[deborahParticipant]

Hello! I'm a newbie with a question.

My mother had chemotherapy a couple of years ago for MM and was in recession until recently. It looks like she'll soon be starting chemotherapy again, but this time on a different drug: Velcade. Just wondering if anyone here is willing to share experiences with this drug, good or bad. For the record, her last chemotherapy was Thalidomide-based and she had a rough time of it.

Thanks for any and all replies!

[tomParticipant]

Hi Deborah

I cant add to this one am afraid just wanted to welcome you and your Mum into the group but some one will pop in and sort out your Q.

All the best in the road to remission for your Mum

Tom "Onwards and Upwards" xx

[avantrompParticipant]

Hallo Deborah
You enquired about Velcade? About a month ago I attended the National Myeloma day in the Netherlands. Dr.Lokhorst gave a lecture on problems related to MM medication. He said that there is 50% chance of getting shingles if you take Velcade and he always prescribes zelitrex for protection. Believe me, you do not want to get shingles if it can be avoided. I am receiving treatment for MM (not Velcade) and got shingles in February. The pain is still not completely gone.
All the best to your mother
Annette

[deborahParticipant]

Thanks for the kind words, Tom!

[deborahParticipant]

Annette, I didn't know that; thanks for sharing. Can one get a shingles vaccination in the UK?

[avantrompParticipant]

Hallo Deborah
I am a complete layman so don't take what I say as gospel. I have heard that a vaccination is available but it is made from a weakened live virus and is therefore not suitable for anyone with reduced resistance.
I can't say what is customary in Britain as I have been living in the Netherlands for over 30 years. My treatment here is excellent. I am a regular follower of Myeloma UK, and the Dutch CMWP.nl.
I hope it all works out for your mother.
Annette

[DaiCroParticipant]

Hi Deborah,

You say that your Mum had Thalidomide based chemotherapy a couple of years ago… I assume this was her frontline treatment? Most likely CDT (Cyclophosphamide – Dexamethasone – Thalidomide) or one of the variants. Did she then have a SCT (Stem Cell Transplant) or was she considered too old? (Normally not offered if over 70 or even younger if there have been other underlying health problems).

Velcade is usually given at this stage as a preparation for the second SCT… that is, the remission is not usually considered as long term (6 -12 months) and is followed by Revlimid which can last considerably longer (18 – 30 months) – my calculations based on experience of other patients.

Velcade used to take about 30 minutes to administer (the actual drug is a 5 second infusion but there is a saline drip before and after). It used to be administered through a cannula in the back of the hand but these days it can be administered subcutaneously,(Subcut) through an injection to the stomach area, which apparently lessens the side-effects considerably but still retains the efficacy.

Velcade is a cousin of Thalidomide and like Thalidomide it can cause Peripheral Neuropathy (PN) although reports of Velcade via Subcut lessen this effect.

Velcade is usually given twice a week (i.e. on Tuesdays and Thursdays) for the first three weeks with a rest week to follow… making it a four week Cycle… with 6 to 8 Cycles in total. Again, usually, Dexamethasone (the steroid) is administered once or twice a week for the full four week cycle. and your Mum will also receive medication for the prevention of shingles. (I have personally known
seven people come through here who have had Velcade and not one has actually had shingles).

Some people sail through Velcade with few problems or side-effects… others find it quite a tough regime… it is a quite individual experience… but the subcut approach makes the procedure and the full experience much gentler than before.

I wish your Mum plain sailing.:-)

Dai.

[eveParticipant]

Hi Deborah
Welcome to the site,I think Dai has summed Velcade up.
My husband had 6 cycles and found it better than having CTD but he had a few problems with the first line treatment.It does depend on your mothers age how many injection she has in one week,the older patients (80) seem to have one injection.My husband is 67 and he had 2 injections of 2.3 Velcade.It does take your time up as you have to have blood test either the day before or the same day,depends on which hospital and if you are on trials.
So you attend the hospital more,and a close check is kept for side effects.

As Dai said every one reacts different,and there are lots of side effects you can get,so it is wise to tell the nurses everything.Even if its a very small thing.they will look continually for infection of any source.

Hope this is of some help.Eve

[DebsParticipant]

Hi Deborah

I think Dai has given you the low down on velcade. It worked brilliantly for me, but you must watch out for the Peripheral neuropathy and don't let your mum downplay it. I did and ended up with it for 9 months and needing quite serious painkillers.

It was absolutely worth it for the result, but I was worried at one point that I might get left with it for life….which is possible if you don't nip it in the bud.

Debs x

[deborahParticipant]

Hi Dai,

Thanks for the in-depth response. Interesting!

Shamefully, I'm not sure which combination of chemotherapy she had initially (other than it being Thalidomide-based), but she did have a Stem Cell Transplant.

"Velcade is usually given at this stage as a preparation for the second SCT… that is, the remission is not usually considered as long term (6-12 months)" – does this mean they're not expecting her to go into long-term remission again? I'm a little fuzzy about what you've said here; apologies!

We'll see how it goes for her, anyway. I'm just glad that there's a chance it might be a bit less traumatic, since it's administered subcutaneously.

[deborahParticipant]

Hey Debs, thanks for the heads up about the Peripheral Neuropathy.

(Cool name, by the way!)

[deborahParticipant]

Hey Eve, thanks for your reply. My mother is in her sixties, so I'm guessing they'll give her two injections a week. Last time my mother had chemotherapy she was in hospital the whole time?seems Velcade will involve a lot of toing and froing, but at least she'll be able to sleep in her own bed at night.

[meeuuParticipant]

Hi Deborah,
I just want to let you know that Dai has (as is usual) given a great account of Valcade. My wife, who is 58 yrs old,has been on Valcade since last Nov and is doing very well. She was diagnosed 6 yrs ago and has had all the usual treatments (SCT, Revlimid, Thalidimide etc and many variations). Initially the Valcade was administered twice weekly and now, since Jan, we attend every two weeks. Thanks to this Forum (and her Consultant)my wife was the first patient in Ireland (to our knowlede) to avail of "Subcut" and it is so easyly administered. As Dai has said, it is such an individual disease, treatment and side-effects are also varied. I hope that your mother is somewhat encouraged by the comments and that her treatment works as well for her as it has done for my wife.
Kindest regards,
John

[jillsParticipant]

Hi Deborah,

My Mum (83, diagnosed with MM in 2007) is currently having Velcade treatment, she has it sub cutaneously once a week together with dexamethasone on two days a week. She also has anti viral and anti fungal medications (prevents shingles and other nasties) as part of the treatment. She has had two 4 week cycles and is due to have two more. She previously had CTD (tablets) which gave her a period of partial remission for a couple of years and did suffer with neuropathy and other effects from the thalidomide.
She is doing very well on the Velcade at the moment, no real side effects apart from a bit of up and down mood from the dexamathasone. After two cycles her PP levels have dropped and so it is working well and her consultant is very pleased. The worst bit is the weekly trip to the hospital for the injection – seems to take ages although the injection only takes a few seconds to administer! Our worst experience so far was a three hour wait….not ideal for an 83 year old and difficult for me to manage with my work!! But at least the hospital are keeping an eye on her as Eve says, previously with the CTD she was just sent home with a big bag of tablets.

All the best to your Mum, let us know how she gets on,

Jill x

[DaiCroParticipant]

Hi Deborah,

I have inadvertently given some wrong advice… I said:

?Velcade is a cousin of Thalidomide and like Thalidomide it can cause Peripheral Neuropathy (PN) although reports of Velcade via Subcut lessen this effect.'

Ellen from Myeloma Uk has put me right with:

[quote]This isn't strictly true and Thalidomide and Velcade are quite different drugs, they work in different ways but yes absolutely they can both cause peripheral neuropathy. Revlimid is a cousin of Thalidomide and Carfilzomib is a cousin of Velcade.[/quote]

My point about remission is that Velcade seems to me to be primarily a preparation for the 2nd SCT and any longer term remission is a bonus for those who don't qualify for a second SCT… this is my interpretation based on experiences for myself and of others and is not an official line.

Revlimid on the other hand seems designed to give a longer remission for those that take to it… my consultant told me that Revlimid results are still coming in and altering the median all the time… at present the median is approx: 30 months.

Sorry for the misinformation but we all know better now.:-)

Thanks Ellen. I am only too glad to be put right if I offer wrong or misguided advices. 😎

Dai.

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