Hi Keith,
Melphan I know of course, most of us remember it fondly 😉 but Prodeserone is only vaguely familiar, I know I have never encountered it… is it a type of Steroid/Dex's big sister?
With being Bence Jones I deal in Kappa Light Chains and I'm not very good at equating them with PPs but I do understand that 84 is quite high… and that it indicates that your own marrow is the place to start the fight, hence the Melphan I suppose. Let's hope that the M&P combo start bringing the PPs down and help your bloods to come up.
You must feel quite lonely in that hospital bed my brother but you are not alone if positive thinking and the odd prayer find their way to you from here. Keep fighting Keith… and steer clear of cold baths. Every time I go in with a high temperature/sepsis they give me paracetamol which breaks the fever before the antibiotics kick in. Tell them you have a slight tooth-ache and ask for a couple.;-)
Dai.
Hi Tom & Eve,
I took 2 paracetamol yesterday afternoon once I had got down to 37.7 through drinking for Wales and my temperature was down to normal within 3 hours. I was soaked through with sweat so the paracetamol had done its job. It has remained stable and I am feeling much better. Still sweating buckets but it is DexDay tm so nothing new there. 😉
I didn't have 'flu' symptoms Tom, just the temperature and that was 'only just' into fever. I took 5 half-hourly readings before taking the paracetamol and the highest reading was 38.20 and there were 3 more readings above the 'fever' mark (38.10 – 38.06 – 38.01) but no indication of a climbing ratio. So you are quite right that I should not put the temperature down to Zometa Tom but in this case there does not seem to be anything else to pin it on and hopefully it is now under control and one to put down to experience.
I am on a four week infusion plan Eve, to fit in with my Bendamustine intake, so it looks (as with Slim) as if there is a certain amount of flexibility with Zometa which is good to know. 😎
Regards to all… now back to the Dex inspired doolallyness. 😛
Dai.
Hi Dan,
You need to speak to a MacMillan nurse regarding putting in a claim for DLA (Disability Living Allowance). DLA is separate to any earnings, pensions or savings etc., and your Dad will most certainly qualify. He will also qualify for the mobility component as well, which means a new car (changed every three years) so if you haven't passed your driving test get ready for lessons. 🙂
Your Dad doesn't need to be able to drive, he can nominate up to 2 drivers to drive for him. If at a future date your Dad is fit to drive he can have the car adapted to suit his needs. This mobility component is a godsend and allows youths freedom to go where and when you want… once you have the car it is your Dads to do what he wants with it, there are no restrictions excepting only the named drivers being allowed to drive it – regardless of the allowances of other drivers – it becomes the family car and you can use it as such. You can also apply for a Blue Badge, which allows you to park in disabled bays which is great for hospital visits etc.
You can have a cash allowance which you can put towards buying a second-hand car but I would recommend the 3 year lease scheme with a wide choice of cars available. If you see a car in the catalogue that you like but is outside the allowance you can pay a premium to get the model you want. For instance I wanted a Ford C-Max with all the whistles and bells and it cost me a premium of £400… but there are literally hundreds of cars with no premium needed… so check it out. 😎
It is in no way a relief from the disease but it makes getting around a trouble free option (Tax and insurance etc are paid for, you only have to pay for petrol/diesel… everything else is governed by the scheme).
Dai.
Hi All.
I had my first Zometa infusion yesterday and today I have had a borderline high temperature (38.20) which I have sort of brought under control (keeping at about 37.70 at the moment) with a couple of paracetamol. Being neutropenic I don't want to ring in unless it gets to 38.60 or above because City Hospital is nothing if not thorough and I will be given the full treatment (cultures, 48 hour antibiotics etc.,) so I am glad to here about this 'Zometa Flu'.
Strange that it seems to be so common yet the nurses/consultant don't mention it as something to look out for.
I'll keep with the paracetamol until tomorrow morning and see where I am then. 😉
Dai.
Thanks all,
I had Infusion 2 this afternoon, followed by a fix of Zometa… my first ever. My consultant said I had slipped through the net and that I should have been on Zometa for a year or so! Well there you go. 😀 :-0 Every 4 weeks from now on which will fit in with the Bendamustine treatment, so no extra journeys for the time being at least. 🙂
Fatigue seems to be the only perceptible side-effect with Bendamustine but I can deal with that… I just hope my bloods recover a bit better this time (last Cycle included a stay in hospital(. Hopefully I can get my Neuts to 2.0 or above which will see me ahead of the game and ready for 2 full strength infusions next time, which will hopefully force the light chains further down the scale. 🙂
Onwards and upwards rather than sideways, eh Tom? 😉 😎
Dai.
I had my pre-Cycle 3 Mk 2 consult today and my bloods are down (except for my platelets which stay at 105) including my Neutrofils at 0.8 which means I am neutropenic… again. It seems that this will be the pattern while I am on Bendamustine but that's OK as long as I can continue.
The 20 day rest period between infusion 2 and the next cycle allows my bloods to recover but not greatly (last Cycle Neuts went from 0.8 to i.49 and then down to 0.8 again). My consultant was happy for me to continue on half measures… the 2nd infusion tomorrow will be half-strength, as it was on the 1st Cycle and I am OK with that as long as it works.
Which is the good news… I started Cycle 1 on 2200 and came down to 880 after Cycle 1. The latest reading in (for Cycle 2) shows another drop from 880 to 580… and that is with just the 1 infusion for Cycle 2 because I missed infusion 2 due to an infection… so all in all very satisfactory… touch wood etc., but Bendamustine seems to be working, albeit slowly.
Baby steps but that's okay as long as this pattern keeps up.
Feeling teak and weary but hey! 😎
Dai.
Hi David,
After reading your post about your sneaky wife I got Janet at 11.59pm last night.
I blamed you. 😉
Dai.
Hi Sue,
I am so glad that the funeral went well… a time where you have to share your grieving with wider family and friends. But now it is your grief, yours and your daughters and inevitably and eventually yours alone.
I suppose relief is a genuine reaction, I am sure that Janet will feel relieved when I go… not of my going but of the interminable waiting for the inevitability of my demise after so long with the disease in unstoppable regression.
There are quite a few of us on the board now who have reached the point of holding off the end, rather than those who are striving for bouts of remission and some sort of 'normality'. You went through all those stages with Michael and then had to watch and wait for a few months knowing that the end was near… but Michael fought until the end which showed great spirit but frayed your nerves and kept you in a state of fear and watchfulness that was so very hard to bear.
My thoughts are with you and your daughters (I have 2 daughters and a son) it is you who has now to pick up the pieces and wonder what to do with them… I wish you all the very best of good fortune as you find out.
Best regards 🙂
Dai.
Hi Terry,
The conditions caused by your Plasmacytomas sounds interesting but nothing I have ever heard of before on here. I think they are doing the right thing by keeping your treatment going while they try to sort out the other problems with RT and the like… because it doesn't sound as if those problems are being caused by the Bendamustine perse, although the chemo will bring your blood levels down. They did so with Keith to the point where he could not continue and now he is on CDT with continuing blood levels problems.
I was neutropenic for a week and only had 1 infusion during Cycle 2 because I was in hospital with a high temperature when I was due for my second infusion. I had my first infusion of Cycle 3 last Tuesday and I am due foe Cycle 2 this coming Tuesday, bloods permuting but with my HGB at 10.1 Platelets at 101 and Nuetrofils at 1.49 I suppose it's only my Neuts to worry about… but they say I can go ahead as long as my Neuts are 1.0 or more… we will have to wait and see. If it is borderline I will ask them to go ahead because then I will have 20 days to recover before Cycle 4.
I am told that NICE rules are a check up on PP's/Light Chains after 3 Cycles and as long as there is evidence that the Bendamustine is having a downward effect then treatment can carry on… if not?
I am frustrated by my FreeLite tests taking so much time to come back… only one reading since I started in January yet I have had 3 tests… fortunately the first test showed a drop from 2,400 to 880, so I remain hopeful for the other tests.
I feel quite good in myself excepting for the spongy feet, raging PN and Tinnitus like chapel bells but none of those delights are new and they don't seem to have got any worse.
Keep in touch, Scotty is 1 month or so ahead of me, perhaps he might pop in with an update too.
I do hope they sort out your Plasmacytomas to the degree where your treatment can carry on without interference.
Regards 🙂
Dai.
Hi Jean,
After all Frank has had to put up with and his reluctance to go ahead with the SCT in the first place you can hardly deny him a rounded 'I told you so'!
As Tom said, we have a wonderful NHS as long as it's weekdays. My record with infections are always just before or during the week-end and I know that I'm in for a torrid time with part-timers and nobody seeming to be in charge.
Still, its good that starting the process on Monday gives Frank the best part of 5 clear days with all the best medics available to administer the process and giving Frank the best of service and the best of starts to his SCT. 😎
All the very best. 🙂
Dai.
Hi Ann & Pete,
I'm really sorry that Pete has been caught up in one of the side-effects to such a degree… I know it's not much comfort but there have been plenty before you with similar problems but they all got past this stage and then had a relatively smooth passage for the rest of their SCT's… I hope it's the same for Pete.
I remember having terrible trouble swallowing my meds… gagging on each one and I had a lot to take plus the ones added for the duration of my SCT but nothing like Pete's having to bear up to.
Best wishes for getting past the hurdle, I'm sure it won't take long for the medics to sort it out.
Dai.
Hi Louise,
It took 5 days on the harvester plus 2 injections of Plerixafor (sp) to get 2.1 M of Stem Cells which resulted in my having 14 (fourteen) bags of Stem Cells returned… I have been reliably informed that that was a worlds record. 😉 😎
I must say that while it was a lengthy process over 2 days it was not uncomfortable in any way just boring. Each bag held a small amount of Cells with just as much preservatives… I gather it was these preservatives that kept me on the toilet for a couple of days but no discomfort at all.
Wishing Garry a trouble free SCT… I'm glad he was a fit 70 year old which qualified him where many are turned down… our David (Perkymite) was just the same and more or less sailed through his SCT with just the usual pitfals.
Keep in touch with your Dad's progress.
Best wishes 🙂
Dai.
Excellent news Ozzy, as David said that's a fair drop and puts you firmly in the zone. 😎
Best of luck with the 2nd SCT… have they given you a date yet?
Dai.
Hi Keith,
I was neutropenic for 10 days recently and I know that it's a bit of a bugger when you are fighting without much support from your body. My neuts came back up to 1.49 just in time to have my treatment this Tuesday with another planned for next Tuesday… as long as my neuts stay at 1.0 or more.
I do hope your BMB points to a way forward for you… just the slightest rise in your bloods will offer the hope to go upwards and onwards… are you still on the CDT or have they suspended it until they get some response from your neuts, platelets and HGB?
Please keep in touch, you know we will all be rooting for you here.
Regards and very best wishes 🙂
Dai.
I'm glad that you two concur… a family argument might have made good drama but overall I'd rather settle for agreement. :-0
I'm sorry that the relapse was confirmed but the medics are on the ball with the Velcade starting right away. I seem to recall that the best results for Velcade occur in the first couple of Cycles… then it settles down with a flurry of positives towards the end of treatment. 😎
I started treatment with my Light chains at about 120 and a secondary tumour on my sternum… the tumour had disappeared and my light chains were down to 0 after only 2 Cycles. They stayed like that until the 5th Cycle when they were declared in complete remission and treatment stopped. In hindsight I should have pressed for the agreed 8 Cycles to hammer home the results because the complete remission relapsed after only 6 weeks (although the next treatment didn't start for over 3 months).
Velcade is a treatment but not a chemotherapy… it is usually accompanied by Dex but the side-effects are not the same as chemo based treatments and therefore your appetite might not be affected (mine wasn't) but we are all different so don't treat anything any one else says as gospel… but the experiences of others are a good guide. 🙂
I wish you all the best… ask away however trivial your queries may seem to you. 🙂
Regards
Dai.
