[alpenatorParticipant]

Finished last dose of steroids in cycle 4 last Friday with worst side effects ever. Saturday spent all day asleep in bed, Sunday not quite as bad but blurred vision was awful as it was on Monday.
Almost back to 'normal' today (Tuesday)
Also lost 8lb in weight over the 3 bad days.
Consultant next Monday to start cycle 5, the end is in sight!!

[alpenatorParticipant]

Thanks for your reply. I am on zometa, which I feel is doing a lot of good so far. Consultant increased my pain relief which has really helped the leg pains making it easier to get about.
Blurred vision being looked at by Eye Clinic next month. Brain fog continues to be the most uncomfortable side effect.
Last dose of Dex tomorrow in this cycle, waiting to see if I get the usual downer

[alpenatorParticipant]

Some really positive comments here, thanks.
This forum is great for sharing experiences that we aren't warned about.
Start cycle 2 of CTDa next Tuesday, so more strange effects I suppose

[alpenatorParticipant]

Afraid so, I felt awful for 10 days or so but slowly got better. Now main effects are the tremors and very painful legs like you.
We just have to see it through, knowing its for the best
Good luck

[alpenatorParticipant]

Thanks for that, I was worried about Parkinson's too.

[alpenatorParticipant]

Glad to report that my eyes are getting better after 1 week of my CTDa chemo.
Didn't expect such quick results but they are there so blood must be thinning.
Have and at 'em

[alpenatorParticipant]

Good to hear that you all think it worth it (of course it is)
It's all a bit of a shock though, as you have no idea what the effects are going to be.
Stressful for others too, my wife and I had a dust up today over it and its not worth that.
The feeling of being inhabited by an alien being is not nice, nor are the bone pains.
Still, nil desperandum
23 weeks to go and counting 🙂

[alpenatorParticipant]

Since last post (?) I got copy of letter from consultant to GP which mentioned that I would have CTDa chemo.
I believe this is a variation given to elderly patients (I am 77, so suppose that's me!)
The letter also noted that I have IgA Kappa Symptomatic MM. The IgA Kappa is something new to me, any ideas?

[alpenatorParticipant]

Optician today told me that changes in my prescription would have little benefit, and that the best option now was to wait for the treatment to take effect.
He suggested that I buy a pair of 3x off the peg reading glasses and to make sure that there is good light for reading, I am using a camping head light for this, it works.

[alpenatorParticipant]

Thanks Dai
I think that I was reconciled to the fact that it was an optician solution and I hope that this is so in a way.
I think we should be eligible for free specs 😀

[alpenatorParticipant]

Thanks Gill for your response.
I am also finding that ny vision changes several times a day.
I also know that I have cataracts starting and can recognise the blurred patch caused by that. Optician said that they were not at a stage to be reviewed but I will ask again when I see him this week.
All keeps yopu on your toes, doesn't it?

[alpenatorParticipant]

Thanks Helen
A very full reply that answered a lot of questions. I know that more measurements are being taken after yesterday's biopsy (which did hurt a bit) and I have just had a call from the consultant asking me to see him next week.
Onward and Upward

[alpenatorParticipant]

Thanks, good luck to you both

[alpenatorParticipant]

Thanks for that, a bit reassuring.
Hope that you are progressing

[alpenatorParticipant]

Thanks Helen, that was all very useful. See my general reply earlier.
I have my initial paraprotein number which was 17.4 but I dont know what the scale is; is that high or low?
Bit disappointed about lack of information from hospital,but I have all the relevant contat numbers there.

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