Hiya Everyone, I know I haven’t been able to post much recently but I’ll go into it more later in the blog but I want you all to know I am alive somewhat but I’m just having a real tough time of it. This Folfox is no joke and I am now 2 days away from being reconnected and starting the process again for round 4 and I’m not ready in the slightest.
It’s Monday today, it’s about 10:00 and all I can think about is that I have the nurse coming in about 5 hours to take bloods for testing so they can work out 1. If I am able to have chemo this week and 2. what the prescription should be.
Today is the first day in 4 days that I don’t have a headache, it’s been awful over the last 72 hours, one constant headache like the migraines of my youth. As a rule I don’t get headaches, I’m quite lucky in that respect. When I do get a headache it’s killer. A lot of you know I don’t eat chocolate like EVER EVER EVER and I never have, I think I was about 7 or 8 when we found out it was a trigger food for me, for the same reason, I don’t eat aged goats cheese the smell of which is enough to set off a migraine attack for me.
If it’s a bad attack, I actually get migraine sickness too, it’s rare but the world spins, I vomit etc etc and it’s hell on earth.
Well, enough about that but suffice to say in the ‘Chemo fortnight’ I have been experiencing migraine attacks in the second week. I’ve had to go through my side effects with Dr Pedley (My oncologist) and Dr Kuhan (Care Oncology Clinic – My Metabolic Medication trial) recently so I thought it best to let everyone know and me document it in my blog too.
So mainly, on Folfox I have been getting your standard chemotherapy side effects, thinning of the hair, skin and that can come everywhere, my hands, feet, groin, I immediately lose my ‘chef’s hands’ ability to pick up hot items, I start getting wicks or hangnails on every digit and you absolutely must deal with them and never ever pick at them because you’re just asking for an infection on chemo. I try as hard as I can to use the Udderly skin cream that the nurses provide to me. I have like bottles of it stashed everywhere and not being very versed in using skin care products (I think I’ve just been lucky to have good skin throughout my life) I had to learn that less isn’t always more, just slap it on and if it’s too much then it’s too much. Quite tickled me in the beginning if I am honest. I think I have it down to an art now.
Next on the side effects would be the nausea and vomiting, I really do have that controlled with Metoclopramide, it’s a wonder drug and it really stops it for me.
However, the heartburn, I actually during specific times of the chemo fortnight, I actually take Omeprazole as a preventative, I know I am going to have heartburn for the first 7 days so I just add it into my morning pill box and just take it. Sometimes it scratches the surface, sometimes it deals with it completely. I know not to have a morning coffee, or marmite on toast on these days.
Then we get onto the Folfox specific neuropathy pain, this is something I am only 6-7 weeks into beginning to understand.
Again, this is something that depending on where I am in the chemo fortnight depends on how bad it is going to be.
The first 10 days of chemo it’s awful, nothing cold can touch my skin, something I would consider to be warm will burn me to the touch, a coffee drank the day before chemo would be impossible on the day after chemo.
When Folfox was first being described to me I don’t think I played it down or anything, I think I underestimated how bad it was going to be. There are days where Kerry constantly hears me swearing and crying out constantly. There are other days where I’m good and I am doing the dishes and it doesn’t bother me, again depending on where I am in the cycle. I really can’t describe it though, it’s not quite like electric shocks but I honestly don’t know how else to describe it, the pains don’t immediately go away after you’ve touched something either.
Then there’s the headaches that I can’t describe well either, if I cough, if I sneeze, if I yawn I have to be quick but I get a searing pain behind my eye, it always seems to be my right eye but if I can get my hands to my head and sort of press my face/eye it can stop the pain from being too bad. I get this for perhaps 10-12 days of the fortnight, but the dizziness, the world spinning when my head is tilted to a specific direction, that sucks too.
So, upon hearing about all of this, Dr Pedley agreed to reduce the prescription of my chemo drugs by 20% if I am honest, now that I have had a full chemo fortnight (Nearly, 2 days left) with the reduction. I felt very little difference between the two doses. Dr Pedley checked in on me a couple of days ago, and he has decided to move my scans forwards. They were due in about 6 weeks time, however he is concerned about all the headaches and specific pains and dizziness that he would prefer that we get a scan on my brain asap.
The CT Scan is on the 24/03/2021 and the MRI on my head is actually today. It’s at like 17:00 today and I can tell you I’m a little preoccupied by this, if I am honest… It’s all I have been thinking about. The bloody migraine headaches I haven’t had since I was a kid and the dizziness. It’s scary, I know that brain mets aren’t the death sentence they once were but I just don’t want it to be anything more than chemo side effects.
Dr Pedley said that he’s 99% sure it’s the drugs that are making me feel this way but we have to be sure. I mean it’s encouraging to hear that but we won’t know until we know and I just need to not dwell on it.
So I have had my quarterly review with Dr Kuhan from the Care Oncology clinic in London, he’s happy for me to continue with the drugs, I seem to be suited quite well to this so they continue on as normal.
I’m sitting at my computer for the first time in nearly 3 weeks, I’d forgotten what it looks like to be honest. I’ve not been able to play a video game or join a group call with friends for so long now. I’ve had to cancel out of the last 2 group calls in the final hour because I just couldn’t sit up and talk let alone play a video game together. Kerry’s joined them and given my apologies but it’s shite not being able to catch up with everyone.
Well, the next steps for me all hang in the balance of the results of the CT and MRI scans. If the mets in my lungs have decreased, we could be looking at Cyberknife or SABR. If they haven’t then it’s more Folfox and a rescan in another 6 sessions.
I thought I may be able to put a little more into this blog but I’ve had enough computer screen for the day and I think I’ll go see what’s on that TV screen for a bit.
I hope you are all well and looking forward to coming out of your COVID-19 caves.
Be Excellent to each other
One thought on “Side Effects – Scans moved up – Next Steps”
Not often I can offer help but as someone who has done serious acid reflux, can I suggest you try Esomeprazole rather than Omeprazole? The active drug in both is the same but with chemical compounds you get isomers, which are essentially the left and right hand mirror images of the same chemical structure. The ‘S’ isomer is the one that helps with reflux. Omeprazle contains both ‘L’ and ‘S’ mirror image molecules, Esomeprazole contains only the active, ‘S’ isomer.
Ask for Esomeprazole.
Sorry for being sciencey!
Nice to hear an update, we’re all still rooting for you. Lots of love x
Reference if required: https://pubmed.ncbi.nlm.nih.gov/12018920/
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