[alpenatorParticipant]

Had my second injection in the second cycle yesterday and apart from an interrupted night’s sleep have had no negative reactions this time around. It looks as if, as some of you have said, this treatment does get better as far as side effects are concerned.
Take the good news and go forward into battle!

[iangParticipant]

Hi Anthony

Injecting subcutaneously has apparently reduced the side effects of Velcade compared with IV injections. The only immediate effects I got were regular injection site reactions and mild constipation – by mild I mean it only lasted a couple of days or so. I was injected on Thursdays and I was regularly constipated from part way through Saturday to part way through Monday. I didn’t take anything for it because I didn’t want it to swing violently to diarrhoea after a couple of days.

Velcade gave me peripheral neuropathy (PN) in my toes starting I think during the 3rd cycle and it gradually got worse during the 4th cycle, which was the last before my SCT. My cycles were 5 weekly – 4 weeks of treatment and 1 week gap. My PN is not debilitating in any way. I don’t notice it when I’m walking. It’s particularly noticeable when I sit watching TV in the evenings, especially if I kick off my slippers and wiggle my toes. It also affects the area of my foot just behind my toes that stays in contact with the ground when I lift my heel.

I have read that CTD PN can be permanent and Velcade PN tends to be reversible, but my experience so far is the opposite. My first treatment was CTDa and I was switched to Vel/Dex after 4 cycles because my paraprotein level seemed to have plateaued. I got PN in my hands from the 4 cycles of CTDa and it has cleared up completely. I’ve still got the PN in my feet caused by the Velcade, and so far it has shown little if any sign of subsiding. I have also got some numbness and tenderness in certain areas around my knees, which is not exactly what you think of as peripheral, but when I asked my consultant whether it might have been caused by the Velcade he said yes without hesitation. My thighs also feel like I’ve been doing lots of squats, but I first noticed this after my SCT so it might be associated with the high dose Melphalan.

Just my experience.

Ian

[sue48Participant]

I  have just relapsed and going to start on the Velcade,   reading all the side effects I am feeling worried, I was bad enough with the CDT.  Just been reading Ian’s comment regarding injecting subcutaneously, what is the difference between this and intravenously please, or am I being stupid. any help would be appreciated. I will try anything so long as I don’t get all those horrible side effects for 6 months. Also are there many people on this site who have not had a SCT, I haven’t had one, and I feel like I am being pestered to go ahead, but I made my mind up first time around that I didn’t want to go through that, being I was so ill with the CDT., Love this site.

[alpenatorParticipant]

Sue
Dont worry about Velcade side effects, not nearly as bad as CDT in my experience and they seem to get less as you get into the treatment. I am midway through se3cond cycle and the main side effects remaining are the PN in my feet, and like Ian I have some loss of feeling around my knees, also I have difficulty sleeping for the 2 nights following the injection.
The subcutaneous injection is the best I think although some people have reported pain in the are. I have had none.
Carry on regardless

[sue48Participant]

Thank you Anthony for your help, made me feel better but still confused as to what is the subcutaneous injection, compared to the intravenously is, hope your treatment continues to go well.

[iangParticipant]

Hi Sue

Injecting subcutaneously means injecting just below the skin, injecting intravenously means injecting into a vein. You may have been given Clexane when you were having CTD treatment, Clexane is administered subcutaneously (you can inject Clexane yourself but not Velcade).

I didn’t mean to alarm you. Peripheral neuropathy is a common side effect and in the case of Velcade it is less likely when the Velcade is injected subcutaneously. As with any side effect you should inform your medical team if you notice it. Your doctor may reduce the dose or the frequency of injections.

I suggest you read the Myeloma UK Infoguide about Velcade:

http://www.myeloma.org.uk/information/myeloma-uk-publications-list/myeloma-treatment/velcade-infoguide/

Ian

[sue48Participant]

Thank you Ian for your help, I will read the guide.

 

Sue

[sue48Participant]

Just seen Doctor today, I have been put on Velcade/Cyclophosphamide and Dex is anyone else on cyclophosphamide,as well as velcade and dex. I thought I would just  be on Velcade and Dex, start next week, can’t say I am looking forward to it., How long is the treatment for, I was having to take that much in, by the time I got home my mind had gone blank. Any help would be appreciated.

sue

[sue48Participant]

Hi Anthony

Are you on the VCD   Velcade/Cyclophosphamide.dex or just Velcade, I know I keep going on about side effects, but reading some comments they sound horrendous , like I said the CDT was bad enough, ill for most of the time.

Sue48

 

[alpenatorParticipant]

@ Sue
I am on Velcade + Dex (dont like to abbreviate to VD!)
I must say that on this cycle (2) I have very few side effects thank goodness; bit depressed at times and the PN soesn’y get any better, but all in all not too bad.
On the plus side, I do NOT have back pain for the first time in more than 2 years, I cant tell you howe good that is 🙂

[Author]

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