Worried about poss line fitted

[LindaH]

Hi,

It's getting increasingly difficult for the medical team in the Oncology department to find a vein in my hand to insert the cannula into the back of my hand. At the moment I go for treatment two consecutive Friday's then fourteen days off.

My veins are not particularly good as I invariably need to run my hand under warm water before they are able to encourage the vein to the surface, coupled with the fact they are only able to use one hand because of lymph nodes removed when I had breast cancer in 2007.

I'm now worried they will want to insert a line under the skin in my shoulder. I don't like the sound of it at all.

Does anyone have experience of this line and could I refuse to have one inserted?

Thanks

Linda

[Cathy]

Hi Linda

Is that a Picc line? My partner has one of these. It' has been inserted into a vein in his upper arm and follows the vein to a cavity near his heart.

It sounds scary but wasn't painful to have fitted and the benefit is that firstly you won't have the palaver you are currently having trying to find a vein. It also stops the vein getting tougher over time (which they can do as a result of the drugs) which can be uncomfortable. They can also take blood from it (fewer injections) tho in Jonathan's case the hospital chose not to use the Picc line to do this.

The downside it that the line needs to be flushed out weekly (which the district nurse has thought me to do - its very easy although a bit of a fiddle to do to yourself) and makes showing or bathing a little more awkward. We are looking at getting a Picc line cover (which looks like a sleeve) that you can buy online so that he can shower and hopefully even be able to go swimming.

Perhaps someone on here might have more information about those.

Our biggest issue with the arm the line is in is that he developed a blood clot in the forearm but I think this was coincidental. Everything has settled down now and Jonathan is managing with the line really well.

I'm sure you could refuse to have the line fitted but you'd need to weigh that up against the current difficulty you are having. Your medical team ought to be able to discuss the process with you and your worries.

Hope this is helpful but please do ask if there is anything more you'd like to know?

Cathy x

[J_T]

I'm no expert but I think the one in the chest is a Hickman line? I think similar to a PICC line which Ray also has. He's had no problems with the line so far. No problem, pain or discomfort having it fitted and you can't feel it once its in either.

Cathy, Ray has waterproof 'tape' put over his line when the pump's not used and they said he can shower safely with just that.

Julia

[Cathy]

Hi Julia

Thanks. Jonathan uses a "tegaderm" dressing which covers everything bar the end oif the line itsefl. Is that what Ray's tape covers as well?

Cathy x

[J_T]

I think its called Flexigrid. Peel off strips, they use two, then a tubular bandage short of thing just to keep it tidy.

http://www.smith-nephew.com/professional/products/all-products/opsite-flexigrid/

[Cathy]

Thanks Julia

How's Ray been today? Feeling better I hope?

Jonathan has taken extra steroid pills today which have helped stave off a bit his usual post chemo dip that happens on Sunday after Weds chemo so we'll have to experiment and see what works best.

His skin is definitely more sun sensitive tho. One of the drugs in FOLFIRONOX does this (fluoruoracil). He normally tams easily but he is looking distinctly pink now after being outside today and not even for that long. Hmmmm. It's certainly a steep learning curve!

Cathy x

Edited April 22, 2013 by Cathy

[J_T]

Hi Cathy, still very nauseous. I rang the chemo helpline and they got a doctor out who gave him an injection and he feels a bit better. Had a mocha Fortisip and promptly fell asleep! Not sure how long the injection lasts but he'll be hacked off if he feels rubbish again tomorrow!

Has Jonathan got steroids to take as and when? Ray got 12 dexamethasone only. Four to be taken every morning for 3 days.

Sorry to hear about his redness, getting Ray outside is a no no at the moment!

[Cathy]

Hi Julia

I saw your other post as well and I am really sorry to hear that Ray is still feeling poorly.

When I get home I will check the names of the drugs he has and let you know but he takes anti sickness pills 3 times a day for 3-4 days post chemo and steroids twice a day on the Friday and Saturday after Wednesday's chemo. As coming off them gives him a big dip he is experimenting this time with coming off them more slowly which so far has stopped his usual dip he gets on Sunday afternoon.

The support on this site may be able to give you some good advice on what you can do to mitigate his nausea.

Thinking of you all

Cathy x

[LindaH]

Thanks Cathy and Julia, If I have to go along with having a line inserted, it doesn't sound too bad now you have told me what is involved, thank you.

Just listening to your line of enquiry about anti-sickness, I take Cyclizine 50mg 3 times a day. I take it for at least 3 days regularly after my chemo sessions, because this is how my oncologist told me it would work better for me. I was just taking it when and if I felt sick, but that isn't the correct way, it has to be taken regular. It's quite safe as it is even given to pregnant women. Hope this may help you.

Thanks again

Linda

[J_T]

Thanks for that info Linda. Ray takes Meto something or other. Getting him to take any tablets at the moment is a struggle so its all a bit ad hoc which is not ideal I know.

Please don't worry about a PICC line, Ray said is was no bother at all

[PCUK Nurse Jeni]

Linda,

Is it a Picc line for sure, or something else? The one which goes under the skin is different, so let me know, and I can explain.

KR,

Jeni.

[karen17]

Hi Cathy,

Could you let me know which site you saw a Picc cover please. My husband is currently using a heavy plastic sock thing which my mum was prescribed when she had a leg ulcer. It does the job but we are going to Spain soon and if there's something he could swim with that would be fantastic. Mind you after seeing the comments about sun sensitivity I do wonder what colour he will come back with!! If Jenni or Dianne read this perhaps you could advise if he needs added protection etc please

Karen xx

[Cathy]

Hi there Karen

Amazon! Try the link below. We are talking about getting one ourselves. I'm not sure how good they are but I'd like to buy one as Jonathan loves swimming.

http://www.amazon.co.uk/s/ref=nb_sb_ss_i_1_10?url=search-alias%3Daps&field-keywords=picc%20line%20covers&sprefix=picc+line+%2Caps%2C521#/ref=sr_kk_1?rh=i%3Aaps%2Ck%3Apicc+line+protector&keywords=picc+line+protector&ie=UTF8&qid=1366650131

Take care in the sun. I think your partner is on the same medication as mine (FOLFIRONOX) which can give you sun sensitivity. Jonathan was looking a bit pink last night!

Kind regards

Cathy xx

[Cathy]

Hmmmm.

I'm not sure that link works. If it doesn't, go to Amazon.co.uk and search on "picc line protectors" and the same page should come up.

Cathy xx

[karen17]

Thanks Cathy will look at those. Mind you I will probably then worry in case water does get in or the line becomes infected and we are out of the country! Why is there so much to worry about nowadays and why is it me that does the worrying and he will no doubt happily dive in the pool!!!

Had to have a little giggle at the thought of Bob coming back from holidays rather well cooked. For the past 25 years it's been me who's pink and peeling and him like a bronzed god! Have to retain a sense of humour I think or will go seriously crazy xx

[Cathy]

LOL!

Maybe buy and try over here first? If nothing else it will give an interesting "tan" line after a bit of sun.

In all seriousness, he'll need to make sure he covers up well, wears decent SP rated lotion and puts lots on. An anathema to most men I think but I think it will be necessary (and a hat).

Lots of love

Cathy xx

[J_T]

yes, definitely NO mankinis!

[Cathy]

well, now you're just spoiling things.....

Cathy xx

[karen17]

Cathy and Julia I have just read your posts!!! Mankinis indeed now that would be a sight for sore eyes lol. The poor subject of our mirth is happily watching some football match, pint of Tetleys in hand completly unaware of me chuckling away in the background

Thank you for cheering up my day ladies xxx

[Cathy]

Hi Karen

Just a quick query actually (thinking about mankinis and sun), if you've got travel insurance, who did you go with? I ask as I booked a holiday abroad for us months ago (pre diagnosis).. which we are playing by ear for now but the oncoplogist is making positive noises about us going.

Cathy xx

[PCUK Nurse Dianne]

HI Ladies,

Nice supportive banter amongst yourselves which is so great to see. It is great that you are all able to support each other and share ideas. About the sun sensitivity issue, firstly it is great that we now have to worry about this after such a long winter! Certainly a high factor sun screen is essential, patients are more sensitive to the sun (think you probably all realise that now with the most recent warm spell) and also because the chemotherapy affects the immune system, you don't need to add in the burden of developing skin cancers from excessive sun exposure. Certainly I would think greater than Factor 30, however I would suggest the highest you can access as can be quite hot in Spain. Also most medical advice when talking about sun exposure is also to avoid direct sun contact in the hottest part of the day (ie between 10 - 2pm usually), so if outside then, certainly be in some shade, or under an umbrella. Hope that helps.

Best wishes,

Dianne

Support Team

[PCUK Nurse Jeni]

Hi All, Agree with Di - sunblock if possible - factor 50 or more if on 5FU based drugs.

Also, see the blog from the last time we had decent sun in the UK!!

http://www.pancreaticcancer.org.uk/about-us/blog/archive/2012/july/the-sun-has-got-his-hat-on

Jeni.

[KATB]

Don't oncology patients get free prescriptions? My son has vitiligo and my husband has an area where skin was grafted on his shoulder and they get Ultrasun on prescription from the GP - it costs over £20 to buy so it might be worth asking about that?

Here's a link to the products but you can ask your GP to prescribe it. I hope it's OK to link to products?

http://www.ultrasun.co.uk/products

[KATB]

The other thing you can do is wear a UV top - my husband always wears one now and I always put the kids in them too. So much easier than putting sunscreen over the whole body.

Like this:

http://www.boardridersguide.com/o-neill-skins-rash-tee-uv-top-3920

[Cathy]

Hi

Thanks for sharing those. We'll definitely ask the doctor.

My partner tends to lie in so much on holiday he tends to miss the hottest part of the day anyway, emerging blinking at the pool when everyone else is starting to pack up!

Saves a bit on sunscreen I guess...

Cathy xx