Hi Steph,
My name is Peter and I am quite new to the site as well, I was diagnosed with MM on July 26th and am now on CVD treatment at Leeds.
You are right the Dex can be a horrible drug but its part of the treatment, I have been told by my consultant that I can stagger the dose ( 10 first day then 2 days of 5 ) and this has helped a lot with the coming down, my dextitude as you put it still stinks though and my wife Janine puts up with far more than she should, stupid thing is I know I am being horrible but can't stop myself, I then get upset with myself for being such a grump, so your dad will most likely feel this way too.
As I say I am a newby on here as well but anything I can help with just ask away, the support and advice I have gotten from the people on here has been unbelievable, they are the best.
ONWARDS & UPWARDS is my motto from the start and being positive makes all the difference.
Cheers,
Peter.(whamster )
Hi all, sorry for not posting for a while! Time seem to go nowhere. I have just finished my third cycle of CVD and I am looking forward to my week off, my consultant has allowed me to alter how I take the Dex (10 first day then 5 for the next two days) and it is a lot easier to cope with the side effects.( apart from sleeping of course )
Janine has gone back to work now and I am fine attending for chemo on my own as it is very quick and quite painless, I have an injection in my stomach and off I go.
Janine comes with me on all my consultant visits just to make sure we both understand what is going to be happening over the coming months, I really do not know how I would cope with this disease without all of her Love and support, she is my angel:-) and the strongest person I know.
My eating is a bit of a problem, I can't eat any solid food, bread and pastries and things like that without feeling sick, but I am seeing a dietician on Monday, I am eating loads of fruit&veg though, even making my own soups and my daughter Sarah is making me soup as well.
My kidney function has risen twice from 12% to 24% so that is more good news.
I also found out about the Myeloma support group in Leeds at the Macmillan centre run by Rita Rumsey and we are both going to the first meeting on the last Friday in September,I have met the group briefly and I am looking forward to seeing them again.
So a positive post I think, after reading some back posts, very positive.
I am just going to say how much all the replies from everybody have helped me cope without feeling alone in a situation I have no control over, I thank you all for your advice and support it is without doubt the one thing that has helped me find my way in this minefield and if I can find a way to help someone new I hope I can be as good as you guys are.
ONWARD & UPWARDS:-)
Peter.
Hi Ted,
Sorry it has taken so long to reply, it seems there are not enough hours in the day. I am happy that you have not had to have any treatment ( I think it is what is called Smouldering Myeloma and they just monitor your system)
I am at stage 3 so I am getting intense treatment to try and bring it under control which entails 3 lots of chemo a week, 2 weeks treatment then a week off, the week off is great! I even managed to go to see my Mam & Dad last week in Co. Durham which was good for all of us I think.
I am a lot more in the picture now and I feel a lot more in control of my medication side effects which have not been too bad since the first cycle.
I am now on cycle 2 of 6.
So all in all I am feeling more confident about the possible outcomes, one of which is to be where you are and just being monitored.
well I have just been warned I should be in bed, nurse Janine my wife is not to be trifled with!
So I bid you goodnight and hope to speak again, and sorry about delay.
Night
Peter.
Hi Ted, well that's the first treatment up and running, Velcade injection in stomach, 10 Cyclophosphamide, 20ml Dexamethasone. All in and doing their thing. The nurse at St. James's was brilliant when she found out it was my first treatment, she put me so much at ease, I must admit for a bloke of 56 I was scared. So I have everything I need at home now anti-sickness tablets, anti- viral tablets, bladder and stomach protection tablets. I just hope I can feel as well as I do now for the longest time possible, I've just cooked myself Sausage Egg& Chips, and Janine let me because I felt able.
So all in all today has been so much better than I imagined all last night, laid awake worrying.
Hope things are ok with you, speak later.
Cheers,
Peter.
Well that's the pre- assessment done, most of our questions answered, a few fears a little less frightening, next dose of Dex is only going to be half as much so fingers crossed it will be easier to handle.
Start my treatment straight away on Monday as I am at level 3 so it is all down to the way the chemo works for me and hopefully my kidneys improve as well.
So things seem a lot clearer and I feel somewhat less anxious and I would like to thank everybody for the support I have found on here, it sure feels like longer than a week. I now hope as I find out more about the illness I can help other people who find themselves in what seems like a minefield.
Thanks again all.
Hi guys.
Found out today that tomorrow is just a nurse pre-assessment. Peter has had a good day today. Had a lot of visitors which is obviously going to take it out of anybody! And he is very tired. We have got questions wrote down plus have got a list of BP etc to take with us.
We have received follow up appointment with the renal team which is next Thursday.
Hopefully some good news tomorrow!
Night all xox
Carol, please don't apologise for trying to explain all the things you are going through, I think that is why this forum helps so much, we are all totally in the dark about the disease that has an hold on us and everybody's journey is different, I don't know how I would cope alone you must have great inner strength.
This forum has helped me so much over the past few days, I was so depressed yesterday and yet as soon as I started to feel a little better all the fight comes back, my head is a shed when it comes to the treatment starting and both Janine and myself are scared witless but its the only way to move forward, I feel like I want to rant and rave but tragedy can hit people in all stages of life and this one is going to be the biggest challenges of our lives.
Thanks to everyone who has taken the time to pass on all the hints,tips, advice and most of all support, and as my journey starts I will be a little bit more at ease knowing I can talk to people who understand and it is a great comfort.
Thanks again,
Peter.
Hi All, It's Neeny.
Have just managed to get Peter upstairs to bed. It was so frightening last night, I can't even explain. It's definitely the Dex withdrawal! I am so frightened about seeing The Team (as I call them) on Friday. We have had such a bad time with the Dex withdrawal! I have so many questions to ask and know I need to write them down but putting them down in black and white makes everything seem so final. Am I being selfish or stupid in hoping that they have got it wrong??
Thank you for this forum and for all the support you guys are giving us.
Neeny xox
Sorry all for this slow reply I have just had a terrible 14 hours of god knows what, unable to stand up without feeling like I was going to pass out, unable to drink so I was worried about my intake, Janine crushed me loads of ice cubes to put in my mouth.
My whole body felt as if it was shaking from head to toe, and I kept falling asleep, not been to bed as I couldn't get upstairs. I was so close to ringing the hospital!
I feel as if we have both been left to cope without enough information, I was told at 11.00 on Friday that I had Myeloma and then asked to take 20 Dex tablets before just being discharged from the renal unit about 2 hours later armed with just three booklets of information.
As my first appointment for assessment is not till this Friday there is a huge gap to try and cope with so little information.
It is now 08.20am and thank goodness I am feeling a bit better, so I am just going to take it easy, Janine is shattered and worried sick.
Thanks again for all your replies it helps so much knowing we are not alone.
Peter.
Hi Tony, just finished taking dex for 4 days and I can say I am feeling terrible, at least I was warned I could feel like this. Ive just rang the renal unit to see if I could stop taking the sodium bicarbonate tablets I was on because I am sure they are making me feel worse. They said I could stop them so fingers crossed I may feel a little better soon. Thanks for advice on the drinks.
Cheers,
Peter.
I have maybe a very silly question, I am keeping my fluids up because I have kidney problems, but does anyone know if normal pop is ok to drink, not sure if it has anything in that they would struggle with. Water is so bland even when mixed with concentrate sometimes.
Cheers, Peter.
Thanks Andy, actually felt a bit out of sorts last night but I had about 6 hours sleep and feel so much better today, even a little bit more energy I think. I am having to keep an eye on my water intake the same as the rest of us as my kidneys were only working at 10% when I was admitted to hospital.
I will apologise to my darling wife Janine at once and then if we start arguing I can just put my sad face on and she will forgive me!! ( luckiest man in the world me)
Thanks,
Peter.
Hi Ted,Thanks for your insight, as I am really not sure of what to expect from my first appointment on Friday, in fact I'm not sure of what to expect full stop.
I have just finished 4 days of 20 tablets of Dex on a morning and I'm not feeling great, it may be the lack of sleep so I am hoping I will do better tonight.
It just seems all up in the air not knowing what to expect so I am just going to try and go with the flow and keep being positive and I am a very positive person normally. The support I am getting from Janine is terrific and the poor girl is as much in the dark as I am, together though we make quite a team and I am so glad to have her love and support.
Cheers,
Peter.
Hi all, I am Janine (Neeny), Peter's wife (partner, best friend).
This is one of the hardest things ever! It's good to have a forum like this where everyone is going through the same thing. It's been nearly 4 days since we got the definitive results and I think I am still in shock. We do have a lot of support from family and friends though and meeting all the friends on here is helping so much.
Thank you everyone
Neeny
Yes I was told to take the Dex first thing in morning, still had a bit of sleep disruption, stayed in bed all night last night, but kept waking up to check the drips in both arms every hour on the hour, the only problem is I haven't got any drips in my arms cause I am at home in my own bed!!! What's that all about?
Taken my last 20 Dex this morning so whatever it's gonna do I hope it's doing it well..
Cheers,
Peter.
