Last week Monday’s visit to Jimmy’s was run of the mill. Went in, had my Gemcitabine, had a sleep on the ward then again in the car on way home. No big dramas. But I do believe Gem is no placebo now – I can feel the cumulative effects slowly but surely building up, and noticed a larger amount of hairs than normal in the bath (the formerly curly/frizzy hair got the chop about 2 weeks ago, so I’m back to short and styled). Don’t think it’s looking much thinner yet, not that it bothers me, I’ll just shave and get the head-gear out.
Steroid wise, at that stage I was still on my 25mg Prednisolone but was told to cut back by 5mg every day until I was ‘clean’. I’m chuffed about this, I really don’t like Pred – it gets you out of a spot but comes with downsides (mood issues, sleeping issues, anxiety, swelling, cramps). As I’ve said I have been taking lorazepam from time to time to take the edge off and relax. Also not a good thing to do long-term…
The cramps
Around mid-week I started getting major cramps. My fingers & toes kept sticking down – agonizing and a bit freaky – and I had a couple of severe calf muscle cramp incidents. One time we were all by the front door putting shoes on about to go out. Daddy ended up on the floor writhing in pain with the kids looking on. Must have been a bit stressful for them. Afterwards and for the next 48 hours it was hard to walk. I’ve been kinda hobbling around, using the banisters for support, sliding down the stairs etc. I’ve had a couple of G&Ts which seemed to help (Quinine is great for cramp), lots of Emily’s Forever MSM gel and Aloe Heat Lotion (both amazing) and frequent leg messages by both Em and Caitlin (the latter for a small fee). Hot baths also help. On top of the post cramp soreness, any form of activity unless taken extremely slowly gives me muscle pain about 24 hours later …like I’ve been pumping iron down the gym.
Had mild nausea from time to time. Nothing too bad. Eating something always helped (I’ve been eating like a horse!)and when not I’ve taken an anti-sickness tablet metoclopramide.
Friday was back at the hospital for a blood test. I was pretty sure my platelets would be low again (slight platelet rash on lower legs, bleeding when blowing my nose) and it was. Should be 150+, was 11. I was given a bag of the stuff (looks like Apricot Jam) and had my PICC line dressing changed & flushed. My mineral levels were all checked and Magnesium, Potassium & Calcium were all within normal range. So to me that kinda proves it’s the Prednisolone that’s been causing the cramps. At least I’m off it now so things will hopefully improve.
The family had a busy weekend. Caitlin and I went off to a football match on Saturday morning (Guiseley Girls Under 10s). Emily had a Forever Living stand at a Pregnancy & Baby fayre in Ilkley. On Sunday despite not the greatest weather we got down to Aldi early, bought a few ‘clever’ garden items and spent the day (slowly and gingerly) pottering in the garden. I did pay for it Monday but was worth it…
Then Monday 8th it was supposed to be back for round 3 of the chemo, with the addition of Cisplatin chemo which would make it a full days visit once all the pre and post-fluids are pumped through me. Cisplatin needs to be flushed through fast or it could damage the kidneys & liver. But again my platelets were flat-lining (7!). I was given 2 bags of the apricot jam (AKA platelets) while doctors were on their way on ward round.
No to Cisplatin
The big news is the consultant has decided that it was too risky to administer any Cisplatin with such a low platelet count, and also the fact that it really hammers your platelet counts moving forward. So in effect Cisplatin is now on hold indefinitely, they will proceeded with just the Gemcitabine (along with a small bag of a steroid called Dexamethazone). Then is a couple of weeks they will re-scan me with the PET-CT. If this drug is working on its own, great. If not I guess I’ll be loaded up with a bag of platelets every 2nd day and then given the Cisplatin. There was also a brief mention of a bone marrow biopsy to see why I’m not producing enough platelets of my own. Or if I am where its going. It does concern me as to why my platelets are so low these days. Somethin’ aint right. I feel like an old ’80s banger with an engine that constantly leaks oil.
After some though I’m happy with this arrangement – the less chemicals I have put into me to get me back to remission the better, and they can always add it in later if they have to… I guess??? I had Cisplatin during ESHAP but honestly can’t remember how nasty it was. Next clinic appointment is this Thursday, so will get some answers then. Maybe find out more about the allogeinic transplant.
I now have the next Monday off and then its Cycle 2 the following week. Will still have to go in twice weekly or possibly more often to keep these pesky platelets topped up. Hoping to get away over the next week while I have this break. I have a plan and some other things to look forward to.
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