Cycle 2 has begun - I guess its Trials and Tribulations #5
16 May 2024Hi from the trenches! We have had a bumpy few weeks including our newish car shitting itself but thats all sorted now (or rather it will be in 3 months time once a new transmission is fitted!). Cycle one involved introducing the trial drug - small, medium and a large dose (the large will be the usual dose). After the third dose, along with the usual fevers, his skin has dried out and is peeling, and, most painfully, he lost the top layer of his tongue, and inner mouth. His tongue was fire engine red and looked so painful. We are told this is the worst and it will gradually improve, and it is albeit slowly. This makes eating near impossible (think of when you burn your tongue on a hot drink - except that feeling stays with you and its your WHOLE mouth). So its protein shakes, smoothies, ice blocks, custard, yoghurts, dairy foods, anything cold. He's dropped 10kg since the start of the trial.
We have oral steroids, steroid mouthwashes and little tablets that can coat the inside of his mouth and tongue which provides some relief. We know it will improve and hopefully go away completely - and its not just Simon suffering this either, its at least 3 of the other 5 participants.
On Tuesday he had a second drug introduced called carfilzomib which will be used in this cycle with the study drug.
So, thats just an update from us. Laying low and trying to make Simon as comfortable as possible! Thank you all for reading my very long essay!
Love Libby x
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Sending love, that sounds very painful. Hope the car is sorted. You definitely didn’t need that.
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It never rains but it damn well pours , on this journey! Side effects our daughter said , this sh*t must be working ! Long term I will be thankful that this was part of my journey to recovery. This was 20 years ago . She is teaching full time , lives on the squash court . Physical reminders remain , but they are skin deep . We have to have hope that you too , do these extremely difficult hard yards , in preparation for a full recovery. ❤️🩹.our sincere wishes for this outcome ! It certainly does happen . ❤️Kindest regards. Jean .
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Thanks for the update Libby. The treatment sounds awful - hope it will improve soon. Maybe it means it's working. All the best to you both and family, Gay
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It must be very tough, and for you as well Libby with children to consider. Sending all the best and better days ahead (my husband also has Myeloma).
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Hi Libby I was grateful you had the time to write an update on Simons journey. I am always so interested in his progress Horrendous side effects he is going thru. That brought tears.
You are daily in my prayers & I hope this next round is more gentle on him & you. It’s so hard watching & knowing there is so little you can do to help other than support. I’m sure he appreciates his family so much. Kia kaha. Robby
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Thinking of you all…..sending hugs and lots of love 🥰