This topic contains 116 replies, has 23 voices, and was last updated by 
Ali 11 years, 5 months ago.
Gordon Bennett !! Wendy, you must have been really up and down, what a horrible few days for you. I'm glad you have plateaued again. Stay there for as long as possible please. I don't know why they decided to treat now! I was in same cart as you until last week, then out of the blue really, I expected next Revlimid prescription but got 4 more weeks off and ' we think it is better you start as soon as possible, ideally within the month! ' gobsmacked, ! I'd gone on my own, husband no where near, I had to ask if the treatment could be arranged around my holiday with the kids in June so that was it. I don't see consultant again until I've completed first cycle of velcade. I do have a long list of questions for him next time though!
Vicki, I'm told I can use the stuff they already use on my hair and should be fine, I had no idea that being blonde was so high maintenance!! And you might find this amusing, in preparation to go away , yet again I have had to shave my legs! This is becoming a habit now….. One I thought I grew out of with the start of the menopause in 2006!
And Pat, you are up late, or early! Dex? Yes I saw that lady, I liked the pink too. I see you work in a university, as do I. The students we have are a nice bunch, and yes they do keep you young.
Love Helen
Hi Helen still sunny here!! maybe cloudy saturday then good they say so enjoy, anyway you will have fun whatever the weather i am sure, happy for you re your back not being MM and just a slipped disk hope that you feel better today, take care San xx
Dear Vicki, Eva, San and Jean
Wonderful holiday in Cornwall thanks, weather splendid as usual down there. 🙂 Vicki, I took the daughter and the boyfriend……. Cost me a fortune they did…. Returned home to the usual frostbite and wind! 🙁 And a letter from the hospital detailing the velcade appointments, :'-( hey ho just got to get on with it but I still can't really believe it is happening to me:-/
Anyway, the pins and needles in my hands and feet, probably down to the myeloma and as the Revlimid is wearing off I'm noticing it, I have had it all the time, I am to have some nerve conduction testing and will be closely watched on velcade, maybe starting on a low dose and see what happens.
The eye?… Well more blood tests but not too worried … Will check the platelets ….as you suggested Eva.
San your mums results are heading in the right direction.
Jean, how is Frank doing now? I do hope he is feeling more like himself.
And Eva, thanks for your sound advice and support, I hope your trip is a good one and your son and gf indulge you well
Love Helen
Hi Helen,
Have you asked your consultant about the possibility of MUK5? Is it being operated at your hospital? The chance to get on a Kyprolis trial is worth taking if the chance is there.8-)
Go look see and ask.:-)
Dai.
Hi Dai
You have a good point with Muk 5!
I asked about it,consultant said Slim had not had Revidimide so did not qualify, Helen has not had Velcade so questionable!!!
But I am making further enquiries
The reason why is when Slim had CDT over a period of six cycles it had no effect , the myeloma increased to 80 percent, now they are talking about Revidimide which based on Thalidamide.
Helen it is worth asking if you come off Myeloma X1 trials what are you options!!!
I know it's the last thing you want to hear,as you have to adjust your mind set to new drugs,but I think it is worth asking and exploring. As you can always go back to Velcade at a later date but MUK 5 might not be there later. Love Eve
Dear Dai and Eve
Thank you
I have asked about future trials, unfortunately there are none set to run here in the next few weeks, muk5 is on its way but you need to have tried Velcade and it has to have worked. Maybe there will be others I don't know. They are concerned about my neuropathy as there are very few other options if I can't have Velcade.
Anyway the plan is to try it next week, watch this space!
As for clinical trials, I've thought about your other questions Dai and wondered about adding in my 10 pence worth! As you know, my employment over the last 20 years has been as a clinical trials nurse! I have recruited and supervised thousands of delightful people on their journeys through testing everything from foot cream to antipsychotics, with analgesics and cardiology medicines, antidepressants and bandages to name but a few.
I don't have any answers. The trials are to inform. They give a general view….. We test a substance on a hundred people…. Watch to see if it works…. If it works for 80% with no side effects…… Then it's a winner! If it works for 50% it's also worth a punt…… But for 50% …… we have to remember that … it didn't work and that disappointment puts many people off. Until we can look at the biophysical makeup of an individual and tailor treatment it is not going to change and unfortunately I think we are quite a few years off that yet. The trials are also tailored so that there is as even a playing field as possible, if all the participants have similar disease stages and trajectories then we are able to make closer comparisons for efficacy.
Incidentally Europe doesn't accept American findings so that the European scientific and pharmaceutical business is able to compete with America so it is a highly political arena.
The National institute for health research is running a campaign this month, link below, which is asking patients to enquire more and get involved with more research.
I do think you are right , we have to ask what is available, but we have to accept that there have been many mistakes in the past with poor research and it is now very carefully regulated. I find it quite salutary that my mother was given thalidomide for morning sickness in 1959 and I have been treated with one of its analogues now… She never took it as she thought it might be bad for the baby,so my sister was ok. But there that is one of the reasons that drug trials are now so carefully monitored.
Love Helen
http://www.ct-toolkit.ac.uk/news/its-ok-to-ask-the-nihrs-new-patient-empowerment-campaign
Well, good people out there, does anyone have any tales to tell about working and energy levels while on Velcade? ( with dex and cyclophosphamide)
We're you able to do it? Full time? Part time? No time?
If not what happened?
Could you drive?
Did you have periods where you were 'good' and 'bad'.
Could you plan a day when you could do things and other days which were written off in advance?
I'm trying to make a decision about what to do, both short and long term, in fact I've tried to make this decision a few times already and still not managed it.
I start on Tuesday pm, nerve conduction tests show carpal tunnel syndrome so think it will not inhibit treatment, and the black eye was not worthy of any comment……. have I poked it on something. :-/ (well…..:-P I think I'd have noticed)
Love Helen
Hi Helen, I have been on VCD since Sept. initial dose of twice weekly had to be reduced to once a week x 4weks then a week off. I have found that after treatment on Tues, Weds and Thurs are not so bad and those are the days I plan to do things. Fri is a sit and read a book day and some Sats are the same. My main problems are weakness, shaking and fatigue and PN which seems to vary in strength and is particularly bad today. I do think a lot of the feeling bad is due to the Dex comedown which makes things feel worse after the initial boost. As for work I am not sure. I am 67, older than you and have found that I was not able to work and will officially retire at the end of July. Infections whilst on chemo also need to be considered and I know you are a nurse and therefore likely to come into contact with bugs more than some of us. But once again, it can be different for different people. Even reading on here there are so many different reactions to Dex let alone the V & C. I would just say that the side effects have intensified the further down the line we get, so maybe it is a decision you can postpone for a while. I hope this has helped in some way and that the treatment helps in a very big way.
Love Pat
Hi Helen i know that Mum feels sick on her cyclo day even with anti sickness tablets and teary after a couple of days after dexy, but it may not affect you in the same way, hope that your energy levels stay ok , take care and good luck on your new regime, and no more poking yourself in the eye!! love San x
Hi Helen,
I am now back on Velcade for the second time, having completed 6 Cycles between May & November 20011 (slight break for a holiday in September, 2011) . First time round it was cannulated, this time Sub-Cut.
This is only Cycle 1. With Velcade on Days 1 & 8 and then 11 & 19… with Dex on Days, 1,2, 8 & 9 – 11, 12 & 19 & 20. I will then have a week off before a consult on Monday 27th. (Don't confuse days and dates like I did). Basically I will have 4 doses of Velcade and 8 doses of Dex in this 2 week window with a week off before the next consult.
I have been taken off Bendamustine for the same reason as our friend Keith… the Chemo was bringing my Neuts down too far to the point where they could not recover between infusions… but the rest of my bloods are Okay so we were looking for a treatment the had a chance of keeping my MM at bay while allowing my Neuts to recover. I was Neutropenic for almost 12 weeks with the Bendamustine and my quality of life, especially with seeing family etc., was non-existent. I had 2 weeks off with 6 GCSF injections before starting Velcade and my Neuts went from 0.53 to 2.26… so we are up and away with 2 infusions under my belt (literally) and 4 doses of Dex – the same next week and we will take it from there.
I remember my first time on Vel/Dex and it's more or less the same with weariness and fatigue being the worst effects. Sub-Cut is much, much better and easier to take than the old cannulation and my PN, which was bad anyway, seems to have remained the same.
If my bloods improve (or stay the same) with recovery shown in the Neuts range then the idea is to try for 1 infusion per week with 1 Dex to follow… with the idea to stretch my treatment out… i.e. 8 Cycles of Dex over a longer period. Here's hoping.8-)
I don't go out to work… and I haven't since selling the Pub/Restaurant in September 2008. My bone damage has seen to that part of my life and while I have wanted to extend my working from home I have found that treatment has put paid to any regular working patterns. I appreciate that some people feel obliged to work for differing reasons but the chance to spend time with family and trusting to benefits etc., is also an attractive way of using the time left.:-D
For those that do go out to work I wish you well and I hope you cope… but not at the expense of creating rifts between work and family… and yes, I do understand that some people are better off than others and can afford to take the risk and wait until it gets too bad to stay at work.
Love and the best of health to all.:-)
Whatever it takes.8-)
Dai.
Helen I can only give my experiences with PAD (Velcade, Adriamycin, Dex).
I had 3 cycles and worked full-time throughout. It wasn't really until the 3rd cycle that I suffered what i call my 'sofa days', i.e. feeling drained and a bit nauseous and this tended to last a couple of days post the velcade injection.
Hi Helen
Slim had 6cycles he was much better in himself. On Velcade,hated the messing about between bloods and treatment,we did try to vary it as spent an awful lot of time just waiting round eg bloods 9am Velcade 3pm never,never on time,also once a month tablets late as usual by hours usually 6pm. Towards the end went in at 9am took slim home,went back at 4pm 60 mile round trip.
Very little side affects remember him getting anxiety symptoms,thought I was going to crash the car,he new he was not being logical!!!.one more that wil not effect you,pain in testicles,infection one of the less known side effects.
If you could work through Revidimide ,I think you will be alright on Velcade ,PN was Slims problem towards the end but not bad,did need to massage plus change duvets as to heavy on feet. He was on Claxane right through treatment,plus I did keep antibiotic s in the house,his skin became very weak,would bruise easy plus break,although I treated it infection would start,so had minor trips to are local hospital,who often supplied us with latest dressings plus antibiotics.very helpful,but of course new nothing. About Velcade.
Helen you enjoy working,if it means long hours on your own at home,stay at work,I think the biggest danger is depression .as you do not live far from the hospital you should find it a lot easier. If work is happy,go for it. Love Eve
Hi Helen
Can't give you advice on the treatment…..but glad you had a great holiday, and that you are gripping yourself and getting ready for this next course! Re work it can only be your decision, but if you feel you want to go to work, you are well enough to go to work and you can fit around your treatment then why not. Do you do part time? Maybe that would be the right balance. At least going to work can give an additional welcome distraction from this condition? 🙂
Not been on site recently ipad went wrong and too lazy too turn the main computer on 🙂
Vicki and Colin xx
Hi Helen
I thought I'd come back to you on this thread! I think I missed this because I haven't been on so much. I feel bad because, as I have been feeling better I didn't want to be reminded of Mm all the time. I always remember how Bridget was so faithful supporting everyone in spite of how I'll she was getting. It is a challenge isn't it! I am saddened how many more folk are joining the Site. I am now finding it hard to keep up with everyone's story. People like you, and other long timers are special to me because I have appreciated all your support.
About carpel tunnel, by the way, I had injections in both wrists and over a number of weeks they have been completely cured. I then had two. Injections for clicky fingers and they too have been very successful. I feel like I have been given new hands. Just a thought they might work for you. It would be one less thing to cope with.
Do hope the Velcade doesn't cause too many complications and that you don't lose your hair.
Would you have other interests if you gave up work? I think it must be time to seriously consider finishing. Can you get you pension enhanced if you leave on health grounds? I know things have changed with schemes since I finished.
Take care. – lots of love.
Mavis xxx
Dear Pat thanks for this info, it's sometimes good to have an idea of what to expect even though we all differ so much. I'm not in contact with patients much at the minute, we are at the end of an enormous study looking at depression and have lots of tidying up to do. Once that is done I could sit back a bit, I am very lucky where I work, I can do paperwork at home and can do a lot of stuff on the phone, it is good to be able to plan a bit.
Thank you too San for your good wishes, hope your mum is still ok, no more eye poking has occurred!!
And Tom I'm glad to,hear you managed work ok, I feel a lot more apprehensive going into this treatment than the last time, I think I was sooooooo ill and didn't realise it then, i didnt have time to worry, whereas this time my counts are much higher and I'm near normal now I'm off the Revlimid. You don't mention driving, am I allowed if I have no ill effects, I've been warned off for this week and all treatment days?
Dear Dai You will be relieved that this treatment round has started uneventfully, I for one would like you to keep it this way! Spreading out the Velcade seems to be a good idea too so I have my fingers crossed that all goes well for you and it keeps you going for a very long time.
And Hi Vicki Eve and Mavis
I'm not a work addict, it's just that the diversion of it is good and most of my friends still work, children away, so home is not a place I have ever spent much time on my own except after my SCT. It was so hard being home alone then that I think I felt a bit trapped in the house. We have had such awful weather too that I was really trapped. I don't like viewing the house as a prison but maybe that is how I feel about it! Anyway, I'm prepared now for a few weeks of indecision and see how I get on with the treatment.
Also Mavis, it's lovely that you are able to forget about mm a bit, drifting in and out of the site is a good thing, I find myself less fixed at times too.
I'm not having any treatment on the carpal tunnel yet, now I know what it is I can just wear the splints, see how it goes with the velcade then see after the course finishes.
Love Helen
The topic ‘Lightly chained to the Roller Coaster Ride’ is closed to new replies.
