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Bone mets - please join in

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Re: Bone mets - please join in

Well ladies
That was a surprise ..vein easy and so full of the red stuff ..it's needed a plaster .
Just goes to prove ..litre of water and hot water bottle before works for blood tests.( normally a struggle to find one and get enough to fill the tube)
Xxx
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Good morning ladies.
Well nurse will be here to do my blood tests ready for bone juice on Wednesday so im warming up my veins with a hot water bottle and drinking loads of water ...my poor veins are getting harder and worn out.
No need for a picc line or port though as I'm not having iv stuff yet !!!
Hope everyone is ok and good after the weekend ..sign of relief for the busy mums as kids back to school today. ..always panic stations first day of term ..the uniform doesn't fit and new school shoes are hated by the kids !!
Xxx
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I may I inquire about port.im very squeamish about it..the actual infusion of erubulin is only about six minutes.im dragging out the visit as well by using cold cap.i think my veins got tired by the week on hosp with canulas and loads blood tests which I thought were overdone..as I had no infection at all..sharon.xx
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Hi everyone
Feel lot better today not doing much but ok...iv got to get well for my sister in laws wedding next week as my grandchildren are bridesmaids pages .etc...my sister in law never married and is 60..met someone at b&q. Where they work and success.im gobsmacked never thought id see the day...💒 💑 x
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Oh Sharon, I hope that the chemo process gets better orchestrated the next time. I hope your SE are minimal and that  you can rest up and enjoy some of your 2 weeks away from the hospital and doctors! It will feel like a vacation. Please do yourself a favor and get a port. First thing my thing my oncologist does when you need long term chemo is look at your arms. He almost always says you need a port.  I've seen very few people without them. Hugs, FF

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Hello Sharon - glad you got your chemo in the end. Sounds like you had another very tiring day, though. Hope you got plenty of rest last night!

 

Best wishes. Hugs. Barton.x

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Hiya Sharon
Ha ha ..good advice though. As long as they don't say eat chocolate but don't take the wrapper off !!
Hello to everyone
Xxx
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Hi all .yes had to laugh at chemo info not to have sex without condom while on chemo..blimey some people must have loads stamina😊 Sharon.x😈
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Well done Sharon, i usually have a long wait. , our unit has four rooms, sometimes 20+ in three of them, just lately there seem to be less nurses too. Anyway, they wont pet you arrive before your time and then you are told'chair x, in Room x' yesterday there was still a lady in my chair! She told me tnat she would be another 8 minutes, but when the nurse came they chatted for a while about her daughters uni and then a lady opposite had a scary turn.....had difficulty breathing after her chemo....poor lady.

 

eventually nurse came, looked at my srm and them I had to ho and sit by the sink etc!

however whe got a vein straight away. 

 

I agree with Carolyn, du try and have a lovely rest. Hope you are feeling well otherwise? I wont mention the s  word!

 

love and hugs, Moijanxx

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Sharon
Glad u have had the chemo today but it sounds like you need to rest now and let your body adjust to the new chemo.
Enjoy yr weekend
Xxx Carolyn
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Hi all a long day at hospital got back home at ten past eight..there was an hour and half delay straight away.then my veins played up.got it all done eventually..my bloods were fine just hoes to show I felt so tired thought they wouldn't be.anyway all done .hopefully no hospital for two weeks
,❤ take care all..sharonxx
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Hi Sharon, good luck!   Much love, Moijanxx

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Hi Sharon, good luck! 

Much love, Moijanxx

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Good luck today Sharon, we'll be holding your hand.

 

Moijan. I  think the placement of the port is pretty much down to the surgeon though I  think I'd still have a word with him/her and state my preference if I  were you, also don't be brow beaten into accepting a placement that you are really unhappy about. Mine was put in by a woman and she put mine  on my 'good' side above the breast below the collar bone and  slightly to the left. Unless I'm wearing something really low you can't see it and actually the port itself is quite small and not really noticible, just a little raised bump, the scar underneath, where she originanlly accessed it shows more. I  do know someone who has it their arm. When it comes to the time good luck, don't be shy about where you'd like it, it's your body, but don't forget the nurses will need to get to it relatvely easily.

 

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Moinsn glad all went ok
A purple wig sounds wild😈.I'm going up at two today.xxsharon
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Good morning ladies
Hope u r all well ..Jeanette and jultz you have both been a bit quiet so hope u ok.
Well Autumn is creeping up on us and the darker nights and so flip flops ( getting cold feet evenings now) will b put away soon unless you are off on late holidays to the sunshine.
Take care Carolyn xx
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Julie D, how big is a power port? I understand my hospital uses one which is ct and mri friendly so likely its the same one? And is it obtrusive? Were you able to request the site? I hear some people have them in their arms...much less obvious than an extra erect nipple where you wouldnt expect  one!( sorry!)

Moijanx

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Good luck tomorrow Sharon,  i went for mine today and the nurse gave me my blood results...all good, thank goodness.  Strangely enough they got my vein first time! Isnt life odd?  I cant believe how quickly im in and out of the unit when things go well,I trotted off to buy a purple wig, but they were out of stock!

 

Helen, I am on the same page about the forgetting things and the clumsyness. i am not sure if its the chemo re forgetting things, or just all the extra things to do that being on chemo has given me and trying to fit in my other commitments.  One thing I have found this cycle, is that im much less tolerant, I think Eribulin is affecting my mood.... Time will tell.

 

Ladies, thank you all so much..... Helen, Babsy, FF and Julie D, for your helpful responses to my query.

to be honest, im likely to have one put in...a picc is not really going to be suitable because I use that arm vigorously in excercise, also I want to go back to swimming when. I can. They cant take bp on that arm and its my only one too, and im a bit fed up with getting infections. S**ds law, ill get one with a port!

 

 

 

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I have a PICC line and love it though it has to be flushed once a week but the community nurse comes and takes bloods too and she is lovely. Trouble is I never know when she is coming so have to plan to be in all day, but I just arrange visitors that day so it's fine :-)))

 

Gosh my memory for words is getting worse.. Assuming it's just the chemo brain after 4 months of paclitaxel - does everyone else get that? Can't remember the word I want and keep doing spoonerisms!! Eg I said to my friend yesterday "do you Cancy a Fucca?" Instead of Fancy a Cuppa! Can be quite funny sometimes ;-). Fortunately she's got a good sense of humour.. Sorry to be lower the tone!!

 

Also ultra clumsy too.. Must be the peripheral neuropathy ...

 

helen xxx

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Hi everyone, getting a portecath was the best thing I did. My daughter, a nurse recommended it but my hospital hardly does any for cancer patients. It really did give me freedom. Unfortunately mine got a rare infection, as the skin around the scar tissue ripped as it got thin so I had to have it removed but I had finished chemo and blood transfusions so timing was ok. Funnily enough they can still manage to find one working artery in my arm which wasn't really there before. Perhaps my body had time to heal? Still getting blocks of pain but hate taking painkillers. I've got my bone scan on Monday (5) but don't  get results until 19th!! After the brilliant results last time, 60%+ reduction of cancer in bones I am SO nervous about this time, especially 'cos all of the pains. Going on holiday inbetween scan and results so hopefully will make time go quicker!! All the best to all of you who are poorly, sending loads of hugs. Xxxx 

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 Moijan, I have had my port since March 2006! Mine is in the right side of my upper chest! It does not show with most shirts. It was the best thing I I ever did!  I've never had any problems with it! When you are on an oral chemo they like it to be flushed every 4 to 6 weeks. My oncologist said since mine works so great every 3 months when I come for my check-ups is fine. I watch all these people playing the hunt the vein game just because they don't want a port. I think it's fear of the unknown. My oncologist has had me speak to other patients about it. I've convinced quite a few over the years to go for it! They have all thanked me later. No one complained about getting it. FF

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Helen, glad you got your cold cap well done for sticking to your guns, hope it works well for you. When I  was on chemo with my primary I  didn't bother, thought I  was going through enough without adding a cold head, but we are all different and losing my hair whilst not what I  would choose wasn't a huge issue for me.

 

Sharon, hope you are feeling much better now and good luck tomorrow. Make sure you let them know just how much this one affected you as they may be able to offer something to make the next one easier for you.

 

Moijan, I  have a port, it's a power port so in theory can even be used for contrast scans (though in practice lots of hospitals don't/can't use them for scans). It makes life so much easier! I only have the 'good' arm for them to use and the veins are now pretty non existent and very hard to find one and gain access. The port means I  don't have to go through all that horrible hunt the vein, they can take my bloods and give me my zometa through the port.Even on days when they can't access port first time or if it decides to be temperamental and not give blood, it's a far better experience than hunt the vein, I  wouldn't/couldn't be without my port now.

 

 

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Moijsn no I havnt got a picc or port.my veins are rubbish.but managed docetaxol ok..xsharon
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Hi Helen glad your done and coldcap.well my bloods have always been fine all through all my other chemos..find out tomorrow why I feel like this when I go for no two of cycle.xxsharon
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Hi Sharon, sorry about the tiredness. Eribulin is famous for it! I was warned....and it hit me the day after during the first cycle. Am on 4 th now and feeling much less tired. Erib cuts down both white and red cell counts, can happen suddenly. And the lowest point is often around the 6th day after but sometimes before.

 

The white cells are our immune defence and the red ones carry the oxygen and some nutrients to our tissues.....hence the tiredness.  I think the filgrastin have helped me because both counts are higher than they ever were before starting erib! They teach you how to pop it into your tummy and it doesnt hurt! You just need a reliable fridge to keep it in.

 

Hi Helen, hope the cold cap works for you! You need to have had it every time apparently for it to work.

good luck.

 

huggy thoughts ...im in again for it tomorrow. Have either of you got a picc or port in?

 

Moijanxx

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Sharon
So sorry you are feeling so tired but you have been through so much with the drainage as well ..can they delay Friday til Monday to give you a weekend extra to recover a bit more.
Helen ..glad you got the cold cap ...hope you feel ok over the next few days ..New chemo will take a few days to get used to.
Hugs xxx
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They let me have it in the end and I was happy. Who knows with Eribulin. Sounds like there isn't enough evidence either way on this chemo so it's worth a try if we want to.

Luckily I'm feeling good. Sorry Sharon you are still rough. I've had luckily good bloods all the way on paclitaxel and they reckon I should be fine. If yours were low anyway from last chemo you will perhaps need those injections to up your white blood cells. Xxxx

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Moijan so I take it coldcap didn't work for you..xxi still feel weak.dont know how I'm going to do another Friday.cxsharon
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Ladies ..I think if ( or when) I have to have chemo again I would try cold capping too as its bad enough loosing hair but it takes so long for a fringe to grow afterwards .
Saw a lady in shop today and hers was just growing again but it was all patchy and she wasent very old maybe 30 ish .
But ..it's only.my opinion not advice ladies.
Xxx
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Hi Jeannette, snap! My last scan took ages too,later found out they were teaching!

 

i had all sorts of thoughts in my head till I found out!

 

best wishes

 

moijanxx

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Hi Helen...When I had the cold cap with Eribulin, it had to be on from  half an hour beforehand, during chemo and until  an hour after the infusion finished.......my hospital werent happy to give the cc as they said research showed it didnt work...but as I was so stressed, they did let me have it.

 

when you go, remember to take your headband to protect the skin round the edge and your baby conditioner spray  for them to damp down the hair before putting on the cap.....very good luck with it.

 

Moijanxx

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Good luck Helen..i will try on Friday.but lack of help by that nurse is bad...surely they can contact somewhere .im under Southend university hospital.they are very knowledgeable.but I get feeling some of them think were taking up valuable time when we use the cold cap.fight for it.xxsharonxx..x
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All the best for today x xxx
Carolyn xx
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Sharon - I'm gonna push for cold cap today. Is there any chance you can take pick of chart when next in so I can show them next time? Don't worry if not though. The nurse I spoke to was looking online and saying she'd never given cc with Eribulin so she didn't know timing etc. She was the moody nurse, rest are great so hoping I get a nice one when I go in an hour xx

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Hi Corey Glad you've managed to avoid some of your trips to Exeter but shouldn't someone have sorted that out for you? I went to Plymouth with my grandchildren for school shoes on Friday. They seem to train up a lot of students as shoe fitters to cope with the rush. Hope you're OK x

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Omg ...40 minutes in a scanner sounds horrible ..hope u took some good music with you...
Carolyn xxx
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Hi all, well flipping eck that was noisy! Thought it would only be a 5 minute job but it took around 40! Oh well at least it's all over with now just need results. 

Hope everyone is okay, hugs Janette xxxx 

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Helen Aquarius..they have charts In Chemo ward which tells them times..i dont understand why they're not trying to help you..xxsharon
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Ss tried to pm you but system wont let me.xxsharonx
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Hi Helen I did pm you.xsharonx
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Hi Sharon.. I've PMd you - if you are back on line today or before 11.30 am tomorrow can you take a look :-)) thanks Helen xx

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Sharon, glad to hear you are improving,,i'm sure it will continue.

Corey..glad to hear you good news on 'both fronts'.

Jeanette, good luck with Mir...as you say that's the easy bit, but we,'ll all be 'holding your hand'.

Love to all.x

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Good luck Janette! 

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Yes Barton ..missing him today ..hence keeping busy but lucky to have him school holidays ..he's grown into a lovely twelve year old young man.
Just changed all bedding and shampooed bedroom carpets ..yay !!
Bar of choc with my name on it waiting.
Carolyn xxx
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Carolyn, commiserating with you for "loss" of grandson, but hope you enjoy your nice lunch! Not much compensation, I know, but the time until half term will go quite quickly.

 

Hugs. Barton.x

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Hello Corey, thats really good news! So much easier than travelling all that way otherwise! I do hope the se's are mild or non-existant.

 

Hugs. Barton.x

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Hiya Corey
Nice to hear from you ..Glad things moved !! That's good about the picc line being done locally rather than Exeter.
Yes ..we had my grandson for six weeks summer hols ..he went back yesterday so he has a few days to climatize for school again.
Bought his uniform/ shoes and the twins stuff ..found it hard to get as sold out in aldi, Sainsburys and Tesco. Ended up in matalan which was good.
House feels empty now so we have been washing, cleaning etc etc. Going out tomorrow for the day and maybe a nice pub lunch.
Hope u feel ok now after getting the chemo under your belt.
Carolyn xxx
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Hi every one well the senokot worked but I think I shall not take one tonight as things are starting to go too well if you get me . After many phone calls I managed to get hold of the district nurse and I'm getting my picc line flushed 4 miles away in holsworthy . Very happy as thus means I don't have to endure the 1hr plus trip to Exeter and I can be home in 1/2 hr . Lovely weather . I have to get organised and get kids school shoes and running out of time. they go back on the 5 th sept where does the time go .
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Janette, good luck with MRI today, will be holding your hand. Have you had an MRI before? They are noisy! Hope the results come through quickly so you don't have too many anxious days. xx

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Jeanette
All the best for the scan ..not had a mri before so I don't know what its like.
I don't get tumour markers or had a bone biopsy either so lagging behind you!!
Hugs xxxx