Hi, am sure it is possible am still suffering side effects fom taxol just now as it damaged my nails and they are lifting from nail bed horrible to look at but healthy nail behind it, how long have you had secondaries for I was diagnosed in march with my original diagnosis in 2009 xx l
hi I have liver mets and I also have to come off taxol due to side effects just on herceptin now ,I would like to think it could well be possible to go into remission with secondaries in numerous places with treatment advances as they are .I'm sure there wil be someone on here who can enlighten us more x
I have bone, liver and lung mets all small lesions was on taxol but had to be taken off due to side effects. I am now on capecitabine and its working great according to blood results which are all in normal range now. Is it possible to have secondaries in 3 places and end up with no evidence of disease At CT scan?
Also is anyone else had capecitabine if so how long did it work for you?
the thing is there was probably something there from the beginning and it got missed by the chemo ,my ALP was raised slightly while having chemo first time round so had ultrasound which showed cysts (harmless) and chemo can alter your liver enzymes too ,so I presume after that liver enzymes were fine even then they were normal just slightly up on what they had been ,this time however they went crazy ALP reached over 2000 at one point they are now 94 which is normal ,sometimes enzymes are normal ,think it depends on where in your liver any nasties are lying ,good luck with your lultrasound x
I have bloating which I put down to ibs, I am also her2 + I also had a year of herceptin, 5 years since diagnosis, I guess herceptin does not always prevent recurrence, best of luck with your treatment x
hi my symptoms were vague ,tiredness main one and looking back probably some discomfort under ribs on right side ,thought it was my thyroid but blood tests at gp showed elevated alp in liver results ,ultrasound showed mets also have cysts .My primary was 2009 FAC chemo rads and herceptin for a year clear nodes mastectomy but vascular .Have had docetaxol which was changed to weekly taxol stopped when side effects proved too much now on herceptin ,liver enzymes all in normal range now x
Hi Gail. Sorry your in hospital, hope they manage to get that fluid of your lungs so you can get back and enjoy your new home. I spoke a little to soon about the chemo its floored me a little this time so having to try and take it easy at the moment. Take care of yourself and hope your home soon. x
Hi Angela good to hear you're coping so well with chemo. Sorry I've been a bit absent lately. We just moved house so I have less stairs to climb. I'm back in hospital again as looks like there is more fluid on my lungs to be drained. Will have ultrasound tomorrow to guide drain. Hope you have a great break. Sounds like a good idea.
Hi everyone. Just thought I would post to see how eveyone was doing. I have my next treatment on Tuesday doxetaxel pertuzumab and herceptin. So far so good apart from last couple of days experiencing tightness and a feeling of bruising around my right lower rib cage. Hoping thats just the drugs doing their job. But apart from that I am feeling well which I am quite surprised about. Thought the chemo would floor me but then I have got 3 more doxetaxels to go so I suppose anything can happen. The onc only wants me to have 6 chemos then it will just be pertuzumab and herceptin. No scan until the end of chemo as the onc says they don't need to and last time my bloods were good and liver function normal so I suppose that gives them some indication how things are going. Hope the weather isn't to hot for everyone. Its better than rain but a bit to hot for me so inthe shade or staying inside for me. Its the start of the school holiday so got to entertain the kids for a while. Going to the Lakes for a week during the summer, not told the onc incase she says no you can't go. Already had a couple of weekends away with no problems and I intend to have a couple more before the end of chemo and don't intend to tell her about those breaks either. Anyway I better go I know I've gone on and on (again). Would be lovely to hear from fellow liver mets girls. Take care
Gail so pleased you are going home, but no packing and furniture moving please! Really hope the chemo and letrozole works.letrozole worked for me for about 18 months before progression to lung mets. I have been on exestemane/everolimus cpmbo for 5 months and last scan showed improvement in mid and lower spine and reduction in liver mets.I have had the dosage lowered because I was having really bad se's so have had a scan on Friday and get results Monday.I am really hoping that it is still working...not sure what next treatment is.I have signed a form for a new trial at RM ( it is for their new research targeting treatment to each indivdual patient ) so not sure if that is the next step depending upon whether I am suitable but chemo has also been mentioned. All will be sorted next Tuesday so scanxiety weekend.
Angela, I always feel better for starting treatment too. Not sure why when so many treatments have failed so far, but I do get that period when I'm convinced the new chemo is the one that's going to work.
Angela, provisional plan for me to go home Monday. Sitting having premeds for chemo so relieved things are finally underway. Think I'll be kept out of the way for the house move until it's all over. Too late for me with chemo brain. Never quite left me from previous chemos.
Hi Gail and Geordeix. Sorry I bet my last post seemed a bit odd to you both. I think its my chemo head ,seemed to have been doing this all day. Gail glad it looks like your going home soon even if you look like your be busy moving to the 1st floor. Good luck with the chemo hope it doesn't make you as absent minded as me.xxx
Angela I signed the consent form and registrar thinks I'll start chemo tomorrow or next day. Looks like I'm getting oxygen when I go home but have health and safety issues around gas cooker to sort out. Moving house from 3rd to 1st floor next month so will soon have less stairs to climb and hope I can build myself up a bit. Sounds like I'd better keep the immodium h
Mrsblue hoping the taxol letrozole combo works out too. Onc seems keen to give it a go.
georgdiex herceptin seems to be a great drug if you're HER2+ and there's also a lot of research into new drugs in this area.
Hi Gail. I've heard of lots of ladies on Heceptin long term. There is a ladiy on my chemo ward been on it for 10 years and she is still well. She was my age when she was dx (43) and she has now seen both her boys of to university. There are ladies on here with similiar stories so I know it can be done. Glad you have your treatment sorted. xxx
Hi Gail, yes definitely a good idea to start a new thread. I had bone mets first (dx 3 weeks after primary) and have had liver mets for 4 years. I'm now on eribulin, my 4th chemo.
Weekly taxol and letrozole could be a very effective combo, I think! Letrozole was my first treatment after dx, few side effects (some joint aches but they settled down after a few months) and it worked for me for almost 3 years.
think the runs seem to be one of the major side effects from what iv'e read on the American site ,have been told today herceptin alone for me now and regular scans and bloods every 3 weeks, due to side effects of taxol and the fact Iv'e had a really good response to the taxol in that respect fingers crossed ,apparently theyv'e had people onherceptin for 11 years would like to be one of them x
Hi Gail. Sounds like your treatment plan is well and truely underway now. Hope this is making you feel better, sounds like your onc is very determined to have their own way.Don't know about your combination but it would be good to know how you get on. Im in my second week after treatment 2, have been doing really well with SE (although even that worries me think I should be having more SE so I know the drugs are doing their job, silly I know) but been running to the toilet alot and can feel perminant headache coming my way, think this might be the start of the inume system hitting its all time low. Let me know how you are doing if you get a chance. Take care. Angela xx
Sorry I do seem to be dragging things away a bit from the original topic a bit. My onc came to see me and agreed that as i'm so symptomatic and letrozole can take longer to work we will go with weekly taxol. Chemo unit is busy for fitting me in but she might be able to get me started as an inpatient. Unusually she's going to combine with letrozole.
Geordiex, I might be going onto weekly taxol soon. I think they base the dose initially on height and weight. Unless you needed a dose reduction due to severe SEs you would only be changed if there a significant change in your weight.
Elliedog I'm in hospital just now. Looks like they'll drain some fluid from left lung. Seems to have been a bit of a debate but my onc has put her foot down. I'm getting another test to see if I can get to take oxygen home with me too.
Hi gail. Sounds like you have been having a very difficult time. I hope they get things under control soon which I am sure they will. Are you in hospital at the moment. Keep fighting and take care of yourself. Message or post me if you need or want to.xx
Hi Elliedog. My liver mets seem to be quite small just now and onc isn't too worried about them. It was just a bit of an additional shock on top of everything else.
I've been dealing with skin mets for over a year but they weren't too much of a problem until they opened up and need regular dressings. I have in the last few months had a pleural effusion on the right lung. In April I had it drained and had a pleurodesis to try to seal it but looks like fluid is building up again and also have fluid on left side too. Have been admitted to hospital due to extreme breathlessness and am currently on liquid oromorph, steroids and oxygen to help me breathe.Ct scan was inconclusive so need a review of this next week.
Sorry not much of this relates to the subject of the thread, but the liver mets were so unexpected when all the focus was in the lungs.
Hi gail5. Glad you have started a new thread. I was dx double whammy with liver mets(albeit small). I have just had my 2nd treatment (docetaxol pertuzumab and herceptin). My onc is very positive and as you probably know the ladies on this site are very helpful. At first I researched liver mets and found very negative information. However I don't think thats the case anymore. There are lots of ladies surviving liver mets out there and plenty of treatments. The ladies on this site managed to reassure me that because my liver spot is small I stand a good chance of getting it under control and I do believe that. I hope you have the chance to speak to your onc as I am sure they will be positive. xx
I have just had the additional news on Friday that I now have a small amount of liver mets.Detail was abit vague as time wastaken up with problems relating to breathing and ct scan being less conclusive here. As I had to trawl back a bit to find much on liver mets in the forums I was hoping to start up a new thread similar to the dedicated bone and lung mets threads.