Hi to everyone, just thought I would drop by and say that after 34 months of xeloda its time for a change, I had scans last week and went back to my oncologist yesterday, he had been discussing with me the gradual change in my markers and now with one of my tumours growing slightly its time to make the decision to change chemo, also, he knew that the hand and foot syndrome really was getting me down, so now I have a washout period of 20 days and go back to see him on January 31st to get my first dose of navelbine another form of chemo that I can take in oral form,the regime is very different to what I have been used to and the side effects are a bit grim however after the last almost three years on xeloda I can cope with anything, it will be fantastic to get rid of the runny nose, weeping eyes and the best part will be getting back the use of my fingers and hands,so onwards and upwards from here,it will seem a bit strange to not have that security blanket of taking chemo for a little while but my partner and I are looking forward to this time together when I will have more energy, I even joked with my oncologist about flying to the UK, he only said one thing, about travel insurance, THAT IF - and only if, I got really ill, that it would cost anything up to $100.000 dollars to be brought back home, he said all of medical treatment would be covered in the UK, but, that a commercial airline would not bring me back, he did not say this in a negative way, he was just giving me the facts, a friend of mine who has terminal pancreatic cancer is going overseas and she is being covered but at a cost of $4.000 thousand!! - so whats a girl to do, I will think about it but not sure if my desire to back to the UK is strong enough for the risk, I dont want to do the sights just see family,I will do some thinking!!! I am at peace with myself in terms of my diagnosis, it will be 6 years in June this year, and I plan on being around for a very long time - so ladies, - I do hope you are all well,and living life to the best of your ability -wendy55

You are an inspiration @wendy55 (even though I'm sure you would rather be someone wandering through life doing things unremarkable)Realistically, how 'really ill' can you get in a couple of days? Yes, I know you are at risk of all sorts of diabolical nasties, but if that stuff hasn't presented so far, and you've given yourself enough time to figure out how you react to the new meds why not go? If you start to feel like shit, cut your loses and come home, lickety-split, don't hang around to see what will happen, just crawl on a plane. But go, please go, unless you are absolutely told not to. Mxx

Hi @wendy55 I just dropped in to wish you well for the new treatment. Im also thinking of going to England in June knowing I wont be covered for my illness but am going to take the bull by the horns and go. Sending a big hug to you xo

Hi there@ Smiley Van Winkle,lovely to hear from you, I am thinking more and more of going as well, there is an insurance company who will cover metastatic cancer, a friend of mine is going overseas this year and is using it, BUT it is $4.000 thousand for her and only $500 for her hubby, it is called TrueCover Insurance you can look them up on the internet for more info, each policy is on a case by case, at the moment with the temp at 46.1 in the shade!!! goodness knows what it is in the sun, no one is game to go and find out, even the dog wont poke her nose out!please let me know of your plans, if I go it will be all the way on a non stop flight and I will be flying into Gatwick rather than Heathrow, who are you looking to fly with and I do hope its business class, its the only way I could go as of my back problem, how was your cruise,I checked the temp where my cousin lives its only 2 degrees!! heaven i say, I have always loved the cold weather, so lovely to hear from you,hugs,wendy55

Seeing family is important so I do hope you can work it out.Good luck with the new treatment!

You're just awesome @wendy55.All the best with the new drugs. Take the trip if you can lovely.xoxoxoxoxoxox

goodbye xeloda hullo to navelbine

Jenni22
Member
2 years ago
Hi Ladies,

I noticed a few comments from those starting abemaciclib, and was wondering if the side effects have improved. I have started on Letrizole and Vereeniging/Abemaciclib and ams struggling with the side effects. I am in the fortunate position in that both these drugs are being given as a preventative measure. I don’t have Mets, but am at very high risk of re-occurrence. Originally diagnosed with bi-lateral early breast cancer, one was triple negative, the larger more aggressive (grade 3) was estrogen positive. Hade 6months chemo, plus radiotherapy and double breast reduction. The abemaciclibb is part of a trial that is showing reduction in recurrence rates of around 6%. I’ve only been on these for 5 weeks, and side effects are manageable, but I am struggling with diarrhoea, fatigue, vertigo and just generally feeling unwell. I was so looking forward to end of my treatment and getting some energy back, but now with two years ahead of me on this regime, I am wondering if it is worth it. Keen to hear if anyone else is in a similar position and how you are managing the pros and cons of the treatment options and quality of life.

Thanks
Jenni
wendy_h67
Member
7 years ago
Hi Wendy, so glad to hear you can enjoy your food again. I only lasted on Xeloda for about 20 months. The treatment I'm on now is called Caelyx and is given I.V. every 28 days. which I thought would be alot better than going to the chemo ward weekly. The side effects kick in about a week after the infusion and last almost until the next lot of treatment is due. Apparently I am on the highest dose and can be reduced. I have had a rash , foot and hand syndrome , mouth ulcers and oral thrush. Its really sending my tumour markers tumbling and a couple of bone mets have got smaller and 2 skull bone mets have disappeared. I'm hoping to be able to stay on this chemo as it seems to be working the best that I have been on for a while. In March I will have been on treatment for 7 years. Some days I wonder if it is worth going through the side effects when I know that it is not going to cure me of cancer . I dont feel depressed, I just wish we could have a bit more quality of life . I have spoken to my oncologist last week about it and she agrees. So if things don't improve with the side effects, she will change the treatment . There always seems to be something else available .,which is fortunate for us as we keep battling on. I have 2 friends who have brain mets after breast cancer and I see them coping so I keep on keeping on. Hope everything goes well for you.
wendy55
Member
7 years ago
Hi @wendy_h67, so very sorry to hear about your hands and feet, I am hoping that mine will recover in time, nearly 3 weeks now and no real improvement,BUT I had tea tonight and for the first time in a very long long time I could actually taste food, it was heaven,pan fried atlantic salmon, our own tomatoes and cucumber and various salads and chips, I never thought food could tast so good, however it wont last long back to the oncologist on Thursday then I start .the new chemo on Friday, such is life with cancer, still I will take a few days of enjoying my food.
It will be interesting to see if a reduction of 20% will help you, I certainly hope it will be of benefit, something I have realized over the last three weeks, the bloody treatment is worse than the disease, but what do you do, just keep chugging along,
is your chemo an infusion and how often do you have to have it?I know this will be my last opportunity to be on tablets and that iv will be my next option, unless we have a miracle cure!!!
wendy55
wendy_h67
Member
7 years ago
Hi Wendy, good luck with your new treatment. I am struggling at the moment with the side effects of the treatment I'm on. The cracked hands and feet are not pleasant and I thought that had all gone after changing from Xeloda. I saw the oncologist last week so she will reduce my treatment by 20% and she has given me aan extra week off treatment to recover.
wendy55
Member
7 years ago
Hi @Lisa1407,
Thanks for the info,I will mention to my oncologist, he has also mentioned to me about a trial that is being conducted of which he is a part of so will see where that goes, in the very early days of xeloda, yes, I did have the same as you crippling bowel spasms and diarrhoea, however I either got used to it or it got it bit better over the 34 months that I was on it, so I am on my last week of no chemo and feels a bit strange, I still feel very physically tired, but the heat could have something to do with that, I will keep you posted on the effects of my new chemo drug, guess it will be at least 2 weeks before I really know how it effects me, cancer, the gift that keeps on giving!!!!, no one can say we are not triers or pioneers, my friends say to me, they dont know how I do it and that they could nt do what I do and say yes, you could, you have no choice and you dont know how much strength you have until you are tested!!

wendy55
Lisa1407
Member
7 years ago
The trial drug I am now on is a kinase inhibitor (CDK4 and 6) just like ribociclib and paclociclib. It is a newer generation of these drugs and has had promising results in metastatic breast cancer trials to date. Unfortunately, it causes diarrhoea in 80% of people, so the trial I am on is a diarrhoea trial (or as I say to my teenage kids a 'poo trial'. This is a small trial where some people take the dose with food and some without food to see if the dosing regime has an impact on whether people get diarrhoea or not. Ribociclib and paclociclip cause neutropenia in a large number of patients, and even though abemaciclib can cause neutropenia it doesn't occur in as many patients as the other two.
I had been on Xeloda for 14 months and was still in remission. However, my oncologist decided that even though Xeloda was still working, my hands and feet could do with a break! So she put me on this 'poo trial'. You get a smart Galaxy phone with a special program to record your daily bowel movements - what a treat!!
So far I have had a bit of diarrhoea (about 2 hours after I started taking the drug), but it hasn't been as bad as when on Xeloda. I don't know whether you had this problem with Xeloda, but I got the most crippling bowel pain before a bout of diarrhoea. With abemaciclib (or Verzenio), I don't seem to get the pain.
Also, although only 5 days in I am not as tired as I was on Xeloda. Let's see if it works though - staging scans scheduled for 5 weeks time! I think hair thinning is a side effect of abemaciclib as well!
Let us know how things go for you too and good luck.

XX
wendy55
Member
7 years ago
Hi @Lisa1407,
I also am having a wash out period which will finish on January 31st, then I start my new treatment, I am interested in the trial drug you are on, could you tell me some more about it please? it is cooler here today but will take a few days for the house to cool down, the up side of the heat is that I have not been able to do anything much except read and watch tv so that on its own has helped my hands and feet, yes it will be nice to have my fingerprints back as well!! pity we could have robbed a bank between us!! I do have the feeling that it is going to take more than a couple of weeks for everything to settle down, not being negative, just given the length of time I have been on the xeloda, anyway time will tell, I am off to have my hair washed and blow waved, my one vice whilst on xeloda as I have not been able to style my hair!!! its very short and I am anticipating I may lose a little more on this new drug.Look forward to hearing how the new drug works for you,

wendy55
Lisa1407
Member
7 years ago
Hi Wendy
Interesting to see how your feet and hands are doing off Xeloda. I have been off Xeloda now for 5 weeks (4 weeks as a wash out for a clinical trial and one week on trial with Abemaciclib) and my hands and feet have been slow to improve. Obviously, the acute inflammation has ceased, but still have dry and peeling skin. I am not sure how long it will take them to get back to normal. I am also wondering if I will get my fingerprints back!

I hope you get through this heat. Bad here in Melbourne today (around 41 degrees) and I just had my electricity turn off for about 40 minutes! My apartment is in a roof space, so heated up quickly and even though the air conditioning is back on it is not that cool. They are suggesting a dramatic cool change at around 3pm.

Cheers
Lisa
xxx
wendy55
Member
7 years ago
Hi there @Rosie_BCNA, well the temperatures here have broken all the records, it was still 43 at 7pm last night, indescribable!! the whole family furry included just did not go outside except for 2 wee stops! and she could not get back in quick enough, she has a very thick coat so was doubly hard for her, cooler today but we had two aircons going all night and have done for the last week,I am now 13 days of no xeloda, was unwell for a few days and of course the heat just exacerbated this, my hands and feet seem a little better, it will be a few weeks still before I get back the dexterity in my hands, we go to see my oncologist next Thursday and he will start me on the new oral navelbine, my McGrath nurse has been in contact and I also had two chats with Pip,the back fill nurse while mine was on her christmas break, I have to take anit nausea medication and then just see how I go, if I can tolerate xeloda for nearly 3 years then I can manage anything!!!.
Thank you for the message and I do hope that the heat does not last too long in Victoria,it really has been a challenging time,
wendy55
Rosie_BCNA
Member
7 years ago
Hi there @wendy55, I've been thinking about you with this extreme heat! I hope you are all coping including the furry family member. Have you noticed an improvement in the hand and feet side effects from xeloda since you stopped this? Take care and stay cool ❄💧🌡🐶🍦