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Maintenance Rituximab for me

paella's picture
paella
Posts: 81
Joined: Jun 2012

 

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

 

 

 

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

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's picture
illead
Posts: 856
Joined: Aug 2012

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's picture
paella
Posts: 81
Joined: Jun 2012

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

paella's picture
paella
Posts: 81
Joined: Jun 2012

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

Sal0101's picture
Sal0101
Posts: 127
Joined: Sep 2015

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. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

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
Posts: 218
Joined: Jul 2016

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
Posts: 592
Joined: Jul 2009

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's picture
paella
Posts: 81
Joined: Jun 2012

 

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's picture
lindary
Posts: 694
Joined: Mar 2015

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's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

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
Posts: 2
Joined: Feb 2017

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
Posts: 592
Joined: Jul 2009

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
Posts: 218
Joined: Jul 2016

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's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

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
Posts: 218
Joined: Jul 2016

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's picture
illead
Posts: 856
Joined: Aug 2012

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
Posts: 218
Joined: Jul 2016

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
Posts: 592
Joined: Jul 2009

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
Posts: 218
Joined: Jul 2016

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3430
Joined: May 2012

PBL,

When I was looking for info regarding Rituxan injected via shot, I called the lead RN at my Survivorship Clinic, the place where I am followed for life, and where my annual labs are done and discussed.

She said she was an infusion nurse years before, and was the nurse who delivered the center's first-ever dose of Rituxan to a patient in the 90s.  The cancer center at that time was sort of subcontracted to the hospital, and even then had over 15 oncologists, and numerous branches across a lot of counties. It is now wholly-owned by the hospital system, has well over 20 oncologists, plus a dozen or so oncology surgeons.

She said that first patient went into some form of severe shock, and they had to bring her back...successfully, and the patient was even able to continue Rituxan therapy later.   But I do not envision Rituxan ever being given at a doctor's office during a walk-in.

Two of my drugs (Adriamycin and Vinblastine) were given as push-pull cylinders rather than as drip bags.  When I asked why that was, the nurse said because the drugs are vesicants, or blister agents, and cannot be allowed to spill. If they do spill, he said they have to call DHEC and set up an exclusion zone until it is cleaned up to DHEC standards.  Of course Rituxan in NOT a vesicant, but it is still serious stuff.

At my infusion center (around 40 infusion stations) I notices a device on wheels at the nurse's desk one day, and asked what it was; the answer was "the crash cart."  

What becomes routine and mundane for us over time really is not.  The first-ever chemo drug was developed in secret between government doctors and one of the world's premire cancer institutes toward the end of WW II.  And it was specifically used to treat leukemia and lymphoma.  Its name is Mustargen, derived from Mustard Gas, which is still tightly controlled by international Chemical Warfare protocols.  Mustargen is still a regular chemo drug today, in common use for a variety of cancers. It is a core drug in the HL combination MOPP.

https://en.wikipedia.org/wiki/Chlormethine

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

max

PBL
Posts: 218
Joined: Jul 2016

Hello Max,

Indeed, all of those products routinely used to treat and control our diseases are anything but benign, as anyone who has experienced their side effects will testify.

Isn't it marvellous and ironic though, how we "lymphomaniacs" owe our survival to the wilful administration of such "life-saving poisons" as alcaloids from exotic periwinkle plants (Vincristine, Vinblastine), or the relatively novel (in the Western world) Bendamustine, one of those mustard-gas-derived chemo drugs developed in East Germany in the early 1960s...

Of course, unlike the chemo drugs per se, Rituxan is not a "poison". However, it occasionally can - and does - cause major allergic reactions in some patients, due to its chimeric (hamster/human) nature. Hence the antihistamine and prednisone premedication, slow infusion, close surveillance - and also, of course, the crash cart near at hand. The reassuring bit is that the first Rituxan infusion is often the one that causes the strongest reaction - and then we somehow get used to it...

PBL

lindary's picture
lindary
Posts: 694
Joined: Mar 2015

I had to go back and look at my previous appts. Looks like I am there for about 4.5 hours. I know they take vitals every 30 mins but I don't think I've counted how many times they take vitals. I would guess the Rituxan infusion itself is around 3 hrs. My next one is at the end of the month. I'll try ot pay more attention to when they start the infusion and when we are done. 

lindary's picture
lindary
Posts: 694
Joined: Mar 2015

This is just an FYI.

I kept track of my time during my Rituxan treatment yesterday. First part was about an hour with the blood test, tylenol/benedryl. The Rituxan was about 3 hours. This includes vitals being taken 4 times plus the final flush. Then 15 mins to unplug and cleanup.  

tryshz's picture
tryshz
Posts: 14
Joined: Jan 2017

I had my second Rituxan maintenance treatment on February 22 - and I timed - was very similar to lindary's. The pre-meds took about an hour to go thru, then the Rituxan took just over two hours for me. After that, unhooked and out the door.  Cool

richlam
Posts: 2
Joined: Feb 2013

My maintenance Rituxan was every two months for two years. This was after 6 months of B+R.  I had not had any major reactions to the Rituxan so the infusions had gone to the fastest rate.  After the pre-meds the R infusion was only about an hour.  I would only be there a total of a couple hours including bloodwork beforehand.  I did not get the IVIG. I always drove myself to and from the infusion center and generally finished the day off at my normal job. Remember everybody is differeent and you will figure out what works for you, afterall you have three years to see what works best.

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