[eveParticipant]

Hi Everyone

I would be grateful for a few replies to a few simple question !!!!!!

This is to all patients past and present who have had VELCADE as a treatment, it is to give me information on how different hospitals treat patients having this treatment.

1. What is the time you have to wait between having bloods and VELCADE???????

2. What hospital do you go to ????

The following is a quote from a reply I received after a letter I wrote to my hospital.
"This means that patients are here all day for two days a week or,they can come in the day before and then come back the next day for chemotherapy and oral medication. This means,however,that patients have to come to the hospital four days per week,"

So VELCADE PATIENTS past and present are you spending from 9am to6pm in your hospital waiting for VELCADE TREATMENT?????????

I would be grateful for some replies before I write again to my hospital.
Kind Regards Eve

[DaiCroParticipant]

Hi Eve,

The initial infusion of each cycle took the longest because we had to have a consultancy where the level of treatment was determined. On those days a typical pattern would be:

In at 10.45am for bloods followed by consultancy at 11am. We would then either get comfortable for a few hours or even pop into town for a shop and lunch – returning at 1pm. After waiting for the pharmacy to prepare and release the Velcade we would usually be called into the day case unit between 1pm and 2.30pm. Then it was a matter of getting the cannula fitted (30 minutes) and the Velcade injected (5 seconds). For the rest of the cycle it was usually turn up at 1pm and anything between 30 minutes and 1 hour 30 minutes for the Velcade to arrive from the pharmacy etc.

So I would say that there was an average per cycle as follows:

[b]Consult & Infusion 1 – 2.5 to 4 hours

Infusion 2 – 0.30 mins to 1 hour 30 minutes
Infusion 3 – 0.30 mins to 1 hour 30 minutes
Infusion 4 – 0.30 mins to 1 hour 30 minutes[/b]

All treatments carried out at Nottingham City Hospital.

Hopes this is of help.:-)

Dai.

P.S.. The introduction of subcutaneous infusions of Velcade should cut down the waiting time significantly.

[MinParticipant]

Hi Eve
When Peter was on velcade, his first few infusions were long days waiting mostly for the pharmacy to produce the product.
But as time wore on it got quicker and quicker, we found making an afternoon appointment meant that he did not have to spend a whole day there.
As time wore he he changed the times of his appointment to later in the after noons because he was working mornings only meaning less time sitting aound as the day unit closed at 5pm and you could be sure of a quick turn around knowing that they wanted to go home.
His treatment was at The Freeman Hospital Newcastle.
Bloods were taken as soon as you got a ?seat? and they had a machine in the unit to do it onsite so it was 10 minutes max wait for results…
Any delays were always to do with the pharmacy who were IMHO flippin useless. taking a prescription for any other meds was always a 30 minute wait?. Why when everything is prewrapped and prepackaged in boxes eludes me. Especialy as I used to work in Boots the Chemist when I left school and nothing came prepackaged in the pharmacy but it never took more than 10 minutes to dispense a script in a buy city centre where we were open until midnight just for prescriptions.
I do think that when you complain they soon sit up and take notice whereas when you just accept the situation you become immune to the long waits.
Min

[wendyduffieldParticipant]

Hi Eve,

I had two cycles of velcade at the Manchester Royal Infirmary last summer.

I was told to come in for 9am as the earlier I come the earlier they could order the velcade but I think the reality is that they waited for everyone who was due to have velcade to arrive before they ordered it. When I arrived the nurses would take blood but I cant remember if this was everytime and then go through an assessment questionaire asking about peripheral neuropathy, sickness etc. Then they would run the questionaire by a doctor and if all ok the go ahead would be given to order the velcade. I didnt have to see the consultant. Then it would be a question of waiting for the pharmacy to make it up so if I got my infustion by 3pm that would be about average although sometimes it was getting on to 5pm and exceptionally by about 1.30pm. I was always exhausted by the time I left the day unit despite lying on the bed and doing very little!

Wendy

[MariParticipant]

Hi Eve,

Stephen is just starting his second cycle of velcade this week. He goes in on Tuesday and Friday for two weeks then the week off. He has a long list of times for these days for several weeks in advance giving him specific times for his treatment. Tomorrow his appointment is 4.30pm but if the drugs are ready early they will give him a call and he will go in. This means he can work from home. He is having his velcade sub cutaneously so spends very little time in the hospital, the biggest problem is waiting for the drugs to be ready. They have to be prepared differently for sub cut than for an infusion. The longest he has had to wait was two hours but I think they are getting used to the sub cut administration now and it is getting quicker. It's still quite a new thing at our hospital. He has a blood test on Friday for the next Tuesday.
Steve is treated between Pembury Hospital in Tunbridge Wells and Kings College hospital in London. KCH are ahead of the game on things like the sub cut velcade so Pembury were fine about doing it when we asked for it, even though our TW consultant said it was not yet licenced. He is having all the velcade treatment locally and will go to KCH again if and when we know how the treatment is progressing.

I hope this is helpful,

Love Mari xx

[brochoParticipant]

Hi Eve I was on Velcade a couple of years ago whilst on the Myeloma X Trial The first treatment of each cycle took the longest , questionaires etc then blood test and a wait of about an hour and a half or two hours for drugs to be made up From the second treatment onwards they used the previous blood results to make the infusion although there could still be a wait of an hour sometimes a bit longer. I really cant understand how it takes so long at Slims hospital especially given the number of people that have to be treated love Bridget x

[LornaParticipant]

Hi Eve

The first couple of cycles Mike would go up to the day unit for his appointment time, be sent down to get his bloods taken and then wait 4-5 hours for the results and Velcade to be made up in pharmacy. It was only when he started the 3rd cycle that he decided to go in at 9 to have his bloods taken and then come home. Even so, sometimes he'd have to wait for the Velcade and once he didn't get it until 7 in the evening!

Sorry if that doesn't help. 🙁

Lorna

[JetParticipant]

Hi Eve

I have just started on Velcade cycle 1, as my remission following the SCT failed very quickly. Velcade is currently being administered by injection, but at Nottingham they are well on their way to being able to administer it subcutaneously. I'm hoping 2nd or 3rd cycle.

I was warned by the specialist nurses that the worst bit would be waiting for the drug to arrive. They can't make it up beforehand as it only has an 8-hour expiry.

So, far, after only 2 visits, it's gone well. The first visit was on Monday, where they already had my blood results and the prescription issued the week before. The Velcade was delivered about 15 minutes after I was in the chair. The second day was Thursday, where I had my shortest ever visit to DayCase – in and out in just over an hour. They didn't need to take blood on either day. They only did a sitting and standing blood pressure check and neuropathy questions.

I'm not sure about next week's visit (Day 8 of first cycle), if I'll need a blood test first, but I'm going in at 3:45, so will see if that works as well.

I've been warned that the worst day is the first day of each cycle, as like Dai said, they need to see the blood results to check the correct dose, have a consultation and issue the prescription. It is then taken up to the cyto-lab and of course that's when the waiting will begin.

I've arranged to go in at 9 to be cannulated and have the blood taken from that. Then see the consultant and while waiting for the Velcade, have my Zometa infusion. Not sure if it'll be any quicker, but that's the plan. I really hope it works as I have a T'ai Chi class on Monday afternoons which I'm reluctant to miss.

Good luck with yours and hope you can find a way to lower the waiting time. It's bad enough to have to keep going into hospital without it taking the whole day.

Best wishes
Jet

[HelenParticipant]

Dear Jet
I'm so sorry to hear about your sct, I hope the Velcade works effectively for you.
Love Helen

[JetParticipant]

Thanks Helen.

How are you getting on? Am I right in recalling that you had your SCT a month or so before I had mine? Or am I mixing you up with someone else? Sorry, I've been a bit out of touch.

Hope you're doing well.
Jet

[JetParticipant]

Having the blood test on the Friday prior to the next Tuesday makes a lot of sense, doesn't it? I might try suggesting that in Nottingham. Thanks for sharing, Mari.

[eveParticipant]

Thank you all for replying

Slim has finished Velcade,but the complaint went in before we new he had remission,but that does not matter I am concerned for people who come after us.I wish I could put the hospitals reply on here,but I cannot not,but reading between the lines,it does not pay to go on trials,you will spend more time in the hospitals!!!!!! and the pharmacy is a law onto it,s self,and no one is prepared to do anything about it.!!!!!

Jet I am so sorry to hear your news,please do not give into the bad news,Slim after 6 cycles of ctd,his Myeloma went up to 80% in bones,after 6 cycles of Velcade he is in remission,he started the same time as you,diagnosed in January 2011,Velcade blocks plasma cells.so hang in there girl,and show your fighting spirit.:-P

My next letter is waiting to be posted to the hospital,its just a shame the ward is taking all the flack,and they are unable to see it as constructive complaint,with the view of helping the system.

They should try to see it from the patients point of view,I have come to the conclusion,for one letter there must be another 99 who do not put it in writing mainly because the nurses work hard,and then the worry how a complaint will be received.

Thank you every one for your replies,if we can make the system easier for people who come after us,it has been worth it. Love Eve

[TerryMGParticipant]

Hi Eve,

I have Velcade once a week on a Tuesday for 4 weeks then a weeks rest before the start of the next cycle. On the Tuesday of the rest week is the consultant?s appointment. I have his at Sidcup South London. On week 1 of the cycle I also have Zemota. I am currently on cycle 4 week 3. Like Jet I regressed 2 months after my SCT when another tumour developed at the Hichman line site.

Timings

Arrive for appointment and have bloods taken and line fitted
While waiting for the blood results I am on a drip for about an hour ? this can vary but average 1 ½ hours.
When the blood results have come back I am told and I ask for printout as I monitor my own results.
Then I am given anti sickness and Velcade.
Sometimes this is delayed if the Velcade is not at Sidcup as it is prepared at another hospital (Farnborough).
I allow between 3 & 5 hours for my treatment.

I could have my blood taken the day before but Velcade does affect my platelet count. This falls each week so by week 3 or 4, I sometimes am very near the minimum level (30) of having the treatment. By having the results on the day gives a higher reading. I do not think having the bloods taken the day before would speed up my treatment too much.

Hope this helps?

Terry
(Failure is not an option!)

[HelenParticipant]

Hi Jet
I'm a couple of weeks behind you, mid august. Debs is Ms July! I'm ok, been a much slower recovery than I expected, still tired and have trouble with an unpredictable gut and all the pain and unpleasantness that goes with it, but I'm getting there, enduring the lenalidomide, trying to eat properly and do normal stuff, but it is hard work and I'm not very patient. Keep in touch
Love Helen

[Author]

Posts