I was dx with liver mets 2weeks ago. I also had a really bad case of ascites and a very traumatic stay in Hosp. Unfortunately the drain popped out before it was completely drained but enough was removed to make me comfortable.
Last week I was in so much pain, distress and discomfort I didn’t give a hoot about the dx. I came to terms with it and washappy to shuffle off. But now, maybe because I’m in a little less discomfort, I’m feeling less calm and much lower. I feel like I’ll never feel well again.
I havent moved my bowels for 2 weeks, so obviously I’m constipated, but I also think it has something o do wih the remaining fluid. I started xeloda, and have had 4 x 1800 doses so far. I know this can give you the trots, so held off the laxatives, but nothing has happened so am taking some. I’m on morphine syrup, patch and paracetamol whichsortsthe pain as long as I keep it up.
Basically, I’m asking, pleading, if anyone can say …'oh yes, i had this but after … I was much better and now I’m functioning like normal, albeit it with. ’
I am naturally upbeat, yet realistic, but this continuous grinding pain is really difficult to ignore as I can’t do anything.
Hi
I am so glad you have posted, I am sure I am not the only one waiting to see how you are. I am so sorry that you are not well but less of the shuffling off scenario…we’re having none of that missus!!! I don’t know anything about what you are experiencing but I do read the secondary cancer threads and I do know lots of ladies are living in your situation…living missus…living. Chin up scaco, chest out…what’s left of it anyway and I’ll send you my old friend laughinthefaceofadversity…aka laughinthefaceof danger…I hope your meds kick in soon and that you’ll then feel better, keep posting and I’m sure I’ll not be the only one looking out for you. M
I hope someone comes along that can give you the reasurances that you are looking for.
Please know that all of us are rooting for you. The woods are alive again and that is all because of you. You started that thread and I know it kept me and the others going though some pretty bad times.
Hopefully you will be able to control the pain with the medication, I know it can take a while sometimes.
As for being constipated - I have never gone as long as 2 weeks, I think I did a full week after my SNB - and had to get a “stool softening” medicine and laxatives just irritate the bowel without doing anything about the impacted feaces (sorry if this is a bit too much) And it still felt like giving birth when I eventually “went”
Sorry you have been through so much recently. Have you been given a plan yet?
Deb xx
PS I’m off to the dark woods now to let the woodies know you have posted and then you’ll have more replies from anyone who is in your situation. As ST says you started the woods thread and it kept me sane on my crappy journey the least we can do now is repay… Carpe diem missus and all that…love and best wishes M
SACO what a rotten time you have been having. I have known many people with liver mets that have done really well on Xeloda. I so hope somebody who has personal experience of the drug answers your post soon. You have helped so many of us with your wit and wisdom. We owe our sanity whilst having treatment to you. Thank you so much. As Supertrouper says we are all rooting for you…hold on in there.
The constipation is no doubt being caused by the morphine. It puts the muscles of the colon out of it’s normal action sometimes! In most cases it should not be given without a softening lacative. Is anybody monitoring your symptom control? A small enema might be needed. if you continue to have pain tell your medical team.
Like Applestreet and Supertrouper I will be looking out for your postings.
Cackles xxx
SCACO, I feel like I’m stalking you! I just really want you to know that when I had my lungs drained, I thought I was a goner. I really did. I was constipated for a long time, I’m pretty sure it was a good couple of weeks. When I got home, I was demented from the steroids, in pain from the drainage, sick from the chemo and constipated. I told my husband that I thought I was dying and I thought I had weeks left. It’s very low tech but I found a hot water bottle on my tummy helped to get things moving. That was the beginning of June. I’ve moved to a much better place now, and you will too. You will x
Hi, I have just finished 8 cycles of Xeloda (stopped as just had a hip replacement) and I have been on morphine for 13 years…yes years. This is how long I have had bone mets for. I suggest you ask your Gp for MOVICOL which comes in a sachet, you add it to a sall galss of water and drink it. You can have more than one sachet in a day, and it doesn’t cause instant rushes to the loo as it works very gently. But as you have not “been” for a while I think it is about time you spoke to someone about it as it can make you feel ill, uncomfortable and if dealt with I am sure you will feel a lot better.
Have you been on to the pages for peope with secondaries. There are some that are for liver mets and other sorts of mets. I go on to the bone mets ones but also “lurk” in the other ones and often put my pennyworth in AND I have made freinds on these other threads. I am sure you know how to naviagte but in case you don’t, go to left had list column and click on the SECOND line that reads “Living with Secondary Breast Cancer”. There are too many sub sections but I am sure you will get suppport from them. If you want to PM me anytime I am here for you Staycalmandcarryon. Been through the mill myself so I habe an idea of what you are going through.
I have seen lots of your posts on the site but did not realise you were having a hard time of it. Hugs, Val
Hello SCACO, I’m sorry you’re having a hard time, I can’t begin to know what you’re going through, but I just wanted to say that I have followed the DDW thread although not posted. I just wanted to wish you all the very best, and send you gentle hugs. You have been so supportive of others - I am sure that lots of support will be coming your way. I really hope you feel a bit better soon… xxxx
Hi SCACO I’m so sorry to read your news. I cannot answer your questions as they are outside my experience, but just wanted to let you know you are in my thoughts and prayers. Really hope you feel better soon. Gentle hugs.
Hi stay calm. I lurked around the woods for a bit too when first going through all this - I have just been DX with secondaries though in nodes, lungs ans poss bones but waiting for results of bone scan. It is devastating getting this diagnosis & when you then have to deal with nasty symptoms on top it really can feel like that’s it! BUT a agree with the others - It isn’t and once you get your symptoms under control you will feel so much better - constipation alone without all this other stuff going on makes you feel absolutely rotten so get a dose of laxitive plus some softener to ease the passage! Keep up with the pain Meds as is it much easier to control pain when it relief is given consistently an ongoing rather than thinking Oh i’m not in pain any more i don’t need it! as if you let it get too bad again it is much harder to then treat to a good level whereas ongoing pain relief stops the brain reacting. I was resistant to having low dose morphone to control my cough but it has really helped & actually doesn’t space me out at all which is what I was concerned about.
I hope you start to feel much better soon and am so sorry we are now on another journey like this - BUT I have already spoken to some amazing people on my chemo suite who have given me much hope for a future beyone DX nad read wonderful stories on here of amzing people coping with such a difficult time - I honestly can now see the light even though it has only been 3 weeks since DX - I have cried so much & been in utter despair BUT am entering a place of acceptance - There will be more low days but I just think you have to endure & get through them & hold on to the feeling that they are temporary and pass til you can start really living again. Much love Jo
SCACO - just caught up with all that’s happening to you. Grim! I cannot pretend to know where you are in your head… or your emotions… never mind your body, and, not being a medical person, I have no “facts” to offer - except to say that Jo is right - my friends in the Pain Team say that it’s much better to keep up the pain meds and keep the pain under control, than try and get it BACK under control when it’s gone spiralling… and to ask if you are getting support from your Breast Care Nurse or MacMillan nurses? Ours are fantastic…
Like the others - the DDWoods were my point of sanity last year, and I can’t thank you enough for them (oh wait, wasn’t it INsanitiy!!!) The humour and courage, your humour and courage, were what kept me going some days. I hope there’s something that can do the same for you…
We, your Woodland Friends, are holdin out our hands for yours… sending (very gentle) hugs and our love (and prayers/thoughts)…
Hi
Just popped in to see if you had any replies SCACO…I can see that you have, I hope you are feeling OK… well better anyway… keep your chin up missus…love and very gentle cyber hugs. M
Hi SCACO
Just wanted to add my thanks for the DDW thread. I mostly lurked but it was an enormous help when I was “going through chemo” couldn’t have done it without all the fun and games!
I’m sorry you’re having such a rotten time at the moment, I hope once the pain and constipation are under control and your treatment pathway becomes clearer you start to feel more like your old self.
Love and hugs D. xxx
PS I really really empathised with you on the “hair rant” thread you said it just how I feel too!
Sending hugs SCACO, the Woodies are here, virtually and in real life. If there’s anything we can do just holler.
I would imagine the new regime and its SEs will take a while to settle down but hopefully poisoning the nasties will ease some symptoms and they will find remedies for the SEs. I’d guess you are probably still in shock with the latest bomb going off in your life. Hang on in xxxx
Hi SCACO
Sorry that I haven’t seen this thread before, I only came across it from alink in the triple neg thread
I have liver mets, I felt really unwell when they were first diagnosed! To the point that even though I didn’t know what was wrong with me I felt like I just wanted to lay down and die because everything seemed so hard. That was over three years ago and although it has been a bit up and down I am still here and keen to continue treatment in the hope that I can hang around for as long as possible.
I haven’t, as yet, had big issues with fluid build up. But I do know of a number of women who have (liver mets seems to be the one that most often causes ascites). Some women have had the fuid drained and it hasn’t come back so that has been the end of it. For others the fluid has returned and they have had to go back to hospital to have it drained again. I know there are women who have had a more permanent drain fitted which they can empty themselves at home.
I am sure one of them will come on here soon and offer you more advice.
I ended up in A&E about a year ago because the pain was so bad. They started me on oral morphine but more importantly that was when I found out that the Macmillan nurses are very good at sorting out pain relief (and the constipation issues that always seem to go along with it). I see my Macmillan nurse monthly, she is lovely and very helpful. I wish that I had know about the service sooner. The main thing is you have to ASK your GP to get reffered. It doesn’t just happen automatically.
The movicol that the other ladies have mentioned is the main option that is offerred for constipation. If you haven’t been for 2 weeks (and that’s a very long time!) you will probably need to have about 6 sachets in lots of glasses of water to get things moving. You will then need to use the powder regularly, even if everything seems ok. You have to stay ahead of it otherwise it gets really bad again.
I am currently using fentanyl patches +oromorph for pain. I try to avoid paracetamol and neurofen because my liver function is pretty bad at the moment, but that just me, not the doctors advice or anything. Anyway because the morphine and the fentanyl both tend to cause contstipation I am currently using 2 movicol sachets a day + taking 1 dulcolax (sp?) + sipping senna and fennel tea in the evenings (not to much of that as it can cause stomach cramps) the combination of all those works for me but it has been a bit of trial and error. The nice thing is I can tell my Macmillan nurse what I am trying and she will say ‘no I wouldn’t advise that’ or ’ sounds fine, see if it works’
once things get back to normal for you increasing your omega oil intake and sipping warm water with lemon in the morning can also help you be more regular & they might help with the liver function too, although there’s not really any scientific evidence for that (+ there’s always the good old fashioned remedies like prunes, syrup of figs etc which have been around for hundreds of years because they really do work)
The main thing I wanted to say is that, although I can’t give you any guarantees, it is very possible to live for a long time with liver mets, lots of women do. When I was first diagnosed I didn’t think I was going to last 6 months but now here I am over 3 (in fact almost three and a half) years later
Tillycatxx
Scaco, I do hope you are feeling some relief and it looks like you are getting some helpful advice and support here. We are all here for you as much as we can be, as MG says, virtually and in real life. You are in my thoughts and prayers every day.
Wandyxx
SCACO, as everyone else has said, there are lot of people thinking of you, including me. I hope you can get a treatment that knocks the little b****rs for six.