[aburke53Participant]

Thanks for this. My experience is similar and am now into second year of treatment with paraprotein at less than one. My consultant has also said that this could be some form of “leftover” from the ISA. I’m still on Dex. I’ve, kept the weight on by eating well and exercising regularly. My Dex has stayed at 20mg weekly and have not had any discussions with the consultant about reducing it. It still gives me the pain relief for about 4/5 days so its a tradeoff with poor sleep/less pain or more sleep/more pain. So far I prefer the former. Glad to hear your doing so well, gives me more hope.

[aburke53Participant]

I think the neck and rib pain has improved. It definitely has not got worse. The lower back/spine is about the same. The Dex continues to reduce it for 3 or 4 days but then it comes back. I do stretching exercises everyday.

[aburke53Participant]

So far so good. I think I’m now on cycle 13. I’m tired for a few days after the isa infusion. Not helped by a long drive and a long day in the hospital. The Dex still causes insomnia for a few days.

[aburke53Participant]

My severe PN was Velcade induced. It got so severe that I couldn’t even stand to brush my teeth. Walking more than 10 yards was problematic. I also had PN in my right hand. I was referred to a pain clinic where I was just dosed up with Gabapentin/Pregabalin/Codeine and other pain killers…..to no real effect, and a real addiction to the meds with all the usual side effects. I took things into my own hands and forced myself to walk 25 yards, 50 yards, 100 yards, 1k, 2k….15k, gradually reduced the meds. I noticed that the onset of pain whilst walking was reducing as I walked longer distances and at its most severe after the walks. I also found that ice baths for the feet after walking worked wonders plus a cooling type foot balm. I have since hiked several long distance hikes of over 1000 miles each and after each one the PN improved. I can now jog short distances and play badminton. I still use the ice baths and foot balms. The Docs think that all the walking helped to stimulate the nerves. I’ve tried the compression socks and not sure if they help and I can’t wear them at night as I find them too tight and uncomfortable. I still have some numbness, no pain, only in my right hand.

I realise that my extreme “solution” is not for everyone but I am completely neds free. My takeaway is that stimulating the nerves worked for me. I know some docs opine the opposite and advise rest and warm foot baths.

[aburke53Participant]

I’ve had swollen legs on two occasions. The first time was an early sign of DVTs (if only I had known, early intervention may have alleviated my short term and longer term problems). I ended up in hospital for 2 weeks with full blown clots on the lungs and legs. The second time was the onset of peripheral neuropathy which was/is horrible. My advice is to be your own strong advocate and push your medical teams to get to the bottom of it.

[aburke53Participant]

Thanks for your response. Your experience seems similar to mine during the first weeks. This is also my 4th line of treatment. I’m not sure what you mean when you say your response is down from 12 to 1.5? I have Kappa light chain myeloma.

I have now completed Cycle 1 (4 x weekly) and whilst the time spent actually receiving the isatuximab has speeded up (I’m 70 kilos), the actual time spent in the hospital (OBS, Blood tests, Dr, treatment, pharmacy)) has increased hugely due to what I can only presume are COVID related delays. My last visit, including driving time, was a 13hrs round trip. During COVID, the last place I want to be is in a crowded hospital waiting around when I am being so careful elsewhere. I’ve also been put back on Zometa which adds another 30-60 mins to the infusion time.

Other than my usual problems with Dex (can’t sleep) I’ve not had any other noticeable worsening of any already existing side effects. Just increased pain in the lower spine, neck and rib cage – which the Dex takes away for a few days. I start Cycle 2 (every 2 weeks) next week.

[aburke53Participant]

I have no experience of the DVD combination so I can’t really comment. The ILD, and now just IL, still seems to be working for me. However, you will have heard many, many times that we are all different and that our myeloma illness and individual reaction to drug regimes is all very personal and specific to each individual. I can see why it is such a difficult decision to make. I’ve always asked for guidance from the medical team and put my trust in them. Hope it goes well for you.

[aburke53Participant]

I posted this very question about a year ago but go no response so I’m glad to see it here again.

I am 67 and had 6 months of Thalidomide, Cyclophospamide and Dexamethason and then a Stem Cell transplant in 2007. Then Vrlcaide, Cyclophospamide and Dexamethason and a second Stem Cell transplant in 2013. Both proved difficult to recover from but I managed to get back to a pretty good level of health and fitness and resumed a fairly active life style including hiking, gym, cricket, badminton and cycling so I Know I have been lucky.

In Jan 2019 I relapsed again and was put non a combination of Lenalidomide, Ixazumib and the dreaded Dexamethasome for six months. Blood counts recovered and all other tests seemed good. 6 months of Dex definitely made me feel very ill and I was not sleeping at all for 4/5 nights after taking it.

Since Sept 2019 I’ve just been on the Lenalidomide and Ixazomib which I am tolerating well and feel pretty good and was back playing badminton and back in the gym until COVID. I can see that I am operating at about 50% from before.

Does anyone have any idea how effective, long term, the treatment is without the Dex? How long can I expect this treatment to work for? Any help will be much appreciated.

[aburke53Participant]

Hi Lily,

I too have had two STCs and was first diagnosed in 2006 and was in remission for about five years after each. I found recovery back to an active lifestyle difficult. Initially I had the common post STC symptoms like hair loss, exhaustion, dry mouth, blood clotting, lack of appetite. It took me about 6 months to get back to a good level of health and fitness but I never got back to my previous levels. I would say about 25% less than before each STC. I was very fit and active and try to keep this up but at a much reduced level than before. All I can say is that a healthy diet and a level of exercise that you can cope with seems to help….but we are all different.

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