Hi Nicky and George,
I only found out 4 months ago that I have liver mets as well as one on left lung and the bone mets as well. The onc has told me one of mine on the liver is 21 mm but nothing has been said about it. I am just finishing second lot of cape and haven't been too bad.
I started on Docataxel in February but after second lot I had a perforated bowel as diverticular had burst. Not had any chemo since so hope the cape works. I don't want docataxel again as it was bad.
Hope you both get on ok.
Im exactly in the same position as you so maybe we can buddy up?! I have had liver mets for over 3 years now (and bone mets for over 8 years now). My liver mets have responded really well to the treatment I'm on (Herceptin and Perjeta) but one rogue lesion is playing up - the other 4 have now disappeared. The thought was RFA, even though my lesion is slightly outside the parameters, but now we are talking surgery just to make sure everything is removed. My lesion is on its own in the right lobe so surgery is considered to be fairly straight forward (if ever it can be!). I am waiting to hear back from the MDT meeting this morning but I have told my onc I will want to have surgery if it's the best option. Luckily for me our local hospital has an excellent liver surgeon and team and they perform liver surgery on secondary as well as primary liver cancer patients so I feel I would be in very capable hands. Maybe once we know what our individual plans are we can compare notes by PM or on here?
ps Hi to all Cape crusaders - hoping the treatment is being kind to you but killing those m
nasry little uggers off relentlessly!
i had a third of my liver removed due to a pre cancerous condition...the liver does regenerate....but yes, the thought of the op is 'yikes'
however, it is less usual to do hepatectomies for bc secondaries, so if they are suggesting that....they must have confidence that it would be helpful...ask lots of questions! So you can make a well informed choice.
Not sure where your hospital is, or if it has a liver unit? But Kings College Hosp london has a world renowned liver unit...you may want a second opinion?
very best wishes,
Glad you're home, Take it easy, easier said than done I know.
Best of luck with your scan results tomorrow, will be thinking of you.
Hello Abney, glad you are home safe. Hope you feel less exhausted soon - it probably is the cocktail of drugs you are on, but take it easy and rest as much as you can. Hope the new chemo works for you.
Glad to hear things are picking up for you and that you are managing to get a rest. Sure you are being well looked after in hospital. As I said, I was on Taxol for a year and I did find it manageable. At least I had a good week off. No major side effects just slight nausea and occasional dodgy tummy, but that is chemo for you. Keep us posted.
Hi Helen, I too find week off challenging. With me it is the big D, real pain as have to be so careful what I eat. Usually lasts for a couple of days. I felt tired during first few cycles, but not so bad now. As others have said, you can ask for a dose reduction. My onc said lower doses are just as effective and it is something I might ask for as I have been on maximum dose for 5 cycles now. Going to see how I get on with this cycle during week off. Also, seeing liver specialist on Friday as I have mets in liver so waiting to see what he says. The waiting, as we all know, is excruciating. However, signs so far have been good on this chemo and blood results indicating it does seem to be working. Hope you are feeling less fatigued.
Hugs to all
yes, like the others, I had an awful first two cycles on cape..then they reduced it and made it 1 week on 1 week off...and after that I was fine. So sory its knocking you out.....hopefully once your body adjests you will feel much betterxx
Hello Helen, yes, I'm afraid Nicky is right - the week off tends to be the worst - the following week(1st week back on pills) is a bit better, then it starts all over again! I did find the tiredness does get a bit better as you go on, though, although I do sleep better the weeks on the pills!
Good luck, Helen, and hope it works for you.
I was on Cape back in 2013 and it took a few cycles for my body to adjust to them. I really thought of moving onto another (IV) chemo! Which shows how bad it must have been. There was a very old thread on here about the week off being the worst so I expected that however it did get better after a few cycles. I think we have to remember that is still chemo, even though we are administering it ourselves so it's no wonder our body complains. I suffered a few incidents of the big D, as has been described recently on here, but overall tolerated it well. It may be worth asking for a dosage reduction as the oncs tend to put you on the highest dose, for you, first and adjust it down if needed. I stayed on Cape for about 18 months on an 80% dose and it still worked really well so don't feel alarmed if you reduce the does - it is a life balance!
Hope you feel better soon.
Hi Cape friends. Heeeeeelp!
had first two weeks on the tablets - now on my week off - and am feeling utterly fatigued. someone please tell me this will get better!!
Hello Abney, so lovely to hear you are feeling better, and you sound more cheerful in your post, too. Sorry to hear you are having to go through another chemo, though, but I suppose that is the fate of all of us on this section of the Forum now. I hopd it works it's wonders for you.
Hello Anneemay and Bousy, sorry to read you are both feeling grotty at the moment and suffering some of the Cape se's. All I can really say is stick with it and hopefully you will both see some good results from it.
Hugs, and hoping you are both feeling more yourselves shortly. Barton.x
Sorry to hear that you are feeling under the weather as well Bousy, are you taking anything for the nausea? I was given Metoclopromide which I took for the first 3 days when I started treatment and luckily enough I have not had to take it since. Ann xx
I know how you feel. I've just started 2nd cycle and feeling under weather. I had a temperature last week so on antibiotics as well. Feel sickly and not up to doing anything. Runs not really kicked in yet but I have a stoma so I have no control of bowels. Hope you feel better.
Hi all, feeling a little fragile at the moment, now completed 2nd cycle and on week off and se have now kicked in. Have been putting Udderly cream on sore feet and hands twice daily which I think has helped as they are not peeling. The diarrhoea is keeping me more confined to barracks at the moment and my appetite is definitely diminished so as I say feeling a little bit sorry for myself. I just hope that the Cape is working in drying up the fluid around my lungs as that is the plan.
I know I should be more positive but it is difficult sometimes when your physical symptoms grind you down. Ann xx
Hello Moijan, yes, you are right, plasters can get nasty, especially during the day. However, I only apply them at night with the cream, so it can all work its magic while I am sleeping. I always remove the plasters first thing in the morning. Soggy plasters are horrible!
Also, I agree about the Aveeno hand cream - I bought another tube in Boots yesterday in fact, so that I don't run out.
Hello George, yes, I get the peeling and splitting finger tips too. However, it is not the plasters the Registrar objects to - it is the Savlon, which is why she suggested Doublebase. No, I don't have a gel, it is a cream in a tube and the hospital gave it to me - firstly when I was having radiotherapy in 2011, then when I started Cape. I should show your fingers to your Onc or chemo unit and ask them for the Doublebase (I don't think you should have to buy it!).
Thanks, all is well (as can be while on chemo!) with me. Sorry to read you are having problems with your toes. Mine, luckily, are OK, although I have lots of dry skin on my heels - not being good about creaming my feet, I'm afraid!
George, sorry about the fingers....glad Barton is able to help. As I have lymphoedema, I kept getting cellulitis on cape, and I then decided to wear thin laytex glove on that hand when doing something where there may be lots of germs. i think it worked! Now im on Eribulin, my fingers are fine!
sometimes, plasters can pull off bits of skin when you remove them, or they can get wet, both of which can leave you vulnerable to bacteria. But, i suppose like you, I have always put Savlon cream on any abrasions and i have covered up deep cracks with plasters. I think different oncs have their own ideas.
aveeno is another good cream for feet and hands. i now put a lot of e45 on my arm to keep it nourished and I even put it on my face!
but double base is very good indeed,a large tub costs around £11, so try your gp for a prescription
Abney, how is it going?
thanks for the tip. Googled Doublebase-is it the gel you use? Do you get peeling finger tips too? Do you know why you were advised not to use plasters? Big toe also red and swollen- not serious, I know, just seem to be lots of little things at the moment. It is my week off too. Taken an extra day's holiday from Cape as should have started it today, but starting tomorrow.
Hope all well with you
Hello George, thinking of you. Hope things improve with fingers etc. My Oncs Regitrar does not like me using Savlon and plasters on my finger tips, but she said I can use a good moisturiser instead - she suggested Doublebase (the one they always give you in hospital). I tried it the other day, and (although I hate to admit it) it does work better than Savlon. Give it a go overnight.
Hi Barton, thank you...just had a lot of commitments all at once...xx
hi George, Stacey and everyone. I hope life is going well for you all?
what a time youve hadxx so sorry to hear you are still going through it. It feels so very lonely when youare in hospital, doesnt it? I recall being very frightened and extremely fed up!
Now the fluids drained, maybe you will start feeling a bit more comfortable and better equipped to face the chemo. Yes, rads do make us feel tired, and with all this going on around you, do you feel a bit powerless? I think I did. .......was just thinking that maybe the 'head space' programme might help you get a little respite from all the anxiety which comes at times like this. Have you got headphones and a device you can use?
Please remember we are all here for you....sometimes we dont post as much as others, but you are in our thoughtsxxx
Hi Abney, good to hear that you are now breathing better now that they have removed the fluid from your lungs, I know how scarey that can be as I was in a similar situation this time last year. My secondaries are in the lung and pleural space which caused me to have pleural effusions and this caused my breathlessness. Thankfully a year on after having Pleurx catheters inserted to manage the recurrent effusions, I am now able to get on with life. I have found that taking one day at a time and dealing with whatever it brings is much more manageable for me as it helps me to focus on living in the moment and not dwelling on what the future might hold. So keep positive, it sounds like you are receiving good care and treatment and you will get through this, although you are probably finding it difficult to believe at the moment. Hugs Ann
Hello, Moijan - nice to see you back! Hope your new chemo is doing it's stuff for you.
Hugs and best wishes. Barton.x
Hello Abney, so sorry you are having such a rough time at the moment! Hang in there, and get them to explain everything to you! Hope they sort you out soon.
Hugs, and best wishes. Barton.x
Hugs Abney, thinking of you. Your team sound as though they have got things under control, try not to worry. You must be relieved that your breathing is easier now, keep us posted xx