Hi all;-)
I managed a ramble free night last night even though I didn't sleep much. Haven't quite managed that tonight >:-)
I'm only planning a short post tonight you'll be glad to hear.
Hi Eve
I'm on that Rivaroxaban now instead of tinzaparin so hopefully the needles are the thing of the past. Not throwing away my knitting ones though 😉 I'm feeling ok at the moment though that could be the Dex effect. We even went out for a Indian tonight 😀
Hi Tom
I just lay there and sent Steph for the drinks and food 😎 then I woke up and I went and got them 😛
Hi David
You make me laugh – "MY HERO" – We're just making use of the time that's left to get about whilst I can 😉
I hope your scan went well today. I'm looking forward to your Dex fuelled musings over the weekend.
We try to get to the lakes twice a year and it nearly always rains. Mind you it would be called the valleys if it wasn't for the rain >:-) and the pubs are pretty good. I can just about walk from one to another even when the suns shinning.
Hi Maureen
It took me a long time to become confident of being away from my safety net of the hospital and I was only in 3 weeks. It's still a worry now when we go abroad but in my case it's got to be done whilst I can. You may find you'll need to be patient with Ian and gradually build up his confidence – but I could totally be wrong and he'll be confident from the off. I know Steph worries about it too even more so than me I think.
Ok I said it was going to be short and shortish it nearly is. It's my last Dex day tomorrow, err today now, so only one more night of potential rambles from me left. Then we can all sit back and read David's rambles over the weekend which will all make a great deal more sense than mine. Now do I watch a film or read a book now decisions decisions.
Everyday is a gift
Received with thanks
Andy xx
Hi Steph.
When I was first diagnosed I was in and out of hospital a few times. The longest I was in was for 3 weeks, I think, because I fell and hurt my back and needed strong pain killers. I was exactly like your dad I'd lie there and just stare at the tv not watching it I couldn't even tell you what I watched, I wouldn't read or do puzzles and I ignored all visitors. I blamed it on the strong painkillers and when I was discharged, Xmas Eve, I was zombie like. I gradually reduced the dosage of the painkillers and came out of it. I now only take them vary rarely even after my recent back op I only took paracetamol or codeine tablets though I have the strong stuff to hand if it's needed.
Good luck with your Dad hopefully you can find a balance between the drugs and the pain that's not so debilitating.
Everyday is a gift
A present.
Andy x
Hi Jo.
Welcome to the forum in sad circumstances. I'm on my Dex part of my cycle so I apologise in advance if I start to ramble on. hmmm think I've started rambling already.
My understanding of the paraprotein levels is that it's a measure of how active the disease is. A high PP number does mean instant treatment unless there are other symptoms. Ie bone damage, lesions, kidney problems etc. however a change in PP levels sometime warrants action. Although a rise from from 3 to 8 doesn't sound much it is a 266% rise and is an early indication of your Dad relapsing. I personally started out with PPs of 49 and only ever been as low as 12 for 1 cycle before settling down for a while in the high teens. My latest results mmmm no my last but one test came back and my PPs were up to 26 I haven't got my last test results yet! Must ring in and find them out. My consultant said the drugs I'm on are probably failing so it's back again to the already sparse drug cupboard for me.
Ok I'm rambling now!
Oh Velcade is known to have a short term effect on MM in some people or no effect in my case, I've been on various chemo therapies for nearly 2 years now! that's a lot of drugs I've pumped into my body.
Everyday is a gift
Cherish it
Andy x
Hi David
Welcome to the forum. I was 53 when diagnosed and fit I'm now 55 and not so fit but I've not had a SCT not because of age but due to failure to respond to treatments.
SCTs are hard on the body but they do give a you hope of a drug free period. The outcomes of SCT vary wildly with some getting a long remission and others only a short remission. There is a thought that SCTs may not be right for everyone but that's a discussion that is on going especially in America.
There are some on here of the more experienced age who have had SCTs and I'm sure they'll be along to give you the benefit of their experience.
Everyday is a gift
Gratefully received
Andy
Hi Sharon.
Sorry you Eric has had to join the small but growing band of MM warriors. Everyone's journey with MM is different. How the treatment works and the side effect vary wildly from one to another.
I seem to be a rare case on here and I don't want to worry you unduly but when I was diagnosed I was put on treatment straight away. With the the thought of 6 cycles of chemo, CDT for me, then a SCT. Well here I am nearly 2 years post diagnosis and still on chemo with no chance of SCT. Also when I first started chemo I was never away from the hospital with infections, back problems, X-rays and scans not to mention the dreaded BMB. Just my luck :-/ Lots of others on here have sailed through their treatment and I hope Eric does together same. Tom is a shining example of the way to do it – I think lots of vodka is his favourite medicine.
Infections are a big problem in MM because the MM suppresses the immune system as does the chemo therapy so watch out for temps over 37.5. As Tom says speed of treatment is important and if Eric has ANY problems get in touch with the hospital ASAP don't let him do the man thing saying I'll be ok!
Good luck to you both and I hope you have a long and successful journey.
Everyday is a gift
Use it.
Andy x
Hi Maureen.
We finally got insured with Now I Can Travel. It's important to get cover as we found out from my sister in law after we got home. A friend of ours was at the airport coming home from Tenerife when he took ill. A doctor refused to let him fly home and he's been in hospital ever since with medical bills topping £20000 already. They took a chance of going without insurance due to it being "too" expensive due to pre-existing medical problems.
Everyday is a gift
To be cherished
Andy xx
Hi Phil.
I've just got back from Greece. We found it very hard for various reason to even get a quote for our trip this time. My myeloma and my wife's diabetes causing all sorts of problems oh and me being 3 weeks post spinal op didn't help. We tried all the ones we'd used before to no avail! Eventually got a quote of £860 with no guarantee it'd would be accepted. Eventually we got a weeks insurance for the both of us for £85. It's very important your honest with them or else your not going to be covered in a claim and as David says your just wasting your money.
I tried moneysupermarket and couldn't get a quote due to my MM. £35 does sound very cheap.
Everyday is a gift
Enjoy them
Andy
Hi Eve.
Glad to hear Slim is back home. I only know taking laxatives or diarrhea cause a drop in potassium levels. The tablets they give me to boost my potassium levels are really awful. Hope they get it sorted soon.
Every day is a gift
Don't forget to use it.
Andy xxx
Hi David
Glad to hear you had a good time in France. I know what you mean about insurance! After I was given the ok to travel to Greece this weekend by my consultant Steph rang round the insurance companies for quotes. Several wouldn't even quote for various differing reasons. One being I had just had surgery on my back. One of the few quotes we got was for £850! for a week. In the end we managed to get insurance for both of us for the week for £85 so now the packing can begin.
Hopefully this won't be the end of trips abroad but the insurance issue is a worry. Planning a weekend in Belgium around end of November beginning of December time. 😉 and we're off to the lakes the beginning of October. 😀 as long as health issues don't interfere.
I do hope you get to travel abroad again David and as Dai says there's always Wales and Scotland. 😎
Wish I knew where I put my budgie smugglers may have to leave them behind! :-0
Every days a gift
Use it.
Andy
Hi Dawn.
I'm recovering from surgery on my spine at the moment. I had kyphoplasty on T11 & T12 two weeks ago! I had a pre holiday check up on Friday. My bloods came back a bit low. My neuts were down to 0.6! I'm booked in for my usual end of cycle blood tests next week and their giving me a pre holiday blood transfusion, but got the green light to travel.
So this time next week I should be sitting in the warmth of the Greek sunshine. Just got to avoid people lol hard to do on a plane.
I've not been given gcsf yet guess they're keeping that in the locker for emergencies.
My consultant supports me in doing what I want whilst I can – you've got to make hay whilst the sun shines 😎
Every day is a gift
Use it
Andy xx
Hi Ian
I myself have two small pensions at the moment – no actually 3 pensions! One I started to claim when I turned 50 pre MM which I took the max cash lump sum and a monthly payment of just short of £400. That was when I thought I was healthy :-/ I recently took advice about the other two pensions as I've now turned 55 and can claim them and after due consideration as I don't need the money urgently I'm going to leave them be so that when I die my wife gets the full value of the money in the pensions. If I cash them in I'll get a proportion as a lump sum and a very low monthly payment and when I die the Insurance will keep the residue.
If you can prove your going to die soon you can get a better deal and a bigger lump sum if you haven't been told death is imminent the best you can do is go for an impaired life pension! Anyone can claim their pension once they reach 55 but annuity rates at the moment are absolutely rubbish thanks to the policy of quantative easing.
I would advise you get independent advice but unfortunately at the moment unless your in a final salary scheme pension pay outs aren't good.
Every day is a gift
Andy
Hi Venessa
I'm in the process of being finished by my employer at the moment. Though they're not using redundancy as the excuse. They will get me off the books due to me not being fit to work. So I probably won't even qualify for redunacy – unless they deem me worthy of such a payment. As been said previous it is illegal to make someone redundant due to having cancer as its classed as a disability and come under discrimination law.
I'm at the moment claiming DLA and JSA the DLA is tax free the JSA is taxed. I'm able to claim JSA as my sick pay from work has run out.
I think the quote from bupa seems very reasonable – I'm on Revlimid and that costs approx £400 a tablet! So my Revlimid alone cost approx £8000 per month. Though having said that I'd still keep my money and go with the NHS. I have read once you go along the private route the NHS make it very hard for you to get treatment on the NHS for something you were previously being treated for privately – not sure how true that is.
If you have income protection does that not cover Stewarts loss of wages?
My mortgage protection ran out in June but luckily I don't owe too much there. I'm in the process of having all my finances and options checked over by a financial adviser.
It's a difficult situation you find your selves in but try and concentrate on the things you can do and try not to worry to much on things you have no control over.
Every day is a gift
Cherish them
Andy xx
Morning Lolly
I was offered a trial when first diagnosed but I can't recall which trial it was now. I turned it down because it meant traveling to a hospital further away. I'm being treated at North Tees University hospital Stockton which is only 10 mins from where I live.
I started on CDT( cyclophosphamide, Dex and thalidomide) and had 5 cycles to no avail then I tried PAD ( Velcade ) again no significant response then it was on to DTPace again no significant response. My next treatment was Revlimid and Dex and I was referred to Newcastles Freeman hospital for a second opinion where I saw Prof. Jackson an Auto(self) SCT was ruled out and an Allo(donor) SCT suggested but a good enough match could not be found so that has been ruled out too. Cyclophosphamide was added to my Revlimid and Dex which has managed to bring my PPs down to 20 where they have been for several months now. I started with PPs of 49.
I'm on cycle 19 of RCD at the moment and will stay on it till it stops working.
Every days a gift
Gratefully received
Andy xx
Hi Lolly
Welcome to the forum no one wants to really be apart of. You'll find lots of support and friendly advice here.
I myself have the dreaded MM disease I was diagnosed in Oct 2011 after 18 months of back pain! I'm 55 now. Sadly my treatment hasn't been straight forward and will not get to SCT so can offer no personal insight into the process so I will leave that to others.
I hope you and Steve have a smooth journey with MM and a successful SCT followed by a long remission.
Every day is a gift.
Go out and enjoy it.
Andy xx
Morning Mal.
I'm glad that you find my posts helpful. That's why this forum is here to pass on advice and to and support each other. I'm sure over time you'll do the same for others that come on board.
It's a frightening disease and the first months are hard to get through but it does get easier as you get to know what the right way to go about thing is. It's a very personal disease too so what works for one may not work for others and how we react to the drugs is also different. It's important to listen to your body and not over do things. If your tired, and will get tired, rest up if you feel different or strange mention it to your medics, you can't be to careful. Side effects from the drugs are also important to report and it helps to keep a diary of everything so you can establish a pattern. As Tescos say every little helps. If you have questions for your consultant write them down as they pop into your head and take them with you when you have a consult – that goes for Karen too. Write down the answers too because there is an information over load and we do forget things.
I was a night owl too when first diagnosed and it was my back too. I used to run a lot, up to full marathons, till my back started to give me discomfort. I had back ache for 18 months before I was diagnosed by which time most of my spine had suffered a lot of damage. Bone strengthener Zometa has helped stop the damage getting worse but it was very painful at the start of treatment. I could only sleep sitting up and had lots of painkillers of all descriptions. I've managed to cut down on the pain killers now but I can't walk very far or do much around the house. So reading, tv and music is a big part of my day now. I like your choice of music 😉 I'm in for an op on my back on Saturday hopefully that will give me some help with my back – I've lost 3 inches in height!
Sorry to hear about your heart attack that must of been a shock too.
Well I've managed to ramble on again and again I'm blaming the steroids.
The journey ahead will not be smooth you will have good times and you will have bad times but take each day as it comes and enjoy the good days and fight the bad ones.
Every day is a gift
Use it.
Andy
