Brentuximab, Baby

Sorry I haven’t posted in a while. Had a serious lack of enthusiasm and energy for most things lately. Might be the cumulative effect of all these drugs. Or having the kids around 24/7 because of school holidays. Or the long hot barmy summer days (…not!). I have managed to sum up the energy to tweet every now and again, and those who follow me on Twitter or look at the feed on the sidebar of this site from time to time will have a pretty good understanding of whats been happening. Which I am happy to report is ‘not too much’!

Brentuximab 3 was given to me on the 22 July as an in-patient. I was admitted to the ward on the Thursday evening and pumped full of premeds 300mg of Prednisolone [Wowcher!] and a load of IV fluids throughout the night and morning. Then just before the dose of Brent I had a hit of IV antihistamine. It worked a treat and I had no severe adverse reaction. Docs kept a very close eye on me. I was kept in for the Friday night for observation and was given parole early on Saturday.

Brent 3 wasn’t totally smooth sailing as over the following 4-5 days these side effects came and went:

  • a bumpy hives type rash on arms and torso
  • inability to see further than 10m (think it was the steroids and fluids)
  • extreme lethargy
  • painful wrists, achey bones
  • nausea
  • peripheral neuropathy (pain/pins & needles type feeling in arms, legs and hands)

Once I had mostly got over these I felt pretty good, absolutely no lymphoma symptoms, so I am quite confident that the Brentuximab is continuing to do its thing and is working to keep me in remission!

Because Brent 3 went well the docs decided that they could risk giving me Brent 4 as an outpatient. So I was given the same dose of Prednisolone to take the night before and 1st thing in the morning, then went into Ambulatory Unit (chemo outpatient dept.) last week Thursday. All went according to plan and after waiting around for about 4 hours to see if I’d have an allergic reaction ….or grow a 2nd head… I was allowed to come home. Side effects were pretty much snap to the previous time – if maybe a bit more severe – there is often a cumulative effect from these drugs and they get harder and harder for your body to tolerate. I had this with ABVD.

So that’s it. Brentuximab treatment is now done and dusted. Next up is a final PET scan just to make sure I’m still in remission, then I’m due in for the hard-core conditioning chemotherapy (BEAM) followed by the autologous stem cell transplant starting August 31. The chemo goes on for 6 days during which time I’ll be staying in the hotel on top of Jimmy’s hospital and going down to the Ambulatory ward every day for meds. Then on the 7th day (called Day 0) I’ll have my stem cells reintroduced and be admitted to a sterile ward where I shall be in isolation until my white blood count recovers. This can be anything from 12 days to a month [Double Wowcher!].

As for the ‘tandem transplant’ scenario I touched on in my previous post, I was supposed to have a meeting with the transplant team yesterday (Monday 15th) but the hospital had to cancel as the consultant is poorly this week. A real bummer as I was looking forward to finding out more about the possibility/advantages of an allogeneic transplant and get the ball rolling with finding a matching donor. The meeting will now be rescheduled for I don’t know when, but there is only a limited time left between now and when I am due to go in for the auto transplant. No idea if it will actually happen or not but I guess I have to do what the docs recommend will give me the best possible chance of a lasting remission. As I’ve said previously – failure is not an option!

Tomorrow I am being whisked off down to Devon to spend a couple of days with Emily’s nan (we haven’t seen her for ages), then on to Wiltshire to Ems mums place to celebrate her birthday with her. We’ll be leaving the kids with her and Em and I are booked into a hotel in Dorset for 2 nights to celebrate my 46th birthday. Very much looking forward to the coming week. I haven’t been out of Yorkshire for over a year. It’s going to be a much-needed break away from everything. Hope the weather holds up. I will be using the time to recharge the batteries, get myself as fit and strong as possible and face what lies just ahead…


Emma Nabarro-Steel

Hope you all have a really lovely break in Devon/Wilts/Dorset. See you in autumn! Lots of love Xx

Lisa mcloughlin

Enjoy the trip Clive. It’ll be lovely to get away for the week for all of you x


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