Bendamustine + Brentuximab Vedotin

Thank you Moomy. Hopefully this will be the one that gets it for good and ready for SCT! 

I was thinking that I may mention my cognitive function to the consultant as I know they stressed some kind of dangerous neurological disorders as a side effect. It did cross my mind to call in when I felt quite confused one night but I don't know if I could've put my concerns in to words if that makes sense?! I was (and still am a tiny bit but am improving every day) struggling to say exactly what I mean in words .. Have to really pause and think about what I want to say word for word before speaking. It's worse if I'm asked a question! Or am on the phone! However, I was a bit like that with ABVD and the only thing in common was the IV Piriton I had before hand so it could also be that I guess!

After I was diagnosed and read up about Hodgkin's I realised I had had itchy shins and tops of my feet for a year or two before hand. It was never too bothersome though and certainly not an issue I would have taken to the GP! I'm not sure when this disappeared but I'm thinking it was the first cycle of ABVD...

I only seem to sweat where my mass is/was! And end up soaked all down my front - it's weird you say you wake up before, I think I have too the last few weeks! Though some nights I seem to sleep though sweat free...

It sounds as though you've got it rough with the muscle pain, I really hope it eases for you soon -or that you find a combination of drugs that does the job so that you can have a good night's rest. I found cocodamol good for my csection pain when I was having IGEV. It was 2 weeks after so was more a muscular type pain as everything was knitting back together...I think codiene is safe with low platelets but definitely check with your doctor first!

I do find myself thinking in the evenings about what the next day may hold side effect wise, though think this is because my bloods dropped so low after IGEV, which no one really expected, and I was quite rough with it so perhaps im a bit worried similar will happen! Though im sorry to say I'm asleep almost as soon as my head hits the pillow at the moment, have my three kiddos to thank for that I think! :-)

Must get these kiddos to bed now anyway, tears and tantrums mean it must be time to sleep ;-)

Hope you wake up a step closer to 'normal' 

Xx

Hi Guys,

Thats interesting about the itching on the top of your feet as this too was an area I was constantly scratching before my diagnosis. It got to a point that I was making myself bleed through scratching so hard and what didn’t help was the GP’s I visited on a number of occasions blamed this on stress and put me in a number of anti depressants and even sent me for counselling............grrrrrrr!

Regards

Mark

Mark - anti depressants seem to be a go to with the GPs here too! I'm glad you managed to get one to listen to you properly though, it took me 3 GPs and 5 visits with a lump, swollen axillary nodes and skin changes over the lump to get listened to!! I had not long had a miscarriage so it was apparantly 'hormonal' to start and then an 'infection-"here's some anti biotics" ...Thank goodness the third GP had her wits about her, I was in an MRI scanner within 48hours!

How are you doing Jason? I'm feeling a bit better every day but a bit tired still- I have been doing some night feeds though! 

I have a bit of a rash on my tummy and arm that I'm keeping an eye on, its fairly faint and not itchy but has been there since I woke this morning. Not sure if it is anything to be concerned about yet but i guess I should ring it in if it spreads or is still there tomorrow. I had an all over drug rash after the last IGEV I had as I think my body is starting to react to all the different medications they make you take! It's nothing like that at the moment though thank goodness.

Going to venture out to the village football field for some fireworks tonight, along with my hat, scarf and a chair! Planning to wrap up warm (but not too warm-dont want to encourage a temperature spike! Ha) 

Hope everyone is having a lovely weekend

Xx

On the topic of doctors treating the itch, my doctor also tried to prescribe anti-depressants as well. After a year of this, she went on leave for a family emergency and I saw one of her colleagues. By far then I had a large mass protruding from my chest and a lump in my neck. The doctor started asking questions.

So you’ve been itchy for about a year?  Yes.  Have you had night sweats?  Yes, they started 2 months ago. Any unexplained weight loss? Yes, about 30 pounds over the last 6 months. Any fevers? No. Okay, I’m going to order a chest x-ray for you.

As you can tell from the questions, he already suspected lymphoma. The x-ray showed a suspicious mass and the rest is history.

You should report your rash. Rashes are listed as a potential side effect of the BV.  You may also want to take a picture of it so that you can compare the size later in this cycle or the next cycle.

My legs and knees have still been hurting a lot. My wife occasionally massages them and it helps. In a moment of inspiration last night, I checked online and saw that my cancer clinic has a massage therapist. I start cycle 2 on Monday and will see my oncologist. I’m going to ask him about getting a referral for the massage therapist. I’m hoping that my insurance will cover it.

Have fun at the fireworks. Forgive my ignorance, is there a holiday?

Hi Jason,

Sorry you are still hurting, does applying heat/ice help at all?! I hope you can get the therapist through your insurance! 

It's Bonfire Night(/Guy Fawkes) on the 5th this month so the village had their fireworks and bonfire tonight. I am absolutely shattered after the walk to get there and the fresh air but so glad I was able to go, the children loved it and saw some of their friends from school. I have learnt though that my nice warm knitted bobble hat let's the wind in, so I think I will double up with a scarf underneath next time - my poor bald head was freezing haha ..

I see my consultant Wednesday so will mention the rash then if it hasn't developed further (and all the other symptoms - especially the confusion. Looking back it really seems much more than 'chemo brain..) . I took a picture after your suggestion too, a good idea.

Good luck for Monday! I'm finding myself starting to count down until the next .... Eek ... They come around fast don't they?!

Xx

Hi! 

I haven’t been on the forum in a while!

My husband is now also on this combo.  He just got the 2^nd cycle last week.  Crossing our fingers this is the ‘one’, as this is the 7^th line treatment.  He had 1 cycle of ICE prior and we found out he was progressing, so had to change it up again.  He recently had an MRI on his brain, since he was having pretty frequent headaches, and unfortunately there is lymphoma activity in the skull, brain lining, and possibly a small spot on the actual brain.  The plan is to do radiation on his head, and we should be meeting with the radiology team soon.  My husband considers the most recent development just another topping on the already tall shit sandwich that we’ve been dealing with.  I’m frightened, but I’ve been so scared so many times over the past months that I’m pretty sick of being scared.  I’m trying to continue to be brave for us, but you all know that it’s difficult.  Anyways, my husband has experienced pretty severe fatigue, sleeps a lot for the 1^st few days after treatment, and most recently some puffiness/ swelling from the pre-med dexamenthsone. His skin is dry, and he still has the itch (he’s had the hodge itch for awhile), but seems to be getting better.  He also has his hair growing back from being blasted out from the clinical trial he was on in the summer, and then again with ICE.  He’s got some cute peach fuzz growing in.   He also has some heartburn for a few days following treatment.

I’m proud of him, he’s really handled this all like a champ, and we find that we have to comfort people when we deliver the not so positive updates we’ve been having lately.  We always joke about that after the fact.  I know you all can relate, but cancer is really awful, it’s taken so much away from my husband and I really want him to come out this on top.

Hi Jason (BadgersFan)

Nice to see another West coaster on the forum.  We live in southern California.  My husband was also refractory to ABVD & BEACOPP.  Hope this treatment is the one that beats this thing, and hope it goes well for you.

HI Hopeful Mommy

I followed your story a bit, and can’t believe everything you’ve been through.  I’m really sorry, I wish there was more I could offer for you, but I'm sending you a big virtual hug!  I hope things get better for you and the combo does the trick!

Mark!

Ugh, I’m really sorry to read of your relapse after going through your transplant.  It looks like you started nivolumab, which seems to be well tolerated.  My husband didn’t really have any side effects, and handled it pretty well.  It did shrink some areas, but unfortunately progressed in others, but a lot of people seem to have success with it.  Crossing my fingers for you that everything gets better soon!

Wishing everyone a big fat remission, and hope things start to turn around and get better for you guys. 

Nikki

Hello Nikki, I’m glad that you were able to find this thread on the forum. I’ve found that it really helps when you can talk to others going through the same treatment. It’s also great to find someone else from the west coast on here.

I can’t imagine what your husband and you have had to go through. I took it really hard when I found out that the BEACOPP had not gotten me into remission. I can’t fathom what it must have been like to hear that so many times. As you said, hopefully this is the one. 

I just started my second cycle today. So your husband is one week ahead of me and I’m one week ahead of HopefulMummy. I’m curious, is your husband getting neulasta shots?  I’m asking because I got them, but HopefulMummy didn’t (but that might be because she recently had the shot when she was on IGEV).

Funny that you mention the puffiness. My face is still puffy from when I was on BEACOPP and got all of the prednisone. During my first cycle of B&B my cheeks got flushed from the dex for the first couple of days. That didn’t happen to me with dex when I was on ABVD. We’ll see if it happens with cycle 2.

I had really bad heartburn in the first cycle. I found that taking Pepcid twice a day stopped it completely. Back when I was on BEACOPP, my oncologist had me take it twice a day, everyday of the cycle, so this was not anything new for me. I did talk to his nurse on the phone before doing this in case my oncologist had any concerns.  I highly recommend it for your husband and HopefulMummy.

How many cycles of B&B will your husband have.  When will he have his next imaging done to assess the effectiveness of this treatment? When will he start radiation to treat the tumors in and near his brain?

Well, it is almost 7:30 and the fatigue is really settling in now., so I’m off to bed.

I’ll do another post later describing today’s treatment.

Today was day 1 of cycle 2. Technically my first cycle was one day short, because its day 1 was postponed one day because I didn’t have insurance approval yet. Overall, it went pretty well, aside from one large hiccup (I’ll get to that later in this post).

I always see my oncologist on day 1. We discussed my issues from the first cycle (nausea, heartburn, leg muscle, knee, and shoulder muscle pain, and a recent discomfort  that I’ve been having near my bladder). I did get an appointment for a massage on Thursday for my legs.  The only downside is that it is at another site that is 30 minutes away — I’m spoiled because my normal clinic is on 10-15 minutes from home. There was no conclusion on the pain near my bladder, but I did provide a urine sample.  Maybe I’ll find out the results tomorrow or Wednesday when I’m back at the clinic.

They ran a CBC and chemistry panel. My blood counts were all good and for the most part in the normal range (the exception was the hematocrit, which was only 1% below normal). Keep in mind that I had the neulasta shot and without that my wbc and neutrophils would have been much lower. This is the first time that my counts were this good after the first cycle of chemo. It might be due, in part, to the fact that the BV is a targeted immunotherapy instead of a chemotherapy that attacks all rapidly splitting cells. My chem panel came back ok, but with a few out of range values that they are going to watch.

After the premeds (Tylenol, zofran, dex, and benedryl — the latter two by injection) I got drowsy and restless leg syndrome from the benedryl. After waiting 30 minutes for the premeds to kick in, they gave me BV over 30 minutes and B over 10 minutes, then flushed my port and filled it with heparin and I was done. Just in time for my restless leg syndrome to end, but I was still a tad drowsy. My wife was driving, so this wasn’t a problem.

I took compazine after dinner and zofran at 10 to prevent nausea. 

Now for the glitch. Before we left the house, my wife and I were predicting how long the appointment would be, this was in the context of whether my wife would come back home in the middle of it for lunch and to let our dog out.  I said we’d be done by noon, and therefore she wouldn’t need to make a trip back home. My wife laughed in my face and said that I wouldn’t finish until after 2 pm.  Flash forward to when I got on the floor for my chemo (after waiting to be called, collecting my vitals, collecting blood samples, waiting for and seeing my oncologist).  After at least 10 minutes of getting me blankets, ordering the premeds, and the chemo, the nurse came to me with bad news. They were out of BV at my clinic (I think that I’m the only patient there that receives it) and they needed to transport it from their main clinic so it would be a couple hours. So they let us go out and have lunch and come back.  Ironically, it was just before noon, so I was able to successfully claim that we left before noon :). We came back around 1:30.  When I was all done and was checking out, it was just turning to 3, but they forgot to turn back the clock last weekend, so it said 2 pm and I was able to jokingly claim that I was right again.  So, while my wife was overwhelmingly correct in her prediction, and mine was wrong by 3 hours, I was able to claim in good humor that I was right and she was wrong based on those two technicalities. I mention all of this because it helps to keep a sense of humor when things don’t go as planned.

Wishing everyone well.

Hi Nikki

I have briefly followed your posts too and I'm sorry to see that it has spread to the brain and lining - I hope the remaining cycles of this treatment give it a big kick up the bum!! Will your husband then head for a transplant? I completely get what you mean too about having a joke about consoling others after not so good news, have to find our laughs where we can ;-) And we are all allowed to be scared at times, but you sound like an amazing support to your husband, he is very lucky to have you xx

Hi Jason,

I am glad all went ahead as planned. I just wanted to mention the neulasta shot. I think what I've had is different to what you have had. I had Filgrastim injections every day for 5 days with IGEV but Neulasta sounds like just one, perhaps stronger, injection? I may have to have the injections this cycle starting Thursday depending how my bloods are looking at my clinic visit tomorrow. They want to make sure they are back up in a good place before the next hit but don't like to give the injections routinely as I 'am young' (I don't know why but I hate it when they say that ..) I think from that, that if I were to be older, they would be given routinely.

It's interesting that Nikki's husband and Jason, have both had dexamethasone whereas I haven't. I think the heartburn must be linked with that as I haven't suffered with that this cycle. For heartburn here they tend to give ranitidine. I had a quick Google and I think it's also called Zantac? They both seem to be H2-Blockers and do a similar job though. I'll be sure to ask for something if my consultant thinks a steroid may help with the appetite issues/weight loss I have had. 

Anyway, my littlest has her first set of injections today, boooooo, so best get us ready and out the door.

Sending everyone good wishes also 

Xx

Hey Nikki,

Good to hear from you but so sorry to know your husband has still not had a break, even after the setbacks I’ve had I can’t begin to imagine what you are both going through.  The B&B combo is showing a good response so I honestly hope this is the one that finally gives you both some long overdue good news. I can fully relate to what you say about giving your family the bad news, it’s been the same for me as when I get any bad news now it seems to upset my sister and brother more than me, but it just proves people love and care for you. Being able to still share a joke is important and gives us a bit of an escape even if only for a very short while. 

Good luck, I am keeping everything crossed for you both. 

Regards

Mark x