02-08-2017 06:42 PM
Blimey Nicky it is a good job you are so knowledgeable about your cancer and the hormone HER side of things, I think I would be completely in the dark. I'm pleased that you had a good lengthy appointment that answered your questions, and hope from that you feel a bit more reassured. How many cycles have you had so far of this current chemo? I still have peripheal neuropathy which now combines diabetes side effects as that is one of the problems, From reading your details as I had Herceptin I assume I was quite highly HER +. I don't think my notes ever showed how +. Your blood test sounded easy this time thank goodness.
I only have one more month of Tamoxifen, my Oncologist was happy for me to stop because I had no lymph nodes affected. I suppose I will feel that my defences are gone when I stop but in another way I am looking forward to seeing if my body becomes normal again, by that I mean hair regrowth, nails improving and most of all less knee pain and perhaps a drop in weight. We will see.
Today has been 35 degrees so I've been in the pool a couple of times to cool off, I like swimming although these days it's a very slow swim. From 6 am this morning until I got up at 8 I had continual leg cramps so was in and out of bed several times, in the end I just got up. I've drunk 5 pints of water today to keep hydrated and think tonight I must take a crampex (a very out of date one!). It's so annoying and painful and as my blood results were good last week I can't think that there is anything causing it. It is apparently a common thing with thyroid disease and diabetics!
Good luck with your chemo tomorrow Nicky and I hope you don't suffer too badly from the dose. Lisa like Nicky hope all is ok?
Love Carole x
02-08-2017 08:48 AM
Wow Carole, that was a LOT of driving! Although I'm sure it was a fab holiday I expect you both need one afterwards as well. Great to do an Italian trip, it is such a lovely country and you would have seen plenty of it. It will be nice to have YD at home to keep you company now Mr P is back at work and theres always the downer afte having such a long break together. Hope the weather is good enough for you to enjoy your pool but nit have to do too much watering of the garden. We're now on typical school holiuday weather - literally changed here the day they broke up last week - wet and not sunny at all.
Lisa, how are you doing? You've been a but quiet over the last week, hoping iut's just work and play and nothing else.
Lily will be sunning herself I expect and walking around the bottomless lake!
I had my appointment at The Marsden and we all seem to be on the same page. I had a long consultation and felt all my questionswere answered. It is likely that I will go up to 8 cycles of Eribulin but stop then to make sure any side effects don't get too bad. Things like peripheral neuropathy can get worse, especially if you've already had other chemo's that have it as a side effect. Then move on to either a hormone on it's own ir in a trial situation where other treatment is added in (and not available through NICE), CT at the end of the 8 cycles to get a baseline and see what's going on. I obviously asked about the whole HER2 question and had a good explanation. Basically even though one part of the sample showed as being positive it was only very weakly positive, similar if you had a score of 1 out of 8 for being hormone positive. Therefore some of the cells are definitely below the positive score some are slightly above it, but only just which is why none of the herceptin based treatments have worked for me. The only time they have appeared to work is when I had chemo alongside or a hormone treatment alongside which of course worked. Btw everyone has HER2 receptors on their BC cells its whether there is an over expression of them that denotes if you are HER2 + or -. Hope this explains things and I was comfortable with thus explanation. In fact the result that came back as a positive is only 0.09 above the original reading for being HER2 positive and it's only recently that they have moved that downwards. If I'd had a score of say 6 above (on this type of test) they would have definitely retested as that would have been an anomaly.
Well, back on the treatment cycle again this week. Bloods a bit low from yesterday so, lucky me, I had to go back again this morning, yay, two mornings in a row having a blood test. Thank goodness the lovely girls in the blood department at our hospital are so good so this morningwhen she said 'sharp scratch' I didnt feel a thing!
Have good week, hope it's not too soggy where you are.
30-07-2017 06:37 PM
Lily I looked up the bottomless lake, lots of history and legends there by the look of it, so enjoy! No doubt you are there by now so won't see this but anyway, have a great time and RELAX.
Nicky how did your appointment go? I hope that you returned with some useful information that is positive for any treatment you may need in the future. Your weather sounds a bit depressing, mind you here, when the sun is out it is hot, but we keep having very cloudy mornings and then hotter later in the day. For the last 2 nights we've had terrific Dordogne thunderstorms, so not much sleep for the last couple of nights (coupled with my usual sleeping not too good).
Lisa, any news about your blood test? When is your next trip away?
As promised my holiday : we travelled with our new car but old caravan the first day for 11 hours, by which time I had had enough and wanted/needed to stop. Obviously we had toilet breaks etc. but it was getting on for 7 pm and we both needed to stop. Typical for us we couldn't find a campsite so ended up staying in motorway services, still in France amongst all the lorries! We were so tired that we actually managed to sleep well, despite a terrific thunderstorm and heavy rain pounding on the roof.
Day 2 we travelled to the Little St Bernard Pass, it was a bit scary but I found it very scenic driving through the clouds and the scenery was amazing. We arrived in Aosta and decided to stop over for 1 night. Day 3 we journeyed to Lake Garda. On our second day here we went into Venice, it was extremely hot but still amazing so lots of photographs. We didn't go on a gondola as a bit expensive.
The next stop was near Rimini, just a couple of days here at Cesenatico as this is where Mr P used to holiday every year with his parents and grandparents. We visited San Marino which of course is a country in it's own right, and tax free so we bought some souvenirs here. The views were beautiful.
Then we travelled onto a campsite in Rome and stayed here for 3 days. The Italian transport system went on strike the first day we had planned to visit Rome, so we had a chance to just relax. Then the following day we caught a train into the centre, it was unbearably hot so we bought Roma passes which meant we could hop on and off buses, some were air conditioned thankfully. We saw all the sights from the bus but got off at the Trevi Fountains (before they were turned off lol) then after lunch back on the bus to the Vatican City. The queues were 2 hours long, so unfortunately we didn't see inside, nor did we see the Sistene Chapel. We did see and take photos of the Spanish steps, Colosseum and various other famous statues and churches. We had our photograph taken with "Gladiators" at the Vatican which was quite amusing.
After Rome we then travelled to the Pompeii campsite. Walking around Pompeii was an incredible experience and I feel so humble that those poor people were caught in the Vesuvious eruption. We caught the train into Sorrento and had a day here. We found Sorrento very expensive.
So then we started our journey back, we left Pompeii on Wednesday morning and arrived home Friday lunch time.
During our stay at Pompeii we saw the Vesuvious forest fires, and then heard they were evacuating people from homes on Vesuvious. It also affected Sicily and Capri. On our journey home passing through Naples it was just full of smoke. We also got caught in some fires in Nice on our way home, which created a huge traffic jam.
Nicky the driving in Italy was definitely the worst I've ever seen. Even Oman is better and that is saying something. The French drive quite considerately compared to Italy.
So to sum up our holiday, all the travelling was very tiring, it was too hot but, we would love to see those sights again perhaps in December or January/February before it gets too busy and too hot. We would definitely NEVER drive again, or take a caravan as its just too far.
I'm still suffering from tiredness, I don't know why because I had a blood test last week and everything is ok, nothing like anaemia showed up.
Mr P is back at work for a month now but at least YD is here, albeit working very hard to save up for her next Uni year. Tomorrow I'm going to see Dunkirk (French subtitles but in English), has anyone seen it yet?
So that's all my news, I hope you are all ok and keeping as well as you can. Nicky and Lisa let me know about your appointments.
Love to all, Carole xx
27-07-2017 11:12 PM
Hi all. Just a quick post to hope that you gain a lot of information tomorrow Nicky to help you to see a clearer path ahead. I think I would be forward planning too. I know some may choose a different approach whereby you make decisions when you get to the next crossroad but I would be like you, planning all possible routes from the next junction, whenever that might be. Any way good luck and I look forward to hearing all about it. I may get online beforee i get back but you never really know until you get there! Check out 'the bottomless lake in Crete', we are staying very close by, so this is going to be my evening walk until I get back. Take care. Love Lily xx
27-07-2017 09:24 AM
Well, as one holiday ends another begins!
Carole do tell us about your travels and adventures when you have time. By adventures I mean the Italian roads ha ha. In the past we have found French road signs to be really good but, boy, do the Italians need to learn! Suddenly you find the place you were trying to get to disappears completely from any road sign you see - as happened to us going from Lake Como to Lake Maggiore. A journey that should have taken about an hour took ages and involved going round lots of roundabouts many times! It is always a downer when you get home so take time to pick yourself up. Hopefully the cramps in your legs are not keeping you awake too much, if not maybe you need to see your doctor if it's something you don't normally get? ED suffers badly from restless legs so I understand how lack of sleep can add to the general feeling of not feeling great.
Lily, enjoy your holiday. I think the island you are talking about is featured in the book by Victoria Hislop called (you guessed it) The Island. Worth a read as its a very good holiday book especially if you are visiting it. This year I read Ernest Hemingways A Farewell to Arms (not my normal holiday reading!) as the characters met in the bar of the hotel we were staying at on Lake Maggiore, it was set in the First World War but places hadn't changed so much.
Lisa, hope all is well with you? Any big plans coming up for the weekends? Any news on the blood results?
I have my appointment tomorrow so hope to come away with some answers and a plan of what to do as and when it's needed. As always I have what I expect to hear in my head, which covers all scenarios, but then the oncologist chucks in a curved ball which then throws me! We will see. Other than that a quiet week which I have enjoyed just pootling around with no hospital appointments hooray. The last few times I've had this extra week during chemo we have gone away which has been lovely of course but meant I have not had a week just doing odds and sods for quite a while. Rubbish weather though! It would have been nice to have had a sunny week but as our schools broke up on Wednesday it means there will be no nice weather until September ha ha.
Happy holidays Lily and have a good weekend everyone else.
26-07-2017 10:04 PM
Hi everyone. Carole I hope you can rally yourself, its probably a big drop to normality after having trips and a lot of company and getting used to a quiet house again. Thinking of you. Lisa any news on the job front? Have things settled a little or do yuo have a lot of extra things to do?
Nicky I don't think you mentioned which day your appointment is, so hope you gain/ed a lot from it if I don't hear from you before I go. Started packing and had to go out to buy bigger shorts!! Not a good sign as I surely can't blame the tumble dryer for all of them> hmmm maybe I can. Anyway it was nice to have a few new outfits. I only have to pack as everyone else is staying home, so not too much to plan and the dog can stay home. I am very excited about seeing the palace of knossos so hopefully we will get there. I also love the look of Spinalonga island which is picturesque and very near, it was a leper colony in the past apparently. Probably why they didn't get a chance to over build there. We are staying very close to the bottomless lake, which is in a very pretty area too and as we are right on the sea front I am hoping for some nice evening walks around the harbour. May be back on here but if not speak soon love Lily xx
25-07-2017 03:50 PM
So sorry I haven't been on, since my return as welll as being very busy with this and that I have also been extremely tired, not sleeping well and having cramp every night is not helping.
Anyway I just wanted to say to Lily Happy Holibobs, you'll be fine in Crete I'm sure but yes can imagine your worries. Nicky I see that you are seeing a private specialist and hope that you get some answers to your questions. Lisa how are you and how is work going?
I haven't had much of a read back on posts, but promise to do a proper catch up at the weekend.
Love to all Carole xxx
25-07-2017 12:07 AM
Hi Nick, I think it is a brilliant idea to follow what has been suggested. I can't imagine how frustrating and agonising the decisions are when you get conflicting views, when it is your future they are talking about and not just something mundane! Even though it is their evey day job so you can't help but feel that you are another one in the very deserving line. I'm very glad you are able to do this. Will you take someone with you to take notes or maybe they would let you record it on your mobile, so you can refer back to it? I think I would want to know if I was on the very best option or just one of the possible treatments. What would be the natural next route to take when/if you need something else. What brilliant new drug is out there waiting in the wings that you should try to get as soon as trials start. Should they leave your current cancers or try alternative treatments like rads or surgery, especially the breast lump.I would also wonder what treatment you would be having at this point or previously if you checked in a hospital in America or Paris. How many years ahead of us are they? Anyway just a few ideas you might consider although I am sure you are on the case already and having been reading up everything you can find. It is always this possibility of 2 different dx that leads to most questions. If you did have 2 different types of bc, then would focusing treatment on one to tackle HER regimes allow any more ordinary oestrogen positive ones to grow. Anyway I hoped to ask a few questions that might develop/articulate your own ideas to make the very most of this important review. Good luck and come back and tell me EVERYTHING. love Lily xx
24-07-2017 09:26 AM
Hi Lily. Enjoy the lie ins and also your holiday. We will hear all about it when you are back I'm sure. In answer to your (many!!) questions I am paying for a private consultation at the suggestion of my cardio oncologist! As he pointed out its all well and good going for a second opinion on the NHS for free but you only really get 10 mins or so in a rushed environment and not necessarily seeing the head of the team ie the real expert, even though I know they will have discussed your case. So, it is the same hospital I'm going back to, that I went earlier in the year, but will make full use of my (paid for) time, well, that's the aim anyway. I have my full list of questions and hope I get some full answers about what is possible, or best, for my situation either now or in the future when things start progressing again as they surely will do. I would obviously rather not pay but when you see a more junior member of the team who gives opposing guidance to previous members of the team it does confuse and worry you! So, let's hear it from the horses mouth so to speak. At least the appt is this week, in my week off, and I hope to have some info that I can go back to my current onc with about what the treatment plan is. Btw he is very supportive of this and happy to discuss what is said or suggested.
Anyway, by for now,
24-07-2017 12:06 AM
Hi everyone, I am abit puzzled as I replied the other night but it hasn't appeared so forgive me if I appear to forget something, I probably think I have already responded! I think this regime has had a positive run so hoping you can have some good time on it, although your comment makes me wonder whether you would like to try something more maintenance like one of the tablets? What normally comes after this regime if things have gone well or do they just run another cycle. My local friend is on around 150 doses of capecitabine now. She is one of 3 locally who are changing what the docs know about chemo. Its incredible and so is she. Is your private consultation with the Marsden or somewhere else? I wasn't quite sure why you have to go privately and can't just have a 2nd opinion? When will you see someone? Anyway i hope they can give you the information you need to understand more and plan future steps. Keep me posted so we can discuss it. How did the hospital check over the temperatures go? Are they changing the GCSF dose? Disappointing that it cut down your baby shopping time. How many weeks is she now? Getting closer now, very exciting for you. Also extremely alarming to be mum of the one giving birth I should warn you, made me terribly anxious each time. Yes I had pre eclampsia too but none of the girls followed my footsteps so hopefully yours will stay well too. Maybe modern diets have improved it? I have to say that would be my dream, to have someone in the family as a pastry chef, yum. Enjoy your free week coming up.
Carole how are you? I can imagine you over-run with home grown goodies by now and wondering what to do with them all. Maybe lots of soup frozen for the winter?
Lisa I was sorry to hear about your blood test concerns. keep us posted how you get on. It was nothing that needed treatment before, so hopefully this will not be an issue too. They do have to call you every time you go outside of the norms but often it is not by too much. Good luck and keep us posted.
Well I am on the countdown to my holiday in Crete. i was a bit shocked to hear about the earthquake and had a worrying moment as i didn't hear which island first time. Terrible for Kos though. Victor has been working like a lunatic, even getting up at 5 am on weekends so he needs a break. The joys of your own business. I have had a busy weekend but intend to switch the alarm off from tonight hooray. I went to watch the Race for Life today as my 2 eldest took part. I managed not to cry but it was very difficult with 'running for mum' on their back cards. Then seeing them hand in hand run through the line. They were very quick and back in 34 minutes despite no training. certainly don't take after me or Victor ha ha. The little ones were screaming and waving flowers for them which was also so sweet I could have howled! Mum has been so very difficult recently that a week off will do me the world of good. If I don't reply you know I didn''t get back on the plane and stayed forever on holiday . Love to all. Lily xx
21-07-2017 11:54 PM
Thanks Nicky, you are my inspiration xx ha maybe there will be no abnormalities they are just doing it because I'm on blood pressure mess they are doing everyone Mam is booked in next week too lol.
i bet lily is sitting with her feet up surrounds by lots of treats from kids lol 🤗🤗😍😍😍
21-07-2017 07:48 AM
I know what it's like, for me it is also like getting blood from a stone! Despite having to have regular blood tests is doesn't get any easier, I just get more grumpy if they mess it up! Also what a waste of time and money, your, the nurses' sand the flipping laboratory no wonder the NHS has problems. Anyway I hope they get the next sample easily and these 'abnormal' elements are nothing really unusual, maybe just a change in diet etc is needed? Holding your hand.
20-07-2017 11:50 PM
Hi Nicky thanks for the update. I admire you determination with all your appointments and consultants to look at future options and sorry you ended up being checked out in hospital grhhh. How exciting with your daughter whilst nervous at the same time xx
lily, you must be in a good mood, roll on tomorrow tears frantic and lots of smiles xxx
carole, you recovered yet?
bloods drama continues, don't even get me started.... you know I hate it and have one vien that works, well she hit the jackpot then finished about to leave and realised she needed more so had to go back in for round 2. She filled out the forms that I was given 12 days ago and off they went, phoned for results and told abnormal and to see doc but don't worry but wouldn't say why, went into a meeting and gets a call from docs to go back for more bloods, someone different, I said just been told abnormal she said yes but don't need to see the doctor they are abnormal as couldn't be tested as over 10 days old, I said it's Wednesday they were done on Monday later afternoon, it appears that the nurse didn't update the date so it had 12 days ago date on so lab destroyed and didn't test 😪😢😪😢 back for another set next Wednesday lol.
night all xxx
19-07-2017 11:13 AM
Glad you had a good time Carole and let us know what you did once you've recovered from your epic road trip! I think the weather was very hit so I expect that affected your excursions a bit but hopefully not too much.
Lisa, try not to worry - simple to say but not easy to do - I should know! You may have a few of the results a bit raised due to enjoying life but so what, just make a few changes and I'm sure you'll be OK.
Lily, bet you can't wait to throw that alarm clock away for a few weeks! Bliss. Some of my appointments are a bit early in the morning and I hate having to wake up to an alarm clock telling me to get out of bed.
So, onto your questions! I am currently on this regime for at least a few more cycles, possibly much longer if it stays being effective but that's a discussion I need to have. I am also pursuing a private consultation regarding HER2 status and what that means as well as whether surgery or ablation are options, or even if a different trial might be available. It's more to find out what to do or have next as well as still hoping this is effective for longer. However although it's good to have something working well when it's chemo it still has its drawbacks.
Other than that doing OK except getting a few high temperature readings and feeling a bit feverish with the GCSF injections (a known side effect), so into hospital on Friday morning to be checked out - something I don't need in between 'normal' appointments. Will see if I can change that regime slightly to make it easier on me as the injections are certainly keeping bloods levels up.
So, instead of going shopping for hospital bits with ED on Friday she ended up coming into hospital with me and keeping me company as I waited for bloods to be taken and results. We did manage to go into our local town in the afternoon and to be honest we only needed to go into Primarni, Wilko and Boots to get the things she needs so we managed to get things done so she feels a bit better and more prepared. She is well aware that I was already in hospital with pre eclampsia with her by this stage of my pregnancy so she wants to be ready! I also had her, by emergency Caesarian, by this coming weekend so she's under no illusions that childbirth goes to plan. She is suffering a bit with excessive itching on her hands and feet which is not a good sign as it can mean there are certain liver functions not working right so they are keeping an eye on her and doing regular blood tests. So far so good but best to be on the safe side.
YD has now completed her first week in the restaurant and enjoying it - so far, despite the incredibly long hours which she was very aware of. Luckily the head chef isn't a shouty person having learnt that he kept losing staff when he did used to shout! She is working in the pastry section doing desserts and petit fours - right up your street Lily. And they seem quite progressive and asking her for ideas for new flavours for macarons, pre desserts etc so she's being involved rather than just carrying out their recipes with no input. It's also quite high end stuff so she should learn a lot and should move to a different section after a period on pastry which is good. She gets Sun and Mon off each week as the restaurant is closed then plus an extra half day each week so it's not too bad.
Well, I'm in getting my treatment at the moment then get the week of, hooray, just hope I can keep away from the wretched place before I'm due back in 10 days time.
18-07-2017 11:12 PM
Hi all, yes carole do tell about the hols xx Nicky, hope your doing okay and interested to hear your responses to Lily's questions lol
lily, I don't usually get bloods but our doctors are doing mini health checks on people and wouldn't give me my full repeat prescription till had it done lol.... feel sick waiting for resu,to but will get the, tomorrow, he was doing about 12 checks on them. However, I know have fatty liver and had been good but with a busy slightly booze weekend and the 3 weeks in Florida eating very fat food I could think of and chilled wine I am a bit worried.... I did have 10 good days on diet and no booze and slot 7.5lb again but then thought my appointment was later this week and had some treats at weekend as was feeling in a grump and sorry for myself as everyone was away or out having fun inc. all my family so I was sitting feeling a bit glum lol, no reason for it. Ive still got headaches too which I think is sinus. She said my blood pressure was high too despite the tablet I'm on so will see what they say tomorrow, fingers crossed, it's that feeling of dread.
anyhow long day tomorrow and looks like we are in for some thunder and flash flooding, hopefully it won't last and it will start with the sun on Friday for you Lily 😂😂😘😘. Hope your getting spoilt this week.
18-07-2017 09:58 PM
how are you all? Carole you must tell us all about your trip. hope you are feeling recovered now. Lisa oh yuk, i didn't know you still had blood tests. Is it for the BC or the liver complaint? I haven't had a blood test for over a year so I will definitely be back to scaredy cat when i do!! Just like the dentist arggggh, hate them so much. I knwo you do too Lisa.
Nicky what is the plan now, do they keep going with exactly the same dose and regime or do they tweek it? I am hoping you can have a good period of stability or better so you can relax a little and enjoy some lovely things like your new grandchild before too long . Is she keeping well in this pregnancy? How is YD's job going? Is she learning a lot there? I am just waiting for Friday to come when I finish school and can switch my alarm off. The last week is very exciting in schools but also quite hard work keeping everyone calm. i thnik I will be my fattest ever this holiday as so many people have brought cakes in each day. i find it hard o resist. Maybe I should say impossible to resist from the number I have eaten! Well better finish here. Love to all . Lily xx
17-07-2017 11:09 PM
Hi Carole, welcome back.... have you recovered? Tell us all the places you went to, I'm jeleous xxx
well nothing to report here, finally managed to get blood from me today and when done about to leave and she realised that needed more so had to true again. Must admit I'm feeling nervous about results, hope fatty liver isn't to bad after 3 weeks in Florida, and hopefully nothing else lurking it's gave me a wobble.
hows everyone else's doing? I'm off to bed early for a change xxx
15-07-2017 07:56 PM
Yes, back from our travels, it was all very tiring and so we are suffering from being exhausted (after a holiday!!) but camping and touring in an older van is quite challenging.
I will post about our travels soon when I've caught up on some sleep. Lisa it right, it was extremely hot being in upper 30's most days.
All for now, will catch up soon hope everyone is ok and love to all xxxx
12-07-2017 10:57 PM
Ha ha it was a guess where she might be, but I am a good guesser. Drives Victor crazy when he asks me to guess something and get it right. The table is absolutely lovely, what a great idea. Yes I was thinking of grey/green something like that. Not sure I would convince Victor about lavender but would get away with it if the duvet set. Brilliant ideas thank you. Lily x
12-07-2017 12:11 AM
Just a quick catch up.... lily how did you know where carole was today lol.
oh bedroom decorating how fab. How about pale grey lavender and green. Sounds weird but goes fab. I need to sort my living room but on the cheap as ever lol but want something a bit retro. Had this old table painted by our furniture store and put some new wallpaper underneath so may go with this....