64325members
338610posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

31 REPLIES 31
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Mrsblue

 

I have forwarded your post onto the Secondary Services team so they can reply.

 

Take care

June, moderator

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi BCC people.  This thread is specifically about the Sutton Marsden. 

If it is relevant, please give us further information, or provide a link!

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Sutton, South London-new Living with Secondary Breast Cancer  Breast service

 

Breast Cancer Care are launching a new Living with Secondary Breast Cancer service in Sutton, South London in January and will be launching the new service with an Overview Day on Thursday 22 January 2015

 

It's a full day of information and support and chance to meet up and chat with others with a diagnosis of secondary breast cancer. It's an opportunity to hear from expert speakers on the Medical Management of Secondary Breast Cancer, managing the symptoms of Cancer Related Fatigue and the chance to try tips and techniques for Relaxation. It's also an opportunity to find out more about Breast Cancer Care's services.It's completely free to attend and all refreshments and lunch are provided.

 

The following monthly meetings will then take place on the fourth Thursday of every month from 11am in a central location.

 

If you'd like to book a place or would like more information about the Overview Day or the ongoing monthly meetings in Sutton then you can contact us on 0345 077 1893 or email secondaryservices@breastcancercare.org.uk

 

 

Best wishes

Carol

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Coffee shop / restaurant ment x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Mrs blue
I'm being treated at fulham road .
Lovely small Italian coffee / restaurant oppostite hospital . X
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Lucy... "coffee shop"?  Which Marsden are you treated at?

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Sorry I ment team !
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi sjaMitch
Yes I was pleased with the scan results . Still have very wobbly days though ! But find the inspiring stories on here really help . This is my first line of treatment . So I'm hoping it will work for a long time ! I'm a little nervous about now being scanned every 6 months but have so much faith and confidence in the term . They are the experts ! I live in the Midlands so takes me about 2 1/2 hours to get there . But it's worth it . We always have lunch and do a bit of shopping while we are there ! I think we are now on first name terms with the guy who owns the coffee shop oppostite the gates ! I'm sure you know where I mean . I'm due back for treatment In dec . Then not due to see team until feb . Yes I'm hoping to enjoy christmas a bit more this year . Last year I had my mastectomy and had two drains still in over Christmas ! Hope you manage to enjoy christmas too . Take care x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

hi lucy

 

well thats good news isnt it! long may you stay on tamoxifen/zoladex! it seems to be working for you. how do you feel about getting scanned every 6 months. they must be really happy with your progress.  I am ok. A little down i suppose. on fifth cycle of cape so feeling tired. im not due bk to the marsden till 16th dec and not scanned till first week in Jan so im going to try and enjoy xmas. Where do you travel from again? 

hugs

jo xx

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Judt incase didn't mention , have multiple bone lesions too x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi
SjaMitch
Had my results of latest scan yesterday at the marsden . All areas now stable . I only have a small lesion on the liver which is now measuring 10 mm . They don't think it will shrink much more With the hormone therapy . Started at 16mm . So am pleased with results . Now will be scanned every 6 months . But continue on tamoxifen / zolodex . How are you doing ? X
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi "Stillhere" - wow, 20 years, that makes my 8 years seem quite a short time!  Well done if I may say so... sorry, I don't know your history, if it was a very late recurrence I am so sorry.

 

The onc who prescribed my pyridoxine in 2011 I think has left the hospital.  She told me that it works for some people but not everyone - maybe it's the "placebo effect" but I'm feeling a bit better in myself this week.  It's a long story as to how I got it this time, I don't want to go into details just now, on this public forum.

 

Broccoli and asparagus are NOT "alternative" treatments, they are good nutritious healthy foods!  (tho I've not heard of any possible cancer-related benefit for asparagus - and it gives our wee a strange smell - so does the hormonal treatment Faslodex).  Helpful for 5-a-day anyway.  We eat a lot of fruit and veg, grow some ourselves.

 

Re your suggestion of a meet-up, I don't really do meet-ups these days, but if others are interested, how about the pre-Christmas event on 9 December?

http://www.royalmarsden.org/celebrate-a-life

It's intended as a fundraiser but it's OK to just go along, hubby & I did that a few years ago and were glad we did.

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hallo everyone at the Marsden, whether Sutton or Chelsea. Mrs Blue, maybe we should have a meet-up at Sutton? I'm only going once every 2 months at the moment though. I do feel for all the Doctors, it's SO busy compared with 20 years ago, they all deserve medals. Hate the wait at pharmacy though.....
Interested in alternative treatment ideas but I'm too scared to try them unless completely tested. What does anyone recommend? My latest is broccoli and asparagus!! These are from my farrier, can't do you any harm at least!!
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Mrs Blue I was particularly interested in your comments about taking pyridoxine.I had one oncologist that put me on them for hand and foot syndrome,and when I had used them all and asked for some more the onco that I saw that time said(oh there is no use giving you those they don't work they are useless) so I am now confused do they work for you best wishes Macie xx

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi all

I know what you mean about complimentary supplements. I had done some research on matcha tea and asked my onc about it. He'd never heard of it so decided not to use it. Also did research into AHCC tablets He said I could use them but I think I'm just scared incase it affects the treatment in a negative way.
Jo x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Essiac tea - hmmm, - as with any alternative/complementary treatment, (a) ALWAYS ask your oncs / bcn, (b) do some googling - the Cancer Research UK site has a helpful article, specifically mentioning essiac tea

http://www.cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/diet/managing/alte...

Some people do appear to benefit from these additions to the diet- but I would hope they are having conventional treatment too (this is what's meant by "complementary")

My background - before I retired I worked on a science and technology database for the food manufacturing industry.  But a good oncologist should be open-minded.  I'm on capecitabine, and a megadose of vitamin B6 (pyridoxine) is sometimes prescribed to reduce the side effects (hand-foot syndrome).  I've had to plead for this 2nd time around, but I've got it now  - OK I could have bought it off the shelf at Holland & Barrett, but I'm happier getting it on prescription, cheaper too!

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi no haven't tried It but heard from a friend that she knows of a lady who was using it with good results . But I'm always a bit sceptical about alternative medicines . X
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Essiac tea that is!
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Lucy
Funnily enough I was just looking at that on the internet the other day. Haven't tried it yet but am thinking about it! Have you used it yet? Good luck for your scans. Bought some ahcc tablets onc says ok to use but don't know wether to or not!
Jo x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi
Sjamitch
That's great news on your scan ! I'm hoping things are still reducing too . Will let you know how it goes x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

hi - a bit random but is anyone using essiac tea ? X
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi I am an NHS patient also x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi - to answer your q, I'm a NHS patient Smiley Happy

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

hi all

 

lucy - i am one week into cycle 4 of cape. i had a scan two week ago after cycle three and it showed a big reduction in lesions. hoping that the next scan shows even more! i dont think i'll get another one until cycle 6 maybe or just before. good luck with your next scan. i also travel two hours from the south east coast. the shops and restaurants are really nice around there. might treat myself one day! x

 

Mrs blue - do you go privately or nhs? i am going privately. its pretty well organised so not to much hanging around. so you have been dealing with mets for six years? thats very inspiring! long may it last!

 

best wishes

jo x

 

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi girls, I'm another Sutton Marsden patient, since 2006 (bc/bone mets, + liver mets dx 2009).  Had lots of treatments, chemo and hormonal - now on capecitabine 2nd time around - and the team are excellent.  Specialist BCN for us mets ladies, too.  Tues afternoon clinic getting busier, we've had some long waits, but this week I was seen 20 minutes early! (looong wait for chemo tablets in pharmacy though).  I have PET scans when needed.

PM me if you like Smiley Happy

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi I travel about 2 hours but it's worth it ! I asked for a second opinion and transferred my care there as they suggested a different approach than my local hospital . I have been on hormone t since feb and have had two pet scans to see how it is all doing . Had a good response , some lesions are now inactive and the one on the liver is reducing too .
Have to say there are some lovely cafes along the fulham road !!
Are you due scans soon ? Mine are next month
X
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi lucy21. I am at Fulham road. I'm similar to you in that dx February 2013 and secondaries to liver 2014. It's scary how quickly it spread. Do you have to travel far to get to the marsden? I have already used the hormone therapy but it didn't work for me. Hopefully it does for you. Have you been on it since jan? If so have you had any scans ? Best wishes jo x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi I too am being treated at the Marsden but in Chelsea . Diagnosed with b/c nov 2013 . Secondaries jan 2014 -bone and liver . Transfered my care to marsden after seeking a second opinion there . On tamoxifen - zometa and zolodex . Scans next month to
See how all responding still x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

hi all

 

i am a newbie on the forums but thought i would join in.  i am at the marsden. i live on the south east coast so it is quite a trek in but hopefully worth it! i also have liver mets and am using cape at the moment. its already shrunk my lesions after 3 cycles so im pleased with that at the moment . 

 

stillhere- its good to see that even though you have been through sooo much that you are still here!

its really encouraging the length of time you have been on cape! long may it last!

best wishes

 

jo x

Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Louise and Tracy, I am a long-term patient of the Marsden although my treatment is different. I was seen by their family history clinic as long ago as 1990, had primary diagnosed 1995, mx, chemo, radio then tamoxifen, had 14 years NED, then in 2009 had axillary recurrence, had surgery, EC chemo and more radio, still had small tumour, so more surgery, then in 2011 2 more axillary lumps removed, further surgery after no clear margins, phew this is an epic!! Then in 2013 2 further axillary lumps and CT scan showed hilar node involvement on same side chest wall.
Now have been on Capecitabine for 14+ months, Oncs at Sutton are so lovely and I am feeling very positive. I feel lucky to be in their care although I live quite far away near the South coast.Hope that your treatments go well for you both x
Member

Re: Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi Louise just seen your thread so thought I'd answer, even though I'm not treated at the Marsden. I've just started FEC chemo had 2nd last week. My primary was 14years ago didn't have chemo then so this is my first, secondaries diagnosed last year now extensive bone Mets and lung. I know of other ladies being treated at the Marsden and all good reports! I am currently having Zometa to strengthen bones along with my chemo but I have asked to change to denosamab afterwards apparently this is now the superior drug for bone
strengthening. I'm also triple neg so chemo only treatment option. Obviously hoping FEC will keep me stable for a while but I guess we'll see.
Tracy xx
Member

Who else is getting treated at Royal Marden- Sutton? liver mets and today found out in bone

Hi,
Just being nosey. Diagnosed with primary triple neg BC in Feb. I transferred care to the Marsedn when I was diagnosed with Liver Mets on Sept 1st. I am triple neg and have had no surgery or radiotherapy. Was initially on FEC-T but T didn't work for me. Moved on to Carboplatin and Gemcitabine which also did nothing. Moved to the Marsden when liver mets diagnosed in Sept and just starting my 2nd cycle of Avastin/Taxol. Onc rang today and told me there were areas of concern in my bones but nothing that needed additional treatment. He is sorting things out with my insurance to start a bone strenghtener called denosamab (?).

I would feel less isolated if I could chat via PM to any of you ladies going through similar.

Louise x