TheLupusSite.com banner

1 - 16 of 16 Posts

·
Registered
Joined
·
3,854 Posts
Discussion Starter #1
and boy was it a wild ride.

It took three nurses (all trained in putting in lures and over the last 10 years I have found them to be excellent at it) plus one doctor 1 full hour to get a lure into my arm so they could start the infusion. I am not one to count the number of sticks, but boy there was a zillion. I came home looking like a motor mower had run over my arms !

All the nurses had a go, then a registrar happen to walk past the door so they rushed out and grabbed her and got her to try. They recommended I go home and give my veins a rest (they have been very heavily accessed by iv's over the last 2-3 weeks) and try again next week, but I really didn't want to do that, so I asked them to keep trying.

The doctor also missed quite a few, but eventually managed to get one in, but it was in the bendy bit of my wrist (at least that was where the little plastic bit sat that the tube screws into) which was a bit precarious. My veins just collapsed everytime they tried to put a needle in to it.

Because they were running cyclo, then need really good access and can't use a butterfly. Usually when we get stuck, we just butterfly it into my feet and that works quite well.

Work is going to be pretty insane next week, so I just had to get it all finished up today (major project that i have been working on for about 9 months kicks off next Wednesday). I have had 2 rituxan infusions, two cyclo infusions (only 500mg each, just teeny doses after my rituxan), plus 4000mg of solumedrol over the last 2 1/2 weeks so my veins have just had enough. Also, cytoxan is horrible on veins, and I have had three series of it over the last 10 years, plus of course these small doses after each rituxan treatment.

So next time, they have told me to talk to my rheumie about getting picc line which will last for a couple of weeks, and they can just use that for access.

Fortunately I have a really good pain threshold, so it was all pretty bearable pain wise, except of course the one's around my wrists and hands were pretty painful. But, over in a second - I think the nurses suffered more than me (they are so sweet, they hate anyone getting hurt).

Feeling pretty crappy after cytoxan, I always have a hard time with nausea despite the zofran, but it is only a small dose cytoxan today (500mg) to stop me making antibodies against the rituxan (fingers crossed) so it's not too bad.

cheers

raglet
 

·
Registered
Joined
·
1,388 Posts
Raglet,:there:
I am glad you got your treatment:hehe:, not happy you were a pin cushion:(. I bet a pic line would be the answer to less stress.
On Monday I ended up in Urgent Care and it took the 5 tries to get the iv in me. :eek: I am a wimp, so mine was painful. I am now covered in bruises-ouchy!!!!

Time to rest and let the meds do their jobs.:wink2:


Hang in there,
Becca:)
 

·
Banned
Joined
·
808 Posts
Hope the after effects of cycl are not to awful, glad this round of treatments is finished, here's hoping it kicks in and you get some real benefits. I didn't know the cyclo stopped the body making antibodies against the rituxan, that's interesting to know. Ouch at being a pin cushion!
 

·
Registered
Joined
·
4,444 Posts
Raglet, you are one tough cookie!

It once took them 7 tries to get an IV in me and I was swollen/lumpy on
both my arms. They eventually found success in my bend in my elbow and
I had to have that IV stay in for 5 days. They made a special thing up for me out of casting material to help me keep my arm nearly straight while sleeping! It also could not be a butterfly in my case...

In my case, after the 6th try I was ready to bolt but agreed to give them one more try! *lol*
 

·
Registered
Joined
·
6,152 Posts
Jeepers - one full hour! :eek:

That sounds horrendous. Im glad you have a high pain threshold. I hate when they have to go into my wrist with a needle. :worried:

I hope to goodness this round of medications kick things to touch for a good long while. I will be thinking of you and hoping that things go okay for you on the home front as well.

Take it easy on the work front. I know you love your job but Id say your body is fairly zapped right now.

Lots of love and strength to you
Joan:rose:
 

·
Registered
Joined
·
376 Posts
Wow you are one tough person Raglet. I wouldn't have survived that. I have IV's. I have 1 or 2 good veins in my hands, but they try to avoid the hands now for some reason. Apparently the veins in my arms roll and it is a nightmare trying to get one in. Oh, I cringe just thinking about it.

Hope you are well soon.

Nutty
 

·
Registered
Joined
·
1,289 Posts
I really don't know how you do it. I was puffed out just reading about your treatment never mind your job! :wow:

Hope you don't feel too bad. Don't drink too much water or you'll leak like a seive with all those puncture wounds. :lol:

Take good care, :hug:

Pam xxx
 

·
Registered
Joined
·
1,003 Posts
:eek: :eek: Raglet!!!

you a far more braver than me!! I'm off to bed now & I think I might have nightmares tonight :hehe: aww I hope you have recovered now though :hug:

the pic line sounds good to me :) I hope you feel better soon raglet.

take care..love karen x
 

·
Registered
Joined
·
250 Posts
Raglet......you're giving me flashbacks!
When I went in for chemo getting that line in was the worst part, it always took quite a few attempts to get it in. After awhile I got to know one particular nurse that had the knack to get me hooked up, and from that point on I always demanded that they find her to plug me in. She did miss now and then, but usually got it in on the first try. I was always quite relieved when the line was in and working! I'm also am pretty good at dealing with pain, even my Doc. is impressed with what I've been able to endure.....but I HATE IVs!!!!
Sounds like you're going though a real nasty treatment schedule. Best wishes to you, hang in there.

Eric
 

·
Registered
Joined
·
8,577 Posts
Raglet,

I am sorry I have missed all your "excitement" Not !! I am fortunate and my infusion nurse has no problem finding a vein to stick me for my Cytoxan and Solumedrol. I can't imagine how you work following these treatments. I too have lingering nausea well past the "18 hour" standard for nausea post Cyclo. I will be praying for you that the combination of all these treatments stops your lupus in its tracks.

Take care,
Karen
 

·
Registered
Joined
·
3,854 Posts
Discussion Starter #11
I am sure it is just the 10 years of cytoxan (cyclo) that has finally done my veins in. Cytoxan is really toxic to veins, and I have done really well with my veins to have them last so long.

oh well, since come down with a killer cold - all I can say is b~u~g~g~e~r!

cheers

raglet
 

·
Registered
Joined
·
14,661 Posts
:bow::bow:
Oh Indomitable Andromedian !

I am in total awe and some ghast at what you have to go through and can endure.
I hope the cold clears up soon and of course that you get some benefit from the treatment

Many hugs :)
Clare
 

·
Registered
Joined
·
250 Posts
Keep a close eye on that cold. As I imagine you know, they can get VERY bad when your going through chemo!
You've had 10 years of chemo? Happen to know how many treatments? I'm just curious because I've had a total of 14 over the last 15 years and my Nephrologist says no more, he's very worried about it causeing cancer, so next time we'll try Cellcept (well, hopefully there will be no NEXT time!). The Cytoxan has always done such a good job of chaseing away the Nephritis that I'm a bit worried about not getting it the next time. I imagine if Cellcept didn't do the job he'd then let me do Cytoxan again.

Best Wishes,
Eric
 

·
Registered
Joined
·
3,854 Posts
Discussion Starter #14
hi Eric

Oh, I meant I have been having cytoxan over a period of 10 years, but not continuously.

I am definitely at the point where they don't want to give me any more, as I have had three series of it (just can't remember how long they were - some were 6 months but one of them was a longer).

With my rituxan treatments of which I have now had 4, they always give me a small dose of cytoxan afterwards. So that makes 4 doses of 500mg, as compared with the 1500mg doses I used to get).

Like your doctors, mine totally don't want to give me any more of the stuff, but seeing my disease classified as severe and attacks my cns in a pretty unremitting way, then it has been necessary. My lupus goes after my brainstem, which would be pretty scarey if I thought about it but I choose not to. The protocol that they are using with my rituxan includes a small dose of cytoxan to prevent me making antibodies against the rituxan (which would prevent the rituxan from working).

Boy, you should have heard me moan when I found out that they were STILL going to give me a cytoxan when rituxan was approved, I hate the stuff.

so you are quite right, I have had way too much of the stuff, sounds like you have too. The nurses who do my cytoxan tell me I am their longest term patient, now why doesn't that surprise me.

cheers

raglet
 

·
Registered
Joined
·
7,732 Posts
Thank God I do not have to have

your treatment, yes my veins are STINK too, too many blood test on stink veins in the first place does not help at all. It is a battle to find a vein with me too, we would no good as junkies!;)
 

·
Registered
Joined
·
117 Posts
I have stink veins too

I have bad veins too. That is why I hate needles. They can never get a good vein the first round. So I know you must be going through alot right now. That is my biggest fear with my CNS lupus. Going on the IV's of Chemo type drugs. I hate IV treaments too! So far I have been lucky getting a vein. But if I have to get poked that many times, I would end up freaking out! Hope the treatment starts working soon and it makes you better
 
1 - 16 of 16 Posts
Top