[tishwishParticipant]

Has anyone else suffered from jelly legs. Peter is due to start cycle 5 of velcade tomorrow and for the past few days he has had more pins n needles in his feet, this now seems to have moved to his legs with a jelly like feeling. We are due to see the consultant in the morning and will tell him but just wondered if anyone else has had the same symptoms.

Thank You Trish

[PatGParticipant]

Hi Trish,
Yes I get this too. I have just finished cycle 7 VCD. The dex lessens the feelings of PN but when it wears off they come back with a vengence and my legs( and hands for that matter) are very shaky for a couple of days. The PN is sometimes so bad by bedtime I have to take Tramadol so that I can get to sleep. I also have a couple of days of breathlessness, apparently due to fluid retention. I have diruretics if I need them during this phase. I try not to take the extra drugs as I feel there is so much going into my body with the VCD it dosen't need any more. I have one more cycle to go and not sure what happens then. time to ask the questions in a couple of weeks when I see the consultant.I prefer my info a little at at a time! I have AL Amyloidosis and not mm but the disease and treatment are similar. I just hope it goes away after treatment. Hope Peter is doing and continues to do well on the Velcade and the consultant has good news for you.
Love, Pat

[PerkymiteParticipant]

Hi Trish, I am on Cycle 3 – 20mg Dex plus 2.5mil of Velcade (by infusion into my stomach) twice a week for two weeks and then one week off.

It is well known and recognised that having the Velcade by Infusion reduces the incidents of PN. At present I have no PN and I had it badly in 2009 when I was given it at my original diagnosis.

Kindest regards – vasbyte

David

[tishwishParticipant]

Thank you Pat and David

We have seen the specialist today who told us that the jelly legs is quite normal. Some people suffer more than others he said. He also told us that all research seems to point to that whatever pins and needles patients have at cycle 5 is the worst it will ever be. So based on that info it was decided that cycle 5 of the velcade treatment would commence today. Peter has also been suffering from a severe pain and burning sensation along with a lump, it now transpires that he has a hernia. Peter has to see his own GP with a view to been referred to a specialist for an operation……however it is unlikely that an op will take place until the chemo course is completed. The saga just seems to roll on and on…….

Trish xx

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