Just be told this morning that the ‘C’ word is back in two places. Absolutely devastated and can’t sleep. Still need to have a MRI scan to see whether spread to spine.
Have primary in 2010 - mastectomy, chemo & rads.
Very young twins (4.5 years) to deal with and husband fantastic.
Onc suggested taxol weekly and bone strengthening injection ever 4 week. Is this the normal procedure? I have taxol last time and shouldn’t I should be prescribe a difference type of chemo as surely it didn’t work last time. Wondering what any of you have if your condition same as me.
Sorry about ramblings on as totally out of my head with worry whether this is the end of the road for me? Do anyone seek second opinion of the diagnoses?
Oh so sorry Kenni,that you have joined us.but You will get loads of support on here ,the ladies are wonderful and so knowledgeable . I can’t advise you on chemo as I haven’t gone down that road yet( primary &bone mets diagnosed at same time) but lots of ladies on here will have and be able to give you some advice. If you have bone mets your onc will give you bone strengtheners .i have zometa every 3 weeks for bones.
It’s an awful time when you are told but it does get easier to deal with. We all will still have wobbly days and that is normal.
It is certainly not the end of the road but the start on another road.
Sending you a huge hug,Helen xxxxxxxxx
Dear Kenni
I am sorry to read your news, you have come back to the right place for support and information. In addition to the support here our helpliners are on hand with practical and emotional support on 0808 800 6000 and lines are open 9-5 weekdays and 10-2 Saturday so please feel free to call
This link will take you to further support ideas and information about treatments for secondary breast cancer which I hope you will find useful:
breastcancercare.org.uk/secondaries
Take care
Lucy BCC
Dear Kenni
Thinking of you as you have had such devastating news.
I was diagnosed with secondaries in bones in 2006 (3 weeks after my primary diagnosis) and liver “mets” in 2009. I’ve had several different treatments (chemo and hormone therapy) and have just had stable scan/blood results. I hope this may encourage you and others living with this disease.
Weekly Taxol (paclitaxel) is a tough chemo but can be very effective. Do ask your medical team, maybe you had a different chemo drug, Taxotere (docetaxel) as part of your primary treatment?
Bone-strengthening drugs can be given as injection (denosumab), intravenously (often Zometa - this apparently has some anticancer activity too), or tablets, I’ve been on ibandronic acid tablets for years now.
It is good that you have a supportive husband - this forum is a great place for support too.
Hi Kenni I was diagnosed in September with secondary in and around sternum. I have been prescribed arimidex and bone strength stuff. The thing I could not come to terms with was why was it not operable?
So I challenged it by getting a second opinion from an orthopedic consultant. She was marvellous and sat me down showed me my scans and where the cancer was present and explained, in detail, why it was not possible. Ok I was disappointed , but came away with a much better understanding of what was going on in my body. She reassured me that the meds I have been prescribed were exactly right for me. If only my onc had reassured me in the same way, I don’t think I would have seemed out another opinion
Now waiting for MRI on spine. … Feel like I’m in a fog and mentally and physically exhausted. I really feel for you especially with twins. It certainly helps to off load on a site like this and you spill it out in the wee small hours when you can’t sleep ( like me right now…lol)
Whishing you all the best, please come back for a natter. I will update too
Hi Kenni and everyone,
I’m so sorry that you’re going through this, the turmoil, the not sleeping and everything else. I understand what you’re going through though because a couple of weeks ago I was diagnosed with mets in my liver and possibly bones too (blood test showed high levels for bone mets), following an initial BC diagnosis in 2011, chemo, mastectomy and rads. The bone scan results I havent had yet, although I expect the consultant has them. I will really have to chase him up but am hoping that “no news is good news” although our hospital is very lax about keeping patients informed from what I overheard in the chemo clinic this week.
I have currently had two doses of Taxol (I had Docetaxol and FEC in 2011) and am having Taxol weekly for 18 sessions. The dose is a bit weaker but already I am feeling washed out and knackered but I manage to pace myself through the day and only do what I can. Mentally I am finding it difficult to keep positive although reading the posts on this thread has made me realise that there are lots of different options out there. It’s so encouraging to read how some of the ladies are doing.
I am older than you, 57 and my two sons are in their 20s although they are currently living at home. So we are three adults which helps to share the load and they are a great support.
It is interesting to read that the bone mets can be stabilised with injections (if I do have bone mets) because I have been anxious that I ought to be having another chemo potion alongside the Taxol and have been missing out. Injections seems a bit more manageable.
Sorry for rambling, Kenni, it’s just that there’s so much to say and ask and worry about, it all comes out in a huge rush.
I hope you can find a way of sleeping a bit more - it’s so important to rest your mind and body.
Sending love and hugs your way xxxx
Hi to all, I just wanted to say Hi. I was diagnosed stage 4 from the very beginning, ten years ago, 2003.
I have bone mets and some soft tissue mets. The last ten years I’ve had both hormonal and chemo treatments and bone strengthening (bisphosphonates) treatment. Some treatments have worked for years at a time. Arimidex worked for 3 and a half years, Capecitabine (Xeloda) worked for over 4 years.
I feel well and have enjoyed long periods of stability these last ten years. My Onc uses tumour markers to monitor how well a treatment’s working along with scans. As one treatment starts to become less effective I’m started on another. I still have a number of treatments to try.
Kenni there wasn’t anything you could have done to prevent your bc coming back. Unless you have a new primary your cancer hasn’t come back it was always there, some micro met from your primary stayed from the very beginning and it’s now made itself known. Whatever you might feel you could have done to prevent this it would not have made the slightest difference. Don’t blame yourself in any way.
It’s often thought if only we had done this or that we could have in some way have prevented breast cancer. I know so many healthy, vegan, vegetarians, sporty, slim women who breast fed and never drank alcohol in fact they ticked all the boxes to not get cancer and yet still they find themselves here. I ticked all the right boxes I’ve just mentioned to be highly unlikely at risk of breast cancer. :smileyfrustrated:
We all find our own way of moving forward after our diagnosis. It can take a long time to process all your thoughts and fears, it really does feel one step forwards and two back at times. But one day cancer will not be your first thought on waking. Good Luck to all. x:heart:
Hi Chris. Just helping with a little advice about Xeloda/Capecitabine - which is its generic name. There is a long thread, recently bumped up by swanie, about Top Tips for Capecitabine, its well worth a read to prepare you. Having said that don’t think you will get every side effect! I have been on Capecitabine since Feb when my liver mets were found and I have found it easy to cope with, certainly in comparison to IV chemo. The main SE that affects most people is the sore hands and feet so you will need to keep them extra moisturised, especially in this cold weather when hands get dry anyway. Do have a look at the thread, I’ll bump it up again if its dropped too low down the page. It has shown to be effective for my mets, shrinking them by about half and that’s without my other complication of being HER+ but unable to have Herceptin at the moment, but that’s another tale! Good luck to everyone with new, and older, diagnoses, its a tough time but somehow over time we all eventually seem to deal with it in our own way.
Nicky x
Dear Chris
In addition to the support here our helpliners are on hand weekdays 9-5 and Sat 10-2 with a listening ear for you on 0808 800 6000
Take care
Lucy BCC
Hi again Kenni
I know that when we’re anxious about our disease and its treatment, we can sometimes be confused about information. So I hope it’s OK if I comment on what you said in your post, “Last time I have ECT for chemo without the F as my onc said it doesn’t do anything to the cancer.”.
FEC (5-FU, epirubicin, cyclophosphamide) is a combination of 3 chemotherapy drugs that is often given for primary bc. There is also the EC combination (without 5-FU), I had this in 2009-10 and it was effectve for me. There is another chemo drug, capecitabine, which is taken as tablets - the drug is converted to 5-FU in the body, particularly within cancer cells (amazing that the researchers have developed this one!) I did very well on capecitabine for two years. “ECT” is something else - not a cancer treatment!!
I do hope this is reassuring, and not confusing, for you. If you are puzzled, keep asking your oncologist or bc nurse, or ring the BCC helpline. All these professionals should be able to help those of us who have a lot of anxiety - or if English isn’t our first language … etc. And if it helps, keep posting to these forums. Many of us have experience that can help others.