[PatGParticipant]

Good morning all, I feel a bit of a fool as I let my optimism regarding the effects of VCD after only one treatment make me believe that it was going to be plain sailing – what a silly girl! After treatment 4 of the first cycle (for AL Amyloidosis)yesterday I feel pants. Serves me right eh, should just wait and see. I have adopted this little scenario that the nasties in my bone marrow are my 'little buggers' and I visulise them cringing and shrinking as all this poison courses through my body and while it dosen't make me feel great, it's doing a lot worse to them. Don't know if it helps, but it helps me. I have nothing but admiration for you all going through treatments which are much more wearing than mine and thank God that this forum is here.
Bless you all
Pat

[tomParticipant]

And a Good Morning to you also Pat 😀

Do you know thats the way I think of it when I was having treatment, treatment all finished now but I tell everyone that I have built a little shed on my left shoulder and shoved the pesky MM in that and shoved a lid on it 😀 and yes I talk to it:-S and yes I tap the top of the Lid :-/ but hey ho it works for me and My Lot and for that I am HAPPY 😎 Have a great week end

Love Tom "Onwards and Upwards" xx

[eveParticipant]

Hi Pat
Nice to see your face,took me a while just to learn how to get a picture up,I agree with you,I am growing old disgracefully,we are lucky to have a good bunch of people on here,when my husband was going through a bad time,I could not have managed with out all the help and advice I received. Time has gone on from when I joined and faces have changed ,but the site is still helping many.

I think with Velcade it is having to go every week to hospital for blood and Velcade,the hours you put in there is the worst,the sooner all hospitals start using subcut the better.Slim had 2 injections a week strength 2.3 never changed but bloods had to be taken before for quantity that was given,except for being awake at all hours he never had many side effects.I think it was the combination not so much the Velcade that caused the side effects.

Hope you do not have to have too many cycles .Eve

[BADGERParticipant]

Good Afternoon Pat

Sorry you feel pants bet its the DEX it turned me into a monster I am generally cheerful but not while on DEX dexitude is the word for it hope you will feel better soon I bought a fetching new top today in mixed autumn colours was temped by these skinny leggings but my husband says i look like a barrel on legs:-P so went for a pair of cords to match:-)
Keep well
love Jo x

[PatGParticipant]

Oh Tom, you never fail to encourage – you deserve a medal.

Hi Eve, I have followed your posts on here and know that Slim and you have not had an easy ride. It does help to share though and although not everybody gets everything, someone surely has and can reassure you.
I am finally feeling better 24 hours after in which I have slept a lot, shaked a lot and sweated ( do ladies sweat – perhaps it was glowed?) a lot. That probably means I wont sleep tonight eh? But at least I am now feeling better and that's the most important thing. I do think you have something in what you say about the hospital visits though Eve. I am fortunate in that I get my bloods done at the local walk-in centre the day before and don't have to go to hospital except for subcut velcade twice a week. But this week I was still going for other tests at hospital as well and to be honest I think the whole thing is too tiring when you are trying to get to grips with everything else going on. Next week (my week off from velcade) I have a consultant visit on Tues at LRI, two day visit to the Royal Free Hospital in London Weds and Thurs and a cardiac MRI at Glenfield on Fri. Not much of a week off really is it? Then on to round 2 of 8 with the velcade again the following week. That should be the end of most of the initial tests I think and it should get better from there on in. Lets hope so.

Hi Jo, I think we must have a fashion connection here – very spooky. I have also bought a couple of things in autumn colours recently and also considered the leggings – but in my case, my other half says the matchstick look for legs is not very fetching. So I am sticking to normal but maybe skinnier jeans instead.

Keep well everyone. Love to you all.
Pat
xx

[VickiParticipant]

Pat and Jo,

Your posts about the leggings made me laugh! They don't suit everyone do they…..the jury is out for me at the moment, but I do know I'd get the same honest answer Colin :-).

Sorry you've been feeling rough pat but glad to hear its getting a bit better. Re your post about the treatment getting those mm cells, I used to say to Colin that the poisons are the 'goodies' and the mm cells the 'baddies', they do battle and the good guys win :-)', not a great help when he was feeling really rubbish but it did help a bit and it made him laugh!

Onwards and upwards as Tom would say x

Vicki and Colin

[PatGParticipant]

Hi Vicki, any small bit of laughter helps enormously I find but have found it hard to come by this last week. Been in hospital with a chest infection that I never thought could make you feel so ill! I knew I wasn't right on Sunday afternoon but took paracetamol and thought that would do it. Admitted on Monday with a soaring temp and such a low blood pressure they couldn't get anything out of me to test. Arm looks like an abstract painting at the moment with all the attempts. Anyway came home yesterday but had to make a trip to the walk-in centre after contacting the emergency doctor at 2 o'clock this morning. I have a T12 fracture which was not helped at all by the week spent lying/sitting about feeling so ill and the pain was awful. Paracetamol was just not touching it. Wonderful nurse practitioner gave me some co-codamol and a prescription for more. Took the pain away fairly swiftly but couldn't sleep after that. Bit fed up today, glad to be home of course, but fed up. Will find the smile again soon.
xx

[eveParticipant]

Hi Pat

Take this trip to hospital as a big learning curve,it is such a worry to a carer when temp goes up and BP goes down,steroids mask infections,so are very hard to spot,I now go on Slims BP,when he had pneumonia his BP went right down had him in A&E,and even they failed to spot it,although I pointed out his BP which was 60 over 45,Pat next time it might not be just a chest infection,first sign of temp and BP,Get to A&E.

Also you should not have any pain,if this carries on ask to see the pain management doctor,Slim takes Oxycontin as he has a lot of bone pain,pain is what will drag you down and also make you feel depressed,if taking a pill gives you a better quality of life in the grand scheme of things why suffer with pain as well.I take the attitude different doctors for different courses,you need a slow release pain killer not co-codamol,that will end up making you fuzzy and feeling dopey with the pain coming back after a few hours and needing more,a slow release tablet will last 12 hrs.

Hope you are feeling better soon. Love Eve

[PatGParticipant]

Thanks for that advice Eve. It really helps. I find it so confusing, as even though I had the fracture prior to being diagnosed with Amyloids, I had never had the pain like this last week. I am a bit confused with the next set of Velcade as well. Am taking oral antibiotics now for 10 days but they seem to think I will be starting the next cycle in 9 days time??? I see the consultant on Tuesday so will no doubt clear that up then. I will also try and have a chat with the specialist nurse on Tuesday. Do you know if you can defer or at least request deferred treatment by one week. I am hobbling around, weak as a kitten and can't see that sort of recovery in 9 days or am I just being a wimp?
Love xx
Pat

[BADGERParticipant]

Hello Pat
sorry you have not been well bit of a b+++gger glad you are feeling a bit better now co codamol are good but they may make you constipated so back on the syrup of figs!!!! if its not one end its the other I have know people to defer treatment to go on holiday so i bet its possible I dont think you are a wimp all these treatment are terrible in them selves with out getting infections
Love Jo x

[BADGERParticipant]

hi Vicki
glad you laughed at the legging or as my husband says "that is just not a good look" went to see Henrey Blofelt the cricket commentator the other night he had us rolling with laughter it certainly does you good
Love Jo x

[PatGParticipant]

Hi Jo,
Saw the consultant today even though I was feeling pretty s**t and the specialist nurse whisked me off and did my obs just in case. They were Ok, I think I am still coming back from the infection and suffering terribly with swollen feet at the moment which while not painful in themselves, do give all sorts of weird pains up the legs. I think it is because I am changing my posture to accomodate the fact that I am walking differently. Also have some PN and have to be careful that my foot is actually in contact with the floor at times. She has given me a low dose of water tablets to help, so fingers crossed. She has also changed my velcade to once a week which I am very pleased about as I think I will tolerate it much better that way and lowered my steroid dose. Makes the journey a bit longer, but if I am stronger that way I feel it will work better. No sartorial additions this time – it took me all my time to get my slap on before going to hospital today. Had to do that – can't risk scaring the kids and horses can I?
Keep well
Love Pat
xx

[PatGParticipant]

Hi Eve,I think we may have finally got to the bottom of the pain. The consultant reckoned it was nerve pain from the PN and also the swelling in my feet/legs. Mind, I think the e-mail I sent her at 4 o'clock in the morning may have brought it home and spurred some action. She is good though in that she asked for the GP number (which the surgery gave me, no problem)and as a result my GP prescribed Tramadol which, thank God seems to have worked and I have been pain free tonight.
I do feel though, that this illness is making me so assertive. Don't get me wrong, I was never backward in coming forward, but just knowing you are fighting for YOUR life and the effect this disease is having on it makes you react somewhat differently. I suppose at the end of the day, if you don't fight for it, no one else will, but sometimes I wonder if I am going to end up a positive virago before this journey is over. Best keep that in check or Kev may have a few words for me don't you think? It might be 3 o'clock in the morning and I can't sleep, but at least I am not in pain and that is sooo positive.
Love Pat

[eveParticipant]

Hi Pat

Glad you managed to sought you pain out,pain can drag you down,and it is the last thing you need.Tramadol is effective but again not a slow release,your own doctor will not like you having a controlled drug,plus they are addictive so watch out for side effects.

Going once a week will take away some of the strain,when Slim was very ill and off treatment the consultant wanted him back on as soon as possible,I did have my doubts,but he did cope with it.

Slim had swelling and pain in feet,I use to give his feet a massage with coco butter cream,some one recommended it,and it did work,helped with swelling and his circulation.Worth a try.
Jo I bought tights and I do look like a round ball on sticks,but I don,t care they are comfortable and I am behaving disgracefully .Love Eve

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