This topic contains 23 replies, has 11 voices, and was last updated by 
KeithH17 13 years, 1 month ago.
Hi everyone,just a brief update for you all.
I'm halfway through 2nd cycle of Velcade and starting to feel some of the expected side effects for the first time.
The tiredness and fatigue is more evident and a slight numbness is present in my fingures although still no leg cramps as yet.
I can barely taste anything which makes eating a requirement with little or no enjoyment.
I have another shot of Velcade tomorrow and then again on Monday along with Zometa which will complete the second cycle.
All in all up to now I've been ok with Velcade and long may it continue.
To all you other VELCADIANS out there,I'd be interested in your experiences in coping with this treatment.
Good health to all…Keith.
Hi Keith really good to hear you and Velcade are getting on so well Long may it continue!! love Bridget
Hi Keith,
I was able to tolerate Velcade really well, far better than the CDT I had for my initial treatment. There were a few hiccups along the way, and I couldn't have the very final infusion of the 6 cycles as the soles of my feet went numb (they recovered), but there was nothing I couldn't cope with. It worked well, too, which is the main thing.
Is the Velcade being administered intravenously or subcutaneously? Having read recent info re subcu. it appears that the side effects are less but the treatment is as effective. I'd be interested to know if anyone has been offered it this way in the UK.
Hope everything goes well for you and it does its job.
Jen.
Hi Jen,
That is very interesting about the subcutaneously administration (such difyclut slpeling!). My wife and nursing staff are experiencing fierce difficulty in finding a suitable vein in her arms each time we attend the clinic. This has become progressively worse over the past few months (she has been on all the treatment regimes during the past 4 years) even though she uses the electric "arm-warmer-uppers" prior to treatment. To be honest, I have become more apprehensive before each visit about the injections (and subsequent discomfort (another clinical name for pain!) that she must feel, than the disease itself. I wil ask the team about the alternative injection next time we are attending. By the way, the Valcade (without the Dex) seems to be working well, so far, although she continues to sleep for most of each day and night.
Keep well,
John
Hi Jen,the Velcade is injected through a cannula and takes about 4,secs.
I've heard of it been injected just below the skin but certainly not experienced it or know anyone who has.
Like I've said the side effects are nominal compared to my first treatment which was VAD+Dex.
Just as John is finding with his wife my own veins are not too obvious.
With my first treatment I had a Hickman line fitted for the duration and even that started to play up by getting blocked so they still had to resort to needles.
Keith.
Hi Jen and Keith the disappearing veins are a problem for me too and in fact it is the one thing that can reduce me to tears! At my hospital they use PICC lines, these are a fine tube fed through a cannula in your elbow , up tp tour neck and then down to a major vein in the chest It is completely painless , being fitted and removed , only a small local anaesthetic is needed. The biggest advantage is there is no open area to worry about , it is completely covered with a dressing ,changed weekly. I have had 3 of them now and had very few problems, the odd blockage which is easily cleared .Blood can be taken from them too . It may be worth asking if your hospital uses them or perhaps plan to. love Bridget x
Stephen also has a PICC line in the crook of his elbow. It has not caused any problems and it means that blood can be taken and medication given through it without having to put a further needle into a vein
Gill
Thats good to know Gill. In the early days Cecilia had a canulla fitted (when she was an in-patient for many months) but eventually it had to be removed because of infections. I will suggest the PICC line on our next visit in a weeks time. This is a great forum. Thank you all.
John
Hi Bridget,had my injection of Velcade today but not totally without incident.
Went into a different Vein this time,one which has'nt yet been used.
Managed to extract blood without problem but could not get anything to go in so yet another Vein had to be used in my wrist to inject the Velcade.
This went in without any problem but I am quickly running out of places to inject into.
Fortunately the Veins usually heal within a week and just in time for the next injection.
I've been told my Veins are very difficult to find but I think alot has to do with who is doing the looking?
I have skinny arms and my Veins stand out like organ stops yet they still have trouble finding a good one that works.
This is the one thing that annoys me most,being stuck with needles.
As for using Lines…been there done that ect, ect.
I even had problems with that procedure during my last treatment and ended up having to go back to using Cannula's.
Still if my Veins hold up then everything is ok and I'll get through this new phase of my journey.
Oh by the way I mentioned to the Nurse about having the injections Subcutaneously and she did know about the procedure but that was as far as it went.
Maybe it's something I will follow up if there are anymore glitches during my next visit on Monday.
Take care Bridget and keep in contact…Keith.
Hi Keith,
I read the article about the subcutanious velcade too, and mentioned it at consultation at the time that Peter was on it and the subject of it probably causing his Thrombosis( he was filling in a peculiar form for the authorities who collect unusual side effects from medication.) I got the impression that as this was not a uk idea it should be poh poohed.
But I wonder if he had been getting it under the skin rather than in a vein he would have got the DVT in the 1st place. Who knows they are the professionals. I would say, its your body and maybe its the only thing you get your say on with regards to the medication. Maybe the way to go about it is to Print it out and ask to discuss it with the Dr on the day?
Im pleased your getting on well with velcade though Keith.
Min
Fortunately, I've not had any problems re my veins. The nurses always manage to find a decent one without having to resort to the warming up method (in my area this is a bucket of hot water – nothing as fancy as an electric warmer up here!)I have seen other patients suffering as the staff try to get a line in so sympathise with you all for having to go through the added strain.
Let's hope that if more people ask about having Velcade administered subcutaneously then it will become accepted practice in the UK. If it helps lessen side-effects and means that more people can benefit from this treatment then it can only be a good thing.
Jen
Hi all
well its looking more likely that I will be joining you all soon on this velcade experience as i now have had 2 different consultants suggest i may need systemic treatment after my radiotherapy :-S .
It is interesting to hear about having it subcutaneous as this could reduce the need to go into hospital quite so much, as I've managed to give myself clexane and GCSF injections subcut at home why not velcade?!
I'm sure one to discuss with the Drs when i get there!
Good to hear mostly positive experiences about velcade
love Sharon x
Hi Sharon,
I thought this too when Peter was on Velcade but unfortunately you cant have the blasted jab until they take you bloods and check how they are responding to it. One day his platelets were so low he could not have it.
The other inconvenience is they don't send the script to the pharmacy until they have these results and the pharmacy seams to work at only two speeds. Dead slow and stop!
Plus they apparently are made up specifically for your weight and height in the pharmacy and have a very short shelf life too.
Unlike GCSF and Heparin in Peters case they don't come pre packed in a carton, I remember the injection coming on a covered tray with a little tag attached saying use within 8 hours.or something like that.
Regards
Min
Got it right there Min,bloods do have to be taken and tested first.
But surely there's nothing to stop them using this method at the Hospital.
It would certainly help me as my problem is not one of getting to the Hospital but that when I get there they have trouble finding a good Vein to go into.
This has always been a problem for me.
I had GCSF injections this way in preparation for my first SCT and all of them were at my local Hospital but minus all the holes and bruising.
I would'nt care a cyclops with a glass eye could spot my Veins so the problem must be more to do with the quality of them?
Keith.
Hi Keith
So sorry you are having trouble with veins on top of everything else. I've been there and have the tee shirt! You are right, it does depend who is doing it. I always wonder why the plebotomists, who get paid very little, in the scale of things, always seem to find a vein first time! My highest score was 15 tries!
Do hope the chemo is going well and the side effects keeping to a manageable level. You are always so encouraging to everyone else.
Let's hope that eventually they do them all by injection, even if it means a long wait for phamacy etc.
Very best wishes.
Mavis
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