This topic contains 6 replies, has 4 voices, and was last updated by 
janw 7 years, 7 months ago.
Hello,
I have started my 2nd round of treatment, I take Thalidamide 100mg every night, I am experiencing lots of side effects, tiredness, swelling in my legs and feet, heavy legs and feeling emotional.
<p style=”text-align: right;”>I keep hoping each day will get better.</p>
Hello l to like you experienced a lot of side effects while taking vtd, l thought it was the velcade giving me my symptoms but actually think it was the thalidomide. I too was very tired, l didn’t have swelling in my legs but they were very week even to the point that l couldn’t stand for very long, if l bent down to say get something out of low cupboard l could hardly get up had to hold onto something to pull myself up. I had three cycles of treatment the good news is that after treatment stopped it wasn’t long before that tiredness changed and l got my strength back in my legs. The good news is the treatment worked really well, keep going, rest when you can and don’t feel bad for not being able to do much let your body do its magic and get better.
Thank you for your kind words, this is day 4 of 14, today the skin on my hands has started to break out and I also have weak legs, i foolishly went for a bath, and struggled to stand up. Showers only from now on! I will see what tomorrow brings, if things don’t improve I will contact my Nurse for advice. It is good to know that there is light at the end of the tunnel.
Hello Pauline.J,
Some time ago, I had full 8 cycles of vtd, (from Jul 2015 to Feb 2016). And speaking to other people, I think I was exceptionally fortunate. My memory is a bit rusty, but I did get PN in the hands and dropped things frequently – and this disappeared shortly after the cycles stopped. I did also get it in the toes, to a lesser extent, and this also cleared. I also suffered from breathlessness, but this also cleared up, a few weeks after stopping the treatments.
Weakness in the legs: Unfortunately, I did and still do get this, but I had it a long time before MM (it started at 60; I’m now 68), and this was definitely due to damnable statins, and definitely not due to VTD. In fact it go no worse during the VTD.
Like the previous post, the VTD, in my case, was an exceptionally good treatment – I would go so far as saying ‘fantastic’.
BUT, each of us is very individual, with wide ranging reactions to treatment. Other patients I speak to echo almost exactly the symptoms described in the post above. Not nice, but pretty common I’d say (as a patient not a medical person).
Why don’t you see your consultant, explain your difficulties, and ask them for options: like reducing the Thalidomide, or other parts of the combination. The steroids play (I think) a fairly important role, so they may not alter these, but there’s still lots of options. Main thing is to make your treatment as manageable as possible – and as said before in the post above – there is light at the end of the tunnel!
Very best of luck,
Peter
Thank you Peter for the reassurance, I am feeling good today. Hearing your story and how you recovered has given me great strength.
Hello again, my dear wife happened to read my post to you, and she wasn’t too impressed regarding the balance and an omission! I’m afraid I left out a significant side effect that I had with vtd. Sorry it was a while ago and I completely forgot. It concerned tummy trouble. Elsewhere in this forum I liken it to having to carry a loo roll round my neck when I went out. It lasted months after my treatment ended. If you’re concerned or want to know how I coped, PSE say.
On the positive side: when I was initially diagnosed, I didn’t have a clue about MM, but I soon learned! If you’re unfamiliar with what I’m gonna say pse ignore it. My particular MM is to do with free light chains (flcs) of the lamda kind. The max value should be about 28. Mine was 11,500! But remarkably after a few months of treatment the flcs reduced about 15 and stayed there. So that’s why I claimed it was fantastic. Also, I dusted off some old notes, and my consultant actually reduced my thalidomide because of the neuropathy in my fingers, which in the end wasn’t an issue.
Reading various MM websites and speaking to people you mind find that some have an obsession and think about their MM 24/7. Unfortunately I was also diagnosed with prostate cancer about 3 months ago. Fortunately it doesn’t appear to be aggressive, so I suppose if anyone should be obsessed it should be me. — but that is the way to doom and gloom. MM is a very messy, individual and difficult cancer. But outlooks are good. SCTs can be brilliant and there’s new brilliant drugs being introduced every week (NICE notwithstanding). So I believe it’s best to be as normal as possible and basically “take it as it comes”.
Let’s forget MM and let me tell you about a humourous interchange that took place with my mate Dave in the pub the other night. Dave said, ” Pete, why don’t you subscribe to encyclopaedia brittanica online? It’s a great alternative to Google and Bing.” I replied, “why Dave? My lovely wife knows everything about everything.”
Hi,
I am sorry to read about your side effects to the chemotherapy, which unfortunately can seem to take over your daily life and interfere with daily activities. You might find the next few cycles get easier or they could get progressively more difficult. For this reason, I would suggest you keep a weekly diary and write down the days you don’t feel so well and the days which are OK. You can then see whether a pattern begins to emerge. (Myeloma UK has a free diary to log down your treatments and side effects.)
After completing 4 cycles of CDT in 2010 and 8 cycles of VCD in 2015/16, I found the side effects to the chemotherapy gradually started to increase for me up to cycle 4. My main issue was sickness and vomitting from the cyclophosphamide which took months of various anti nausea drugs before some relief was found. However like you, I did experience heavy legs and muscle weakness in the legs during both lots of treatment. I had several occasions where I fell over when bending down and had difficulty for months getting up stairs. Both Thalidomide and Velcade caused peripheral neuropathy (PN) in my legs. I had pain and numbness in the feet and legs. On CDT the PN was quite mild, but kicked in very quickly after the first cycle of Velcade. If you think you have PN, you need to speak to your medical team so that they can monitor the PN and perhaps review your medication. The emotional highs and lows which you are experiencing are more than likely linked to the Dex, which tends to cause quite a few issues such as sleepless nights and higher energy levels during the days whilst taking the Dex, followed by a crash afterwards when you are extremely tired and emotional. My husband used to avoid talking to me for a couple of days after taking the Dex, because I would be so grumpy and tend to “bite his head off”, which you don’t realise you are doing. The fatigue used to increase as I completed more and more cycles.
I hope you find the chemo gets easier for you and the side effects are minimal, but remember if you have sickness, diarrhoea or constipation then they can all be treated. Don’t suffer, either speak to Myeloma UK or your hospital team.
All the best.
Jan
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