Bendamustine + Brentuximab Vedotin

I had my first bendamustine & brentuximab treatment today. It went very well. I’m recording my experience for future patients who undergo this treatment.  Perhaps it will become a blog in the future.

Big picture, I’m receiving this treatment as salvage chemo following 2 cycles of ABVD and 4 cycles of escalated BEACOPP which did not bring me to remission. This treatment is based on a study published in April this year showing success for relapsed and refractory HL.  The study used 2 to 6 cycles, I will receive 3 cycles and then have a pet scan around the time that cycle 4 would begin.  Each cycle is 3 weeks long.  Unlike BEACOPP, there are no dietary restrictions (you don’t really miss foods with tyramines or even know that tyramines exist until they are gone).

As typical for day 1, my nurse drew my blood for tests.  I got to use my port for the first time and i was happy with it.  After that my oncologist came into the exam room and we talked about the treatment, and then I went to the floor for treatment.

Similar to ABVD and BEACOPP they gave me premedications which were Tylenol, benedryl, zofran, and a steroid (the same one that they gave me with ABVD).

The benedryl made me very drowsy. I slept through about an hour of the treatment, as a result.

I got the brentuximab first and it took only 30 minutes. After it completed they observed me for an hour to make sure that I didn’t develop a reaction to it. This is when I fell asleep. This one hour observation was just a one time thing, so it won’t happen in subsequent cycles. Ironically, I woke up and both  my arms were numb and tingling.  I thought this was too soon for peripheral neuropathy, so I shook my arms, and sure enough they had both fallen asleep. 

After the hour of observation, I was given bendamustine for just 10 minutes. Afterwards my nurse flushed my line a few times, filled it with heparin, and I was free to go home.

On day 2 I will get just 10 minutes of bendamustine and just two of the premedications. On day three I will get a neulasta shot and then I’ll be done with the first cycle.

Overall the first treatment was easier than ABVD and BEACOPP. There was no adriamycin requiring drawbacks to ensure that the medication hadn’t escaped my veins and was killing tissue.  Nothing burned going in like the vinblastine did (I had a simple I.V. back when I had ABVD). The total infusion time was shorter too, compared to those protocols.

I had compazine 9 hours after they gave me zofran and then took zofran 3 hours after that.  So far no nausea.  So far no other side effects, except I did take a nap this afternoon (so that makes two naps today) so maybe fatigue was a side effect.

I expect that things will get much harder going forward. In a week I’ll have low blood counts and bone pain from the neulasta. The treatment will build from cycle to cycle.  At some point my peripheral neuropathy will get worse. The nurse told me that they can adjust the dose when that happens.

On the plus side I may have solved the neulasta bone pain issue that I had with BEACOPP.  Back then I took Claritin that we had previously bought that you put on your tongue and it dissolves. Today we went to buy more and found that the pills have double the dosage. It turns out that when I was on BEACOPP, I had bone pain in cycles 1, 2, and 4. In cycle 3 I was in the hospital. They gave me Claritin pills and I didn’t have bone pain that cycle. 

Anyway. Those are my observations on day 1 of brentuximab & bendamustine. 

This is great Jason and very helpful for others going on the journey.

Keep on keeping on.

Good to hear it all went well Jason. Keep it going.

Regards

Mark

Hi Jason

I have just been told that I will be starting Brentuximab & Bendmustine from tomorrow - was meant to start my second cycle of IGEV (salvage) today but it has been cancelled last minute since seeing my consultant as my tumour has returned between cycles ...

I just wondered how you are finding your first treatment? What your side effects have been like etc?

 Xx

Hello HopefulMummy. I’m sorry to hear that your tumor returned between cycles. The good news is that B&B is given outpatient so you’ll be able to spend time with your children, especially your infant!

So far B&B has not been too bad. It is on a three week cycle with outpatient infusions on days 1 and 2. You also get a neulasta shot on day 3, which can either be done using a time delayed patch, or you can go into your clinic for the shot. I only live 15 minutes from my clinic so I go in for the shot. As I write this, it is day 8 of cycle 1 so I’ve completed the very first week.

As far as side effects, I’ve had some nausea the first week but never actually got sick. I took zofran (ondansetron) the first 3 days and didn’t have any nausea during that time, then made the mistake of stopping, and was nauseous the next 3 days. I recommend taking the zofran for the first 5-7 days. My stomach felt worse when it was empty.

I’ve also had fatigue as a side effect. I slept through most of last weekend. I need to make more of an effort to go out and do daily walks to help with this.

One other side effect to warn you about is the bone pain from neulasta. I had neulasta shots as part of my BEACOPP treatment in the past, so I’ve been through this before, and have learned some valuable and painful lessons. Neulasta causes your bone marrow to create more white blood cells. The sudden increase of all these cells in the small volume of the bone marrow as well as all of them trying to flow out of the bone marrow can be very painful. First, the bad news. I’ve seen breast cancer patients on the komen forums comparing it to labor. The pain starts 1-4 days after you get the shot (for me it typically comes after 4 days) and lasts about 48 hours. It typically occurs at the base of the spine, the hips, and the upper legs. When I had it, the pain was debilitating, I could barely walk and even needed my wife to help move me around in bed to get comfortable. Now for the good news, this pain can be avoided with care. Starting on day 1 take one Pepcid (20 mg famotidine) with breakfast and another with dinner, and one Claritin (10 mg loratadine) (not Claritin DM) each day. Continue taking these until 48 days have passed since you got bone pain. My “bone pain” started last night (day 7) and all I felt were mild vibrations in my legs with no pain. I have also heard anecdotally that the first bone pain is worse than subsequent ones, so you may feel something during the first cycle. If you do feel something, they say to take Tylenol, but Alleve is much more effective. The issue with alleve is that you shouldn’t take it when your platelets are low, so discuss this with your consultant on day 1 of your cycle to see if alleve is an option for you. One last thing, be careful with dosage of Claritin and Pepcid. While I was on BEACOPP, I took Claritin that was half strength and I ended up having real debilitating bone pain, so make sure that you get the right dosage. 

I have a follow up appointment tomorrow and I’m sure that they will run a CBC. I’m curious to see what my counts are. I do feel anemic. I expect that each cycle will build on the previous one and the counts will get worse each time. 

I hope that you have good results with B&B. 

Thank you for taking the time to reply, I know it can be hard when the fatigue cloud is hanging over you!

I had Filgrastim with my last IGEV and yes the pain was rough! Awful spasms up my back which yes I would compare to early labour!!! Similar to you in being unable to move in bed properly until I fell asleep and painkillers took effect! Have learnt my lesson though and will be taking paracetamol/claritin to help. I wasnt told that I would have the injections with this though... They did mention an antibiotic twice a day, twice a week??

I will keep up with the antisickness then, thanks for the tip!- one of my worst fears getting sick, I usually get Aprepitant/Emend but they said nausea/sickness is usually so mild they would rather I didn't have it so we will see ...

Have my fingers tightly crossed that your bloods come back as good as possible tomorrow! 

Xx

Hello HopefulMummy, I definitely agree that the bone pain can be awful.  I'm hoping that you can completely avoid it this time around.  It is interesting that they have not mentioned giving you filgrastim as part of this protocol.  How long ago did you last have it with iGEV?  According to chemocare.com, bendamustine has a nadir of days 14 - 21, and recovery is days 21 - 28.  Since B&B is given on a 3 week cycle, the recovery week from the previous cycle overlaps with the first week of the next cycle, before the next nadir hits.  I expect that because of this, the overall effect on blood counts will get worse with each cycle since you are starting a new cycle before completely recovering from the previous one.  I assume that they give filgastrim because of this.

One thing that i forgot to mention is that they do give dexamethasone (the same steroid they give with ABVD) on days 1 and 2.  It didn't happen in the past, but for some reason this time, it turned my cheeks rosy for 2 days.  No pain or anything, but my face was flush and felt hot.  I was worried initially that it was an allergic reaction to the B or B, but the chemo nurses recognized it as a standard side effect from the dex.  In my case, the flushed cheeks didn't start until 6 - 12 hours after my infusion.  The nurses did say that if it was allergic reaction to the B or B, it would have happened in the first hour.

I agree with you about the nausea.  While I have fought through most side effects, I have pretty much been a big baby when it came to nausea.  I think that I have let the fear of it get to my head.  So while I do say that I was nauseous during the latter half of the week, it was a mild nausea, but it did suppress my appetite (probably a good thing for me) and I did skip some meals.

One symptom that I have been told that I will get, but have not experienced so far is peripheral neuropathy.  I already have it in my fingers and toes from when I was on BEACOPP thanks to the vincristine.  I don't know what to expect in terms of how bad it will get or when it will start.

Regarding blood work, I'm not sure what to expect tomorrow.  I was slightly anemic before I started treatment.  I do feel slightly out of breath after walking up a flight of stairs, so I expect that the anemia has gotten worse.  Given that the nadir for B&B is days 14 - 21, this blood test will be a little premature, and likely won't tell of the carnage that is yet to come.  The more interesting blood results will come on day 1 of the next cycle.

I wanted to mention that I had to publish my previous post when it was half written and then edit it to complete it.  I wrote the post on my phone, and I've discovered that if the phone switches from portrait to landscape mode, that all of the text I've written disappears.  When this happens, I've just posted what I wrote so far and then went back to edit it.  I mention this to make sure that you saw the full post and not the half post.  I'm not sure if you get alerts when a post gets edited.

While I'm sorry that you are going through this too, it is comforting to know that someone else will also be going through B&B with me. I hope that we can help each other get through this together.

By the way, I'm in the US, on the west coast, so there is a significant time zone difference between us.  It is almost noon here.  I wish you luck with your first infusion tomorrow.  Please post a message if they do anything differently from what I documented in my post describing day 1. While the protocol should be the same, we are under different health care systems, so it will be interesting to see what they do differently outside of the protocol (e.g., filgastrim).  Since this is a macmillan board, nearly everyone is from the UK so your experience will likely be the norm for most people on this board.

On a different note, do you have any updates on your baby?  This has been tough enough for me, I can't imagine going through this while pregnant or with a newborn. You have persevered through it all and I want you to know that you have given me a lot of inspiration.

Best of luck tomorrow.  I hope that it all goes smoothly.

Hi

I last had Filgrastim 2 weeks ago. I may mention what you have said about it to them tomorrow. It is make sense as you say with the later blood count drop and you certainly need to be in the best place possible before the next hit! 

Yes I had dex as well, no side effects from it with ABVD either - will keep the flushing in mind too! I guess our bodies are weaker after all of the treatment we have had so far so more prone to side effects?

And again, I agree I am a big baby with nausea too - wouldn't have thought I got through 3 pregnancies/births (with no vomiting might I add!!) if you had seen me begging for more antisickness during my last IGEV .... :-) 

I'm due to sign all consent forms/go through meds etc just before the infusion starts tomorrow so will let you know if there is any difference in protocol, completely understand what you mean about us going through it at the same time. It can sometimes feel like such a lonely place and as if you are the only one going through it so would be good to keep in touch - even with the time difference! (It's 8.30ish pm here now!)

Baby is doing so well, you wouldn't know that she was so premature, she is gaining weight well though is a bit smaller than full term babies the same age. Not that I can compare too much first hand as I've been avoiding baby groups aka Germ Factory's like the plague! Haha. 

My three kids are my inspiration really, the older ones take everything in their stride! If they can be so accepting of the situation, even if they are a little scared, then I can be too :-)

Not going to say it has been easy being pregnant/having a baby during all of this and that I dont have bad days, but everyone just has to do what they have to do, no matter what the circumstances are! I'm just so pleased she was born healthy, it's amazing what the human body can do..!

Good Luck to you too, I'll be sure to post as soon as I am up to it x

Hi HopefulMummy,

How did your infusion go today? I didn’t get a chance to reply last night. I went into work yesterday for the first time since getting my port in and starting treatment (I had been working from home when I could). I was exhausted last night and fell asleep at 8:30. I did have lots of bone activity last night but no pain.  My knees have been tender over the last few days, but especially this morning. I’m not sure if it is related to the neulasta, the chemo, both, or neither and is just some crazy coincidence.

I’m glad to hear that your newborn is doing so well. She is a fighter too, like her mom.  I remember when our children were infants and how much work it was taking care of their many needs. I can’t imagine going through that and chemo. I hope that you are getting plenty of support from your family and friends. Don’t feel afraid to ask them for help when you need it.

I hope that your numbers were good coming off of the IGEV so that they were able to start your treatments today. I think that you will find this treatment to be much more tolerable than IGEV.

One thing that I didn’t mention earlier is that you should drink a lot of water the first three days. They say that the chemo can kill off the cancer cells very rapidly (I hope that this isn’t just hyperbole) and that the dead cells can overwhelm the kidneys. This is referred to as tumor lysis syndrome. Drinking lots of water will help to flush everything out of your system.

I have my follow up appointment in a few more hours. I’m curious what my neutrophils are after the bone activity that I’ve had the last few days.

Wishing you the best.

Hi Jason

It went ok, infusion finally started at around 4pm. Had Aprepitant & Ondansetron tablets and some piriton and hydrocortisone before starting with Bendmustine. I asked for them to push the piriton through slowly as with ABVD it used to really knock me out - it had much less of an effect going through slowly :-)

I didn't react to either thank goodness though did have a 5 minute panic and we weren't sure if it was my anxiousness or reaction to Brentuximab but it soon went..

So meds wise etc I won't be having growth factors unless my bloods are looking low on day 14. I'll have a few days of Filgrastim if so in readiness for the next round. I have Co-Trimoxazole (antibiotic) to take twice a day twice a week and Fluconazole (antifungal) to take daily. This is apparently a normal preventative to take with the Bendamustine.

I have 3 days of Aprepitant, up to day 5 of Ondansetron and cyclizine for any break through nausea.

We are going to be playing it by ear as to whether to continue with B&B after the first cycle, we want to see a reduction and no growth or I will be going straight to radiotherapy instead. If there is a small bit of reduction we will do the second cycle and try and get an early PET scan before the third begins. Though if all is looking brilliantly I will have 3 full cycles, then a PET and begin priming chemotherapy in order to collect my cells - this is so that we have a choice as to whether I go in for an Auto or Allo SCT. The hunt is already on for a donor so hopefully there will be someone ring fenced for me by then should I need them!

Do you know what sort of transplant your team are thinking may be best for you?

Yes my blood counts were looking pretty good to start, no need for transfusions of any sort. Phew! And yes it seems much more tolerable so far - pretty tired and a bit shaky, don't feel like eating much either (but i have!) . I will take that over my IGEV side effects any day!! Fingers crossed I feel as 'good' after the second Bendamustine later. Due in at 3pm. Hope there are less delays this time!

How are/were your bloods looking? I think the white cells increase before the neuts do so don't be too disappointed if they are fairly low after experiencing all that pain! 

Lots of water going in and making sure I am snacking!

Hope it all makes sense, chemo brain in full swing today but didn't want to wait too long before I replied or I'd probably forget to for a while...!

Xx