Hi Aneemay Sorry to hear you are feeling so bad. Hope your onc comes up with something to help today
Thanks, George, for good wishes. I'm on 3600mg per day (2x1800mg). I was originally on 4000mg per day. Have only had the one reduction. Please do ask, if you are finding your dose too much. In fact, if you show them your hands, they will probably suggest it!
Sorry to hear you are having such a rough time. I can sympathise as I find Cape very hard on the stomach, it is the big D with me which usually kicks in on day 10. I am sure your oncologist will be able to alleviate your symptoms; they are always telling us not to suffer with side effects, but to let them know. I am going to ask my oncologist for a dose reduction over Christamas as I really want to enjoy the festive period, cancer allowing.
Hope all goes well tomorrow and you can start eating normally again. I know weight loss is a worry, but you soon put it on again. I couldn't eat for a while and lost half a stone, but it is back on now.
All the best
i met someone on a Penny Bhrohn course who was on Kadcyla and she was coping really well with the side effects and had just returned from a week's skiing holiday. She said the treatment targeted the cancer cells and didn't do as much damage to healthy cells as usual chemo. ( her words). I know we are all different, and respond to chemo in different ways, but thought I would share this with you.
Good luck with the new treatment plan
godd luck for your scan results tomorrow. Know how you are feeling as I was in the same position next week. Also, know what you mean about sore hands and feet. My hands are bright red and really sore. Will ask for a dose reduction when see onc. How many milligrams are you on a day?
Once again, good luck for tomorow
Yes, it is Kadcyla I will be starting. Will be checking out that thread as well as speaking to a couple of SBC ladies who I know who are already on it. Hoping my SEs will be as minimal as one of them and not as bad as I have read for some!
Good luck with your results tomorrow, hope all goes well.
Hello George, Cape is treating me ok at the moment, except for very sore fingers! Have had real trouble handling my pen at work today and yesterday, and the computer inputting I have to do! Oh well. Last day ofbmyvweek off today,vand Onc appointment tomorrow. Should get the results of the CT scan I had 3 wks ago, so Scanxiety setting in!
Hope you manage ok for the next few days, and have plenty of Loperamide handy!
Hello Nicky, so sorry to read of your progression! And needing to alter all your recent expectations-such a shame! I hope everything works out all right, and Kadcyla (?) works for you.
Oh, Anneemay, so sorry to read this! Have you been taking any anti-sickness pills? I expect you have - probably your first thought! Hope you get answers and help tomorrow. Let us know how you get on.
feeling very fragile at the moment started my 3rd cycle last Thursday and it has been downhill since, I felt so bad Sunday morning I contacted the out of hours oncology nurse, she advised me to stop taking them and contact her Tuesday if I still was not any better, which I did. I have got an appointment tomorrow to see my oncologist for review. I have not eaten anything since Sunday morning when I took my last dose, I don't feel particularly hungry and when I try to eat start retching, even my supplements drink made me vomit. I have a cows milk intolerance and always have had a very sensitive stomach which doesn't help. My brain says you have got to try to eat something as I am losing weight but my stomach says Whoa ... you will only be sick again. Caught between a rock and a hard place springs to mind!!!!
Any advice gratefully received. Ann xx
Thanks for your message and offer to PM. Will definitely take you up this. Seeing consultant again on Friday so will probably have lots of questions after that- if things haven't changed, that is.
Hope your treatment is treating you kindly (if that is possible while on chemo)
Thanks for your good wishes. On cycle 6 of Cape now. Two more days before my week off and dodgy tummy starts. Have planned a very relaxing day for Saturday. :-) How is Cape treating you?
Sorry to to hear your news, but good to hear that you have a plan A. It sounds as if smaller lesions are harder to treat then larger ones, that was certainly the impression I got from the consultant on Friday-ironic really. I am expecting things to change for me too following MDT meeting on Thursday. Certainly, treatment seems to have worked really well for you so far. Good luck with the new treatment and do keep us posted.
Anything I can do to help. My surgery was to my left lobe, I think they said they took half of that. This was before my mets...they had noticed calcifield lumps within the biliary drainage within the lobe. Kings College Liver Unit did an MRI and were uncertain as to wether there was cancer, but said that as it was clearly diseased it should be removed. So I had it removed - it wasnt cancer at that time. My tiny mets came later and they are disseminated all over my liver, but most of them are too small to see . Pm me and I can chat more about it if you wantxx
Umfortunately its all change again for me - in between posting my info about having surgery and my onc phoning me late this afternoon to say that the MRI had in fact shown a few other lesions ☹️. These obviously hadn't shown up in my recent CT as they were too small, or in fact have developed since the CT. Not what I had hoped to hear at all but it means I am now back to Plan A which is to start Kadcyla.
In answer to your questions my receptor status has changed from HER- to HER+ (which is when my liver mets were diagnosed) I had been HER- for 10 years! I wasn't able to start Herceptin at that time as my heart had been damaged by previous chemo but I started on Capecitabine. This worked for 18 months by which time my heart had been sorted out by my lovely cardiologist and I was able to start the docetaxel, Herceptin and pertuzamab combo. This was back in 2014. So, I am an unusual case and surgery wasn't an option before as I had about 4-5 lesions small lesions which is too hig a number for surgery or RFA. It was only in October when my CT results came back to show only 1 lesion remained and it had grown that surgery or RFA was mentioned.
Hope this helps and good luck with your own appointments and treatment.
Hello Bousy, glad you are doing OK on Cape! Well done. I, too, found Docetaxol the hardest of my IV chemos (FEC-T in 2011). I didn't have any nasty reactions like you, but the bone pain was dreadful at night. Nails hurt, everything seemed to hurt! I was hoping that mwant it was doing it's job, but obviously not as I'm here in the Secondaries section of the Forum!
Hello George and Nicky, it sounds really positive that they think you both would benefit from an operation to remove parts of your livers! I'm sure they wouldn't suggest it unless they thought it would be of real help. Good luck to both of you, if they, and yoy, decide to go ahead.
George hope you are doing OK on latest cycle of Cape.
Nicky - glad your double chemos are proving very effective (apart from the one rogue met- how dare it?!) for you. And thanks for wishing us all luck on Cape.
Hugs to all. Barton.x
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.