Real Stories – Rituximab Patient Interview

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Feature image from ITPANDME

The following interview is a personal account and should in no way substitute for medical advice. 

A few people have been curious about what is involved in Rituximab therapy as a treatment for Blood disorders.  I had posted about earlier, but I decided the best way to get information was to interview a patient currently receiving treatment.  Here is what she had to say about her first two visits to Oncology to receive this ‘Chemotherapy.’

ITP Patient Stories, ITP chemotherapy, ITP treatment, ITP research, ITP Rituximab, RituximabWhat was your initial reaction to the drug?

Well, after I failed to respond to the steroids after a prolonged period of taking Prednisone daily (Over the last seven years) this treatment was my next option.  I guess my initial reaction was excitement because I had been waiting for something for a little while.  I was told that it had a success rate and that it just might kickstart my immune system back into functioning normally.

It is not like asking a perfectly healthy person if they would like to receive chemotherapy or not.  When you have been sick for a long time, and the waiting has become tedious, and you are ready to get back into exercising and working and playing with your grandchildren.  It felt quite obvious that I would give it a go.

What was involved?

I would be treated once a week for four weeks, in the Oncology department in the ACT.  The treatment itself took a bit over two hours, but there was time before and after that would, all together take about 4 hours.  I realise afterwards that it takes the whole day.

Rituximab and ITP

What happened when you arrived for your first treatment?

I arrived at the hospital and went straight into Oncology department.  There was a waiting room, with chairs and magazines, much like a

At the reception desk, I introduced myself and the reception nurses seemed to have been waiting for me.  They knew I was coming, and what I would be getting, it was all very organised and I relaxed a bit after that.

Everyone around me looked a lot sicker than me, and I wondered how many times they had been here, whether they could tell I was new.  I started talking to another lady who had come in at the same time as me.  She had lost her hair, seemed quite fragile and was a lot sicker than me – she talked of getting a favourite beanie – then we got called and went in.

Where were you taken to?

There was a big door beside us, and a nurse came out and called out your name.  On the other side of the door was a huge room with heaps of chairs and people and trolleys and beds and curtains, it was overwhelming.

A big chair had been set aside for me, with all my information and medicine all laid out, even a bottle of water and a pillow.  Everyone was quiet friendly and chatting with each other – the nurses were very entertaining and fun.  It did seem a little bit like everyone knew each other and smiled as you walked past.  I put my bag down beside my chair and made sure I had gone to the toilet before I sat down, worried about having to sit there for so long.

What is the process before treatment begins?

Um, I had just one nurse looking after me, I think everyone did.  She took my blood pressure, my temperature, asked me how I was feeling and had to double check a few times that I was who I was meant to be… Age, Name that sort of thing.

I was given painkillers and anti-histamines as a table before we started, and then a line was put into the back of my hand, an anti-nausea shot was injected and then a saline solution added.  That had run for a little while before the Rituximab was attached.

The Treatment itself –

Rituximab at ITP, ITP and Ritxumab

Once you are ready for the drug itself, two nurses come over and do it together.  They wear big gowns and gloves and glasses over their eyes.  Always they are checking that you are the right person receiving the drug.  They check each other’s work and tell each other what they are doing.

Watch first treatment – specialist coming – can tell.

Mostly I remember getting very sleeping.  I was told that was because of the antihistamines.  Everyone goes to sleep.  Partners and family walk around and get the paper, eating lunch and doing other stuff.  I was left alone while the drug was going through, slept most of the time and my family read books.

At lunch time, they serve a hot lunch, but I wasn’t interested in eating.  There are sandwiches and tea and coffee available the whole time you’re there, but we had brought our own food.  My daughter just wanted to eat chocolate brownies

Who else is there when you get treatment?

Oh, there were lots of people there, all together, in a big circle.  There were young and old, men and women, all sorts of people getting chemo together.  Everyone seemed to be in a different stage of their treatment.  A few people could not sit up in the blue chairs and were getting treatment in their beds in the same room.

The nurses and admin ladies were very entertaining, walking around singing to the radio, talking about knitting and dancing along to songs.  They were young and friendly and keen for a chat if you were awake.  Afterwards, it is all very simple.  I was taken off the drip, helped out of the child and told I could go home.  They knew I had family with me, but I am sure they would not have let me go home on my own.

How do you feel? 

Sleepy – Tired.  There is a fog that tends to come in waves; I am awake and then suddenly I fall asleep.  I don’t feel too sick all the time, but I haven’t really eaten a lot.  I am hating having all this time at home but feeling so terrible I can’t use it.  The psychology of the whole thing is hard too.  Looking back on the treatment I realise I am a lot sicker than I thought I was.

Well I am excited to see what will happen, I am ready to get back into swimming again really soon.

by Meg

Meghan Brewster is a writer and blogger. She is an ITP patient and launched ITP&Me in 2011. She is a coffee lover and a try hard dancer. @meghan_brewster

10 thoughts on “Real Stories – Rituximab Patient Interview

  1. marie.fitzgerald31@gmail.com'
    Marie Fitzgerald says:

    I have received the Rituximab treatment when I was living in the UK. The treatment worked and I was in remission for about 4 years until last week when my platelets crashed to 15. I am looking at getting the same treatment again here. It does work so if you have ITP please ask your doctor to give you this treatment!!

    • Meg says:

      Thanks so much for your contribution. Our interviewed patient is going really well also and looks to improve a great deal. her last treatment is today – So I cant wait to interview her in a few weeks and see how everything went. Thanks again.

  2. bhatton@internode.on.net'
    Bron says:

    I have had ITP for 16 years now splenectomy, dapsone, prednisone, dexamethasone, ivig and finally rituximab. It gave me 3 years the first time 3.2 years the next time ( lower dose) then 3.6 years the third time. I Have just crashed again to 12,000 with all the usual signs and symptoms and am waiting for approval for rituximab again. It is a little harder to get now as they are pushing things such as nplate. It is my drug of choice though and a great succcess for me.

    • Meg says:

      Oh Bron, I hope you are approving again, with such great results those first times on Ritx! I have noticed that it is a little harder to get and not recommended so much anymore. Everyone responds so differently. Another lady told me it was the worst thing that ever happened to her – Interesting isn’t it. I am interested to know how you are going without a spleen…

  3. bhatton@internode.on.net'
    Bron says:

    There is a really big push for the nplate etc now because of costing. I had a clot when I had my son ( who also developed itp aged 4) so I pretty much refused to be made take a drug that I havent had before due to the clotting risk. My heamo wasnt impressed but his last words were we will get a picc line put in so fingers crossed. I did develop neutropenia from the rituximab but I just monitor it and have antibiotics hand just in case. I have been spleenless 14 years now it failed 4 weeks after surgery. I am fine with it and have been very lucky illness wise all things considered. I didnt take penacilin long term as my Professor knew the effects it had on me and said long term you build up resistance anyway.This suited me to be honest as they caused havoc with my system. Only my chinese herbalist saw issues with the spleen when I tried to fall pregnant.My story is on Gretas blog page ITPinourwords. Was great to come across your site too. Starting to think that ITP isnt so rare after all and I Have met a lot of folks over the past 17 years of being diagnosed.

    • Meg says:

      Wow, thanks for sharing that – I will defiantly have a look on Greta’s blog for your words. I am starting to think that more and more people are getting diagnosed with autoimmune disorders in general. I just brought this book online and it is really interesting and tasty – http://autoimmune-paleo.com/

  4. gemarco1@yahoo.com'
    Anne says:

    I have ITP for more than 20 years now. Was treated with prednisone after prednisone and Winrho after whinro for a long time. Until Rituxan 8 years ago followed with prednisone few mos after Rituxan last dose. My platelet had maintained 150-192 until it crashed to 11 in my last check up. Now I’m in Rituxan treatment again. Hopefully it will work the same as before.

  5. info@perrysignslondon.co.uk'
    perry eales says:

    Hi, I had 6 months of Rituximab along with bendamustine for treatment of a stomach ulcer which had minor lymphoma cells, my treatment was a success after only 10 days, i was able to eat with NOT being sick and after the 2nd course of chemo the ulcer & cancer totally disappeared and i’m totally back to normal. I go back once every 2 months for 2 years for 1 10min injection of Rituximab, i have NO side effects or sickness and fingers crossed ill be around for the next 40 years. Hope this information helps someone who has similar condition.

  6. brynnbittner@hotmail.ca'
    Brynn says:

    Is anyone on this from Canada?
    I have ITP and have had such since 2010. Was a sudden diagnosis and a sudden depletion of platelets, no known reason.
    I have had prednisone, high doses which were stopped due to rare side effects (all listed hit me) including Tumour growths on liver and kidney, have had a full platelet transfusion feb 2015 when platelets dropped to 2, then 9 bottles of pills to try to manage everything my body went thru after that, 8 IVIG transfusions over last 2 years. Which only are a bandaid and last with raising platelets about week and a half.
    I tried to look into rituximab but was told really expensive for treatment and that in Canada won’t even be approved until after splenectomy….
    so after 2 spontaneous ruptures, internal bleeds in 2 months I was IVIG’d again, over 2 days and then last week just had my Splenectomy done in hopes of possible remission. In recovery stage and boy it’s not fun.
    So many people don’t understand what it is like to live with this disease.
    I am praying I can get my 2-10yrs remission…Was told I had 55% chance, went down from the 70% normally given. Given my situation. But if it doesn’t I will push for Rituximab because I have heard so many stories about it!

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