Sounds as though you did just the right amount of rambling Jacquie - I can almost picture it…
Jennyx
oooh what lovely hols Jacquie.
Jane x
kerry rose
congratulations on wedding hope it went well and it was everything you dreamed of, xxx
been in bit of back pain lately which just mekes me worry, didn’t help that chemo nurse suggested we take our dream holiday whilst i’m feeling ok!?! bit worried! x
hope all ok. x
My wedding day was absolutley brilliant! Perfect from the weather to the food to the decorations everything. We are so glad that we went ahead with it, it was the best day of my life! I just want to do it all again now!! Looking forward to our honeymoon now xx
many congratulations kerry - sounds fantastic x
Hi Ladies
I don’t usually come on this thread but I have just seen the ‘Latest Comment’ and wanted to add my congratulations to Kerry as well - hopefully off enjoying their honeymoon - how lovely.
I also saw the question from Snoogle about Letrozole (Femara) and Zoladex. Zoladex is usually given 4 weekly ( or sometimes 3 monthly) and switches off oestrogen production. It’s not usually painful but it is a bl**dy big needle - do not look! It goes in subcuteously (sp?) ie just under the skin at an angle and deposits the little pellet there to gradually dissolve. It usually goes under the skin in the stomach as there’s more to grab! The side effects are menopausal ones but I did have achey ankles 1st thing in the morning when I was on it (5 years ago) which stopped when the Zoladex stopped after 2 years.
I have been on Femara this time round (with bone mets) but reacted to it as one side effect is atrial fibrillation which I’m prone to. I’m now on Arimidex which doesn’t have this SE despite being the same type of drug as Femara ie it stops oestrogen being produces from our body fat rather than blocking receptors - which is what Tamoxifen does. I hope this helps and if you have any more questions please ask.
Also hi to all you lovely ladies on here and hope any holidays have been good for those who’ve had them and all those who can’t I hope you are doing well.
Nicky x
Hi Kay,
Just wanted to say I’ve been thinking about you today. Hope your scan went without any hitches. When will you get your results?
I’m back in scanland too at the moment. Had MUGA heart scan today and got CT of whole abdomen/pelvis/chest/liver next week (part of the RFA follow-up).
Hope you had a lovely holiday
love Jacquie xx
Hi all
Hope everybody’s well.
Sorry I’m not particularly active but find it hard to concentrate on a screen of late. I’m on my second EC at the moment and will have a scan next week to see whether it is working. So far I have found it more manageable that the Taxotere, but am just tired and sleep deprived due to coughing fits which have finally improved. I would like to think that this is because the drugs are working, but the pit of my stomach is starting to work overtime (on the bright side, at least no contipation!). I am shedding hair and wondering whether the thinning that has been mentioned with the cold cap will leave me with a Hamlet cigar advert comb-over by the time I finish the 6th cycle (any advice, Kathryn?). At the moment I still have a head of hair and no patches, but it’s not like I had a glorious mane to start with. Hmm.
Good luck with your scans Kay & Jacquie. I shall cross all my body parts for you. I’m very impressed by your rambling efforts, Jacquie and Kay am glad that you can still muster the energy for some online shopping, gormless or not.
Snoogle, it seems like only a month ago you started treatment, so I’m glad you’re getting a break from chemo. I did an extra two rounds of TCH and was virtually comatose by the end. I also developed a sensitivity to Carboplatin and reacted to it, so I think that’s what your onc means by the toxicity versus the benefit. I can’t say I particularly noticed any major side effects with the Herceptin alone.
Kerryrose, big congratulations & I hope you have a glorious honeymoon.
Kathryn did you have a nice time in Corsica? I’d considered going there earlier this year as it looked beautiful and seemed to have an interesting cultural mix.
Debs, glad to hear that you lost your berry and hope the Vinorelbine isn’t too harsh.
Alexamay09, I do hope the steroids have made an improvement for Katybleu.
Brain is drained, so once again, hope evryone’s as well as can be & catch up soon.
xxx
Hi All,
Sorry I haven’t posted since all your kind words of support following liver secondaries confirmation. Have had an awful virus between chemo 2 and 3 which knocked me for six, but have just had 4th FEC and midway scan showed stable liver mets with some reduction.
Kerry rose - congrats on your wedding, hope your enjoying a lovely honeymoon.
Kay and Jacksy, good luck with your scan results and hope everyone else is well.
Love
Rachxx
Think you’ve said nearly everything I was going to say/ask, Ripley! Glad to hear that the coughing fits are improving and fingers crossed that it is indeed because the EC is working. When are they suggesting scanning you?
Glad to hear also that your scan has shown some reduction, Rach. And you are over half way through the chemo which is always good news. Here’s hoping there’s further improvement for you and that things then remain stable.
ANd many congratulations Kerryrose - hope your honeymoon has been fantastic.
Very impressed with your walking, Jacquie. It’s many years since I have been up Helvellyn and I swore never to go up Striding Edge again! I was pleased though that I managed a walk each day - and managed a climb to more than 2000ft and a distance of 8 plus miles on the last day, despite the rain. Don’t think I could have done that on chemo and am hoping it bodes well for the scan results. Am feeling quite well now but still needing a lot of sleep (10 hours plus a night). Went back to work today though which was good though so much to catch up with.
Good luck with your scan next week, Jacquie - will you have long to wait for the results? And was your MUGA scan ok?
Am still trying to catch up on everybody’s news so apologies if I haven’t picked up on something.
Have a good weekend Kay x
Glad to read some of the pages on this thread. I too have liver mets and its spread to my bones. Its depressing and lonely at times but have to keep my chin up as much as possible. Have two kids aged 3 and 8 and a husband (who is great at supporting me). Am on Paclitaxol and Herceptin and Zometa (for my bones). Condition has been halted so far and now need to get it in remission. Anyone found successful things to do and goals to have to keep them looking forward with some positivity and feeling life can go on and indeed will go on and in a decent condition for some time. I hear of people with cancer working out their targets and goals for life and going and making them happen and lasting for years. How about anyone out there? Got any successful goals, etc.
X
Hi everyone
Glad to hear that both Kay and Jackie had a good holiday in the Lake District. Am impressed about climbing Helvellyn! You must view that as quite an achievement Jackie! Hoping all goes well for you both with the scans. Ripley with the hair, I coloured mine quite dark as it created an illusion of thickness and just got the hairdresser to tidy uo the layers and give it some shape, as it’s only a temporary colour it doesn’t last long, about 6 weeks but my daughter does point out when I need the roots doing!
We went up to Suffolk last week which was lovely but a bit disrupted as we had to get back for son’s A level results but he did get the university place that he wanted so at least I can stop stressing over that and now just have to get him packed up and sent off! I was also getting very breatless so had a chest XRay the same day which showed a recurrence of the Pleural Effusion on my right lung so that was drained. I saw my oncologist today who is of the view that things are on the move again, after only about 8 weeks of finishing chemo. I am going to book another scan and carry on with the Femara for the minute although it looks like I will have to go back on chemo, Gem/Carb appears to be next. I really want as long a break as possible as I feel that my body has been really buffeted and needs time to recover. I had hoped tat Taxol/Avastin would have given me more of a reprieve.
Love to all
Kathryn
Hi all
Good to see your post, Kathryn - was wondering what was happening for you - but not so good that onc feels things are progressing again. Incredibly disappointing if the Taxol and Avastin has not held things for longer. Good luck with the “packing son off” - all very emotional but brilliant that he’s got the place he wanted. Gather lots haven’t this year. Your must be proud.
Glad that some of the ramblings on this (very long) thread have been helpful mummy33. I don’t set myself many goals but do always try to have at least one thing booked that I am looking forward to. Hubby and I also are trying to do something (even if it is only going for a walk together) every weekend rather than get too bogged down in all the things that “need” doing. We had walked most of the North Downs Way before my secondary dx but have never completed it, so now that I am off xeloda, we are talking about trying to finish it (about 40 miles to go to Dover!) - but will wait for my scan results on Thursday.
Hope everyone else is doing ok. Kay xx
Hi mummy33…I don’t have liver mets but I was diagnosed with bone mets in 2003. I hope your treatment is working well. I don’t set goals as such, I book holidays well in advance…have one booked for next July and assume I will be here…if I’m not this would have been the least of my worries…if that makes any sense?? After a couple of years of living with mets I stopped thinking this might be my last Christmas, my last summer, I’ve found it less exhausting this way. This works for me but others make big goals, plans, years ahead…whatever works best for YOU. Good Luck…Love Belinda…x
Hi Kathryn and everyone,
I have never posted on this thread because even now I dont want to accept the fact that I have liver secondaries. BC diag year 2000 then bone 2000 with arimidex kept it all at bay until Jan this year then liver been on Taxol for the last six months and still progression. Sometimes I wonder what it is all about people say be positive and thats what we all do. Just been to Hospital today and have decided to have a break in Spain for 4 weeks and I intend to enjoy the next few weeks and when I return see whats in store. My prof have put me on aromasin for 4 weeks and then more chemo. What can i say… make the most of your time if you can it so hard to get your head around it all. When I saw my onc today and he just gives me a cuddle and says I have lots more up my sleeve for you my dear, well I hope he has because I intend to be around for a long time. It is a hard slog but I still enjoy my life and try not to think about what is around the corner, sometimes I wonder what life would be like if I hadnt got bc but we have and there isnt a lot we can do about it. I know when I talk to other people who are “normal” they dont understand what it is all about. I just wish everyone all the best in the fight with this f… s… disease. When I return I just hope that someone has found a curexxxxxxxxxxxxxxxxxx
Take care
Love
DebsH
hello all
glad your all enjoying your hol, we go to devon soon with my brother and his family which i’m looking forward to.
feeling bit low at min, have been in pain with my back, and when i had chemo friday my bloods have risen! i’m gutted, my onc thinks it’s just a blip but still got pain now so waiting for ct scan! not sure i can take any more bad news!
sorry, guys hope you all well?
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Hi everyone,
really glad some of you have been able to enjoy your hols, as I live in Carbis Bay my hols this year are having to be local!
Just had my eldest daughter here for a week she had friends join her, as I am not getting out and about much, I did not want her to get fed up! We went for a lovely meal Monday night to the local restaurant we had a lovely time. It is only a few hundred yards but the walk home was tough. At least I did it I couldn’t have a couple of weeks ago. This made me more optimistic that vinerolbine is working for me.
While Samantha was here Ian played her my funeral music and although we were all in tears she loved my choices. These are things we have to do as well as planning little treats. Samantha was visibly shocked at my frailness (if that is the right word) I was able to fly to Manchester on my own in April but noway could I do that at the moment. I am hoping I will be able to do it in October and I am desperate to still be here to welcome my new grandchild in February. It would be so cruel if my youngest lost her mum during her first pregnancy so that is my main goal. The most important one.
Take care.
Love Debsxxx
Hello,
Thanks for your responses. It really sounds important then to find out the way to make plans and goals to work for youself. I sat down today and planned the next things I like to do short term and the next year or so to be able to plan a future after chemo so I’m not just concentrating on how to cope with the side effects of weekly taxol for 18 weeks. It has given me some things to look forward to.
I did have a weekend away planned with my husband in London for our 10th wedding anniversary the week I ended up in hospital instead, finding I have secondary cancer. So the plan is to have our 10th wedding anniversary trip to London once I’m through with chemo.
Zoe
Hello everybody, old and new
Kay good luck tomorrow. I get mine too, so will be thinking of you. Jacquie, not sure if you’ve had results back, but I am hoping for a good outcome, for all of us.
Kathryn, I sincerely hope that your cancer is not on the move & wish you the best of luck with your scan. I know exactly what you mean about reprieves - it is so tiring to be on the constant hamster chemo wheel. I didn’t realise you could dye your hair whilst on the cold cap, so I shall keep that option up my sleeve.
Hi mummy33, I don’t set goals either - never have been the type of person to set them, so it seemed odd to start now. However, I give myself treats because, quite frankly, I really do deserve it. I just try and have things to look forward to - whether that’s a massage, shopping, meeting friends, a trip, whatever - just simple things to look forward to with the people I enjoy being with. Sometimes I overdo it when I have good days/weeks and go for it, but then when I have bad days I fully embrace doing bugger all.
Congratulations Rach on your stability - I love that word! Long may it continue.
DebsH, I’m sorry that you’ve had progression despite the Taxol. I seem to be having the same problem with my lungs, whilst my liver is stable. Four weeks in Spain sounds heavenly - what’s the point of staying here and thinking about the forthcoming treatment when you can be eating lovely food and sipping some cava sangria? I did the same this year before my current chemo and I was surprised I managed to relax and give myself a break from the cancer world. Have a fabulous time!
gossie, do you mean your liver function tests? Not surprised you are feeling low. back pain is so oppressive and then of course the extra worry we carry with us. I know that we can’t take things for granted with our condition, but I really do hope it is a blip as your onc says and that you maage to have a good trip to Devon. I had three months of hip pain this year, nothing showed on xrays and bone scans and then it just vanished. Very strange, but I’m not complaining.
Debs, I always think back to your previous narrow escape and really hope that with the right drug combo you can get some stability. I’m glad that you can see some progress from walking back from the restaurant and hope it is a sign that the Vino is working. I can’t imagine how emotional it must have been to play your funeral music to your daughter, but you’re right that these are things we have to do and I’m glad she approves of your choices. I couldn’t even begin to broach (sp?) that subject with my family! And it needs doing cos if Christmas presents are anything to go by, they will undoubtedly choose something I really don’t like!
Anyway, keep your noses clean, people.
xxx
Hi all
Good results for me today from the onc - the CT showed a largish area of dead tissue around the tumours which themselves were showing up on the scan as less solid. This is what he expected evidently following the SIRT and there should be further improvement for upto another 3 or 4 months - he described it as “encouraging”. He even committed himself to saying he would expect at least 6 months progression free and possibly “substantially more”. That’s definitely good enough for me given where I was a few months ago! So quietly celebrating tonight.
Hope your results are equally good, Ripley, gossie and Jacquie.
Sorry to hear that you’ve had progression despite the Taxol, DebsH - hope the time in Spain is good and you come back ready to tackle the next chemo.
I am so hoping the vinerolbine is working for you, Debs, and that you not only get to welcome your new grandchild but have some precious time with her/him. I would so love to be a granny but no sign of that happening any time soon! Eldest has just finished with her boyfriend of 2 plus years which is all very sad.
Take care all.
Kay xx