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Vein tethering/vein sclerosis with chemo?

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Re: Vein tethering/vein sclerosis with chemo?

This site is my best friend right now! Since my 2nd FEC 2 weeks ago the pain in my arm has been unbearable. I rang the chemo unit and asked the Dr they put me through to if I could have a port fitted. I was told that by the time it took for an available appointment, my chemo would be over... She offered a PICC, so I accepted, but am now feeling very frustrated. Why wasn't I offered the port option in the first place? I've told them repeatedly that my veins are always problematic... Every time I've had blood taken or a line put in there's been at least 2 attempts. I am a single mother caring for a disabled child and I am really struggling to cope with all this.

Steph10
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Re: Vein tethering/vein sclerosis with chemo?

Bumping this up as it's been of interest to me and maybe now to other newcomers.

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Re: Vein tethering/vein sclerosis with chemo?

Hi All

Krissy - pain you are getting is probably chemo related and if you are someone who has 'lady veins' (my chemo murses terms for those of us who do not know we have these!) no sooner the chemo is adminstered your veins gor into 'spasm', harden and as a result tighten up. It is worth calling your chemo unit and nurse specialist to let them know what you are experiencing though in case of leakage resulting in extravasation whiche can be nasty but is rare and is monitored by teh nurses as they give us the chemo. I have suffered with recurrent bouts of thrombophlebitis since I had surgery prior to the chemo - your GP or chemo team can examine you and let you know if this is also happening and treat it as required.

Lillyloo - having had them try to give me a PICC line it really isnt too bad an experience - just a little 'nic' in the arm although you will have a local anesthetic to numb it and as they thread the guidewire, I could feel it at certain points but it was not horrible or painful - just a shame they could not get the thing in really but my veins are so knackered now even thr guidewire could not pass through them. I am sure you will be fine and it will make everything so much easier for you.

Hope your next chemo's go well ladies

Leigh x

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Re: Vein tethering/vein sclerosis with chemo?

hi all

due to have picc line fitted before next FEC to make things easier, bit worried but hoping it all goes well,three doses to go hoping this will make it more comfortable....squirmed all the way through last dose, knees up to my chin(didnt think i could still do that)lol
xx

katinthemiddle
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi all

I'm glad I found this thread. I've been worrying about a sensation in my right arm where I had FEC injected. I had my second one last Wednesday and have noticed today that my arm felt sore and heavy and when I felt around the area of the injection, the vein feels really hard and swollen. Is this normal? I'm not sure if its dangerous or whether I'm supposed to do something as this wasn't mentioned to me.

I look forward to your advice

Thanks again

Love

Krissy xxx

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Re: Vein tethering/vein sclerosis with chemo?

Hi all

Thought I'd update - after the several failed attempts for 4th FEC and the decision made to put PICC line in - guess what... couldn't find a vein!!!!! Ended up having to have FEC in right arm - had lymph nodes removed - but I have to say it has not caused me a problem and doesn't ache at all - unlike left arm which looks like a battle zone!!!

But as a result of my veins or complete lack of them, the chemo team have decided they will attempt number 5 on the 11th March in the right arm again and then will call it a day and I will move onto Radiotherapy and Tamoxifen. I can't tell you what a relief this news is!!!! My left arm despite all the current pain, I think, is actually enjoying its hiatus at the moment!!:)

I know there are issues re. using the arm where nodes have been removed but my chemo nurse actually made a very significant point in that if we were to be involved in a car accident and required cannulation at the scene by a Paramedic, the Paramedic would not be asking us which arm they could use, they just whack you with a needle and although for us bc girls there is the risk of lymphodema and infection as a result of node removal, when needs must ( as in chemo) the arm will and can be used to prevent delay in treatment.

And it is the Epirubicin that does the damage to veins, so anyone about to embark on chemo with Epi - if you are offered a line before your chemo starts - have it ladies, there is enough to deal with during this treatment without needless pain caused by the Epirubicin 🙂

xx

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Re: Vein tethering/vein sclerosis with chemo?

Hello, everyone, I have Grad-two BC with 3/10 notes involved and on Epi-CMF regime (7-month ), and just finished the 4 cycles of Epi. I was booked for the Centre-line fitting before my first Epi, but with 11 weeks delayed by the hospital (I got a appointment next week after my 4-Epi cycles) my Chemo-nurse agreed that I do not need a centre-line anymore as CMF does not damage veins. The first vein used in my arm now is hard but the others are all OK, and I believe that this because of the Red-solution(Epi) finished at the near end of the Saline solution for the first one and there was no much saline solution left to flash EPi out of the vein and it remained in the vein to damage it. From the second Chemo, there was more than 300 ml Saline solution left to flash the Red staff out to leave my vein less damaged. I would like to suggest that if you have not got a special Line fitted in, it would be better ask the chemo-nurse to flash your vein with >300ml saline solution after EPi in.

Take care.

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Re: Vein tethering/vein sclerosis with chemo?

My veins have never really reovered so all needles now go into my feet at my request and although people thought it was odd and resisted I found that explaining the pain and time wasting that they soon came round and used my feet and it enevr feels so aore after as it did with my arm - worht a try I'd say. Oldie with good feet veins!

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Re: Vein tethering/vein sclerosis with chemo?

hi

I am 16 months post chemo and the veins in my arm are now starting to soften - they don't 'pull' as they used to so am hoping that eventually they may be useful as veins again!

Long long journey but still going.....

Luck to all x

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Re: Vein tethering/vein sclerosis with chemo?

Hello all

Had a rotten day today - should have had 4th FEC but after numerous attempts t find a vien I could not have it and am now having a PICC line put in tomorrow and then chemo straight after. Spent most of this afternoon in tears and just so fed up with it all. They can only use left arm as had lymph nodes removed from right and those veins are just pulsing!!! I feel such a failure and am really not looking forward to PICC line - got a real hang up about it and I dont know why as I know it will make everything so much easier. Has anyone else felt like this??

Leigh xxx

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Re: Vein tethering/vein sclerosis with chemo?

Hi redcell
thanks for the update - I have finsihed Epi but start Tax tomorrow. I saw the dr at the hosp yesterday and showed her my arm. She dosn't appear to like lines so is still going to try putting a cannula in my "veined" arm but will use the surgical arm if has too much trouble. She did say it should get better but to help it I have massage in E45 cream on a regular basis and do some gentle stretching exercises.
Hopefully tomorrow won't be too bad!
Maggie

redcell
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Re: Vein tethering/vein sclerosis with chemo?

hello all.... been a while since i've been on here so i thought i'd update my arm situation...

i finished 6 x FEC in august last year (diag IDC, grade 3, 2.6cm, age 33). all thro chemo i had pain and tightening of the veins in my chemo arm, so sore i could not handle and pressure or touch on it at all. i also couldn't straighten my arm. veins were also very hard (felt like scar tissue!) i did'nt have a 'leak' of the chemo, just irritation from the FEC!

well now i'm 5 months after finishing and my movement in my arm is back to normal and i have no pain. i still have slight indentations/tethering of the veins, but much less than before. the veins also feel 'harder' and like scar tissue, but much, much better...
i'm posting this because at the time i was worried the damage would be permanent... i don't think they will ever be as they were, but the recovery so far has been amazing.

good luck and love to all. xxx

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Re: Vein tethering/vein sclerosis with chemo?

i thought it was only me! Ive had vein pain since the beginning with the fec. Done 3, no 4 is next week,

i always have a hot wheat pad from the hospital when i have the fec done. Was told to use a wheat pad at home when it hurts. And to keep the arm moving a lot. So i do the same exercises i was given after the WLE and SNB
eva

Lulu34
Member

Re: Vein tethering/vein sclerosis with chemo?

hi there girls

its good if your unit is willing to put in picc, hickman or portacath.... my unit refused despite having bilateral bc so had to use one of my affected arms and went with the right side as it wasnt the most recent surgery side, however within 10 days i had pain and problems in my veins.... they changed to left side after that but now have probs with both sides even though last chemo was on 19th nov and only 4 epis as was on e-cmf

i had bloods taken today failed attempt from left and managed on right but was agony on both sides.... right side only had chemo once and that was 25th june but still have prolonged problems... although i think im the exception not the rule.... but if your right handed and they wanna slap it in that side i would say try and hold out for a different method if your worried.... i wish i had been more adamant about it.... but i think they just thought i was a know-it-all nurse.

anyway i have found brufen gel quite helpful.

L xx

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Re: Vein tethering/vein sclerosis with chemo?

i too am having epi and had a canula put n on the day,didnt feel a thing when the epi was syringed in on my first chemo .the second was so different,it was a nurse who was retraining and she hurt me when the canula went in and i could feel the epi going in through my veins,it was so painful.i now have a knot of veins in my arm and its hurts to press it or lift it.i have been back to the hospital and they told me to mention it next week at my third session.i was blaming the nurse for going to deep into my arm and have told myself she is going nowhere near me next week,i just hope this isnt going to be the way its going to be.although i have noted that tax is kinder to the veins which i switch to for my next three sessions jackie xxxx

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Re: Vein tethering/vein sclerosis with chemo?

Hi All, I too have had vein ache following 3 x FEC and I particularly notice it after a bath - must be the blood flow. I have found that putting some arnica cream on the vein seems to sooth them particular after the treatment.

I get the impression that moving to Tax is not so hard on the veins - is this true?

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Re: Vein tethering/vein sclerosis with chemo?

Liz
thanks for that - it certainly seems like a better option for me than the painful process of 2 nurses having 7 goes between them just to get blood!
Maggie

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Re: Vein tethering/vein sclerosis with chemo?

Hi Maggie,
I had a Hickman line fitted before my chemo started (3FEC/3Tax). It was a relatively painless operation to insert itand I was well sedated for the procedure and had no discomfort from the line. I had my first chemo 30 minutes after having the line inserted.
It was flushed weekly by the Health Visitor and any bloods needed pre chemo were taken from it as required with no problems.
It's important you do your best to keep it clean. It's basic hygeine really and the information from the hospital was very comprehensive.
When showering don't have the shower jet aimed at it.
Don't change cat litter, bird cages or babies!
Common sense stuff really as by having a lHickman ine inserted there is a direct pathway for anything nasty to get straight into your bloodstream!
The hospital warned me that lines could get infected but couldn't give me any percentage figures.
I made the decision to have it done after talking to a family friend who is a nurse and I never regretted that decision.
The only downside was that I couldn't go swimming.
Hope this helps.
Liz

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Re: Vein tethering/vein sclerosis with chemo?

Hi Ladies
just looking for a bit of info on the various pluses and minuses of PICC v Hickman v portacath. I had my 3rd FEC last week and my veins are in a terrible state. The hosp don't want to use my surgical arm due to lymph node removal so am thinking about alternatives for my Tax/Herceptin treatments.
I've heard that one of the above requires daily flushing - is this true and is it a hosp job? Any info gratefully rec'd
Maggie

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Re: Vein tethering/vein sclerosis with chemo?

I had a portacath inserted before my second chemo as after 9 attempts they could not get into a vein.

I find this no problem. It is inserted under the skin with local anasthetic and there is a light bump where it is located, which is the top right hand side of my chest up near the shoulder, and is not visible, unless I wear a spagetti strap top. This means that you have no dangling tubes etc from you skin. It can be used 3000 times before it needs to be replaced. I'm hoping not to get to that many!! My onc said he finds problems with central lines so this is why I had this done.

The vein in the arm where they tried so may times is now hard but I'm hoping it will improve post chemo.

I hope you find a solution. Check out with onc about the mark on your arm.

All the best, Macc

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Re: Vein tethering/vein sclerosis with chemo?

Hi all,

I am so glad I've found this thread. I've been looking on all the cancer websites to see if there is any mention of this problem in the list of SE. But as yet haven't been able to find anything out.

I suffered a sore forarm after my first FEC but it eased off before I saw the oncol prior to the second cycle, so, I forgot to mention it when I saw him. But as the chemo nurse was putting the drugs in I remembered, so I told her. She seemed suprised that I had felt discomfort after only one cycle, and told me to be sure to mention it to the oncol next time if it happened again, as my dose might need to be reduced.

Well, my arm has been much worse this time and this is only the second of six. Is reducing the dose the only option? The thing is, if I'm going through this I want it to be as effective as possible!
I too will be having rads and herceptin later, and am keen not to use my other arm as I've had 4 nodes removed.

The other thing is that a few days following the chemo a nasty red/brown mark appeared at the site of the cannula although it wasn't painful but it took about a week to go, is this leakage?

Try to keep warm and eat lots of naughty things!

Love Rose X

Feemac
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Re: Vein tethering/vein sclerosis with chemo?

just bumping up incase this helps

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Re: Vein tethering/vein sclerosis with chemo?

Hi, i have mentioned before to the nurses and they have said best leave it in, i am so grateful that it has saved my veins but i just cant wait to get it out, its coming out on my last chemo whatever. If they want a line in then they can put a portacath in when they operate..... and i am out for the count lol.

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Re: Vein tethering/vein sclerosis with chemo?

hello
Chemo nurse also told me Epi was the culprit in my vein probs. They call it 'the red stuff' and reckon its notorious!

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Re: Vein tethering/vein sclerosis with chemo?

I asked one of my chemo nurses about this and she advised heat poltices or alternating between heat and cold compresses. So far I've tried hot water bottles and it has helped whilst they're on but not after. I'll let you know how it goes! Chemo Nurse said Epirubicin does cause this over all other chemos...

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Re: Vein tethering/vein sclerosis with chemo?

Reading through this thread, it does seem that Epirubicin has been particularly hard on the veins... and for me too! Although it's 2 years since I finished the Epi part of my chemo, I still have real problems finding a vein, if they need to take blood (or when I had to be injected for a bone scan a couple of months ago). I don't have any pain or discomfort with them, it's just that they've gone into hiding!! I don't blame them 🙂

Anyway, someone recommended that I take a couple of herbal tinctures... Horse chestnut and also bilberry, which is evidently supposed to help with veins. I thought it was worth a try, because it's all good stuff - no nasties... I've only been taking them (c 10 drops in water, twice a day) for 6 weeks or so, so time will tell...

AliS

Feemac
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi Anna,

I had 3 Tax and herceptin together on the same day and my veins were fine...It was when I started FEC the trouble started.. If you feel you would like it out then mention it to them, although they might be reluctant to remove it incase you have any trouble. Tax doesn't give trouble as such.. Hope this helps?

Regards
Fions xx

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Re: Vein tethering/vein sclerosis with chemo?

hi, i was just hoping for some advice. I had a picc line fitted after my first dose of EC and so have had 3 more EC then 1 tax through it. I still have 3 tax left to go. As grateful as i am that the picc line has saved my veins, i was wondering how harmful to veins the tax is? I am tempted to ask if my line can come out after my next tax, leaving 2 more to go through my veins. Has anyone had problems with tax on the veins?
thanks
anna

redpark
Member

Re: Vein tethering/vein sclerosis with chemo?

I am so glad to find this thread. I have had pain in the arm they gave me chemo since the last dose (2nd FEC). i only have one more FEC before 3 Tax so hopfully it won't get much worse. The only thing is that I also have cording in my other arm right across the palm to my index finger so I am not much use with either arm at the moment!1

Guest user
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Re: Vein tethering/vein sclerosis with chemo?

thanks Nicky!

Guest user
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Re: Vein tethering/vein sclerosis with chemo?

Bumping this up

Feemac
Member

Re: Vein tethering/vein sclerosis with chemo?

found it crispy and bumped it up...

I'm now getting physio as arm is so bad.. The physiotherapist stretches the vein with twisting and pulling. I have only had one session.. I'm hoping it works.

Best wishes
Fiona xxx

crispy
Member

Re: Vein tethering/vein sclerosis with chemo?

bumping this up as promised. Fee can you remember the other thread . Crispy

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Re: Vein tethering/vein sclerosis with chemo?

Hi everyone,

Just my experience as well. My veins are still hardened after Epi nearly 2 years ago and I was told that they might never be normal again but they cause me no discomfort at all now. As previously mentioned warmth helped me.

Fiona, Herceptin is much gentler on the veins than chemo, I managed 18 cycles with no bother.

Take care

Veggie

Lulu34
Member

Re: Vein tethering/vein sclerosis with chemo?

hi fiona

my veins are still crappola from the epirubicin but only have 1 more lot to go... they did say they would put a hickman line in if i wanted before the last one but would have delayed the chemo so decided just to go ahead with it.

the brufen gel doesnt seem to make much difference but keep stretching and its very painful.... now as i had 1 epi in the right and 2 in the left both my arms are crap and really undecided whether to get the central line for the last epi and the 4 cmf... not sure how irritating cmf is likely to be.... but im really thinking i might go for it before im completely incapacitated.

Lulu x

Feemac
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi,

Thanks Starfish, I think really I'm in the same boat as you. I've had 3 Tax and then 3 Fec but it's only Been since the Fec that my veins have been bad. I'm seeing my Onc tomorrow and I'll see what he says. I'm thinking maybe it's better to have a line in now than have my veins completely trashed.

Hugs
Fiona x

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Re: Vein tethering/vein sclerosis with chemo?

Just to say my veins are now terrible. That is after 4 FEC & Tax and 14 Herceptin. I have now had to come to terms with have a PICC line fitted for the remaining 4 herceptin after a failed attempt to find a vein today and wasting the herceptin made up for me. I have comtemplated not having the rest having previously been told it only made a 7% difference for me. But I feel guilty because of those ladies who fought to get it approved and the many other people with illnesses for which there are no treatments. I have been told the veins will not recover. But I see many people at the hospital with lines although there are risks. Good luck.

Feemac
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi,

Just wanted to ask if any of the ladies on this site who has had trouble with their arms have gone on to complete the course of herceptin without having a line put in. My arm is bad after 3 FEC, but I have 15 herceptin to go and am very worried.

Many thanks

Fiona xxxx

Feemac
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi All,

Thanks Crispy for bumping this thread up. I will be giving all the physio exercises a go. I will also be asking for a physio referal. I still have one more FEC to go on Tues so I'm hoping it gets no worse. I am a hairdresser so the last thing I need is problems with my arms..!!

Best Wishes

Fiona xxx

elinda45
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Re: Vein tethering/vein sclerosis with chemo?

I had a portacath fitted on Thursday due to all the problems I'd had following FEC. It's taken nearly 4 months for my veins in my right arm to feel okay again after only having 2 lots of FEC through them although I did get multiple blood clots as well. I'm not even allowed to have general anaesthetic through arms and had to have it in my foot which was b***dy painful!

Has anyone else had a portacatch? It's been very sore and painful since insertion with some sharp pains - is that normal?

elinda x

ajaytee
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi
I have been following these threads on vein problems with interest as my "chemo" arm (my right arm that I use for everything)was becoming more painful with each FEC treatment. It started with just my hand but then spread up the forearm to the elbow and was hurting all the time. Last week I had my first Taxotere - went in OK- and my arm is no worse, maybe better (or maybe that I am more concerned with all the other side effects I'm getting) so perhaps it is the epirubicin that is the villain.

I'm really grateful that others have posted about their vein problems or I should have worried it was just me. Now I feel I have some reassurrance it is yet another of those things that happen and just have to be patient for the pain to wear off.

Thanks
Joss

crispy
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Re: Vein tethering/vein sclerosis with chemo?

Bumping this up

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Re: Vein tethering/vein sclerosis with chemo?

Hi ladies,
Well was in today and having my usual post chemo sleeplessness, so thought I would catch up with posts.
Was concerned today that they would pressurise me into using other arm but with the slight improvement with the ibuprofen they thought it was ok to carry on with the original arm. Had a little discomfort with drugs going in but told to continue with ibup and to gently massage the areas affected, and just to keep an eye on it for signs of infection.
Spoke to my oedema physio before I went in today to get her take on it, and though she said I am at a lesser risk of lymphoedema, with only having one node removed, the risk increases with radio, which I have after FEC so I am relieved that they went with the same arm.
For you physios, she also suggested using kinesiotaping on the affected arm. I have used it on my legs previously and it was quite successful to begin with, until I got a cellulitis infection, which left me with permanently increased swelling and needing compression all the time. Might be worth a try on the arm though?
Anyway better go get some sleep or I will be worth nothing in the morning!
Lyn, x

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Re: Vein tethering/vein sclerosis with chemo?

Thanks for that Crispy. I will look at the CSP site if I can ever remember my password! Tried a little on myself - the sort of thing I'd normally work hard at keeping patient talking through to take their mind off it but would have felt a bit of an idiot talking to myself. Does feel a bit better in combination with ibuprofen. There is def tethering though as fl of wrist tightens it and I feel more pain distally but if I flex elbow takes some of pain off and elb ext increases it. Fingers crossed for how it will be on weds.
Hope your arm ok on Mon Lyn.
Nicky x

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Re: Vein tethering/vein sclerosis with chemo?

Hi girls,
Was in for my review yesterday and all ok apart from arm, which they are saying is phlebitis, and have recommended ibuprofen to see if that helps. Going to have a look at it on Monday before my next treatment but speaking about using other arm which I am not keen on even if they are saying I only had one node removed!
Just hoping arm improves enough that it doesn't become an issue!
Hope all having good weekend?
Lyn xx

kittenkat
Member

Re: Vein tethering/vein sclerosis with chemo?

hi girls - I was assessed for a picc line prior to chemo and they tried to fit one but my veins higher up were too deep and narrow so a no-go, now waiting to have a Hickman line put in before next one - they got a vein for first one in good arm but had to use operated arm yesterday and after 4th go got it.....much as I'm not looking forward to the line I'm looking forward to the relief, and bllod testd they took from my inner wrist area - ouch and side of thumb/hand last time!! Mary x

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Re: Vein tethering/vein sclerosis with chemo?

Thanks for that crispy-I will certainly make a note of these points to bring up tomorrow and see what they say. (Don't trust memory as it is like a sieve just now!)
Lynxx

crispy
Member

Re: Vein tethering/vein sclerosis with chemo?

Hi Lyn and Nicky

I would certainly mention it to your Onc. I suggest you ask if there is a physio attached to the unit who knows about connective tissue stretching.My physio now gets as many referals from the chemo staff as the radiotherapy unit.

Nicky the cPS website has information on willy Fourie (the champion of connective tissue stretching)

A year on although I can still see marks from the veins that were used for FEC i have full range of movement which I need for my work.

Hope this helps

Crispy

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Re: Vein tethering/vein sclerosis with chemo?

Thanks Lyn for pointing me in the direction of this thread
I have had 4 epi and had my 1st cmf today. I mentioned that my chemo arm is still sore after my 3rd epi(my operated side was used because of this for my 4th epi)and I was told that it was phlebitis. I can't use the cream I was given cos the smell makes me feel sick so I've been told to use anti inflammatories, providing temp is ok, and hot and cold packs. I too am a physio and am ashamed to admit that I haven't heard of the anti-tethering technique, but i haven't ever done any onc work. I will be giving it a try. I have asked about a PICC but there seems to be some reluctance about it as even higher up my arm my veins apparently aren't good. As i heave to have chemo next week again i am nervous but i have been told that the methotrexate is an irritant rather than a vessicant.
Lyn, a sore arm is not unimportant especially when you're in an active job. If i was at work and anyone grasped my arm i would be in real trouble. I have got full movement back over the last week or so but couldn't do any heavy lifting and even just knocking my arm eg when making the bed is really painful. I think you need to tell your onc exactly how it is and give examples. Generally speaking when you've been working with people for any length of time you can tell the genuine and who is being a drama queen so don't worry about sounding like you're whining.
Nicky x

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Re: Vein tethering/vein sclerosis with chemo?

Hi Ladies,
Have been posting for a few months on another thread but was really interested to read this one.
I am due to have my 4th FEC on Monday and have a review with my cons onc on Friday.
Since my last treatment I have had a very painful arm,having had problems with cannulation previously, mentioned it to my onc nurse and was referred for a Doppler scan this week. It showed no clot and when I asked the doc what was causing the pain, particularily on extending my arm, he said it was due to the chemo seeping through the veins and into tissue, and also said it would eventually go.
However having read the posts here I am now worried about a) treatment on Monday and b) how long if at all it will take to go? I too have a very active job (I am a PE teacher) and also swim a lot and doubt at the moment I could cope with swimming as my arm is too painful.
Just wondering how to approach it with cons on Friday, without sounding as if I am whining about something relatively unimportant in the bigger scheme of things? Comments welcome please!
Lyn x