24-11-2017 09:21 PM - edited 24-11-2017 09:21 PM
Hi Tessa, yes, a very brave and positive lady.
lovely to hear from you tho, and eribulin really helped me...my tms were over 1000 in June last year.. .and eribulin knocked them down to 79 ish, sadly it stopped working for me this summer, but I have to admit it was a real comfortable chemo...if you have to have one! I suppose I must have been getting to the 20 something cycles mark.
hope all the other spongebobs are doing well xx
24-11-2017 09:06 PM
I haven't posted much on here but do check in from time to time to see how everyone is getting on.
I am starting cycle 7 now of eribulin and have been tolerating it well with few s/e, mainly tiredness and aching joints, thankfully recent scans show it is keeping the pesky tumours at bay. Was speaking to one of the chemo nurses who said they have had a lady that has been on eribulin for 39 cycles which is very reassuring.
I have been off work since February and need to decide whether to return in the new year and would like to know who is working and how you are finding it.
Moijan - I have been following Marnie's blog, such an inspirational lady x
Hugs Teresa xx
24-11-2017 05:54 PM
thankyou for your care and concern its very much appreciated, everything is ok!
For some reason my notifications ceased- I've just re-set them so I'll know now when I get a message or a new post goes up.
I'm very well, very tired, doing too much (of course!) and enjoying every moment of non-chemo bliss.
My next CT scan/onco appt is January; I'm endeavouring to put any scary thoughts out of mind mind until then. At the last meeting onc said he was amazed the scan results were still clear, I'm just thankful I let myself be persuaded to give Eribulin a chance.
I hope everyone is bearing up under the weight of chemo, scans, S.Es and the onset of winter...I think of you all and am always grateful for the support you offered so willingly. Such a lovely group of people brought togther in unwilling circumstances.
I'm going to read through all your posts now and catch-up
lots of love
23-11-2017 12:22 AM
Helen, good luck for tomorrow xx
Kay, just a quick comment...I used to have a very large gall stone and had really bad pain in the liver when I ate too much fat, and the pain was pretty unbearable.......was rolling around on the floor.
..had my gallbladder out ages ago now, but I recall being ultrasounded after getting symptoms and wash told that actually, apparently constipation can cause what feels like a pain in the liver, ( as we know the large bowel runs across in front of it).....I have mets in my ribs too which tend to feel like a burning pain and cramp when they occur, I also get what feels like a mild pain in my liver when I have a lot of wind but with a gurgle it disappears...... Just sharing in the hope that it helps?
22-11-2017 12:11 PM
i am ok as far as I am aware I do not see onc till Feb then he will arrange CT bit back to front for me I do not know why I can not have CT then see him with results but who ami to say which way is best
I have been having some pain on sternum and behind implant and in liver but I also am aware I can have that if shrinking so I tend not to fuss to much about it I would if it got really bad but it is not bad enough to take painkillers
Glad you have replied and fingers crossed it is still working for younand yes I am on cycle 14 also which is why I asked how you were doing
good luck with scan
let us know
21-11-2017 05:04 PM
Just checking in, haven't been posting for a while but still reading. Hope you are ok at the moment, you must be just starting cycle 14 like me? I have CT scan results tomorrow so I'll know more about whether I am carrying on with eribulin. I hope so as I seem to tolerate it pretty well and have got myself into a routine with the treatment and know 'where I am at' if that makes sense.
I too was wondering about Withasmile - please let us know you are ok.
Hope all you lovely ladies are doing ok with eribulin.
Take care, Helen x
20-11-2017 02:12 PM
I have noticed the forum itself has been quite quiet. For Marnster....have a look at her blog' life is too short to miss desert'
hope all is well with you...and that eribulin is working it's magic for you xx
20-11-2017 01:03 PM
not heard from you for a long while I am hoping everything is ok please respond only if to say hello
also have not heard from Helen I hope you are both ok please just give us update Helen again if only to say Hello
19-11-2017 06:10 PM
so so sorry to hear about your tooth! I too hate things done now I'm on Zometa,
have an an appointment to have three fillings done in December and like you I live in trepidation of possible side effects ...but have had fillings done already whilst on Zometa
also, some years back Nicky posted on a thread somewhere that she had an extraction.....and things were ok...tho, I have been told to avoid extractions as you have.
My dentist did have a lady who I think was the first one in the U.K. To get jaw necrosis,,,, apparently hers is growing back now. Anyway, my dentist is adamant that fillings and hygienists are ok whilst on biphosphonates.
very best wishes for your treatment Kayxxx
19-11-2017 03:31 PM
that is about right that's why I have stopped donating now seems pointless when you can not get the drugs in the first place
I told my sister that there would be a catch as there usually is in our cases
i had the same problem with everolimus and exemastane we have had too many treatments
Now I have broken a tooth so off to see if Dentist will put temporary filling in whilst I see what the score is I am not due xgeva till January so that could be my stop date not sure about the chemo though and fillings
but first I will see if a filling can be done and it is not a tooth extraction as i know I can not have it taken out with out stopping xgeva but think I can have a filling but not sure whilst on chemo what I can have done
That will teach me to fancy a chocolate eclair do not very often have a toffee think last xmas was the last time
18-11-2017 07:25 PM
I fear not Kay. It was the thought I'd had too, but they don't seem to be allowing us to have it once we've had chemo.
The 'Nice' website now has all the decisions making process on there......makes me feel quite cross.
18-11-2017 10:32 AM
great news with the release of the 2 drugs will you be eligible for it along side the injection in the bum beginning with F that Can not spell at the minute (chemo brain )
07-11-2017 11:53 PM
Yes, good luck with both
was thinking maybe trends are changing-maybe they don't worry so much...140 as systolic would be normal enough for my comfort....and you have found it much lower at home so your plan is a good one xx
07-11-2017 01:34 PM
Hi Moijan and all
i had my flu jab on Saturday out of the staff doing them I got a GP so I asked to check my blood pressure giving him my left arm as I had at the chemo suite and it was 149/90 he said we would not treat at this level
i had ordered an omron blood pressure machine from medisave reduced from 89 down to 56 it arrived yesterday I plugged it in took my BP and it was 111/77 I deleted it and this morning took it again and it was roughly the same so saved it to memory and will take again this evening I will continue to take twice a day for couple of weeks then do an average reading for the 2 weeks. So it is looking as if I may have white coat syndrome even though I do not feel nervous the only other thing should it not be that is my
HUSBANDS DRIVING. Which after being happy with readings after 2 weeks I will do one every time I have been in car with him without going to gp or hospital and see if it is up then haha 😂
05-11-2017 04:59 PM
Yes...and actually, I just realised I get 'white coat' about loads of stuff...what are the drugs doing to me? Is this a sign of cellulitis? Does this digital thermometer work well enough?(I have three or four now and they all say different when I need to check my temp) have I got another DVt? I hate having to take myself in hand sternly and say...this is likely an over reaction
i know the 'white coat' thingy doesn't quite fit any of those, but I'm sure my bp prob rises and falls when I'm anxious
05-11-2017 12:25 PM
Just popping in, yes Moijan, I can totally relate to white coat syndrome & it’s been a problem for me over the years. After one GP appointment when first diagnosed, I decided to do it myself & got the Boots bp monitor.
As I thought, there was no problem at all with my bp & now my GP & practice nurse are a lot happier about it!
05-11-2017 11:22 AM
Havejust read Nickys post and forgive me...but white coat syndrome can be quite pervasive, especially with us
ex nurses etc.....I have proved this, by having a second recheck done at the opd...in fact they always do this if my readings are queried anyway and then I consciously relax and it changes.....
''I think a machine from boots or other chemist would be really useful.....I have two, but now rarely need to use them unless I'm concerned.....a sphygmomanometer can't really be as accurate if you are having to juggle a stethoscope as well....treat yourself.
03-11-2017 08:34 AM
yhanks for reply I doubt our GP loans out bp equipment i as when my husbands was very high I had to do his pressure at different times of day over 4 week period
but I was thinking of getting electronic as finding it difficult using my sphig and stethoscope on my own but I do not feel I suffer from what they call white coat syndrome but who knows
thank you for your reply though