Rituximab day: we have have many people ask us about... - NRAS

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Rituximab day

Tricia-P profile image
7 Replies

we have have many people ask us about what goes on when you have the treatment hope you don't bore easily but here it is love to all my old friends, i've been down in the dumps for many reasons but just getting myself pulled together again.

Rituximab (trade names Rituxan and MabThera) is a chimeric monoclonal antibody against the protein CD20, which is primarily found on the surface of B cells. Rituximab destroys B cells, and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells. This includes many lymphomas, leukemias, transplant rejection, and some autoimmune disorders. Such as Rheumatoid Arthritis. Thank you Wiki for that fully understandable jargon. lol

Rituximab Day

I had my first Rtx treatment last year in June which went very well and kicked in quickly and lasted till just before Christmas; I had a steroid injection for a pressie from my wonderful Rheumy team to last me over until January 11th.

My second set of treatments.

I was more nervous this time around I suppose you're going into something you've already experienced and worry that it won't go as well again. My appt was at 9.30 the Rheumy team have an arrangement with the team who provide the chemotherapy treatments, they like you to be prompt as the Onocology manager doesn't like her waiting room full ha ha! It was a really cold morning and I forgot to keep my arms as warm as you should or maybe that's just me but my veins get up and disappear.

I was called in and weighed good still losing, and then shown to my chair they are rather swish red leather with electric controls to lift your legs up and lay back, each chair has a TV beside it and then the stand with the drugs on, a table to use for coffee etc. I was introduced to Racheal my Staff nurse for the day. I had my 1st of many observations done my blood pressure was high my body was cold and my breathing well that's ok. So it's now 9 :50 and we start the show.

1st 2 paracetamol followed by a piriton tablet, then Racheal prepped my arm to put the line in; my left as I'm right handed the vein disappeared, so I was sent off to the sink to put my arm under hot water to persuade the veins to pop up. Back to my chair 2nd attempt no go. I can now feel myself starting to worry what will happen if my veins don't perform, but that's when Hannah came to the rescue, Racheal said we don't try more than twice we discussed using the right arm 1st try Hannah had it. Finally we can start.

2nd The steroids so I now have a bag of water attached and a second line going into to that. The nurses check the steroid and mix it and add it to a 250ml bag of saline, that will take about 20 minutes to go through, then they flush the vein again with clear fluids. Coffee was served and I got my kindle out to start to read.

Crikey their back to check my observations again BP come down to normal my temp gone up a bit I'm warming up. We will now go on to the main event.

The steroid bag comes down and the girls double check the Rituximab against my hospital number and name etc plus the date and expiry that's ok it goes out of date at 23.59 that evening.

I watch the Rtx drip down the pipe and wonder how the immune system feels knowing that its suppressor was on its way. It makes it feel like a battlefield I go back to my story.

30 mins have gone by, Racheal is back checking I feel ok no problems. I have my obs. done again BP down a little bit temp Ok. We are now asked if we would like lunch our hospital supplies a little snack box a sandwich, yoghurt banana and juice. Enough when you are just sat.

I watch people come and go most with cancer having their 30 mins. of chemo. I think to myself that I'm luckier.

So that's it really the afternoon went on with 30 minute observations my BP did keep dropping that does seem to be a side effect the lowest was 105/44 and the Rtx speed being increased slowly so your body doesn't reject it. I did get a bit of a bad head about 2 oclock and asked for some paracetamol, Racheal was concerned that I was maybe having a reaction but we decided not. The final drops were squeezed out of the bag about 4pm and then normal saline flushed through so as you get every drop. 5pm and off home and I still feel fine. Roll on 2 weeks second dose and hopefully feeling better as Spring starts to bloom.....................................

Tricia P xxxx :)

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Tricia-P
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7 Replies

Hi Tricia P,

Glad to hear you're getting yourself pulled together! I just wanted to say thank you for this post...I have my first Rituximab infusion a week on Tuesday eeeeek so couldn't have come at a better time! I know everyone's different but when you say it kicked in quickly what sort of time frame are you talking about?? I feel for you, I also have problems with disappearing veins, when I last had steroid infusions there were three attempts at getting a needle in me and my blood pressure was sky high by the time they got one in...let's hope for a smoother stabbing this time!

Hope you're feeling well

Tori

x

Tillytop profile image
Tillytop in reply to

Hello Tori

Just wanted to say good luck with your forthcoming Ritux infusion. I'm guessing this is your first infusion cycle? You ask about timescale for it to start working - I too am interested to hear how quickly it started to work for Tricia. When I started Rituximab I was told not to panic if it didn't appear to be working for up to 9 months (ie 3 months after the second infusion cycle which, at my hospital, is routinely given 6 months after the first). The Rituximab has definitely been working for me but I can't say how long it took to work because (due to other health stuff) there was a gap a year between my first and second infusion cycles and both the rheumatologist and I think that because I didn't get my "boost" 6 months after the first infusion cycle, I have yet to know how well it is going to help in the longer term. What I do find though is that the steroid infusion which goes alongside helps pretty much straight away and lasts me a good few weeks.

I did meet a lady at the hospital who was happily going a year between infusion cycles with no problems at all, so that's what I'm aiming for!

Don't know if any of that is helpful.

Good luck with your infusions!

Tilly x

So good to hear from you and the treatment is working x

Sioux profile image
Sioux

Thanks Tricia. Its the disappearing veins I'm worried about. It all seems good news otherwise. Keep well and happy. xx

Tillytop profile image
Tillytop

Hello Tricia

There don't seem to be many of us "Rituximabers" around so it was great to read your blog and to see that your first set of infusions worked well (and quickly) for you. Glad the most recent infusion went well and good luck for the next one. Hope it helps as much second time round!

Tillyx

Thanks Tilly, it is indeed my first one. I've also heard of people that go for a year without problems...that would be absolutely amazing and definitely something to aim for! Sorry to hear you Rituximab journey hasn't been as smooth as it could be. Steroids normally help me out too...thank God for steroids I say, so hopefully that'll tide me over until the Rituximab kicks in. I'll let you know how it goes and hope that you get good results from it soon.

Tori

x

Keep us posted tricia x

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