Welcome Back Shirls,
I was getting a little worried when we had not heard of you for a while, but Im so pleased to hear that things are progressing for you. Its kind of nice that you are begining to come around just as spring is about to come around the corner.
Briliant idea to get a puppy for summer time as running in and out the house for the house training is so much easier when you can leave the door open( by that I mean dont need to keep jumping up to open the door)
I sincerley hope your progress goes according to plan, your very very brave for undertaking the alo but Im sure your in good hands too.
luvMin
Just a quick one only me. Did you mum not get a little chemo booklet? It should set out what tablets to take when and have the little boxes to allow your mum to write down how she feels when she takes them. Like side effects or not. Just helps when she returns for next consultation as its so easy to forget things. Should also contain the phone numbers of help should she need it.
Min
Dear Gaye
If you cant moan to friends who can you moan to? and thats what friends are for.
Platitudes are not going to take away your intolerable pain;
Im still suffering from my sciatica and it can't possibly be anything like you must be going through. I know mine will go away with rest and time; you on the other hand need some better pain killing drugs until your RT is done and working. Please see someone to help you with some stronger drugs to get you over this period. Make you more comfortable and able to keep us bouyed when the going gets tough.
When Peter had his RT it was one massive blast. No going back and forward for short bursts. After aboout 4-5 weeks he was able to reduce the pain killers and get about a bit further.
I know you help out at the hospice, is it possible to get a bit of therapy of the calming chill out variety for yourself for a change? Think about it.
Love Min
Hi Clara,
I think its possible your dad could be offered Revlamid if he is involved in a trial, the usual 1st line treatment is CDT, followed by velcade. I believe the amloid is where all of the bad bits of myeloma collect in one place usualy an organ, and the same medication is used for both. Taz who occasionly posts on here is married to a sufferer.
With regards to your Dads chest infection, normal everyday anti biotics that you or I would get dont usualy have the same effect on a myeloma sufferer. Peter has always had really hefty doses of antibiotics to overcome those nasty blighters. As not many Dr,s encounter mm iether keep an eye on wether he is responding well to the anti biotics. If not speak to the nurse specialist and tell her what he has been given.
Peter has mild (30%) osteoporosis and the Biphosphonates will help usualy given by drip which can be only 20 minutes of waiting around. This usualy helps a little with the bone pain and has been found to be usefull in treating mm in newly diagnosed mm patients ( Trawl this site for further info on the subject)
I hope he can get started soon on his treatment. Good luck for him
Min
Hi Keith
As a short term fix, I have found that posting a short message then going back in to edit gives you all the time in the world to add your thoughts if interupted by a cup of tea.
Regards Min
Hi
I had my redundancy meeting with HR today, I was his first ever interview and he read from an idiot sheet throughout. Really filled me with confidence. He told me I will go on 31st of March. I begged him to make it earlier, telling him he could save the tax payer a months wages if he let me go in two weeks instead but it fell on stony ground.
I asked for a meeting with a financial adviser which is not something that was on offfer?
Next I have to wait for a formal offer even though he gave it to me at the meeting, and have to take some time to digest, (should take me all of 60 seconds to find the pen) Then I am free to go on a spending spree. No folks this is a local government offer so wont be booking a cruise.
But I may buy a new sewing machine so I can make some new curtains. Or a course to learn how to use the apple mac I bought last year.
Hope the Puppy has learnt where the pee pads are located now Gill, perservere he will get there. Or have Stephen shout a dex remark at him when you catch him. My baby dog learnt how to use the cat flap as a puppy and never had to train her. We did have to change it for a very big dog one eventualy though!
LuvMin
Dear Bridget,
Sorry your feeling like sh***. Hope its not the dex, Peter only takes it at the start of the new course of Revlamid. Are you taking it again? or is it just a build up off last week?
Whatever, your allowed to sound off if its making you feel so awful. I know that first week was bad for Peter and only now is he begining to feel like he is getting to grips with the side effects. I suspect its the Revlamid doing its stuff, as he has had much bigger doses of Dex much more frequently than with Revlamid.
If it gets too bad you can get a smaller dose( maybe that was why the Dr gave him a smaller dose of dex at the outset knowing it had some bad settling in side effects.) Next packet he gets he will be getting a bigger dose of dex.
Why not ring your nurse and tell her how your feeling, I have no doubt she will ask how you know what the inside of a donkey tastes like!
Have a bar of nasty chocolate it is such a pick you up. Hope your feeling better soon
luv Min
Hi Gill
Never heard of a buffalo hump, they refer to peters 'Hump' as kyphosis of the spine is this similar? It is not as bad now as it was at the outset but its down to kyphoplasty and exercise.
Im curious does Stephen have a belt of additional skin at the waist, peter does due to collapsed vertebra suppose all that extra skin has to go somewhere.
LuvMIn
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
Hi Col,
More questions again Im afraid, have to learn all I can while I can. Never heard of Intratec before now. But it sounds like it must work.
Have you had this from the outset? Does it stop you getting all those nasty bugs? like flu and chest infections? Is the dex 10x2mg?
Anyone who has managed to keep going on one medication for so long and no sct sounds to me like a trailblazer and I want my husband to follow in your footsteps.
SCT sucks or did in his case, and I never did like the idea of making a reasonably well man ill for a long time to make him well for short time! if you follow me. ie Aug to April on cdt May for sct June to Oct off meeds and back on a variety since then.
Oh Dear keith,
You Have got the dexitude today, don't worry we understand. You are forgiven particularly as you have managed to make me understand what happens to some of my posts; never thought of timed out. Just thought someone was getting personal with me for taking so long!
Maybe the answer is to copy from time to time if your having a long think! or a cup of tea hee hee.
I know you will be back to your old self when the dex has stopped. But keep on trying or do as David does and write it on word or something then cut and paste. I imagine your just tired, sitting at your computer when you should be getting your beauty sleep!
Min
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
Wow Colpot,
That sounds amazing and its so good to hear of a good experience.
I wonder did you ever have an SCT. Or will you ever have an SCT?
Is your maintenance dose the same as when you began taking it? Where are you being treated? Sorry for all the questions but it is so nice to hear of someone who has stepped outside the usual courses of treatment. Long may your good health continue
Regards
Min
Dear Gaye & Bridget.
You could both do with a break(pun) and get some relief from the pain, Is you RT having any effect yet Bridget? and as for you Gaye well time to start thinking of getting in touch with Pals. There is no need for anyone to suffer silently. Wouldn't it be nice to have a Holby on your doorstep and one of those characters to look after you. I certainly love Sasha, but Petrenko is becoming my favourite now that Dear dopy Burn has gone.
Here,s one to get you going….
Which television character Doctor/nurse would you like to be treating you? Nick Jordon and Dr Kildare please for me.
Hi Steph,
Sorry to hear your Nan is not in good health and may have mm too.
I think if you nan has other health problems then the mm may be the least of her problems, as her general health has to be reasonable to be able to withstand some of the more toxic drugs that are used to treat mm.
However never say never. Once she has had her appointment with consultant you may know more.
Paliative care often is more to do with pain relief then making the sufferer more comfortable and able to fight the next round. Lots of people with mm get blood transfusions regularly or blood products and are able be more comfortable and respond well.
Its difficult to be helpfull with little information to go on. Once you are clear about a diagnosis a myeloma nurse specialist will be appointed to look after your Nan and will guide you through what will happen next.
I Sincerely hope that she does not have it but hope you will come back and let us know how we can help. the free phone helpline is possibly your first port of call to put your mind at rest, answered by very able staff who are very well informed and can guide you through the process.
Regards
Min
