[PatGParticipant]

Hi everyone, I have been scouring the side-effect posts to see if anybody has experienced their silver rings (I wear two at all times)tarnishing? It has also happened to my silver bracelet, also worn all the time, but not to my silver necklace. Very strange. I have come to the conclusion that it is the drugs coming out through my skin but obviously selectively. Given that everyone has different side effects it gets quite confusing knowing what is a side effect to what and whether what you are experiencing is 'normal'. I am on VCD for Amyloidosis and have PN in feet mostly and fingertips ( I know that can be 'normal') I am very tired and can drop off very easily, but still manage to sleep OK at night. I am also incredibly shaky. Makes texting interesting at times! Confirmation from anybody to say that these are also 'normal' would be very helpful. I feel quite low a the moment and absolutely HATE being so dependant on others, even to the extent of my partner helping me out of the bath because I am so unsteady. I realise that I have to get through it and there are no short cuts, but sometimes it just feels so hard. I know so many of you on here have had a far worse journey than mine with much more pain and I apologise for moaning when I know that I am just feeling sorry for myself. I promise I will try to do better – just not today.
Love and hugs
Pat
xx

[AliParticipant]

Hi Pat

Sorry to hear you are having a rough time of it, you have every right to have a moan here and there im sure.

Its my Mum with MM. Both her wedding ring and cross that she wears on a chain around her neck have tarnished unfortunately – both gold.

She got very shaky on the dex days, even her voice. We used to call them the "Larry the Lamb" days. Probably lasted for about 3 days each time. She too could drop off at any time during the day, but could not sleep all night – must have been frustrating. You sound alot like my Mum about being dependant on others – she hates it and refuses to be molecoddled (spelling?) unless absolutely necessary, which it was abit after her SCT:-(

All I can say is my Mum always said "whatever it takes", yes she had her down days and probably many more that Im not aware of;-) what im trying to say is that you will do it Pat, im sending you a big hug as you are so brave and I think you deserve it.

Love Ali xx

[tomParticipant]

Hi Pat

Am sorry to read your a bit off it girl but its the norm :-/ its MM for you.

Now I remember getting a grean ring around my neck from my "Gold 😛 ) neckless but that was after I went swimming with it in the sea lol, but I have never heard of silver doing anything with treatment ?

Am sure you know am now treatment free 😎 but when I was on my CTD I never used to get in Bath if I was "Home Alone" as I needed Elaines Help to get me in and out.
Yes its hard to let others near take over your Life when you are not too well and to be fair it made me snap more than once to our Sons and to My lovely young bride:-( But they all took in their stride and they still love me and care for me 😎

And BTW that was in no way a Moan nor a whinge that was just someone copping with MM so chat away Girl but just mind who and what you TXT he he.

Love and Hugs
Tom "Onwards and Upwards" xxx

[PatGParticipant]

Thanks for your reply Ali. It does sound similar to your Mum I must say. Once you know someone else is experiencing the same things as you, you relax a little and realise that this is your 'norm'. It is just finding out what that is for you and can be quite unsettling.:-S I do feel better today thank goodness-just in time for velcade again tomorrow! I am really looking forward to my week off treatment when I can hopefully get to feeling more like myself before we start the third cycle. In the mean time I will continue to clean my jewllery every day with my trusty silver cloth:-)
Tom, thanks for your comments. It is hard not to snap at loved ones isn't it? I always try to remember that in a lot of ways it is much harder for them watching you going through it and not being able to do anything than it is for you dealing with it. I know I have hurt Kev with some of my comments but we have talked about it and have a buzz word to use when it is getting into that sort of territory. We can both back off then and discuss it later. It seems to work for us and that's a good thing.:-D
Right! Time to do a bit now while I have the energy. The towels will not wash themselves will they? Thanks for all your encouragement – just what I needed.
Love and hugs to all
Pat xxx

[mhnevillParticipant]

Hi Pat

Sorry you are having trouble with your silver rings. I wear a lot of silver, but not rings, and I haven't had any trouble!

This is a funny disease. We all react so differently and these seemingly "little" things can tip the balance in making us feel depressed.

Do take care.

Mavis x

[PatGParticipant]

Thanks Mavis. As you say it is the little things that tip you over and make it feel like a real uphill battle. Silly really, but that's human nature isn't it? I read your good news in another post and I am so pleased for you. Long may it continue.
Love and hugs
Pat
xxx

[PeterJamesParticipant]

Hi Pat
Tomorrow is my last day of six CTD cycles, on to SCT in Jan
Side effects .As time has gone on over the last 18 weeks, the steroids have made my arms & legs very weak
My feet feel cold , so I wear stocks all the time
My eyesight has got very poor, hearing , I wear two hearing aids , is down & my hands have got very shaky
Sleeping is not a problem, any place anytime, I find that my energy level can drop in an instant
Nurse says all this is all quite normal, I get differing views as to how long it takes the drugs to leave your body after completion of the chemo, today's view was six weeks, I was hoping for six days !
It would be interesting to hear other views
you are not alone in this exclusive club, we all suffer for the cause !
Follow Toms advice, onwards etc
All the best
Peter

[tomParticipant]

Hey Peter dont expect it to change after your SCT in Jan I can still fall asleep at at at ?? well before the hat even starts to drop he he, and if you ask my young bride my ears have never been anygood at listening lol. and I aint on any drugs 😀

So still get tired
Still feel the cold (lot more than i used to)

But am still here and if i need that sleep they can wake me up at work Lol

Tom "Onwards and Half asleep Upwards" x

[PatGParticipant]

Hi Peter, It was so encouraging to hear about your side effects and realise that these are 'normal'. It makes it easier to deal with when you know that. I wish you well with SCT in January. I know from reading on here that it is not an easy journey, but oh so worth while. Tom's 'Onwards and Upwards' keeps me going so many times – maybe I should get a tattoo? That would put the cat among the pigeons wouldn't it?
Love and hugs to all
Pat
xx

[BADGERParticipant]

Hi Pat
sorry you are not too good lets hoe things soon get better I am just starting vcd had one lot i am having it once a week sub Q and a reduced dose of DEX and CYCLO because of my kidneys i expect we will be sharing experiences try and keep well love Jo xx

[PatGParticipant]

Hi Jo, Had no 3 of 4 today and since the dose of both velcade and dex has been reduced I am coping much better. Hope you do too and if I can help with anything I will be only too glad. Got my purple jeans on today – they do help to lift your spirits!
Keep well
Love and hugs
Pat xx

[tomParticipant]

Hi Pat

Well am pleased the "Onwards and Upwards" keeps yopu going but dont get the tattoo as it hurts honest he he.
And Mind those Pigeons, better of in a pie than gave to cat 🙂

Love Tom "Onwards and Upwards" xxx

[BADGERParticipant]

Hi Pat

had my second dose today app at 1 0'clock got out of the hospital at 4.30!!
my dex is 20mgs two days running and 200mgs of cyclo on the first day having my treatment sub Q only takes a minute to get the injection I wore my very bright pink jumper today very loud but fun:-P having a colour tomorrow hope my hair wont fall out:-(
Love Jo

[PatGParticipant]

Hi Jo, I can't remember how much cylco(Just thrown the box away) but I have to take 8 tablets on days 1/8/15, that's following three out of the four subcut injections that make up each cycle. Dex has been reduced to 10 mg for two days after each velcade. Consultant said that if I was managing OK on this dose she was going to increase the dex for the next cycle. I must say I have been fine on this regime and to be honest the dex has a beneficial effect that I look forward to. Don't look forward to the down day which seems to hit on the Friday after Tues/Weds medication, but that is a small price to pay. Was your wait to come home due to transport or waiting for medication to arrive? I have a friend who is able to take me but have to have transport to come home and I normally have to wait about an hour before the ambulance taxi comes to pick me up. I telephone the ward in the morning just to check the bloods are Ok and they tell me what time to come in (usually about 2 o'clock) and the latest I have been back in home is 4 o'clock so I don't think that is too bad. I am pleased to hear you are keeping up appearances Jo. We have to stamp our personalities on this somehow. As for the hair, well I have coloured mine since starting treatment and I still have it. And let's face it, if it does come out, you can get some very funky wigs these days. When I had chemo for breast cancer in 2003 I lost my hair and my other half was playing in a heavy metal band at the time. I remember I bought a VERY funky Tina Turner multicoloured wig for a gig at a bike rally which went down a storm. I did have more refined ones for shopping at Morrisons though! Watch your skin Jo. Mine has gone really dry and in places looks like it's peeling like you get with sunburn especially at the subcut sites. Using an awful lot of moisturiser at the moment. Well time for a drink before bed. Keep in touch love and keep well.
Love and hugs
Patxx

[BADGERParticipant]

Hi Pat
I have a reduced regime because of the kidney failure i cannot have full strength drugs it worked ok for me last time so hears hoping it will now
my lovely husband takes me every where and waits for me took me this afternoon to my friend sons saloon she arranged for me to have a free manicure which was lovely had the hair done felt much better;-) must keep up appearences going to the MM conference in london tomorrow do you live in the south east I live in Hatfield Hertfordshire but we are being transported tomorrow with my local MM support group they have organised transport keep well:-)
Love Jo x

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