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Chemo Buddy Needed - Anyone Currently on Eribulin?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just sending a bit of love and encouragement to everyone on Eribulin and all the poppers inxx

Moijan💚💚💚💚🤗

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Shirley, I was on eribulin for 14/12 before it became less effective.did wonders for me, but bc grew again.

 

now on Fulvestrant,......but not everyone gets it as many hospitals can't afford to pay for it...it's not approved by Nice

 

good luck, , don't despair xx

 

Moijan🙏🤗.;

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Shirley and I'm sorry to hear that Eribulin is no longer working for you.  As to what you can go onto next it will depend on what type of receptors your BC has ie are you hormone positive/negative (I'm assuming you're not HER2+ as you've not mentioned Herceptin) and also what previous treatments you've had.  Sorry I can't be more specific than that but I do hope whatever you do go onto it is kind to you and sorts out those liver lesions.  Let us know how you get on, and about any of info about the above we may be able to help with a bit more advice.

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone, I haven't been here in a while. I have been on Eribulin since January. It seemed to be working, even though I was having a hard time with numbness etc, and had my treatment reduced  to half. I had a scan in November which showed that my liver lesions had grown. One in section 2 was 20mm and had grown to 29mm, and one in section 6 which was 13mm now 27mm. It also showed new lesions. So Eribulin has stopped working. I am in a daze, and don't know what will happen now.

Does anyone know what can be offered after Eribulin?

 

I hope you are all having a better time then I. And have a happy Christmas.

 

Shirley (Atters)

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Great that worked!! Lol!
Went were it was supposed to 😀
I have just started eribulin, day 8 today me first cycle.
I have Inflammatory TNBC with skin mets and other breast secondary.
Thought I'd like to join and see how other people are getting on with it!
Already had gem /carbo and cape this year neither worked so here I am.
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Evening ladies
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Mojan,

 

I have been on eribulin since june, just had my first scan results cple weeks ago, the tumour in liver, adrenal gland and nodes have all dramatically reduced, was very shocked and pleased. My oncologist has given me alittle break from it till Jan 10th.very pleased about that, I have also beCen drinking japenese tea as well, so dont know if this might have contributed,dont suppose i will ever know.  How are you doing, i know you said they were prob taking you off eribulin, are you on another chemo now,this chemo is very kind to me,i only really suffer with fatigue.  Hope you are doin well,lots love, Carol Pope xx

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Can you try a chiropractor?

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Carolyn

glad things seem to have stayed the same for you let's hope MRI gives good results you have been lucky with the  letrozole and let's hope it continues 

I am ok just just my leg so saw GP all he wanted to know was if I had indigestion told him I am on lansoprazole then he asked what was the worse scenario so I told him going to the bone so he said he could do 2 things have X-ray or do urgent referral back to onc (which I could do my self ) so in the end I just said do X-ray if you think it will show tendon or muscle up he then decided to do both he sent the X-ray off electronically gave me phone number to ring radiology department came home rang no one there so left message waited 4 hours rang again still no one there waited another hour rang spoke to someone asked if I could have following day before chemo they said would get back to me which they did but I can not have X-ray till next Thursday 14th bet I do not get results till after xmas 

so I rang onc secretary left message to ring me. Luckily I know her well so I can alert her to look out for X-ray and then she can say to come in and see onc or stay with appointment in Feb I know I could be very wrong but I think I have over done it and pain  killers not working so wanted something different that's why I went to Gp but as usual they are passing the book back to onc 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?


Carolyn apparently nice reconsidered xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello kay...can't remember where I saw the link now !!
Yes I got my results Wednesday. .bones stable , adrenal glands recovering ( this was a shock as they have never been mentioned before ) and a mri scan on liver in 3 months as the ct scan didn't give a clear picture ..oncologist thought that maybe contrast didn't go through properly for scan ...
So I'm continuing on letrozole. .not a bad result so just going to focus on Xmas now !!
Hope u doing OK.
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Carolyn 

I thought they only allowed it this year I got for funding  for it just before they opened it up as in 2013 they stopped it due to cost and did not give us as long enough time to live at that price can you send the link so I can read it please

have you got your results yet ?

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Just reading online that NICE have rejected use of this drug to ladies that haven't already had two failed chemo treatments ...so it's going to limit new ladies becoming sponge bobs here !!
Apparently they can't justify the high cost against standard cape pills which are cheaper. ..
Xx
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Glad things are stable Helen xx

 

M💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

So pleased that you are doing well Withasmile.

I started cycle 14 last week as the eribulin is keeping me stable in liver & bones. The 2.7cm tumour is still 2.7cm in liver but at least it hasn't grown or any new mets appeared- for that I am grateful. The neuropathy in fingers and toes has eased off a bit as well so happy (!!!) days....

Take care Spongebobbers, love Helen x
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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Let us know Bousy....

 

love and best wishes, Moijanxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Thanks Moijan, hopefully I will find out what it is.

 

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Bousy, 

 

Your bowel perforated on Doxetaxel? Oh how very scary for you xx

 

well, as you know, we aren't allowed, nor qualified to give medical advice on here...however, I can share the things that have happened to me...I had a huge gallstone, which I wouldn't let them remove at the time- that gave me severe unreleivable pain behind the right ribs....it came after eating too much fatty food..and that pain can be felt in the back also..        

 

After I'd had my gallbladder removed, and sometimes now, I had a kind of similar pain, which was much milder and seemed to go when a rumble of wind occurred.. I got examined and a registrar told me that the bowel can cause a similar pain if it's a bit overdue for being emptied!

 

i do occasionally get mild pain on the right side further down, which I've been puzzled about but. I suspect tight belts may have contributed to this.  I have also had hyperchondritis - a rib pain which is associated with intra-muscular pain......

 

mri scans are brilliant at picking up some of these things, but often there's no proof exactly what it is.

in your place I'd be making sure I ate and drank appropriately and I'd likely monitor my temperature for a while....I think I'd get an appointment with my gp......or at least chat to a trained pharmacist..they don't diagnose but I often chat stuff over with them and find them helpful.......bounced my situ around with one this morning and am going to experiment  with a very mild antacid to see if it helps...but if things worsen, I'll call my gp.

 

Moijan😎

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan,

Hope you are ok. 

It’s funny you should say about pain under ribs. I keep getting it at right hand side under my rib and at the back . I’ve just finished cycle 7 and see onc on Wednesday. The pain under rib feels more like it’s swollen. Do you get swelling or anything when liver mets are shrinking?

I’m worried about bowel, that goes near the ribs, I think. Mine perforated with docataxel so worried. 

I had this a bit before last scan in September but nothing showed up. Due another scan next month.

Liz x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Actually, ladies, I have been waking up with left sided, under the ribs pain, which on waking makes it hard to move around. But does improve during the day, but I am puzzled. Googling comes up with loads of stuff, spleen, constipation, reflux and on and on.

 

must admit..initially I thought of spleen because of where it is...but seems lots of people have had it after a course of antibiotics! So am keeping an open mind for the present and hoping it will go away!  Just thought I'd share this as lots of newer bc travellers often say how we seem calm etc.. but we too, go though times when we don't know what is happening.

 

 I'll also comment that gp's are inaccessible except In emergency and

i don't think it's an a&e scenario (yet ) on the symptoms...I'm certain it isn't bc either - antibiotics are in themselves anti inflammatory..but can irritate the bowel and I suspect can encourage muscles and tendons to be a bit slack whist we take them...and of course gut bacteria gets a beating...so I'm going to drink loads of water and take Kefir with probiotics added at a different time to my antibiotic -

 

I am no longer on chemo, so I'm currently safe to take probiotics without checking it out with the onc!

 

will feedback how I get on xx

 

hope you are all happily chugging along xx

 

Moijan😎

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile 

Glad you are ok and keeping busy hope your horse is keeping you occupied as well 

good luck with you CT in January 

i have chemo weds before xmas and wed after so I probably have to try and be social during the festivities 

at least I do not have to cook 

 

you take care and enjoy your chemo free time 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

thanks for that will take more notice next time it gives me a kick see if I have eaten anything different

I thought I had gallstones when I was diagnosed with the liver mets 

At the minute I have a very bad ache in my right thigh which is curtailing my walking at the min but just re read the xgeva and it could be that any way I am not worrying about but you know what it us like just that little nag that thinks is it the cancer or I do rationalise it with myself 

 

take care 

kay 

if this goes on site 3 times keeps saying error 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

thanks for that will take more notice next time it gives me a kick see if I have eaten anything different

I thought I had gallstones when I was diagnosed with the liver mets 

At the minute I have a very bad ache in my right thigh which is curtailing my walking at the min but just re read the xgeva and it could be that any way I am not worrying about but you know what it us like just that little nag that thinks is it the cancer or I do rationalise it with myself 

 

take care 

kay 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi spongebobs

Although I am no longer one of the gang I do follow the threads although recently have been very busy so hardly been on the forum.  Anyway, I've had a quick catch up.  Thanks for asking after me Moijan. I am off eribulin as it was decided I needed a break after 8 cycles.  I was tolerating it fairly well although did need the GCSF injections each cycle - which is why I think it was decided to stop, to give my bone marrow time to recover.  I know you also had them, Moijan, but I guess we are all different, as are our oncs. So, I'm currently on a hormone treatment, exestamane (Sp? Aromasin is its trade name) which I was put on whilst waiting to go on a trial. Well, guess what? No trial is available as my disease isnt progressing and you can only be accepted on a trial on the basis that your disease is not stable. So, it is good news that I'm doing OK but a bit daunting not knowing 'the next step' - which I always want to know. Having said that I am enjoying not going to hospital which is why I've been so busy.  I will be scanned at the end of December with results early Jan to see whether the hormone holds things at bay which of course I'm hoping for.  I have always responded well to hormones but am also aware of their decreasing effect the more you have/try.  So we will see.

In answer to the question about tooth extraction I did have one removed some years ago, whilst on bisphosphonates, before I had gone onto denosumab.  I had it done at the maxo-facial (again, sp?) at the hospital as they are aware of the risks of jaw necrosis.  Everything was fine but that's not to say it would be in every case so I'm not sure this helps much - sorry.

Anyway, wrap up warm spnogebobs and hope eribulin is treating you well but attacking the little gremlins.

Nicky x

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

 

love, Moijan🤠

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi everyone,

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

hello everyone-

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

xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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?

 

Moijanxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Helen

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 

kayn

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hello KAY

 

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

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Marnster 

not heard from you for a long while please pop in to say Hello if your able

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Withasmile 

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 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Withasmile, how are you these days?  And the lovely horse from your avatar?

 

 

who else has been away?Nicky, how are things with you?

 

 

Moijanxxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Kay,

 

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

Moijan

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

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 

 

kay 

take care

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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.

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan 

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 ) 

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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

 

moijan💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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 😂 

 

kay💉

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Ann x

 

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

 

Moijanxx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

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!

ann x

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi KAY,

 

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.

 

Moijan😎

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi nicky08

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 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi kay/pussy

I have had high BP every time I have been on hormonal treatments, but it goes back to normal whilst on chemo.  I am constantly monitored (well, I have regular checkups!) and I would say that a BP reading of over 140/90 would be determined to be high.  I do know that my BP goes up, and is therefore generally inaccurate, when in a hospital or doctors surgery so I bought my own blood pressure machine many years ago so I can check it at home.  Maybe your doctors surgery can loan you a machine to take your own readings over a course of a week?  Mine did have loan machines before I bought my own one so I was able to check without the inaccuracy that White Coat Syndrome gives!  Hopefully it's just a blip but I also know that there are several blood pressure medications that work perfectly well whilst on Eribulin so a cardiologist or your own GP would be able to prescribe something if necessary.  Btw I attend the cardio-oncology unit at The Brompton Hospital who specialise in this type of problem, so I do know what can be done to help.

Nicky xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Kay, have sent you a pm xx

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan

it was a dr I spoke to unless I misheard but my nurse is due on the 7th so I will ask her I will also ask my friends who still work at the hospital in heart clinic to ask consultant what his thoughts are if it is still run by opd a lot has  happened in opd since I left 7 years ago and not sure if opd still supply nurses or if cardiology have there own staff now but I will find out  as I think it is too high

 

kay

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi, my go would be concerned about a continuous reading of diastolic of 90 upwards, but maybe it would be good to get your own machine? I do mine sporadically and it varies a lot. At the hospital it's usually 75 or under, but not always. It also depends a little on age as to how they view it.

 

and to say, 'we don't treat it if' isn't helpful, as if it is higher than ideal...they should have a chat and look at your general health...why don't you go and see the practice nurse?

 

Moijan💚💚💚

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi again 

forgot to mention 

have always  had a low blood pressure about 115/75 but the last few chemo's it had been 145/81 then my normal reading but it varies from week to week this last week it was 125/94 I did say I was concerned about the diastolic reading more than the systolic but they just said if I was concerned then to see my GP well that's a laugh earliest I could get is Nov 14 th  so I asked for someone to ring me and they just said we would not treat people with a diastolic reading of 94 and to ring them back when it goes over 100 which I thought was a bit much because it would mean my heart was not resting and would be meeting my systolic 

does any one else suffer with high  blood pressure reading on the diastolic if so are you being treated 

 

kay

 

 

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Re: Chemo Buddy Needed - Anyone Currently on Eribulin?

Hi Moijan Bousy and others 

the thing is I have had shingles as you all know since being on eribulin have had 2 bad colds last one lasted 6 weeks and cold sores off and on through the 13 cycles that much so I only drink if out in bars through a straw and even take my own straw and this month not had any I suffer with fatigue quite bad after each chemo second dose really knocks me off my feet  but I think I will have it because like I said we are between the devil and the deep blue sea which ever we decide 

but I like my week off I am out everyday doing things 

 

take care all 

 

kay