Bendamustine + Brentuximab Vedotin

Hello HopefulMummy,

Wow, there sure had been a flurry of activity on this thread the last two days. I’ll try to respond to as much as I can remember. 

My team never discussed an NG tube. We actually had a 2 hour class for sct patients and caregivers and they didn’t mention it at all. Given how thorough they were, I don’t think it is standard. 

Regarding the facilities, the hospital that I’m at does several stem cell transplants a month. There were seven couples (including us) at the class I mentioned and I think that they were all getting transplants in January. They have these classes every couple of weeks  

While I haven’t had a tour of the floor, I have learned some details from the class and also talking to other patients who have already stayed there, who all said that I’ll like it there.

I’m not sure if the stem cell transplant unit is just a wing or the whole floor, but I suspect that it is a whole floor since it is commonly referred to as 14K. It is on the 14th floor in a separate building (whose name starts with a K) across the street from the main hospital but there is a sky bridge connecting the building to the hospital on a different floor.

The unit has its own filtered air. The doors to the unit are locked at all times and you need to buzz in. Only healthy people are allowed in, and there are strict rules about washing hands. I can’t remember for sure, but I seem to recall a previous resident saying that visitors are also required to wear gloves. There is an age restriction on children, but I don’t remember the specifics because my children are over the age limit (15 and 18). Visitors are allowed in 24 hours a day. Plants and flowers are not allowed in the unit due to bacteria.

I don’t know how many rooms there are, but I suspect that it is at least 15 based on the size of the class. I think each room has separate ventilation. Each room has a private bathroom with shower. That bathroom is only for the patient. Visitors are supposed to use a separate public bathroom in the hallway. This is to avoid spreading germs.

Meals are prepared in a separate kitchen than the one that prepares food for the cafeteria or patients in the rest of the hospital. This is for sanitary reasons. There is also a refrigerator for storing food brought from home.

HopefulMummy, I’m a little surprised that you will be in an isolation room that is part of the same ward where they give chemotherapy and that unused isolation rooms are used for giving sick patients chemotherapy. Did I understand that correctly?

Have you gotten a Hickman yet? If not yet, then do you know when? I wish you luck with stem cell collection. What is your first potential collection day?  Are you getting TBR?  If so, when? When is your first day of BEAM?

Hoping you produce many pain free stem cells and are ready for collection. Take care. 

Jason

Hi Jason,

Yes those rooms are used for that reason if they are free :-( 

Well I think I no longer need a Hickman and they are going to give me another PICC - I hazily remember a phone call the morning after my cyclophosphamide and someone told me they will go with a PICC as they can fit me in sooner and because the PICC team re-reviewed the fact that my last two lines were taken out before the results came back as cross-contamination (so no actual infection present)

I think I got my dates a bit jumbled last time - first day of collection will be Wednesday 30th. Blood test and any infusions needed on the 29th. No, I'm not having radiation as part of conditioning, but will have three weeks radiotherapy some time after discharge (no dates for that yet!). They have given me a provisional date of 7th Feb for admission but have said I will need to call the ward in the morning to see if there is a bed for me and they may have to rearrange. They said it may be quite likely they need to rearrange due to the number of infections/people needing the beds at this time of year ... Not sure if BEAM will actually start that day as by the time I call (10am) and make it down there, have all of my admission stuff done, it will be late afternoon/evening. 

No pain just yet, but guessing my bloods are trying to drop after the cyclophosphamide today too, so perhaps they will start to rise fairly quickly over the next couple of days. Feeling better today - have even got dressed! A step further than the kids who have said they want to have a pyjama day today! 

Xx

I didn’t realize that you were getting the BEAM inpatient. For me, the BEAM will be outpatient with admission to the hospital on the last day (M) with the sct starting the next day, starting after st least 24 hours have passed since completing the M. Of course, if I have a hard time with the BEAM, then I can get admitted earlier. 

So you will be in the hospital for Valentine’s Day. Will you and your husband celebrate before hand?

Like you, I’m not getting TBR. The original plan was for me to get localized radiation after the transplant, but after seeing the results from my pulmonary function test, my specialist said that we might need to skip that if my lung function doesn’t improve. 

So are you or your husband giving you shots over the weekend?

Good for you getting dressed today, but ironic that you did it on pajama day ;)

I went into work, yesterday, for the first time since October when I started B&B. I was working from home through out that time. 

I’m glad to hear that you haven’t had any bone pain yet. Let’s hope that it continues that way.  Take care.

Jason

Yes, there is no outpatient accommodation at the hospital so all inpatient. 

We don't really celebrate Valentine's day! Though I never say no to chocolates or flowers ;-) This Monday, 28th, is also our 15 year anniversary (we aren't married but still keep tally!). We don't have any plans due to the number of appointments but we have spoken about having some kind of celebration/party once this is all over (and I have regained strength and have a bit of immunity)! The kids also missed out on a lot last summer and haven't had friends over as much as we'd all like, so we were thinking a big do for close friends/family and some of their school friends with bouncy castles etc just a bit of fun really! Have even thought of turning it in to a bit of a fundraiser too so I can 'give back' to a few charities that have helped us along the way :-)

I've been doing my own injections at home, I have had to do daily clexane since starting chemo while pregnant and have had to do them twice a day since a blood clot with my second PICC. So adding a third injection in is no problem ..! I get through sharps bins like a pack of biscuits!! Haha. 

Oh wow, I bet that felt odd! But I guess you have been keeping in touch if you have been working from home? What is it you do? It's really good you have managed to keep working on your 'good' days. As I am on maternity leave at the moment, I don't have to think about work until September at least! I work in a bank so am a bit worried about returning - not just dealing with the public and possible germs but everyone knows money is germy too! 

Xx

You’ll need to say no to the flowers while your immune system is gone due to the risk of bacterial infection. Get your flowers now, while you can. 

Congratulations on your 15th anniversary. That is a big milestone. Since you didn’t marry, is this the anniversary of your first date?

Sounds like you are planning a fun party for the kids and their friends. It will be great if you can raise some money for charity. 

I’m a software engineer, so I can work from home quite easily. My management have been very supportive of me. Other people picked up the work on the projects that I was leading back when I was first diagnosed back in March and have kept me off the schedule so that I won’t have any deadlines and can work on stuff at my pace on good days. There are some days where I just check email, or review design documents or code changes. Other days I’m coding or working on designs. When I have breaks between treatments then I make a bigger effort to go into the office but typically work half days then due to low energy and endurance. Yesterday I worked from home in the morning and then went into work at 2 for a design meeting to discuss an issue that I discovered earlier this week that wasn’t getting resolved by email. The one other benefit is that I’m free to work my own hours, so I can take breaks and nap as needed.

I did take a 6 month short term leave of absence last year when I was on ABVD and BEACOPP. I was expecting to be in remission after that, but it didn’t work out that way. So I need to work for now and when I get my sct I’ll need to go on long term leave since you need to work for a year before you can do short term leave again.  The difference between short term leave and long term leave is that short term is limited to 6 months and you get full pay, whereas long term leave can be longer than a year but you get half pay. We have enough savings that I’m not concerned about the reduction in pay. My specialist said that I should request a 3 month leave and I can extend it as needed. I’m leaning towards requesting 4 months since I don’t want to have a setback by rushing back to work.  So ironically my short term leave may last longer than my long term leave.  One benefit of delaying my sct is that I hadn’t filed the paperwork to start the long term leave.

I understand your concerns about working at the bank. As you said, you have to worry about germs from customers and the money. Do you have a chair to sit in behind the counter, or will you need to stand for your whole shift? I imagine that fatigue will also be an issue when you first return to work. 

Wishing you well. 

Jason

Again interesting, my SCT team insisted on me having a Double connection Hickman Line as they said it was more trustworthy for putting the precious cells in. The Consultant Surgeon who put it in said that a large double connection PICC would do the same job but my SCT team were not having it.

moomy often calls SCT ‘The gift that keeps on giving’ The initial gift is life........but you then get the crap gifts like infections......but also miss out on special occasions.

I was in hospital with my third cycle of chemo for our 35th Wedding Anniversary, I was just out from my second SCT when it was my 60th Birthday....I have no memory of that one even although I can see pictures and it was 18 months later before we actually had a celebration and being in hospital a few weeks back has resulted in me getting a few months ban on flying and going abroad so our 40th Wedding Anniversary has had to be put on hold........but it’s a small price to pay for life.  

Morning,

We count our anniversary as the day we kind of decided we were an item if that makes sense! We never really 'dated' as we met through friends while I was in high school! 

Hopefully my brain will be up to organising such a party! I will certainly try to hand out some jobs on the day so that I can enjoy it too :-)

Your leave seems a bit complicated but that could be because my brain is not quite functioning fully since Monday! My company give you a number of weeks 'allowance' for paid sick leave, depending on the number of years you have worked for them - before I went on maternity I was only entitled to 18 weeks but now I have been employed for another year, I will be entitled to 26 weeks upon my return. I also have to provide a note from my doctor outlining the reason for not being fit for work (a 'fit note') and these are usually given for a month or two at a time, then you need to see the GP again for another.

Thankfully, I do sit at the counter at work, though I used to find it quite tiring mentally. I used to take on a few extra roles as well as serving customers (colleague engagement, 'skype' type calls/conference phone calls, emails, attending out of office meetings etc - I was also invited to travel across the UK to meet some of the bigger bosses - all expenses paid ;-) - not sure my brain would keep up with all of that on top of my normal role any more though!!) . Your job sounds as though you need your brain to be in gear too! It's good that you are given the opportunity to work from home, I guess it will make the transition back to the office or back to full time a bit easier?

And yes Mike, it's a shame that I may be in hospital or unwell for some events but as you say, the gift of life for us is more important at the moment. Hopefully I will be given many more chances to celebrate the things I will miss out on. I have just realised it will also be my 5 year olds first Eisteddfod at school while I am in/just got out. (Eisteddfod is a Welsh thing where they either sing a song or recite a poem solo on a stage and get judged and awarded prizes. Very proud of my eldest who usually comes in the top three!) I never miss school events where they are performing or doing something, I am hoping that the school can video it and send it to me!! 

When is your next Brent Jason? And how did you find your first one without the Bendamustine?

Anyway, I hope everyone enjoys the rest of the weekend. 

Xx

I had my second dose of BV today. My wbc was 3.2 which is just a little below normal. My neutrophils were 1.5, which is borderline neutropenic. 

I think that I mentioned earlier that my wbc and neutrophils were below normal with my first cycle of BV as well, even though I had just had growth factor shots 2 weeks prior and it had been 6 weeks since my last infusion. My specialist decided that we need to put the sct on hold indefinitely. He’s concerned that BV by itself won’t keep me in remission long enough for my bone marrow to recover, so he wants me to get radiation treatments instead and then another pet scan sometime after that. While I’m getting radiation, I won’t get BV. He’s concerned that the central line (i.e., Hickman) will be a potential source of infection, so I’m getting it removed Monday afternoon. I’ll still keep my port. 

I’m still trying to get my head around all of this. I’m still not sure if this is a good thing or a bad thing. My initial reaction was that it is bad. He did dangle a carrot. About 20% of people getting B&B are “cured” by it and don’t need a stem cell transplant. If my next pet is still negative after the radiation then that means that I fall in that 20% group and won’t need further treatment. While anything is possible, given my track record so far, I expect that I’ll fall in the 80%, but will be very happy if I’m in the 20%.

What I don’t have a clear understanding of is what are my options if my pet is positive. Will we be able to do an auto or allo sct then?  One reason that I’m concerned is that the pulmonary function test showed that my lungs are about 50% of what they should be. At the time, the specialist said that after having beam, I probably won’t get radiation because there will be too much damage to my lungs by that point. So now, if I get radiation first, does that mean that I won’t be able to have beam or must have a significantly reduced dose of beam? I need to collect my thoughts and then email him my follow up questions. It hasn’t been scheduled yet, but I’ll probably have a consultation with the radiologist next week and I’ll ask him about this too. 

HopefulMummy, how has stem cell collection gone for you?

Jason

Morning Jason (from a very cold/slightly snowy Wales!)

Our bodies - and specialists! - certainly like to keep us on our toes don't they?! 

Sorry to hear your SCT has been put on hold indefinitely. But fingers crossed you fall in to that 20%. A very good idea to ask your questions, hopefully you will feel a little more reassured once they have been answered. It's really hard, but your specialists have been fairly accurate so far (as in BV will get you a clear scan and it did!). It's unnatural to trust another person with your body 100%, but let's hope the radiotherapy does the job! 

I am off for second day cell collection today. Had to leave home at 6am again to get there for 8/8.30! *Yawn*

Xx

Oh, to answer your question properly - far too early for my brain! - they estimated I need '3.4' to be collected. Yesterday's prediction was 1.8 so back for a second day today. They didn't want to test what was collected yesterday as they didn't want to waste any (I only collected 50/60ml) so they will test today. I've not had much pain so I am a bit worried. I went very tingly when they disconnected me but that disappeared after a couple of calcium tablets and had gone by the time I got home a couple of hours later.

Will be thinking of you, do let us know what your consultant says

Xx