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

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

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

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

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

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 :slight_smile:

Hi - to answer your q, I’m a NHS patient :slight_smile:

Hi I am an NHS patient also x

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

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

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

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

cancerresearchuk.org/about-cancer/coping-with-cancer/coping-physically/diet/managing/alternative-cancer-diets

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!

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!!

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

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

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

Sorry I ment team !

Hi Lucy… “coffee shop”?  Which Marsden are you treated at?

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

Coffee shop / restaurant ment x