Good to hear from you Hemly31, It helps to hear from someone else in a similar stituation. So many of my friends have already got children and it's hard knowing that's just not going to happen for me now.
I too like to read up about eating the right foods and the right lifestyle and alternative medicines but feel so cross that I am actually at my healthiest and fittest I think I've ever been and yet I've got secondaries so can't be!
I'm still waiting for a start date for my chemo and Avastin which I'm going to be having from home which will be a big help but I feel in limbo at the moment until I get a date! It's supposed to be starting next week but nothing's happening yet!
I'm hoping very much to be able to come to the Cinderella Day on 6th May at the Ritz - health and treatment allowing - I will be due for my next PET scan in London around then so I may be able to combine the two!
I can fully understand your disappointment missing your holiday. It has been a long-term wish for me and my husband to go to Australia and New Zealand and I'd been saying before my most recent diagnosis we'd do it for my 40th in 2 years time. I'm still determined to get there but it may have to be sooner -health and finances allowing. I think it's important to have things to look forward to and for me to keep planning ahead however hard that seems right now.
Anyway hope your treatment continues ok and the nausea doesn't get any worse.
Take care and do keep in touch.
ive totally missed the updates on this post!
Anne, i know it hard to cope with this disease on a day to day basis. Same as you my onc never actually went through the serious side effects they mentioned i would be tired, nose bleeds etc... but nothing major. Only when you read about it on the internet you get a fuller picture of the side effects. Im hoping that my age is on my side and i wouldnt have too many.
Like you after i finished my primary BC treatment last year iv been looking forward to getting back to 'normal' - what ever that is now, and hoping to start a family but that seems a long way off and out of sight. I was also due to go on a long holidat a day after i got diagnosed with sec's, so was a massive blow for me and my husband and family. I feel exactly the same as you, you are not alone.
Ive had 2 rounds of my treatment at the moment and i feel myself getting tired more and more, ive been getting nausea alot and very sensitive to food smells as i would instantly feel sick. Same as deidre i have bad constipation and piles which doesnt help at all, but i find that eating prunes helps alot.
Ive been looking on the internet for alternative medicines and have come across Zeolite which has been proven (not scientifically) to help fight cancer and in some cases you cant even see it on scans. My uncle also recommended me Graviola, but i could find that much info on it as i think it may still be new.
Also having a healthier lifestyle helps eliminate the toxins in your body, eating the right foods etc... My mind goes into overdrive as there are so many other things we can be doing to help but i suppose you have to shortlist to those you feel will benefit you.
Amber, i think the main reason why i have this combi is that i was given Taxotere in my primary treatment, but i found that between the last chemo and surgery the tumor started to grow again. So i dont think the docs think that tax was helping me hence giving me this combi. I havent heard anyone else with this combi so yep sounds a bit scarey to me, but hoping this is going to help.
I think some secondary ladies are planning to meet up soon, im hoping to meet up with them too, be great if you guys could come too.
keep in touch
I just wanted to say Wow that is a very potent combi you are on, I was DX at 32 with primary and very soon after 2ndry, I had FEC 1st time round with the C part being carboplatin - it worked very well for me and I had a complete response, BUT it knocked the socks off me, but all worth while as good end results.
I have also had Taxotere and RFA to my liver, just about to start chemo no 3 which will be xoleda along with herceptin. I was Dx in 2004 and have just had 2 1/4 years of wonderful chemo free time. I'm just coming upto 4 years of having 2ndrys. I am fortunate enough that I have a daughter (who 9) but find this the most difficult part of coping with this illness.
I wish you lots of luck - you certainly seem to be on a no expense spared regime as I know lots of women have tried to get gem & avastin alone but nice guidlines and post card lottery seem to prevent this.
Stay in touch
Love amber xxx
Deirdre I was on the combo for 6 months. I only had a slight shrinkage but all of my symptoms went away. LOL I had wierd symptoms with my lung mets and at first the onc thought they weren't really symptoms. Now he believes they are my symptoms ever since they came back after an 11 month break from chemo. I did the combo and then my onc felt it was time for a break said he wouldn't keep anyone on the combo for longer than 6 months. It was still working when he stopped it so I can go back on it any time. After the 11 months when I started to get symptoms back and my lungs looked more congested but the tumors were the same he decided on vinorelbine. I have been on that for 9 months and the symptoms went a way and the tumors reamin stable. My symptoms are post nasal drip, cough during the day, shortness of breath, and this wierd sneeze. The sneeze doesn't start tickling in my face it starts in tickling in my throat and goes up through my face. It is hard to explain but I only have it when my mets are on the move. Funnyface
Hi Anne, I was diagnosed with secondaries last August - initially just to a couple of places in my spine and ribs. At Christmas, however, scans showed progression in my bones (despite being on a hormonal) and spread to my lymph system, so they got me onto Avastin.
I am afraid I have quite a bc history. First diagnosed five years ago with DCIS in one breast. I had a mastectomy and went away belieiving all would be well. Then three years ago I had a lump in the other breast and spread to one lymph node. So another mastectomy and chemo. Then eighteen months ago I had a new lump in my reconstructed breast - several in fact - just come up seemingly overnight. So I had lots of WLEs and radiotherapy. Then secondaries diagnosed last year. It's been a crap shoot really. But I am still here and really hoping this avastin/tax stuff does the business.
Avastin has just received an advanced approval by the FDA in the US. If you go to www.bcmets.org you can read about it. For those of you who asked about how avastin worked. Tumors are know to make their own blood supply system and avastin works to destroy this system, so that the tumors will die. Avastin is not a chemo. I had avastin in combo with abraxane. I had abraxane on week 1, 2, 3 and week 4 off. I had avastin on week 1 and 3 with week 2 and 4 off. In the US they also watch your kidney function when on avastin. The avastin did cause nose bleeds for me and I had a lot of temporay nerve damage in my arms, shoulders and legs. This all did go away withing 6 months after stopping the avastin. I did continue work through this treatment although at night I was in a lot of pain from the nerve damage, I found relaxing in the tub to be quite helpful. Good luck with your treatments. Funnyface
Thanks for that Deirdre,
It's so good to know I'm not alone even though I wish none of us had to go through this at all!
It will be good to compare notes - my oncologist seemed to be playing down the side-effects last night so I'll wait and see. I'm intending to keep working ( I only do about 14 hours per week anyway) but we'll see how it goes.
I'm mostly holding it together but I've had quite a few tearful moments today when it all seems to much - it's like I can hear this really strong positive person phoning everyone and saying I'm going to be fine (that's me by the way!) and then it's like there's this person underneath all that saying it's not fine and how the heck are me and my husband going to get through it! It is early days so we'll just have to take it one step at a time. It's hard to believe it's only 10 days since I had the CT scan toatally unaware anything was amiss and just 8 days ago I was having such a lovely 38th birthday still hopeful of a family but I know I've a lot to be thankful for too. It's all a bit of a rollercoaster of emotions at the moment and I guess we have to learn to take it slowly!
When did you have your secondaries diagnosed and when were you first diagnosed if you don't mind me asking?
Take care and do keep in touch.
Oh Anne, what a horrible time you are having. I don't even think I can begin to understand what it is like to be planning to start a family one day and then looking at secondaries the next.
I started taxotere/avastin two weeks ago. I am getting it at the Marsden as part of the ATHENA trial. I am meant to have both drugs every three weeks - although I spotted on an American site for people with metastatic breast cancer that your treatment schedule seems more common.
I haven't experienced anything reallly awful till now - the worst is a horrible sore throat, dry lips and terrible taste coupled with tiredness. I have also found the skin on the back of my hands became quite itchy and an old blister reappeared! The Avastin has given me some horrible crusty scabs in my nose. The steroids gave me acne and made me restless. The operation to put the portacath in gave me horrible constipation and piles! I do generallly feel more vulnerable, though, and get quite paranoid about infection.
Avastin was approved today by the FDA, who originally turned it down. The press release from the manufacturers says that it shows a 50 percent reduction in risk of death or progression and a doubling in the average amount of disease free time after treatment with tax/avastin compared to just tax alone (up from just over five months to nearly a year).
Please do let us know how you get on. Like you say, it will be good to compare notes.
Hi Hemly and everyone,
I was just diagnosed last night (following a routine CT scan and then PET scan)with secondaries to my lungs and lymph nodes around my neck. Am 38 (as of last week) and was first diagnosed with just one lymph node affected in Dec 2002 at 32, had mastectomy, FEC chemo, 2yrs Tamoxifen then came off that to try unsuccessfully for a baby for a year and then found tiny lump last March 2007 which was a small primary recurrence on the scar which I had removed and then 4 weeks of radio last June. I delayed going on Arimidex with Zoladex as still hoping against hope to be able to have a very much longed for first baby. My oncologist agreed to refer me to a fertility clinic at my recent check-up but offered tumour marker tests and a CT scan just to check all was ok before embarking on this. Things went downhill from there and the last ten days have been a blur to be honest!
My oncologist has recommended Avastin for me too along with Taxol chemo. The Taxol will be given weekly and the Avastin fortnightly and I hope to start as soon as it's all set up. I'm very lucky that my husband has private insurance through his work as I understand Avastin is not yet licensed on the NHS.
I'd be interested to hear how others get on with Avastin and we could compare notes.
My oncologist seemed to be playing down the side-effects yesterday and seemd to think I could go on working so I'm going to play it by ear. I had FEC last time and round the loss of energy the hardest thing to cope with but I wasn't working at all at the time.
I'm determined to keep positive. My husband is finding it very difficult to accept but I'm just in pragmatic mode at the moment.
Take care all,
Hi there, I am currently enrolled in the Avastin trial, and had my first treatment yesterday. Here's what I know about Avastin.
The drug works in a different way to traditional chemos in that it intereferes with the cancer cell's ability to establish a blood supply. So the cell, in theory, dies. It is thought to be one of the first of a new type of drug - there are several more in development.
I have details I printout of a trial in the US which combined a taxol (taxotere or paclitaxel) with avastin. It showed that the Avastin added to the tax slowed down progression or stabilised the disease in the majority of cases, increased the number of weeks to progression and, in about 10% of cases, resulted in complete remission.
The trials in the UK have not been going long. Certainly the Marsden has just started a trial and they have - according to information I got yesterday - only recruited 8 people to the trial so far.
I think one of the issues in getting onto the trial are:
1. You must have measurable disease. Apparently, bone mets alone will not get you onto the trial. They are not classed as "measurable". You need some some tissue or organ involvement, such as lymph nodes (which I have), lungs, liver etc.
2. You must not have been treated with a taxane before. Considering that treatment with taxotere has been standard for about three years there are many women who are excluded because they had tax during their primary treatment.
My treatment schedule is three weekly tax/avastin for six cycles, then continue with Avastin along after that.
It's by no means a cure, but the 10% who are currently in remission gives me hope.
Oh, and another good thing about the trial is that if the Avastin is working they will keep you on it at the end of the trial - so no fighting NHS trusts for access to a very expensive drug (I have been told it costs between Â£70,000 and Â£100,000 per year for treatment.
Hope this helps.
Avastin is going through clinical trials as a breast cancer treatment here in the UK so it is not widely known though it does receive a lot of media coverage. It is more commonly prescribed (off-label) in the US as the FDA turned it down as a BC treatment because of side effects such as the following:
"Avastin, like many cancer drugs, can cause serious side effects like cardiovascular problems and bowel perforations and even some deaths."
In the UK there are Avastin trials for 1st line treatment of metastatic breast cancer taking place, so if you haven't needed chemo yet, it may be worth asking about Avastin trials.
Would you mind explaining why avastin is good? What are its advantages? I know I could look it up but good to hear your views of it! and if you dont mind me asking at what stage you are? also Deirdre too? I have secondaries in my spine and both lungs (dx nov) (and previously in 05 in my breast bone - which settled after rad) and in nov was just given radiotherapy to my spine and arimedex for lungs and recently started ibandronate (biphos) - i have a scan end of march to see how its all working and feel well, still working and going to the gym all as normal - but just wonder now if i should be mentioning avastin and why its not been mentioned to me? maybe cos only new sec in one vertebrae, and 4mm and 7mm tumour in lungs - so tiny? maybe its too early? (was all picked up on routine scan - was very fortunate as still have no symptoms).
Just wanted to say that I am about to start on Avastin. I have secondaries in my spine, ribs etc and various distant lymph nodes (abdomen, chest, etc).
I will be having Avastin with Taxotere.
I'm being treated at the Marsden and this is part of the Athena trial.
I found my secondaries diagnosis really hard to deal with, and still have my down days. It does get better.
I have read some stories about Avastin that give me hope. Apparently there are at least twenty other drugs that work in the same way as Avastin going through development right now - Avastin is seen to be the first of a long line of promising new drugs. Fingers crossed for us all.
i am working still, but its not easy. my company has been quite good in the sense that they are letting me be flexible, I have a computer and can log in from home and do alot of work that way.I am managing to do my job by working when I am able and still going to office. Really it helps keep me sane as I have other things to think about ,.. so I will do this as long as I can, but each to their own, and everyones work and situation is different.
I am not suprised that you are being treated privately to receive avastin, it sound like your consultant is doing the right thing and being flexible thinking of good ways to treat you. There is that little bit more flexibility in the private system (its not better just different in my opinion)
Shock to the system just doesnt cover it, it really doesnt...but I have had encouraging results on latest scan so hoping to be around for a while longer.
Cathy, Avastin has been given to me through a private hospital in sawbridgeworth nr stansted airport. I saw a consultant in harley street who recommended the treatment as i cannot take any of the hormone drugs really puts me in a disadvantage, so this was the next solution. My consultant was able to get the drugs for me so i could stay at my local hospital which made sense since i only live 20min down the road rather a trip on the tube.
Im coping not that great this time, its really a shock to the system and im finding it hard to actually believe that this is going to make a huge difference until i actually see results. im v keen to get back to work but my health comes first so i think im going to take things slow. Are you still working?
here i go again, I always start typing these messages and they disappear, so I will start again. I can't say how sorry I am that we have to chat on these boards, its really terrible to say the least. I am 43 with a husband and a 12 year old son, found out about liver and bone secondaries in november,
I am just resurfacing from taxotere number four, tend to have one or two really bad days and then feel tired but relatively normal. I wonder how you are getting on with the Avastin, there has been alot of chat about this one probably just before you joined us. There is one lady on the liver secondaries forum who has had good results with avastin, I know she wont mind me mentioning, but it isnt in widespread use is my impression. Out of curiosity if thats ok where are you being treated?
How are you coping ? I am arranging counselling for myself, and will see if that can help, not sure but I think its worth a go. It might be helpful talking with someone else. I find that if I am rested I can cope better, but it is hard with so much to do! If you haven't done already do have a look on the liver secondaries thread, there are a number of us there with common experiences who are going through treatment, and all at slightly different points.
Im 29 and was initally diagnosed with BC back in dec 06 underwent a greulling year of chemo was on FEC and Taxotere, L mastecomy and lastly radiotherapy. thought i was in the all clear to start on with my life but found out last week that lung and liver secondaries.
The site has been great in getting knowledge and other peoples experiences and the support sounds great too.
As a young women its just a massive blow to life i cant even look more than past this week let alone my urge in starting a family which maybe shattered forever. I took Zolodex last years to put my ovaried to sleep which seemed to work as my period came back in dec 07 which i was over the moon about. But then got more bad news.
Im back on the chemo with Avastin - Gemcitibime - carboplatin with another 6 sessions. Started this treatment last tuesday and came up with a pretty bad fever and very very tired, 5 days later im feeling alittle bit normal again.
It would be great to hear from some of you who are my age whether you have had this drug or are living with cancer secondaries and your experiences.
sorry if i have repeated myself as i introduced myself on the living with secondaries page but thought i should do the same here.