Rituxan Hycela: Rituximab via injection

cuddlefish
cuddlefish Member Posts: 3
edited October 2017 in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi - I have never posted before, but thought my recent experience might be of interest to anyone receiving Rituxan therapy. I was diagnosed July 2016 with SMZL - splenic marginal zone lymphoma. My bone marrow, spleen and blood are all involved and my blood numbers were such that my cancer was categorized as stage four (which was initially rather alarming, but in this case simply means it was past the "watch and wait" phase and it was time to treat it).

Because this is a rare cancer, there are few guildlines for treatment. My first oncologist wanted to remove my spleen, as that had been the gold standard of treatment for SMZL for a long time, and it yields good results for awhile. But my online research showed that treating with rituximab gave about the same results as splenectomy. I wanted to keep my spleen, so I found another oncologist who saw things my way and he decided to treat me with Rituxan alone (monotherapy). Beginning Sept 2016, I had 4 weekly infusions of the drug (with excellent results), and have just completed the first year of 2 years of bi-monthly maintenance infusions. Except for the very first infusion, where I had some weird side effects, I have tolerated Rituxan very well and have since been having the "rapid infusion", which takes 90 minutes.

At my July treatment, my infusion nurse told me about RITUXAN HYCELA, which had just been approved in June 2017. It is an injectable form of rituximab that is combined with hyaluronidase (that allows it to be absorbed subcutaneously) . It is injected by a nurse into the lower belly over a 5 minute period, then they watch you for side effects for 15 minutes, then you can go home. I was excited to try it, not really for the time savings, but so I wouldn't have to have an IV inserted every 2 months. I opted to not have a port, but have now learned that I am a "tough stick". It typically takes 3 attempts to find a vein to start my IV. Not fun! So, my oncologist agreed and my insurance (United Health Care) approved it.

In September, I was the first at my clinic to have the Hycela injection. I'd never received an injection in the belly before and was quite surprised to find it much less painful than a needle in the arm! My nurse injected it over 7 minutes. I felt nothing unusual. After about 30 minutes, I had the same mild reactions to the drug as I have every time after an infusion of it: Slight chest constriction and deeply tired. I slept an hour or so after I got home and was fine after another few hours. The injection site spread into an oval, about 3"x5", and turned a llittle red. By the next morning, it had turned white and raised up just a bit, like a wide hive. It did not itch or hurt. It stayed like that for several days and faded in about a week.

I was a little anxious about having it done, so I looked at the discussion boards here to see if anyone had posted about it, but there was nothing. So, hoping this might be helpful for someone! Sorry the post is so long - I'm not so good at being brief. :-)

Ruth

 

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #2
    Another

    Ruth,

    Someone here did write about Rituxan via injection within the last year or so. A male, but I can't recall the name instantly.   Unfortunately, researhing something like that with the CNS software is not easily done; I would simply have to backtrack all of the threads to look for it myself.

    It is still rare in the US to get it via injection, and not all patients are suitable for injection delivery, still requiring IV for technical, clinical reason.  I believe the first trials for injection were done in Australia, if my memory is correct.  The Rituxan website itself retraces much of this history.

    We have grey squirrels running wild all over the property. Fall must be their mating season and busy time...they make some noises only at this time of year that most people mistake for a type of bird.... That's all of the squirrel and Ritux trivia I have available at the moment.

    Bless your treatment outcome,

    max

  • PBL
    PBL Member Posts: 366 Member
    #3
    Sub-Q Rituximab

    Ruth,

    I did write and post a reply to your post yesterday - but for some reason, it seems to have vanished... I'll try to repeat it here (and hopefully it will appear on the thread this time around!).

    I am currently in my second year of Rituximab maintenance after completing R-CHOP in June 2016.

    My experience of subcutaneous Rituximab is very similar to yours - a painless injection, after which I am very pale and tired. Locally, I too have a palm-sized, non-itchy raised rash. I never considered posting about it, as I also know that I bruise easily and have allergic reactions to bandage adhesive on top of that - so, depending on the nurse's pinch, I can have a pretty solid deep purple bruise stealing the show. When the bruising is minimal, there definitely is a blotchy reaction going on under the surface. The whole thing takes up to ten days to resolve.

    Still, I appreciate not needing my port to be accessed and not being stuck in the hospital for half a day.

    PBL

    PS: Like Max, love the squirrel pic. It brings back childhood memories of one particularly cheeky one that was accustomed to climbing to my bedroom window and paying me a visit every once in a while!

  • cuddlefish
    cuddlefish Member Posts: 3
    #4
    PBL said:

    Sub-Q Rituximab

    Ruth,

    I did write and post a reply to your post yesterday - but for some reason, it seems to have vanished... I'll try to repeat it here (and hopefully it will appear on the thread this time around!).

    I am currently in my second year of Rituximab maintenance after completing R-CHOP in June 2016.

    My experience of subcutaneous Rituximab is very similar to yours - a painless injection, after which I am very pale and tired. Locally, I too have a palm-sized, non-itchy raised rash. I never considered posting about it, as I also know that I bruise easily and have allergic reactions to bandage adhesive on top of that - so, depending on the nurse's pinch, I can have a pretty solid deep purple bruise stealing the show. When the bruising is minimal, there definitely is a blotchy reaction going on under the surface. The whole thing takes up to ten days to resolve.

    Still, I appreciate not needing my port to be accessed and not being stuck in the hospital for half a day.

    PBL

    PS: Like Max, love the squirrel pic. It brings back childhood memories of one particularly cheeky one that was accustomed to climbing to my bedroom window and paying me a visit every once in a while!

    squirrels

    Cheeky is a good descriptor for those little characters! I just adore them. Here in the SW high desert, we have rock squirrels. They look similar but nest underground. They like to rub themselves on areas to mark it with their scent - like cats. Never saw a gray squirrel do that... Sorry if this isn't the place to write about wildlife - just wanted to give a quick reply.

    Ruth

  • PBL
    PBL Member Posts: 366 Member
    #5
    cuddlefish said:

    squirrels

    Cheeky is a good descriptor for those little characters! I just adore them. Here in the SW high desert, we have rock squirrels. They look similar but nest underground. They like to rub themselves on areas to mark it with their scent - like cats. Never saw a gray squirrel do that... Sorry if this isn't the place to write about wildlife - just wanted to give a quick reply.

    Ruth

    That's ok, Ruth. We

    That's ok, Ruth. We occasionally do make a little conversation, and even poke some fun! I don't think there"s any rule on this forum stating that we should be stern at all times.

    PBL

  • lindary
    lindary Member Posts: 711 Member
    #6
    Sub-Q Rituxan

    The idea of Sub-Q Rituxan sounded good when I first heard of it but I enjoyed every day I spent getting the treatment through my port. It was about 5 hours of watching tv, reading and having a reason to just sit and not feel guilty for doing so. I am glad my 2 year maintenance is over but part of me will miss those somewhat relaxing times. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #7
    lindary said:

    Sub-Q Rituxan

    The idea of Sub-Q Rituxan sounded good when I first heard of it but I enjoyed every day I spent getting the treatment through my port. It was about 5 hours of watching tv, reading and having a reason to just sit and not feel guilty for doing so. I am glad my 2 year maintenance is over but part of me will miss those somewhat relaxing times. 

    I agree

    Linda I agree that infusion days were something I looked forward to, as odd as that may seem.  It may have been a sense that I was "doing something" positive against the sickness.   I met a lot of dear people at the infusion center over that time.  Most have died, but none of them had Lymphoma; a few did have Leukemia.  Most had organ cancers of various types.   Most common seemed to be breast, colon, and prostate.

    Cancer teaches us all a lot about not just cancer, but about life.

    max

  • Kmsparky
    Kmsparky Member Posts: 3
    #8
    Hi Ruth, 

    Hi Ruth, 

    This sounds like a great option!

    i was diagnosed with SMZL in December 2017.  Today I completed by third out of four infusions with rituximab.  My spleen has responded very favorably!  My doctor hasn't mentioned anything about follow up or maintenance therapy.  I guess she is waiting to see the results from my first series.

  • Karlsie
    Karlsie Member Posts: 1
    edited March 2018 #9
    Do you need blood test before every injection?

    My Mom has SMZL. She had her first intravenous Rituximab about a week ago, which went fairly well.  She has 3 more treatments to go. Her veins are battered, though, and she is super anxious and reluctant about getting next IV treatment.  If she could be switched to subcutaneous that would help a lot.  However,  for the initial IV treatment, she needed to do a blood test to see if she can be given Rituximab.  Do you need to have your blood drawn before every injection?  If so, it means you still need to be stuck in a vein with a needle every time, which for us would defeat the perpose of switching to subcutaneous...

  • ShadyGuy
    ShadyGuy Member Posts: 922 Member
    #10
    Emotional or medical

    While collapsed veins etc are a real medical issue and of great concern, simple “fear of needles“ is nore of an emotional issue and should be approached as such. As far as pain, I seriously doubt that a large injection of Rituxan into stomach fat is painless. The other option of course is a port. For most people Rituxan has very few serious side effects. Good luck! I received 26 Rituxan infusions in my first go around with cancer. I am rentering therapy with chemo and Rituxan and if this works I will be on Rituxan maintenance for life. This issue is germain for me so I went for a port. 

  • lindary
    lindary Member Posts: 711 Member
    #11
    Hate Needles

    I am one who hates needles. My port was put in about mid-January 2015. By then the veins in my left arms had given out. My last Chemo was Oct of 2015 followed by 2 years of Rituxan maintenance. That ended Oct 2017. Everytime when I went in for a treatment I thanked medical research for my port. When I met with my Onc in January we decided to keep the port in for a while yet. I like it so much better than having needles stuck in my arm.

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