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My daratumumab therapy started
Last Tuesday, my daratumumab therapy started, so I thought I'd give you a quick update. Actually, there is not much to report yet anyway, but I'll just tell you how the first infusion went....
I spent all day at the hospital on Tuesday
On Tuesday early morning, Steve drove me to the hospital in Lucerne and I went to the hematology ward where I get my treatment. I'm usually treated at the neurology ward, but nobody there knew daratumumab, so we decided to do the therapy at hematology, where they are very familiar with the drug.✨
The hematology ward is in a brand new part of the building and everything is modern and nice looking. I first had to go for a blood draw and to get this nice little iv access put in place. Daratumumab is actually incjected under the skin, so I didn't need the access for this,💉 but the docs need it in case you have any adverse reaction and they need to give you drugs quickly.
First I got some drugs to prevent infusion reactions
After that I was sent to my infusion room. I had a nice room to my self almost all day and I was sitting by a big window. An hour before I got the actual daratumumab injection, I got some drugs to reduce the risk of an allergic infusion reaction.
They gave me 20mg dexamethasone, which is a pretty high dose of a drug similar to cortisone/prednisone. Dexamethasone is also given to people with severe COVID, but that just as a side note. I also got an iv antihistamin called clemastin, an asthma medication called montelukast, as well as some paracetamol.
Then daratumumab was injected into my belly
Daratumumab is given as a subcutaneous (SC) injection. It can also be given as an infusion into the vein, but it's easier and better tolerated if you get it subcutaneously. In the pitcure below you can see what a SC injection is. Basically, the drug is injected into the fatty tissue under your skin, typically into your belly or an upper leg or so.
Many drugs are given as SC injections, such as insulin for diabetes.💉 Usually it's very small amounts of liquid that are injected over a time period of a few seconds.
In case of daratumumab, it's actually a pretty big syringe of 5 ml. The nurse put the needle into my belly and then sat there for about 5 minutes slowly pushing in the liquid. There was another nurse there too, who was being trained on the ward, so the two of them tried to distract me a bit and asked me all sort of questions about my neuropathy.
We had a chat about my illness, and obviously they both had never heard of it too, but they were interested. It looked a bit strange having this syringe stuck in my belly for 5 minutes,💉 but the injection itself doesn't actually hurt. So if you ever need daratumumab, I can tell you - the injections are totally managable. I'll try to take a picture of the syringe and/or the injection next time.
After the injection I basically just had to sit there for 6 hours, and every 15 minutes or so a nurse came in to measure my temperature and blood pressure to make sure I didn't have an allergic infusion reaction. Thankfully I didn't.🙏🏻
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| This was my companion for the day, following me everywhere. |
When I left the hospital I noticed some side effects
Around 5 pm I was ready to go and Steve was waiting with the car. As I walked through the hospital I noticed that my vision was super blurry and I had a hard time finding my way around.👀👀
The nurse had already warned me that this is a frequent side effect of the antihistamine, but I was actually fine all day. I also don't recall having had this the last time I got these drugs - but as always you have to stay flexible, right? 🙃
After we got home we ordered some food and were watching 'Home and Away' on TV. Home and Away is an Aussie soap opera that we like to watch. I told you before, Steve is Aussie, and a few years ago he found this soap on one of our TV channels and started watching it for some homey feeling and beach views.😃And now he got me totally addicted to it too. 🌺
Luckily this soap is totally predictable, because I sat there and actually couldn't even recognize who was on screen at all. I could see sharp within a radius of about 10cm, but anything in further distance was just one big blur. I was still really tired from the drugs anyway💊, so i just went to bed, ready to wake up with vision in the morning.
But turns out I was basically blind for almost two days
When I woke up the next morning I could still see absolutely nothing.😩 In the search for some entertainment, I started organising my blog, holding the screen of my notebook about 10cm in front of my face.
This was probably not the smartest thing to do, because my eyes didn't seem to recover but actually got worse. So in the afternoon I even had trouble reading my phone and I parked myself on the lounge and listened to some podcasts for the rest of the day. FINALLY, towards the end of the day I noticed that objects started to have contours again. And on thursday when I woke up my vision was back👀🙏🏻
How am I doing now?
I didn't have any other side effects from daratumumab so far, except for a slight bruise on my belly and a very mild headache occasionally.🤞🏼🌺 Compared to the IVIG (immunoglobulin) infusions I've had previously, it's been a walk in the park so far. IVIG infusions have actually traumatized me a little, because they've regularly put me to bed for days and weeks with the worst headache ever and pretty severe nausea. I'll write about these infusions another time.
How is the neuropathy going?
That's a difficult question 🙃The tricky thing is, that daratumumab has neven been used to treat small-fiber neuropathy, or at least not that I know of. So nobody can tell me what to expect at all. My neuro keeps telling me that he finds it very interesting. 👻
I appreciate that he finds it interesting and stays tuned to my treatment, but everytime he says this it just hammers in the fact that there is nobody outthere knowing what will happen. But that's just how it is and I've been dealing with this for a while now....
I try to tell my brain not to analyze every single symptom all the time, but obviously BRAIN🧠🧠 has it's own agenda and it likes to over-analyze.🧠🧠🧠 So far, BRAIN has not come to a conclusion yet though.
For the first two days I didn't notice any difference at all. Then, from Thursday on I felt like my symptoms got a bit more intense. But then again this could just be because BRAIN likes to focus on them. Realistically, I will not see an immediate effect anyway.
With autoimmune small-fiber neuropathy, some immune cells distroy the neurons of the small nerve fibers. So even if you stop this immune reaction, the nerve fibers would need some time to recover. And the more destroyed they have been the longer it will take for them to recover. The one good thing about small nerve fibers is that they actually regrow throughout your life. This is not the case for large nerve fibers.
When I had prednisone treatment, it took about 3 weeks until I could definitely notice a difference - so this is kind of my reference for now as well. So I guess I'll just have to wait and hope (🤞🏼🤞🏼) that it will do something. You'd think that these infusions sound unpleasant, but for me the wait after is a lot worse than going to get some infusions....🌺
Either way, I'll keep you posted on how it's going (🤛🏻🪵🪵) and hope you have a good Sunday!
BTW: For those who subscribed to my blog, you probably noticed that the email design has changed. This is actually what I did semi-blind on my computer on Wednesday morning, so I hope you appreciate it.😂 Many of you told me that my old emails looked like spam, and I totally agree. I think the new ones look a lot better - so 🤞🏼they will work as they should.🌺
2 comments:
Let's hope you'll notice a difference soon!! The vision issue sounds pretty scary... glad it passed!!
Keeping my fingers crossed for you that this treatment will be helpful.🤞
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