Hello Karen, another (although ex) Cherrybrook patient! As Carolyn says, it doesn't always rain in Devon - isn't it sunny Devon? Hope you are enjoying having your family close. It does make such a difference, doesn't it?
Haven't tried Force yet, although I know their reputation is brilliant. Can't get myself to go (am really shy and don't much like group activities), but might manage it one day.
I haven't been to the Force shop in Heavitree as it's the other side of the river from me and I rarely visit Heavitree. I do, however, love browsing the Hospiscare shop in Cowick Street and the big one in town. I am in the process of moving to a retirement flat and am currently (with the wonderful help of my sister) ruthlessly getting rid of stuff. It's all going to the Hospiscare place on Marsh Barton for sorting, etc. I am finding it hard to believe that I have accumulated so much stuff!
Hope everyone is doing well today. I'm enjoying a very lazy morning in bed reading and posting! Hugs to all. Barton.x
Hello Carolyn, yes, Cherrybrook! They are so kind, aren't they? I'm in there on Monday at 10 for my blood transfusion, then with Dr G at 1.30pm on Thursday then Cherrybrook at 2.30pm for (hopefully) next lot of pills. Don't know when you are due next, but good if we could cross appointments as it were! Have private messaged you. Hugs, Barton.x
So you were a Cherrybrook lady too. Force is a wonderful service that is lovely although I havent used it yet. Back in 2004 when I had the primary bc - I went to one of those Looking good days there and it was really great . Force are all charity funded from their wonderful charity shop in Heavitree which is like a Aladdins Cave of bargains and I have missed going there but must try to get there in a few weeks for a browse. I also donate a lot of unused stuff too.
It doesnt always rain here in Devon !!!! In fact we have been able to sit out on our decking for early morning coffee a lot this Winter .
Im sure you are in good safe hands now too and wish you well as you really need a good support team of family and friends in place around as we do have a lot of bad and good days with our treatments and need them near.
Hi Sharon I thought you were going on h and p too I must of picked it up wrong. I still don't know what to do about the extra two docetaxcol I can have if I'm ok can't decide what to do X X
You must be like me ..........I think the original tumour had to be HER positive for the magic of Herceptin to b any use and I am not !!
I know a lot of friends that had this and tolerated it well and of course no hair loss like chemo.
I have had a similar experience as your Mum so maybe I can help? I had my bone mets dx nearly 5 years after my primary. At this point I was still ER and PR+ (and HER2-) I was also on hormone treatment (anastrozole). After nearly 5 years I was then dx with liver mets. Having read on this forum about the fact that receptor status can change, particularly HER2 status, in up to 30% of cases I insisted on having a liver biopsy done. This showed that I was now HER2+, as well as still being strongly hormone postive. Therefore hormone treatment alone would not have kept my mets at bay. I did have Capecitabine which kept things stable, and shrunk most of the liver mets, for nearly 18 months - which is what I assume your Mum is now on? I couldn't have Herceptin at the time due to low heart function, however I am now on Herceptin along with a similar drug, Pertuzamab and still take the hormone tablets. If her liver mets are accessible it would be useful to have a biopsy done to check if any of her receptors have changed, if they haven't it's still not a wasted procedure as it will just confirm she's on the right treatment, if they have changed then so can her treatment options.
Feel free to ask me any questions. It's great you are being such a support for your Mum, I know it's tough for our families and my own daughters (both in their 20's) find it very difficult at times - and believe me there have been some very difficult times for us.
Hi Sarah Louise,
I was diagnosed at the end of October (originally just with lung mets but now confirmed I'm a bony lady too). I'm being treated at the Churchill. I'm on Zoladex and Anastrazole and about to start on Denosumab.
I went to a BCC Information Day in Oxford and Lucy Ridgway, a physio from the Churchill gave a very useful presentation on exercise. Might be worth asking if you can speak to her but the key point she made for bone mets was that taking measures to avoid falls is key so avoid contact supports, actiivities that need you to act quickly (e.g. netball, cricket). If the spine is affected, she said you should avoid large movements of the neck/back such as going all the way forwards to backwards, large twists, combined movements - but if an exercise involves the same movement as everyday activities then it’s no riskier than those tasks.
Hope that helps,
I haven't posted in a while, but looking for some guidance!
On here for my mom (caregiver). Mom was diagnosed stage 4 BC with mets in bones in November 2012. letrozole worked great until this past summer. Tried Tamoxifen and it didn't work. Now she has two small mets on her liver. She is now on Afinitor and exemestane. She says she is feeling great. She has bone pain and takes hydromophone to help.
I have mentioned to her about this forums for support, but she is more introvert I suppose and looks to herself for inner strength, and her family. I try not to talk to her about it too much because I don't want her to see how worried I am. She is my everything and I am scared! I go through days of feeling empowdered and strong, to days where I am completely lost and scared. I wish I could take this cancer from her. Oh how I wish.
Just looking for some helpful stories from ladies with bone and liver mets. Scared treatments will stop and this is her first Chemo so I know there are others. This one is a milder one...oral. But scared for when she goes on strong ones and wonder if her body can handle it. Asked the doc yesterday if they should do another biospy but they said she was diagnosed stage 4 3 years ago with estrogen positive and it is very rare it would change. Hmm..
I'm from Ontario, Canada. Joined a group from home base and it was very depressing and not as active as this one.
Guidance and hope please!
Hi LadiesI was a Cherrybrooke lady but we have now moved to Winchester. Do you use Force across the car park they were so helpful. I miss rainy Devon sometimes but my family are all here in Hampshire which is great. Carolyn I agree about the flu that's why I have hesitated in telling people there is much ignorance out there.
Try looking up Second a Hope it's a new charity that just deals with secondary breast cancer.
hope you get your meet ups.
How nice to find someone in Exeter too and so you are under the safe hands at Cherrybrook Oncology too. Maybe we ought to meet up sometime and "discuss" our ailments as although family and friends are brilliant - sometimes they think - shes taking the pills now and its like the flu - it will go away !!!!
Hello Carolyn, I think we probably attend the same hospital as I live "a long way away" too, in Exeter. I agree, it's difficult to get to other places in the country. I might try the tonic water trick, on your personal recommendation. Not a fan of ginger tea, though. Hugs. Barton.x
Carolyn I too am a member of the private FB group. I have found the ladies offer loving support and are happy to share their experiences, It's very like this forum. You may find it helps. Sometimes too much talk about SBC can increase anxiety. I dip into both groups. Love to all ladies. Sue x
The charity is called Second Hope http://www.secondhope.org.uk/
The interview can be seen here.
Private message me if you want to find out more about the online support group she is referring to .
Hiya Sarah Louise and all.
Im in Devon so a long way away from Oxford . Dont think there are many ladies that live this far down so Im glad of the site !
It sounds like your first chemo has been very easy to tolerate and that you are fit and active which is good. Ginger tea is very good during chemo and if you do get a sore mouth - I found ice lollies very helpful.
Back weeks ago there was a posting on the thread about having a glass of tonic water before bedtime and I tried that last night and wow ...slept for 6 hours without a wee or sweat etc. so thank you. ( Of course I would have preferred a splash of gin to compliment it but never mind !!)
Just watching Lorraine Kelly on breakfast tv this morning and there was a nice lady on it also with secondary bc for 4 years and has set up a website for support so I think you have to go on Breakfast tv website to find the thread. Might be another source of support for us elite ladies with bone mets etc !!
Hi Sarah Louise, i don't post here very often but follow the thread closely.
I am also at the Churchill. Breast Cancer Care has a monthly meet up on the first Thursday of every month. There are a few ofus who are local in the group. There is info on BCC website.
I have recently changed treatment due to progression. Still I did well 4 years on letrozole and Hercpetin. Letrozole has been switched for Exemastane. Glad to report that I have had no side effects. Will know in April if it works.
Hi Glo..you mentioned in yor post that your tumor markers had gone right back down to normal...what is 'normal'?
I havge skin mets which are very dificult to monitor as they dont show on scans etc so i asked for my TM's to be done....wish i hadnt now as they have gone steadily up from 37 to 51. Onc Dr told me not to worry about small jumps but i had been hoping for a little drop after starting different treatment...just something else to stress over now!
Scratch...good luck for Thursday...scanxiety is truly awful...i even got it before i had pre op tests which didnt even include a scan.!
I know you have had lots of lovely replies, but for a little bit of inspiration, have a look on the "but doctor I hate pink" Facebook page. There is a link to an item on a USA news show where 18 years ago a lady was given 18 months to live - 17 treatments later (over 18 years obviously) she's still living a great life!
Im all for anything that makes life less painful and will be interested in keeping up to date with how you do on Devils Claw though. Please keep posting on your progress.
I have bone mets in hips pelvis and knees and am not sure if its the Letrozole causing me so many aches and pains or the actual cancer !! BUT needs must and if this little pill daily keeps control of the bone mets I will keep taking it !!! Hopefully, in years to come they will find the magic bullet that doesnt cause any side effects and cures us !!! If not in time for us - maybe the next generation of women will get more advanced treatment,
My Mum had breast cancer in 1968 and just had a basic masectomy .. no rads or chemo afterwards but managed to keep going to 1975 when she died. She did lots of trials near the end of her life - early chemo and a trial where they took away the pituary gland in an attempt to stop the cancer spreading. Back then breast cancer was very rare and not talked about Forty years later the survivor rates are so much better and treatments so much more advanced.
I have just googled devils claw and although Im a great fan of vitamins - dont think I would risk it with the cancer drugs some of us are taking as it does seem to have side effects that could interact with our treatment .
It says that it should not be used if you are taking warfarin - when I had my PICC line in for chemo back in 2004 I took warfarin to stop blood clots and its a hidden danger along with heart probs etc.
Please excuse me if Im speaking out of turn.
Hi Sarah Louise, I'm also doing well after primary in 1995, recurrences in 2009, 2011 and a secondary diagnosis in July 2013. I've never been given a prognosis either, just told that I can be treated, probably for years. I've had no further progression since then on Capecitabine and Fulvestrant.
At the moment I am fit and well, gave up work after my secondary diagnosis and am lucky to have a lovely outdoor life with 2 horses, 2 dogs, a wonderful supportive husband and 4 kids between us in their 20s who have all left home.
I have down days as we all do but I also feel blessed.
London 1, I haven't tried Devils Claw but, don't laugh, it's a tried and tested supplement for equine arthritis! It's been very effective as an anti-inflammatory for one of my horses xx
Hiya Sarah Louise .... So glad you have had a good response on this board as there is a wealth of knowledge and kindness here.
I think you are very brave to try the cold cap but the success rate is very good from what I have been reading and you will feel better with some hair !!! I think you might loose a little hair but Im sure they recomend that you have it cut short, dont wash it or brush it too much . As your immune system is going to be low - you need to avoid public places and you know the biggest source of germs ? Library books and Gym Equipment ... thats a big surprise but its true. As you are so young Im sure your treatment plan will be the very best that they can offer ...where abouts are your receiving your treatment to ? ( dont answer this if you dont want your location known )
I would say to avoid too much googling on breast cancer as there is so much quacky stuff posted from various people that it gets very confusing. The one thing I do find interesting is the blog from Victoria Deryshire ( she is a bbc presenter) and going through chemo now with the cold cap and that might be worth a little visit.
Apart from my cancer pills I do take vitamin C and cod liver oil tablets everyday - one to try to keep colds away and the other to stop my bones cracking !!!!
Not very sure that this posting is very helpful but I thought it better to post some twaddle so you know there is support for you out there then not post at all . You will probably think " oh no not her again "
I get really annoyed that consultants quote figures like that, as others have said, as they are often out of date and don't take into account new treatments that are currently being used. Grrrrr. It really doesn't help anyone other than make us, the patient, anxious and scared. As I've said to you on another thread I have been living with mets for 8 years now so 'statistically' I should have been dead for 6 of those!
Hi Lynn, how lovely - a walk on the beach 😊 And I'm glad you are having such a lovely time, it will certainly re charge your batteries, enjoy the rest of it.
Hi Sarahlouise, please don't think too much about what onc has said about your prognosis, quite honestly nobody knows he/she is just going off statistics!!!!! Which due to new treatments these are now outdated. Cancer is so individual and no one person is the same, my onc has never mentioned the word prognosis all she told me on my first consultation was it cannot be cured but can be treated.
Hugs Janette xxxx
Hi Sarah Louise
I am on holiday at the moment so not been posting much. We are having a lazy evening so just thought I would catch up.
i was diagnosed Oct 2012, primary and secondary at the same time.....I have only ever had Letrozole as my cancer is strongly ER+.
Had secondaries in spine and peritoneal area and skin. Was told a prognosis of 2-3 years, and the peritoneal
may be a little less. My peritoneal mets are no longer showing and my bone mets have remained stable, and/or healed. The one skin met I had was removed and never recurred, so these Prognosis they give us are just numbers....here I am more than three years later - still get anxious and have sleepless nights but proof that they are often inaccurate....
hi to everyone else...due to fly home on Thursday, had a wonderful time, went for a lovely long walk on the beach today - can't believe how well I feel
best wishes to all,
Hi Sarah Louise,
Welcome to the board although sorry that you've had to join us. Re the prognosis, so much depends on how your cancer responds to the various treatments that they really can't tell at this stage, so please don't take it as a given. I think 2 or 3 years is some sort of overall average but that doesn't tell you how you will do. All the best with your treatment.
Hiya Sarah Louise , Think by swapping to bone mets board you will get a lot more support from ladies that have a huge amount of knowledge and kind hearts too,
I think the one thing in common between all of us is " CHEMO" most of us have had to go that route sometime in our journey. I had mine in 2004 - FEC/CMF which was 12 sessions but if I remember I was ok through it apart from the hair loss which if you are like me - vain - I hated . Not sure if you have decided to have the cold cap ? a lot of the ladies here have used it and managed to keep some hair and dignity !! I had a nightmare with the wigs .first one I opened the oven door and it caught fire almost . Second one I got paint on when I decided ( chemo brain) to paint the garage doors and the third one the dog ate. BUT by this time the hair had started growing and so I didnt need to risk a fourth one !!!!
I first joined this board in 2004 with the primary BC and met a lovely lady called Sue who was living in Spain and very scared being in a foreign country and we became daily e mail buddies for 7 years and I even went to Spain a couple of times to stay with her . I rejoined in October 2015 when I got the dx of bone mets but I must confess didnt visit here for many years in between as I think I just thought I needed to move on and had beaten this deadly thing.
During the chemo dont be afraid to ask for help from friends and family especially with the kids etc and please use this board at any time when you are feeling down as most of us dont really sleep much and someone will reply to you at any time of the day. Im very familiar with silly night time tv and doing candy crush type games at silly o clock too.
Love Carolyn xxxxxxxxxxxxxxx
Hi Janette..i took arimidex for 2.5 years until it stopped working bt apart from usual se's...aches and fatigue iy was fine. Hope it works for you should you go ahead.x