Maintenance Rituximab for me

paella
paella Member Posts: 81
in Lymphoma (Hodgkin and Non-Hodgkin) #1

 

My Onco is starting me on this in a two weeks.  I’m almost 7 months post-SCT (autologous) and feeling great.  (Although today I had a pneumonia shot, a flu shot and a TDAP shot and my arms are SORE.)  It appears from the modicum of reading I’ve done that this is a no-brainer…definitely the right thing to do.   

 

So the maintenance plan is 4+ hours of treatment once every 3 months for 3 years.  Plus after this first one (and maybe after all of them??) I’ll be getting an infusion of IVIG (intravenous immunoglobulin).  I didn’t think to ask the doc if I get this also for 3 years (and she didn’t bring it up) – does anybody know what typically happens?  

 

Also, would appreciate any suggestions or advice or warnings from anyone who has done this maintenance after a successful SCT.  I’ve not had any bad reactions from Rituximab neither with the R-Epoch in ’11 nor with the salvage therapy pre-SCT this past summer.

 

And one more question - will they let me drive after the Rituximab infusion?  After the IVIG infusion?  With Mac going through Folfirinox (and he definitely was told he couldn't drive on infusion day) scheduling these babies may be a challenge without adding in another 4 hour round trip every so often.  Ahhh, yes...family cancer.  Don't you love it?

 

Thanks - Paella

 

 

 

 

 

 

 

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Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Good

    I am glad to hear from you again Paella. And glad to hear that Mac's therapy is coming along.

    While I never had SCT, I had 12 large-dose bage of rituxan during 12 R-ABVD infusions, but even with that, was never told I couldn't drive, so I would suspect driving is OK.  I never DID drive, and felt quite tired, but it was an 8 hour day receiving all of that stuff. My Benadryl was given before anything else, and usually wore off within the first hour or thereabout.

    If anyone has been advised to not drive after just Rituxan, please submit the info.

    max

  • illead
    illead Member Posts: 884 Member
    #3
    Max Former Hodgkins Stage 3 said:

    Good

    I am glad to hear from you again Paella. And glad to hear that Mac's therapy is coming along.

    While I never had SCT, I had 12 large-dose bage of rituxan during 12 R-ABVD infusions, but even with that, was never told I couldn't drive, so I would suspect driving is OK.  I never DID drive, and felt quite tired, but it was an 8 hour day receiving all of that stuff. My Benadryl was given before anything else, and usually wore off within the first hour or thereabout.

    If anyone has been advised to not drive after just Rituxan, please submit the info.

    max

    okay

    Bill had 2 years of rituxan maintenance and drove home after each one.  We never asked and no one told us different.

    Hope that helps,

    Becky

  • paella
    paella Member Posts: 81
    #4
    Thanks, Illead - one question:

    Did Bill have any IVIG treatments (intravenous immunoglobin)? - paella

  • Sal0101
    Sal0101 Member Posts: 136 Member
    #5
    Rituxan

    I'm 4 months post SCT.  Do the different types of NHL's determine whether we would have a rituxan maintenance? I would do it in a heartbeat if it was even mentioned to me. It hasn't been. 

  • paella
    paella Member Posts: 81
    #6
    illead said:

    okay

    Bill had 2 years of rituxan maintenance and drove home after each one.  We never asked and no one told us different.

    Hope that helps,

    Becky

    Correction to my post to you, Illead

    Did Bill have any IVIG treatments (intravenous immunoglobin) in conjunction with his rituximab maintenance treatments? - paella

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #7
    Sal0101 said:

    Rituxan

    I'm 4 months post SCT.  Do the different types of NHL's determine whether we would have a rituxan maintenance? I would do it in a heartbeat if it was even mentioned to me. It hasn't been. 

    Po

    Sal,

    I suspect PoGuy has some insight into your question regarding  whether Rituxan maintenance is advisable with your particulars, having received 18 differing chemo drugs himself.

  • PBL
    PBL Member Posts: 369 Member
    edited February 2017 #8
    Maintenance Rituximab and lymphoma type

    Hi Sal,

    The basic elements - as I understand them - that determine whether Rituximab is called for are the following:

    Rituximab is a monoclonal antibody targeting CD20-positive B lymphocytes. It therefore helps eliminate the mutated - but also the normal - cells involved in B-cell lymphomas.

    A maintenance course of Rituximab, inasmuch as it keeps the targeted lymphocytes at bay, aims to delay recurrence in those lymphomas deemed "incurable", i.e. essentially indolent (e.g. follicular) lymphomas.

    There is, of course, some degree of controversy on the latter point among physicians, so your doctor's individual beliefs come into play in their decision regarding your treatment. Also, as treatment comes at a certain cost (financial and in terms of health risks), doctors reach a decision by balancing potential benefits and risks for each patient.

    Assuming that you have B-type lymphoma, you may feel that Rituximab could have been part of your treatment. However, SCT being given with a curative intent, your doctors may feel confident (or have objective proof) that it is unnecessary, at this point in your treatment, to prescribe Rituximab to you.

    As always, it cannot hurt to ask your hematologist the question regarding Rituximab maintenance in your case for a more precise, individually-tailored, answer.

    Hope this helps.

    PBL

  • yesyes2
    yesyes2 Member Posts: 591
    edited February 2017 #9
    Rituxin and IGG

    I have been receiving rituximab for going on my tenth year, first along with Chemo for my NHL and then for my RA.  Long term use of Rituxian can suppress your immune system leaving you open to infections.  I get my IGG and IGA checked periodicly and for some time now the IGG has been low.  In the past year it has really dropped and my doctor is sending me to a specialist to see if I need to receive IVIG treatments.  There is great concern because of increased infections on people getting long term Rituxian.  Since receiving this drug I have had chronic sinus problems and sinus infections.  I'm sure your doctors want to insure that you stay healthy and away from infections after having a SCT.

    I don't know about the IVIG but I drive home from my Rituxian infusions.  Although there have been times when the Benedrill has put me out of commission and I needed someone else to drive me home.

    I wish you and your husband better days in this new year.  Although I don't often post I have been a follower of your story.  you and your attitude and zest for living has been an inspiration.  

    Leslie

  • paella
    paella Member Posts: 81
    edited February 2017 #10
    back to you, yesyes2

     

    Leslie – Thanks for responding!   I’ll be looking forward to seeing what my immunoglobinimmunoglobulin immunoglobulin level will be after the IVIG infusion (2 weeks after my first R maintenance infusion).  Does the IVIG infusion typically take 6 hours?  Maybe I won’t have to get one with every R.  Hope I get a bed J.  City of Hope has a separate place (different building) for all things pre and post autologous (and maybe allogeneic, too) sct with a lot of beds.  Even though my husband’s Folfirinox infusion takes about 6 hours, he’s in the normal infusion area but has been lucky to have a bed for his first 6. 

     

    Look at me, worried about our having beds.  Imagine feeling lucky about getting one.  Actually probably the right level of thing on which to spend one’s worry allotment, eh? 

     

    I appreciate your last sentence…made me feel good wolf-ish.

     

    Best - Paella

     

  • lindary
    lindary Member Posts: 711 Member
    #11
    My Rituxan maintenance

    I recieve my treatment in the same infusion area as I did the R-Chop. It is about 5 - 5.5 hours now. The first 30 mins is the CBC, high dose of Benedryl (through the IV) and Tylenol. When doen it is about 15 mins to "unplug" and get my appt for the next one. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #12
    lindary said:

    My Rituxan maintenance

    I recieve my treatment in the same infusion area as I did the R-Chop. It is about 5 - 5.5 hours now. The first 30 mins is the CBC, high dose of Benedryl (through the IV) and Tylenol. When doen it is about 15 mins to "unplug" and get my appt for the next one. 

    Time

    Linda,

    So to receive just Rituxan, along with the fluids and Benadryl, takes you about 5.5 hours ?

    I ask because when I was getting R-ABVD my infusion day was ordinarily 8 hours, but the Rituxan was first, and did seem to take 4 hours or so. And after my first infusion day, my RN told my wife and I that I was getting everything "wide open," or the fastest drip rate possible, which would pretty much match the timetable you are now on.   That left four hours to do the other 4 bags, plus the necessary fluids.  Two of my remaining drugs were bags, but two were push-pull cylinders, which went very fast. 

    By about the fourth hour each visit I was having to pull the IV tree to the restroom every 20 minutes or thereabout; almost continuously.    I felt like the Michelin Man floating above the Macy's Parade at the end, but was not drowsy, and believe I could have driven myself home if necessary.

    I ask this partially because in the past I have read where people said they got their Rituxan infusion in an hour or two.  The only way I can explain that was that it was not the same dosage as I received, no way.

    max

  • Islandgirl50
    Islandgirl50 Member Posts: 2
    #13
    Rituxan

    Paella..My Husband received his 1st Rituxin over a 4-6 hour period with Diphenhydramine ( Benedryl ) and Tylenol given before each IV Rituxin.  The subsequent  2 so far have been given over 2 hours.  He initially has 12 cycles of AVBD for Hodgkins stage 4 and so far is in remission for that.  Now we found he had/has B cell NHL also.

  • yesyes2
    yesyes2 Member Posts: 591
    #14
    Length of Rituxin infusions

    In response to the length of each of my Rituxin infusions, mine have always run pretty darn close to 7 hours.  That time is from stat to finish.  Registration, pre meds, only tylinal and benadrill, infurion and disconnect.  It can be given at a much faster rate, infusion 2/3 hours, if you are having a series of infusions.  Such as when you are receiving chem.  As I get 2 infusions every 6 months I don't qualify for the faaster infusions.  The practice of faster infusions started on the east coast several years ago and has moved west.  Most likely started so the centers could move patients in and out more quickly.  At least that's why Breast Cancer treatments changed from pills to infusions.  Where I go does not usually do the shorter infusions.  Hope this answers some questions.

  • PBL
    PBL Member Posts: 369 Member
    #15
    Rituxan mode of administration

    I have been wondering about all the comments I have read on this forum about the length of time involved in the administration of Rituxan.

    Rituximab has been available as a subcutaneous injection in Europe and Australia for a couple of years now. It is administered as a five-minute shot in the patient's belly fat, followed by a 30-minute surveillance for possible reactions. Premedication (antihistamine, paracetamol and prednisone) can be taken orally an hour before the injection - for instance, before leaving home for the hospital. As this is more practical for patients as well as hospitals, it is now offered in the maintenance phase of treatment (initial injection must always be slow intravenous in case of a severe reaction requiring the injection to be stopped).

    For some reason, it does not seem to have been made available in that form in the United States (for further reading: http://www.medscape.com/viewarticle/819736)...

    Food for thought?

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    edited February 2017 #16
    PBL said:

    Rituxan mode of administration

    I have been wondering about all the comments I have read on this forum about the length of time involved in the administration of Rituxan.

    Rituximab has been available as a subcutaneous injection in Europe and Australia for a couple of years now. It is administered as a five-minute shot in the patient's belly fat, followed by a 30-minute surveillance for possible reactions. Premedication (antihistamine, paracetamol and prednisone) can be taken orally an hour before the injection - for instance, before leaving home for the hospital. As this is more practical for patients as well as hospitals, it is now offered in the maintenance phase of treatment (initial injection must always be slow intravenous in case of a severe reaction requiring the injection to be stopped).

    For some reason, it does not seem to have been made available in that form in the United States (for further reading: http://www.medscape.com/viewarticle/819736)...

    Food for thought?

    No Luck

    PBL,

    Thanks for your interesting info.  I could not get your link to work, but found the following:

    http://onlinelibrary.wiley.com/doi/10.1111/ijn.12413/full

    I read the entire manufacturer's (Genetech) Dosing and Administration data sheet (see Section 2 ff).   This is interesting in that it fully delinneates IV FLOW RATES which US patients will find interesting in this discussion.  It never mentions Rituxan as an injection.   The article I linked states that many facets of Rituxan as injection are still under study and refinement.   No doubt, there is no telling when, or if, this form of delivery will come to the US.

    Also for convenience:

     http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx

    http://www.rituxan.com/  (Click block at top of Homepage labeled "Perscribing Information and Medication Guide") This site is dated "2017"

     

    max

  • PBL
    PBL Member Posts: 369 Member
    edited February 2017 #17
    ... Second chance!

    Sorry about the failed link... It is a Medscape article. Maybe you can access it by typing the title in your search engine (it works for me) :

    "Subcutaneous Rituximab Recommended in the EU"

    by Roxanne Nelson (Jan 27, 2014)

  • illead
    illead Member Posts: 884 Member
    edited February 2017 #18
    IVIG

    Hi Paella,

    I am so sorry, I don't know why I didn't see any of the posts since 2/2.  They show up as new, I just now saw it.  To answer your question, Bill did not have IVIG, just the rituxan.

    Becky 

  • PBL
    PBL Member Posts: 369 Member
    edited February 2017 #19
    SubQ Rituximab - There is hope yet!

    I just found this press release dated November 3, 2016 - the title is self-explanatory.

    http://www.prnewswire.com/news-releases/fda-accepts-genentechs-biologics-license-application-for-subcutaneous-formulation-of-rituximab-300356307.html

    So, subcutaneous Rituxan may be available in the USA in the foreseeable future after all.

    PBL

  • yesyes2
    yesyes2 Member Posts: 591
    edited February 2017 #20
    Sub Q

    If this were to become avaiable in Hemo/Onc offices it has the potential to make it unavailable to people on Medicare.  As long as you go to the hospital it is covered however if given at your doctors office it may go into your prescription plan.  But the way things are going who knows if there will even be a Medicare for those elegable for it.

    Not having to go to an infusion center and to receive it in a short appointment has alot of perks for many people.

    Thank you PBL for the information.

     

  • PBL
    PBL Member Posts: 369 Member
    edited February 2017 #21
    Sub Q

    There shouldn't be any concern over Rituximab becoming available at a clinic - in fact, I have read numerous times that Rituximab - whatever the mode of administration - should "only be administered in an environment where full resuscitation facilities and close monitoring are immediately available", so I suspect that, while subcutaneous administration will save them time, it will never save patients a trip to the hospital.

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