Went to sse my GP and she confirmed what I'd suspected - I do have a couple of collapsed veins...
She was unable to tell me whether the ongoing aches will eventually go. I tracked down my Breast Care Nurse and she is going to approach a nurse who is an intravenous specialist... I WANT ANSWERS!!!
My shoulder is slightly improved and I am trying to regain full flexibility. My thinking is this - the 2 veins used for the 2 pre PICC chemo sessions developed phlebitis and when the hardening broke down, they collapsed.
Awareness of potential vein damage needs to be promoted.
I had PICC line insertion after 1st chemo (awaiting 3rd FEC next week) because my veins are so hard to find. The chemo nurses at my hosp seem to actively encourage it because it is so much easier to cope with the chemo and the blood tests. The insertion took a while but was painless and I would definitely recommend it, especially if, like me, you need intraveinous Herceptin for a year. I've had probs with local GP practise and district nurses about line care which has to be done weekly (they all refused because they are not qualified), but the hospital is training my husband to do it! It's very straightforward and only needs doing once a week, so they say a friend or relative can do it. The hosp clinic has shown us twice and this afternoon my husband is going to do it himself with a nurse watching. I would make the same decision every time about a PICC line, I just can't believe how different hospitals can be i.e some actively encouraging it and others making it a battle to get it; it makes life easier for the chemo nurses as well as the patient. It's bad enough having chemo s.e's without the pain of needles too - they just plug into my little 'tap' and away we go! Good luck, I hope you get the treatment you want.
I really think that the physical impact of side effects are not taken seriously enough. All the Drs ever bang on about is hair loss, which although distressing, ISN'T PAINFUL!!!!
Because inserting a PICC line is time consuming, it's something hospitals would rather not have to do. Also having the dressing changed and line flushed by a district nurse weekly puts further strains on resources. A lot of decissions will be made based on finances. So it's squeaky wheels like myself who get the oil!
I am now getting physiotherapy for my shoulder - because, like with the PICC insertion, I insisted.
It is very hard to fight our corner when we feel vulnerable and I know I feel I have to be a 'good' patient.
You may well have a few decent veins left - but you'll be needing them (especially as your other arm is off limits), for blood tests etc in the future. Don't wait till your next chemo day. Get on to them asap. Don't be fobbed off.
One thing I've found that relieves the pain is a 'lavender and wheat bag' that is heated in the microwave.
On the up side - my veins are slowly improving. Origionally they could be felt under the skin - like rods of bamboo. They have softened considerably.
Yeah, me too! And yes, was told to take ibuprofen and get on with it! The best advice I have had was to regularly put on cold packs. This is a bore, and I initially could not be bothered, but it had made a HUGE difference to me. I could not stretch and twist my arm at all, and it has got an awful lot better. On the down side, it is obviously still there, and I am 6 weeks post chemo, but have still got herceptin for the rest of the year, so my veins are still being traumatised!
Am getting the feeling i am being fobbed off too. For Fec 1,2 and 3 they have used three different veins. After i complained of a sore arm after number 2 my chemo nurse said she would put an extra bag of saline thru after number 3 which she did, however this one is much worse when i spoke to her on Friday she said 'on your next one i will put an extra bag of saline thru' i said ' you already did!' to which i got the reply...'oh'. I had spoken to them about a line but it has not been mentioned since.
Anyway before my next one i have a meeting with the onc so will raise this with him.
I see the lymphodema nurse on Thurs about suspect swelling on my other arm and am dreading having two bad arms!!! Am hoping its just my imagination !
I did ask about having a line. I was admitted with neutropenic sepsis and they had problems cannulating me. When they got in, my vein collapsed. I think it was about 8/10 times that they attempted to cannulate over 3 days.
My chemo nurse said I have enough potential sites and do not need a line. I think I might have been fobbed off and am definitely going to discuss this with Onc before next chemo.
I guess it was duff advice with the 6 weeks too!
In the very olden days when I was a student nurse we used to use lead and opium ointment as poultices. I would experiment with heat/cold packs and see which feels best. I really feel for you ladies, I was terrified of this Happening to me, I insisted on a line pre treatment.
I got phebitis after no 2 and it has got slightly worse over 3 and 4 I was told off my onco that it can take up to 2 years for arm to get back to normal, I too looked on the net for answers and came up with zero results, I have been using Elemis Exotic Lime and Ginger body lotion and this has been helping and also keeping my arm warm.
Oh the joys of chemo!
As Lisa already knows i have it too!!! Mine is visible to the eye and tracks all the way up my arm. Had to get it checked out to see that there was no infection....there wasnt'.
I have to admit it was not something i was made aware of before chemo started, and have suffered very lightly from other side affects, however the pain from this is excruciating. My doctor tooo said it takes months to get rid of.
Am now dreading number 4 😞
Lots of love Sal x
Totally agree with the 6 weeks bit, i was lead to believe that it will pretty much always be there as veins struggle to repair themselves & its the e bit of the fec that does the damage.xx
Lisa - please think about having a PICC line! Sarah is right - it'll most likely get worse. It's a bit freaky having the line put in but made all chemo sessions thereafter soooooo much easier. I did have to kick up a bit of a fuss, but I'm glad I insisted as having met women with collapsed veins etc...
Back in November I couldn't trust myself to pick up a cup of tea. Now I can, but fine jobs like sewing, signing my name so it actually looks like my signature etc is still impossible.
Sarah - be warned re my shoulder... because we can't relax our arm by our side, the constant 'holding' will cause damage. I am doing exercises to re-educate the muscles, but it's incredibly painful.
The drs and nurses have been bloody useless... painkillers...
Don't apologise for not having answers ladies! Let's see if we can get some though!
Just go careful with other veins as on fec 3 they used another vein & the same thing has happened so i now have pain from wrist to just past elbow hence why am now having a picc line put in, my Onc said from her experience if it happens in 1 vein the rest will do the same & as we are already down to one arm we need to treat it respectfully as we have many Years ahead of us when veins may be required for blood tests etc.
Me too, I've had FEC2 and my arms getting more and more painful by the day. I used some ibuprofen gel on it last night which helped a little. I woke up this morning, the gel had dried and I had forgotten that I put the gel on it. I thought my skin was peeling off! I haven't been given any advice on how to cope with it. My chemo nurse said it will take up to 6 weeks to go and they will use other veins for the next few chemos to give the affected vein a break. I keep trying to stretch my arm and massage it but that doesn't seem to help!
Sorry I don't have much to share other than 'I know how you feel' and would welcome any tips on how to deal witth this.
was wanting to ask the same question, mine too went rock hard after chemo 2 & am now having picc line put in for remaining 3, i cant even stretch mine out to pick up mug of tea, so very painful & like you have been given the name for it but no advice on how to deal with it etc, i truly hope it does go over time.
Following my 2nd chemo my vein became rock hard and I had a PICC line for the last 4 doses. The rigidity meant that I could not fully flex my arm and as a consequence I have been 'carrying' my arm awkwardly. 5 months of this and my shoulder as suffering terribly.
The rigidity has improved a little, but I still can't extend my arm fully.
The nurses and drs have said it's phlebitits and that it will go away of it's own accord. I'm taking pain killers/ anti inflammatories day and night and doing as much exercise as pain permits.
I've searched online repeatedly and found nothing helpful at all - so please please please if you have anything to share let me know!