Hi Eve and Megan,
I had my second infusion of Zometa today after my Bendamustine infusion. I asked about the regime and I was informed that I will have 8 monthly infusions, followed by 8 bi-monthly infusions and then stop.
So that's the Nottingham regime. 🙂
Regards
Dai.
Hi, (name?)
Ellen is the administrator and specialist nurse at Myeloma UK, the hosts of this forum… the contact number is in bold orange at the top of this page but here it is: [b]0800 980 3332[/b]
The nurses at Myeloma UK will answer any query concerning Myeloma for you on the phone. 🙂
Regards
Dai.
Hi Sue,
Perhaps Scarborough is a little too impersonal, as well as being far away, even if it was a place you both enjoyed visiting. The cricket pitch sounds really good for you, because you will be able to visit easily, walking and talking as you traverse the ground… although you might want to talk internally if there is a match on… 😉 and for Michael, it sounds as if he was relaxed and at peace while watching the cricket… that's a good start for him and a restful resting place. Not the Major Oak please :-0 he would certainly get no peace there.
I have expressed my wishes… I want my ashes interred beneath the roots of an apple tree, a sapling selected by Janet, in the grounds of my Grandmother's old farm in the Preseli Mountains of North Pembrokeshire. I love that place, with its views looking down at the bays around the coast and out over the Irish Sea… I spent some of the happiest days of my childhood there and it is the location of my second novel… which I need to finish sooner rather than too late.
I am sure your decision, when made, will make the girls feel as if their Dad is at rest… at the moment the urn is a constant reminder and perhaps that is why they want him to be 'free'.
Wishing you all the best wherever, whenever… you will know. 🙂
Dai.
Hi John,
After 4 years I had my first infusion of Zometa tagged on to my 2nd infusion of Bendamustine Cycle 3 last month. Tomorrow will be my 2nd infusion of Zometa with my 2nd infusion of Bendamustine Cycle 4… I had the symptoms described by others as 'Zometa Flu' last time but nothing too unpleasant… I will monitor and report over the next few days. 😎
I was told that the Zometa will be tagged on to my current treatment for its duration and thereafter on a monthly basis. Of course I don't know yours or any one else's prescription but I imagine it's more or less universal… so why do some people get it monthly and others bi-monthly etc? Is it a matter of how long you have been on the Zometa or its equivalent? i.e. Have you been on it for a year or 2? I have been told that the course is normally once a month for 2 years and then finish… but I'm sort of confused by reports from users on this site and some conversations with patients at the hospital whose experiences differ from person to person. :-/
Regards
Dai.
Vicki,
Remind me, where is Colin at the moment… post SCT but for how long etc… and is he on any treatment, maintenance etc.
Regards 🙂
Dai.
Hi Andy,
Is Keith married? Has he got any family close by? He never mentions his support network and I sincerely hope he is not going through all of this on his own.
10th March was his last post and he had managed to get home at that point… here's wishing him all the best and hoping that he is fighting his MM on an even keel.
Dai.
PS… the same thoughts go out to Scotty too… he was ahead of both Keith and I but only by a month or two… does anyone have any contact with Scott?
Hi Billy,
I can only imagine that you are either on megabucks in your job or you believe that the difference between your wage and all possible benefits makes this suffering you are going through seem worthwhile.
Put it this way… your insurance firm gets a claim from you saying you have got a terminal illness and you wish to make a claim against it… but you continue to work full-time in a job known for its need for physical strength and endurance?!!? To any outsider it may seem that you are stretching a point… you want your mortgage paid off because you are terminally ill, literally dying but you want to continue to go to work and pick up a living wage.
Of course we know that that is a misnomer… the Billy who could not walk 10 yards or climb stairs is a far truer reflection of the Billy with MM – your determination to put food on the table and pay your mortgage is commendable but short sighted IMO. For very little shortfall you could be sharing valuable time with your wife and family without wearing your body out before its due time.
You could easily finish work on grounds of physical disability… simply not being able to continue to carry on working because of the physical strain on your body and your bones in particular. Then you could claim Jobseekers Allowance, Disability Living Allowance, including the higher element of Mobility Allowance that qualifies you for a new car. I don't know if your wife works but she could claim the full amount of Carer's Allowance, Housing Benefit, Family Tax Allowance etcetera. Then you could put in your claim, with all these benefits as proof that you are indeed not only living with a terminal illness but that you have reached a point where you simply cannot manage to carry out any sort of work anymore.
By continuing to go out to work, perhaps with the support of workmates who ensure you get a high proportion of light duties and non-physical jobs, you weaken your case for any kind of recognition of being terminally ill. Forget the 'terminal' and look at the 'ill'… that's what the insurance company are doing.
Good God, I wish that I could go out and walk a hundred yards, I would feel nearer to heaven than the grave, never mind go out and put in a day's work on a construction site… but I can guess that your position is not that clear cut and that it is taking a lot of sacrifice to do what you are doing.
If I was you I would bite the bullet… go see your GP and explain that you simply cannot work any longer… that you have reached a point where your body can no longer sustain the physical effort needed to do your job… any job. Then, armed with a letter from your GP you can go armed with a 6 or even 12 month note to your employer and ask for Redundancy on grounds of sickness… if that is not applicable then go to your Job Centre and get advice (perhaps to the Citizen Advice Bureau as well as).
Once you have a claim for unemployment everything else follows… Housing Benefit, who will pay your mortgage interest payments until your insurance company pays up, Disability Living Allowance, including the Higher Mobility Allowance, both of which are unaffected by any other claim or savings etcetera… and any Tax Credits of which I know very little about.
You could be at home, spending quality time with your family instead of making a needless sacrifice for a combined shortfall that is just not worth the time or effort.
[quote]I have a mortgage and 2 kids and wife to feed I know deep down i cannot work like i used to but this has forced me to go to work knowing that each day that i do is shortening my life and possibly making my condition worse but i cannot stand by and watch my family struggle .[/quote]
Sorry Billy but you are talking to the wrong crowd here IMHO. There is hardly a one amongst us who have not suffered financially, seen savings diminished to nothing and had to cut back in many ways compared to previous lifestyles. You do not 'have to' do anything… there is a solution that is not too painful and once the insurance have seen you reach their criteria and paid off your mortgage then the shortfall between a living wage and benefits will fall in your favour with the difference making you better off on benefits. (Even if the insurance company only initially takes on the mantle of paying your interest until the point comes where your Doctors say 'that's it, last legs'- either way the pressure is off you and on to them, never to return to your door)
Take advice Billy, start with the CAB and the MacMillan's Nurses financial advisers (they will also make a one off payment to help) then follow their advice as I have stated above. It may seem a tad premature but with the ignorance that surrounds MM you have to help yourself by taking positive action and not push yourself into an early grave for a few pounds a week.
Regards
Dai.
3.2 in 2 visits, is that right? Why didn't they try for 3 or 4? Or do you mean 2 actual visits… different weeks etc.,? :-/
I know that I got the same as Colin… 2.1 million and that after five days x 5 hours a time for 5 days and 2 midnight returns to the hospital for 2 shots of Plerixafor… it was a long week and 'someone' was supposed to ring me Friday evening with the results but 'someone' forgot and I had to ring in on Monday afternoon with frayed nerves to be asked 'Didn't 'someone' ring you? No! Oh, well you got 2.1 million so that's enough for one transplant, so you are Okay to go'. 🙂
Honestly, sometimes… not often mark you… but sometimes. 😉
Dai.
Good luck with the Velcade David, I had mine in the bad old days of Cannulas and my veins are a bugger to find at any time so finding a suitable site included a lot of fun and games… so sub-cut sounds like heaven (I have been taking Clexane daily – self administered at home – for20 months, so I am used to moving them about. 🙂
General fatigue and PN were my worst side-effects, no nausea and the fatigue was not that bad… but the PN on top of that caused by the Thalidomide in my frontline CDT was my worse enemy and although I was told it would wear off in time, over 18 months later it is still bad but settled, if that makes sense. Not everyone gets it and if you had Thalidomide in your frontline treatment and didn't get it then there is a fair chance you won't get it from its cousin. 😎
Best wishes for your treatment and I hope you get the full whack of remission (12 to 18 months I believe).
Do you have sufficient Sten Cells for a 2nd Transplant? I can't remember.
Best wishes 🙂
Dai.
Hi Eva,
My Dex kicks in within 2 hours, is at full force within 4 hours and dies away at 15 hours. Sometimes I set the alarm for 6am to take them early but I have learnt to take them at 8am generally because the day is a write off for going out and about as my permanent side-effect is sweating, with changes of tops on average 6 times in the fist 10 hours. I once had to go into clinic on a DexDay tm and the phlebotomist though I was having a heart attack with the copious sweating and beetroot face. 😀
Regards
Dai.
Welcome home Frank indeed. 😎
You are not on your own regarding that feeling of fear Jean… Janet had it too and in a way so did I. Don't get me wrong, I was glad to leave hospital and get home but I was aware it was just the 2 of us with me as weak as a kitten and with a long, slow recovery ahead of us.
I get a small version of that same feeling every time I come out following an infection. You are so conscious of the support and resources available to you while in hospital and the vulnerability of being at home when things start to go awry.
But you have Frank home now and each week will show a marked improvement as long s he takes it nice and slow and easy.
I didn't have Frank's problem with the stairs… but then again I live in a bungalow. :-0 😉
You could always ask your GP to organise a drop in from the District Nurses for the first few weeks… they are worth their weight in gold.
Enjoy the release and each other's company.
Much love and regards 🙂
Dai.
Well I went in today at 11am and had my blood taken… my Neutrofils were 1.17 which meant that Thunderbirds were Go… but very slowly, in 1st gear and with a hill start, on a 1 in 3 hill. The Bendamustine was ordered at 12pm or slightly before. It arrived in the Day Case Unit at 3.50pm and I left the unit at just gone 5pm. It made for a long day, leaving us both more than a little stiff and sore. I knew that things might be a bit slow with the catch-up following the Bank Holiday but even so.
But never mind, at least I am back on treatment and I will hopefully be back for more next Tuesday as long as my Neuts are OK.
David, my experience with Velcade was both good and bad. Good because it knocked a secondary tumour for six and my light chains for seven within the first 2 Cycles… I was in complete remission after 5 Cycles and treatment finished after 6 Cycles. I should have pressed for the full 8 Cycles (as I was told I would from the start) to ensure that the disease was properly put in its place as, like Slim, my MM returned almost immediately (I was declared in full remission in mid-October and declared as relapsed in December). I was told at the start of treatment that remission could be anywhere between 6 and 18 months but I only got 6 weeks. From what I can work out it seems that the more bone damage you have the less remission you get.
I have always responded well to treatment but not as well when left to my own devices while in remission… which is why I haven't given up on Revlimid as yet. I started Revelimid (after waiting for five weeks while trying to qualify for the Carfilzomib trial which I missed out on by a week) in February 2012. My Light Chains were at 125 at the start of treatment and at 525 at the end of treatment in December 2012. I am still convinced that my struggle with C-Diff and the difficulty in absorbing the Revlimid was the reason for the rise in my light chains. Even so, my Light Chains rose by 400 over a 10 month period. In the interim period of 4 weeks between coming off Revlimid and starting Bendamustine my Light Chains rose from 525 to 2,800… they are now down to 575.
So Velcade is certainly effective as a treatment but I am not sure of its efficacy as a long term remission giver. But I am a believer in Revlimid. As you have relatively little bone damage you may well do better.
Here's hoping. 🙂
Dai.
Hi Eve,
Keith's last post was on the 10th of March, a reply to me when I asked him about his latest treatment (below).
Being home is good although he is still neutropenic with very low platelets. I am hoping that this latest treatment is working and that he will let us know of any progress as soon as he can. 🙂
Dai.
[quote]Hi Dai, yes Prodeserone is a close relative of Dex but not as strong as you don't get the sugar spikes with it like I did with Dex. And you don't get the come downs when coming off them. I don't understand the difference between PP's and Light changes either,it's enough trying to come to terms with what I've got. The got rid of the infection and I'm back at home trying to recover. Temperature is normal once again and I started on Melphalan/Pred on Friday.
Take [i]care[/i] all
Keith.[/quote]
Hi Eve,
I have to agree with you regarding sending the consultants back to school.
One of the prime objectives in giving treatment is to ensure a balance between efficacy and quality of life… apart from hospital visits for consults and treatment I have not been out of the house in 6 weeks due to being Neutropenic. I told my consultant last Monday that I could not see my Grandchildren and that they and I were upset about the situation but she glossed over my concerns and told me to carry on avoiding them and people generally (although they bring us in to packed clinic and Day Case waiting rooms where patients and their carers are sniffling and coughing like there is no tomorrow).
I'm slowly going stir crazy and unless they find a way to get my Neutrofils above the 2.0 mark this situation could continue for the whole 8 Cycles. That is one of the main reasons for me wanting to get on the Kyprolis (Carfilzomib), Cyclophosphomide, Dex trial… all done by tablet form and not known to push down the bloods. Bendamustine might be effective but it is an old fashioned hammer of a chemotherapy and it caught me at the start of treatment when my Neuts were low (1.7) and they have never had the chance to recover.
They will be assessing the trial over the next few weeks… part of me hopes that I can't have a 2nd infusion this cycle which means that ostensibly I will have been off, or without, treatment for at least 3 weeks by the start of the next Cycle… if they declare me off Bendamustine then I will only have to wait 2 or 3 weeks before being qualified for the trial.
I would like to think that they discuss my case and my circumstances and try to work things in my favour… 3 years ago I would have said 'Yes. they would' but nowadays?
All the best for Slim as he starts on the Velcade… my advice is to go for the whole 8 Cycles, even if he reaches 0 after 4 or 5 Cycles… I did and they finished my treatment after 6 Cycles but my MM came back pretty quickly… the whole 8 Cycles doesn't guarantee longevity but it certainly helps to drive the disease right down and gives your cells a fighting chance.
Regards 🙂
Dai.
[quote]Never mind Dai, the neutrophils are just being a bit sluggish! Hopefully they will gird their logins and get a wriggle on! [/quote]
Hi Vicki,
They certainly need to get a wriggle on… I will have my bloods done in the Day Case Unit on Tuesday morning (due to no clinic on Easter Monday)and if my Neuts have managed to squeeze over the 1.0 (from 0.88 – a growth of 0.12) then an order will be placed with the pharmacy and treatment will continue when they have made up the Bendamustine to the right strength and consistency. 0.12 is very little but I'm hoping for a bit more to allow for a full strength infusion.
The problem I have had since starting on Bendamustine lies in my Neutrofils score. Because the 2 infusions are only a week apart my Neuts don't have time to recover and I end up having a half measure for the 2nd infusion… this is Cycle 4 and I ave not managed to have 2 full strength infusions yet.
Wriggle on Neuts, wriggle on.
Dai.
Hi Eve,
I am so sorry that Slim has relapsed so soon, I was hoping and wishing for at least a couple of years for the both of you… but there you go and Velcade will most probably be next. It is an effective treatment and much easier now that it is delivered subcut… no more cannulas.
Did Slim get enough cells for a 2nd SCT? I know that sometimes they say no to a 2nd SCT if the first one hasn't produced a long enough remission but you never know. I had exactly 10 months as well and I was feeling great when the relapse came, I couldn't believe it. The appearance of a tumour on my sternum sorted that question out but Velcade saw that off within a month. I got full remission from Velcade after 6 Cycles but it came back pretty quickly.
Ask your consultant about the Myeloma 5 trials which are just starting… it's Cyclophosphamide – Carfilzomib (Kyprolis) – Dex… its being administered by MUK and they are looking for 300 trialists. Kyprolis was licensed in the USA last Summer and the results of this trial will help towards getting it licensed here. Although I am doing fairly well on Bendamustine it is slow and it keeps me locked in neutropenia and I am virtually trapped in the house… so the Kyprolis trial (which I narrowly missed out on the original trial last year) is something I am going to press for. There are details on the home page (you have to dig a little) so go and look see.
All the best to the two of you:-)
Dai.
