemo in November that year that is when they discovered I had multiple bones mets. Finished chemo in Feb 2010. Had rads, then put on Letrozole which worked for 4 years. Treatment was changed in Feb 2014 to Everolimus and Exemestane. I have been getting scanned twice a year since then. Keep wondering when treatment I am on stops working then what next.
Sore noses are a pain I use boots cold cream and when I can't find it vaseline use it regular during the day it seems to work.
Hello to all boney mates xxx
Hope you feel better tomorrow I'm just pulling myself around find it takes about a week for me now. My nose is so sore and my eyes stick together on a morning I've had antibiotics and cream not much better tho . X X x
Hiya Sarah Louise - phew glad you have now seen your Oncologist and he is sorting out the best treatment for you. You must take a day at a time and focus as there are lots of options for you although its all very difficult to take in and remember !!
To be honest I am such a wimp as soon as I get to Oncology that all I want to do is get in and out as soon as possible and dont ask many questions !!!
I think so much more info is available on these boards and online !!
Well said Julia
Your post to Sarah Louise was spot on no one has the right to tell someone they have little time to live without trying treatments first. I met a lady at our cancer help centre who was told she had 6 months so she got a second opinion at the Royal Marsden and 2 years later he will not say she has little time left but says he will try to give her much longer to live.
So there is always hope.
Best of luck Sarah Louise x Love to all xxx
I'm in a similar situation, and I would love to know what luck you have with your request to have your primary removed. I was dx double whammy last March with Invasive Lobular Grade 2 and liver mets. My liver function scores were absolutely insane in December, but I can honestly say that I've never been bothered by my liver mets. I wish that I could say the same for my primary! It measured 4.7cm in the upper outer quadrant when biopsied last March and now I don't even know the size (over 10cm), just that it has taken over my whole rather small breast. In December, I was put on weekly Paclitaxel but had a severe reaction and was moved to Abraxane every 3 weeks. I keep hoping that it will shrink everthing, so I might have a chance at having my primary removed. Please keep in touch.
All I can say is HOW DARE HE (your oncologist)!!!. It's been said many times on the Forum, but still remains true - none of us come with a date stamp. Like most of the women responding to your post, I have never been given a 'prognosis' - unless one is at deaths' door, it's not helpful nor acurate. The standard today is to be told that SBC is not curable but that there are many treatments and more in the pipeline. If many of us (even those with the dreaded visceral mets), have not been told to start choosing the music for our funeral, then you certainly shouldn't have been given that silly prognosis. Rant over - it just makes me really cross when someone new posts with such an unenlightened tale.
good luck with move and downsize I have just said to Caroylyn. We were in Devon for 15 years and we had some wonderful summers I know it's not always rainy but there is a reason why it's so green lol.
so glad it's sunny I remember lots of beautiful sunny summer days loved our 15 years in Devon
Elily and Julz
Best of luck with growing some hair soon ........once you have a bit of a covering you will feel so much better and will help you tolerate the treatments.
Hugs Carolyn xxxxxxxxxxx
Thanks all for answering my CMF query. So, I may see my hair again (hurrah!) but feel a bit sick at times (boo hoo). I hope it will kill off most of the nasty cancer cells in my bone marrow! And I hope I can keep working as apart from working part time when on Taxotere, I've been able to work through other chemo regimes.
I will be happy just with a full coverage of hair lol. Your right about the front it hasn't really got a shadow I can tell this will take the longest . I definitely think they should scan you lymph nodes or not they told me it was rare to travel through the blood that's prob because they hope to get it with the primary chemo bet there's a few woman out there haven't a clue it's spread if it hadn't been spotted by accident I wouldn't of had a clue . X x
First of all apologises for all my postings yesterday - what am I like ? It was one of those days I sat with the laptop on the arm of my chair and flicked between the boards and facebook all day BUT promise to be good today.
Phew didnt know it spread through the blood as well as lymph glands so the little blighters have a free route to spread where they feel they want to !!
Growth of hair whatever its like is just nice though and with a bit of mousse or gel - lots of interesting styles can be created !! I had a nightmare with the wigs. ( see earlier postings a few weeks ago)
Well we are here with our knowledge and moans so we must be grateful. Im in Devon and the sun is shining and I even had my morning coffee out on the decking and the patio doors are open and the sun streaming in (well I do have slippers and two jumpers on though as its cold )
I hope my memory is correct. Back in 2004 I had my chemo and Im sure that I had FEC/CMF. The first bit is the one with the Epirubicin stuff and your bald as a snooker ball BUT then I switched to CMF and the hair grew really quickly. If Im correct this one you have it adminstered and then 7 days later you have a top up so it doubles up the treatments but its maybe not so strong. I did feel sick more on it and so had an anti sickness bit popped in the infusion to help.
Hope Ive got my facts right and not confused you too much.
What a lovely lot of chatter, and support!
We also moved last year, downsizing as our two D's have now left home. We also had a lot of sorting out to do and the local charity shops did very well out of us! If any charity worker had shaken one of their collecting tins at me during that time I think I would have said I've given enough thank you! Some stuff we also sold on that well known site and some was bought by our buyers so it all went well but took for ages it seemed. We really did spend all of last summer just sorting out things every weekend and going to the local dump to get rid of bits we should have done years before! It has also been nice since moving to buy new, and totally different furniture although my New Years resolution was to stop using an Allen (sp?) key as I had put together so many items!
Onto the chemo type questions -
elily, I haven't had CMF but it is used for primary BC so you may get some info from that part of the forum. I used the chemo part of the forum for info when I went onto docetaxel as there weren't many secondary ladies having it at the time and got a lot of info from the primary ladies about SEs etc.
As to hair growing back it does seem to take a while after the docetaxel, H and P regime so I'll warn you now julzd! And I agree with Carolyn that the fringe seems to take ages! Plus, this time around the texture was completely different from when it grew back after having FEC chemo 8 years ago. It's OK now but I finished docetaxel in Dec 14 so a good year before I feel it's looking it's best, although it did grow back well I just wasn't happy with it for ages. Luckily I have been getting a few compliments recently saying how nice it looks, just as well as our ED is getting married on Friday and I will be in way too many photos!
As to BC spreading, I also didn't have lymph involvement with my primary and was very low risk of it returning, but return it did, nearly 5 years after primary and the spread was through the blood system which is often overlooked as the other method of spread.
Anyway, take care ladies, great to see this active thread being even more active 😊
I am going onto a course of CMF after 7 cycles of Epirubicin which didn't reduce my TMs.
I know it was standard treatment before FEC-T.
Anyone had a course of CMF ... And how were the SEs? I've needed Hb transfusions every cycle of Epi, so am hoping to have a bit more energy this time!
I think if I remember rightly about 3 weeks after last chemo it starts sprouting and at least you have a covering but what surprised me was how long it took to grow a fringe !!!! Its very upsetting even to watch adverts on tv for hair shampoo !! If I heard someone say they were having a bad hair day ........it took all my self control not to want to punch them and say loudly " well at least you have hair to have a bad day with ""
OMG - I sound awful but thats how I felt as although I was 51 then - felt very down with having to wear wigs and things and deal with treatment although I did get through 12 sessions of chemo very easily with minimum problems when I look back.
Hugs carolyn xxxxxxxxxxxxx
Herceptin is a really good treatment to get - unfortunately not for me as I have the wrong type of cancer which it wont help. I think I am not HER + or something.
AND you will get your hair again which will be nice.
When I moved last year - we decluttered really seriously and we were lucky as we had first time buyers and they were grateful for a lot of my stuff and that was a good excuse for all new !! Its never worth taking things as they never fit or suit the new place and its a good excuse to spend !!!
You are going to find it hard though if you are not mobile as its hard work even unpacking boxes and things - lucky enough I moved last June before I had serious health problems and so it was ok.
I assume you are moving to a smaller place which will be easier for you to manage. Are you staying in St thomas area ?
Hiya Jultz -
What a nightmare year for you and do you have young children as well ? Funny shows how much I know but I thought that if the lymph nodes were clear it meant the cancer was contained in the breast. Obviously it can be somewhere else and the lymph nodes clear. I think I had one lymph node infected at primary dx in 2004 but I remember my surgeon saying that I had a lazy cancer which shouldnt cause much trouble in the future !! Well I had 11 years clear and now its back with vengeance in hips, femur pelvis etc .
I dont watch a lot of daytime tv as its the pits but I do tune in for breakfast tv and sometimes on bbc 2 homes under the hammer. If I cant sleep during the night I put tv on and watch silly stuff . Have been sleeping better since having a glass of tonic water before bed though.
I think you must be feeling very down not having any hair for a long time as I hated it during my chemo and it was only for a few months.
Carolyn xxxxxxxxx .
Sorry Carolyn -messages crossing left, right and centre! Sorry I won't meet you at the hospital this month - maybe next time! Carolyn and julzd, I'm trying to be good and not buy stuff at the moment because of decluttering, but when I have moved - BEWARE! Am considering all new furniture! Although bank balance might not stretch to that, I think my buyer might want some of my furniture, as he hinted at the sofas when he was here last (1st time buyer). Keeping my fingers crossed for all of this. Hugs. Barton.x
Yes - sounds like going back to work will make you feel a bit more normal again and a routine will hep you get through this. After I had my primary stuff in 2004 - I went back to work full time and it felt good to be with work friends again as I was only 51 then.
I retired October 2014 and so Ive done my time in the work place now and can enjoy lay ons and watching breakfast tv in bed etc without any feeling of guilt.
Sounds like you have had a terrible year of things though with all the treatment and sometimes hanging around at home isnt a good idea .
Ha ha Julzd ...........Been there, got the tee shirt but isnt it fun watching the postman arrive mornings with those little packages and then the horror on hubbys face when he realised that its more money spent !!
Thought I would take up tapestry as never done it before and I cant keep posting on this forum as ladies will say " oh no not her again " so I bought a beginners kit ( yes online ) and its a me to you teddy which is quite easy as its designed for 6 years and over !!! It is keeping me occupied and I have my grandson staying at the moment so Im also busy feeding him !! as hes eating for England at the moment, Forgot just how many meals a day little people eat.
Hi Carolyn laughing at your post I'm at the online shopping stage this week bought water alkaline jug a recipe book of soups for every day of the year 4 pillows an oil burner and some juice making books it's ridiculous haven't even looked at them or took them out the boxes. I find I'm that bored sitting in the house when everyone's at work I go on Amazon we will have no money left soon 😵 X X
Im not due to Cherrybrook until 26th February for my Denusumab injection so I wont be there next week . At the moment Im glad Im only going monthly for the injection as although its a lovely place - I still feel nervous every time I go in there !! such a wimp !!
Sounds good that you are moving to a retirement flat as it will be easier to manage. Dont envy you having to clear out your present home though . We moved last Feb and it took upteen visits to Charity Shop and dump just to get the garage clear !! We dont store things anymore now in the new house - its hubbys rule and quite a good one !! On the subject of hubby ..........hes delighted Im occupying myself on this site as before that I was shopping online and costing him a fortune in things like coffee frothers and things we didnt really need !!
You are living in the same area of Exeter as me - St Thomas and so when you are better and free of decluttering we must meet for a coffee . I have sent you my phone number on private messaging.