[alpenatorParticipant]

In week 3 of CTD and getting serious hand tremors.
Any other similar sufferers?

[jmsmythParticipant]

Hi Anthony

Yep Frank had hand tremors (besides loads of other things 🙁 ) I don't think they lasted the whole treatment but were not pleasant. Hope they ease soon. If you're worried have a word with Ellen

Love jean

[MicheleParticipant]

A perfectly normal side-effect of CTD I'm afraid.
At times it looked as though I suffered from Parkinson's disease and I couldn't even do any knitting.

The only crumb of comfort I can offer you is that it's only temporary and stops almost immediately after treatment.

😐

[alpenatorParticipant]

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

[CarolsymonsParticipant]

I am also in week 3 of CTD and feel shaky all the time and my legs feel like they don't belong to me. Also have suffered really painful stomach cramps since coming off the dex last Tuesday. Will check out with the doctor tomorrow when I go for bloods and bisphosphonates, but even walking is painful at he moment which is really depressing me. Surely this is not a normal side effect or is it?

Carol

[charisma4Participant]

Hi Anthony,

I had the hand tremors too, but is does pass, so don't worry.
Best wishes , Lesleyxx

[charisma4Participant]

Hi Carol,

I too had trouble walking, i felt that i had no control over my legs, which at times were very painful.My daughters used to laugh at my walk…..said Monty python's ministry of funny walks(remember that tv prog ?) had nothing on me !!!! Also got the cramps. all of this went away when i stopped taking the pills.I feel really well now ,but am going into hospital for stem cell preparation on Thursday,so that's the end of my well days for a bit I expect !!.
All the best to you,
Lesley x

[CarolsymonsParticipant]

Lesley lots of positive thoughts from me to you for Thursday. How long were you on CTD?

Carol

[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

[charisma4Participant]

Hi Carol,
Thankyou for your kind thoughts.In answer to your question, I was on on the
trial drug for 4 months, by which time my paraproteins had come down to 5. This is acceptable if on the trial drug.

How did it go at the doc's today.Hope it all went well.

best wishes, Lesley.

[CarolsymonsParticipant]

Lesley -some good news, some frustration….all bloods, red, white etc still normal, iga and light chains not in till later in the week. Collar bone seems to have a thin layer of bone where the tumour was…probably thanks to the radiotherapy. My frustration lies with WARFARIN! I know I am being ridiculous, but of all the traumas that come with this toxic overload in my body, it is the daily stomach injection of anti-coagulant that is doing my head in. For 3 weeks I have been on warfarin plus the injection and my level is still 1.2! Has to be 2 at least. I was so hoping that today I would be saved from that darnn injection but no….back for another warfarin test on Thursday. I know I am just being a baby about it. Tomorrow is my 34 tablet day so tomorrow and the next will be miserable. I am really wishing for the iga and lambda numbers to have moved downwards, but am probably being premature in expecting that after only 3 weeks of drugs. Gotta hope though.

[charisma4Participant]

Carol, I don't think that you are being a baby at all.All of us with MM are on a roller coaster ride, both physically and emotionally.It's really hard at the beginning, when, only a few months ago both you and I felt well and 'normal'.Here we are now being bombarded with drugs and poison, for which we have given permission! It sounds like something from a horror story doesn't it.

I hope that Thursday brings you better news,and that the pills don't make you too miserable over the next couple days.Keep fighting.
Lesley x

[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

[saletParticipant]

yes my husband is in his third cycle and also has tremors, but the bigest problem is the hi sugar level .salet

[DaiCroParticipant]

I don't know about CDT/CDR but I have quite noticeable hand tremors and general twitches with my Velcade. Early on in the treatment I had techni-coloured daydreams, complete with sound effects… mainly inside my head… of explosions, bullets and sunbursts.:-D 😛

It was quite an unpleasant experience, both the physical and mental aspects but they have settled down now into a manageable set of side-effects, although I still have a few twitches now and then which prove to be, if not an embarrassment, at least an indicator that I am on a serious medication.:-|

Dai.

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