Well, sorry for the delay in blogging- it’s not been the best of times. I think my expectations of how these drugs behave needed better management. Honestly I think I’ve had just about every side effect listed for Levitinib.
First, the dry mouth then ulcers in mouth. The roof of my mouth has been so painful I could not eat solid or dry foods. My skin became dry and peeling. I had headaches nearly every day. My joints and muscles ached awfully. And the fatigue is just ridiculous. Some days it’s all I can do to walk down the garden. My appetite went off and lots of food seemed unappealing. And I was so miserable and wondering what the point was. I’d got through chemo and that had been hard, but this was cruel. Up one day, hitting the floor the next. I actually did wonder if it was worth it. I had stomach pains and although not the same as before I began to worry if they were the cancer itself causing mischief. Sometimes I felt slightly desperate.
To get some control back, I developed a rating scale of my feelings, depending on side effects and pain - ranging from 1 (stop the drugs and let me die) to 10 (Cancer? What’s that?) - in the middle there is 7 - feeling good, but know I’m managing side-effects; - and 6 (not great but not awful and 5, (feeling pretty rubbish but trying to smile through).
It’s really helped me get a grip. So has having great friends to lift me and remind me it is worth battling through.
Five weeks into my 6-weekly treatment cycle and I had a review with my oncologist. Bloods not conclusive about much but she thought the main effects were being caused by the Lenvatinib. So she decreased the dose from 20 to 10mg. Also asked me to monitor my BP because of the headaches. So we duly bought a monitor and began recording BP twice daily. After 5 days it was clear my BP was persistently high, as the Diastolic was higher than 100 every time and reaching 120 once.
i duly went for treatment 6 and there received the news that my TSH numbers were problematic (I wasn’t producing enough thyroxine) and they needed to speak to my oncologist before I could have my Pembro. Suddenly I felt so emotional. I told the nurse about the BP too and she took all the info to consultant who prescribed Ramapril, Bendroflumethiazide and Levothyroxine. And better still, decided to stop the Levatinib for a week, till after Christmas. I couldn’t help but burst into tears with relief. Then dared to ask about my cancer markers. I’d been so down I wasn’t expecting any good news. But yes! They were down from 2,100 to 1,1184!! I could hardly believe it. What fabulous news. So it had been worth it. The treatment was working. And it’s now just a case of getting on top of the side effects.
Quite a nice Christmas present really. So happy. The Blood pressure has normalised and I’m feeling a bit less tired and my mouth is healing. I feel more positive and look forward now to seeing those numbers tumble even further. Onwards and upwards- I’ll keep you posted.
