This topic contains 50 replies, has 15 voices, and was last updated by 
Whamster 11 years, 2 months ago.
Hi again Janine and Peter, Hope all goes well on Friday, I go to Dr. Cooks clinic at St. james, I just presumed that you were the same ,but as I go Wednesdays we could be under a different consultant.Its very important that you go together (two heads better than one ) and as every one says ask all the questions, don't be afraid and don't be put off. Good luck .Ted
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 Peter
Sorry we have to welcome you on here. Sorry you are having such a post dex downer. It sounds like cold turkey. Take as much rest as you can and well done Janine for thinking of crushed ice.
Wonder if they wil put you straight onto pathway for Stem Cell Transport as you have had kidney problems, Don't worry if they don't. Several of us on here are doing OK without, in fact, I gather there is a Trial to compare remissions between patients who immediately proceed to SCT and those who don't. Important thing is to listen to what is said, ask loads of questiond and then make up your own mind.
Don't forget the MUK phone line if you want to talk to someone not involved with Leeds.
There is a Support Group in Leeds, unfortunately too far for me to go from Bradford so far, but even if you can't go the Leader might be able to put you in touch with someone locally.
One thing, going to Leeds you will no doubt find yourself sitting next to other MM patients. In over three years at Clinics I have only met one so feel very lonely at times! Don't know what I would have done without this Forum.
Best wishes for Friday.
Mavis
Hi Peter
Some people have a reaction when they stop the dex,your body is not use to steroids in such high doses,or the dex could be hiding an infection in your body,as long as your temperature stays normal,if it goes a little high,paracetamol will bring it down,I have a blood pressure machine,I think it's good to have one,if you blood pressure goes very low,and I mean very low,you have something going wrong,make sure you do 2 arms plus standing up blood pressure,.
Slims blood pressure hits the deck some time with a pulse rate that is above average,so do ops every few hours when this is going on luckily it is not a regular thing,Slim has reduced Dex because of an earlier blip .
You should get a number to ring unless they have changed the system,usually,you can ring the unit,if its out of hours,there is an emergency number,but since this introduction of 111 aim out of date.,I had to ring 111 recently and it was awful,after many phone calls and hours later I had a doctor out,ambulance came within the hour,luckily a vascular team was on call at the hospital.
Hope this helps Eve
Hi Peter
I would advise you to get a thermometer and if your temperature goes to 38 and above, go to hospital.
My husband was diagnosed with myeloma (light chains) in October 2012 and we were in shock for ages as he also had spinal compression and lost the power of his legs. We are now coping as Ian is progressing well and hope to have him home from hospital early September. He is not having a SCT and after 3.50 cycles of CDT the light chains are stable but he gets bloods checked every month.
Take care
Maureen
Hi I am sure things will seem better after Friday when you get some info and find out what treatment they offer, I must say that if the same thing that happened to you happened to me I would have gone straight to hospital. I have a contact nurse at Leeds they gave me a card with her name and number which I can ring for help or advice, it might be a good idea if you asked about it on Friday. Ted
Dex withdrawal day I felt like I had electricity running through my body as well as the terrible pain from head to toe. Ask about having a tapering dose…it definitely helps…lengthens the withdrawal time, but lessens the side effects. The lack of sleep over the 4 days is the worst to cope with though.
Carol
Hi Peter
The joys of steroids! My consultant thinks about two thirds of us experience some side effects when taking steroids including increased energy, reduced arthritis pain, not being able to sleep, restless and then when the drugs are withdrawn feeling ill, depressed or aggravating pain with existing arthritis. Although I reacted very badly to the chemo drugs with severe nausea and vomiting, fortunately the steroids did not affect me at all. It's so strange how differently our bodies react to various drugs.
When my son was under five, he suffered with some severe asthma attacks which meant his body was pumped full of steroids and antibiotics for chest infections about five or six times a year. I always remember him at aged 4, in a children's high dependency unit hospital, wheeling along his drip and shaking from top to bottom with the side effects of steroids. The shakes used to last for days. Whilst on steroids, he was as high as a kite running around non stop and with no purpose for hours, unable to sleep, constantly going to the toilet for a wee and constantly eating. When the steroids stopped, he was depressed for a good week afterwards and so angry with everyone and everything.
Remembering all of my son's side effects with steroids and the large amount of doctors giving advice on the drug, I discussed with my consultant about reducing the dose slowly over three or four days. He agreed I could come off the steroids slowly and I didn't really experience any negative symptoms – so it might be worth asking your consultant.
I hope your appointment goes well and you learn a little. Although my first myeloma consultant was more than happy for me to ask questions, he just used to avoid answering them!
Jan W
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
Even though the registrars at Ealing London always seem to be so busy, they do take the time to listen to my reporting of side effects and answer questions, of which I always have many. It is all so confusing and it seems no-one can really give you the answer to prognosis, which is the main thing I want to know. I was shocked to be re-admitted to hospital for 4 days last week after only 6 weeks of CTD (cyclophosphamide, dexamethasone, thalidomide) as I had kidded myself that having always had a strong immune system before myeloma, somehow I was immune from infections, but had a double whammy both lung and kidney.
I agree with purchasing a blood pressure monitor as before being prescribed the tapering dose of steroids I developed braccychardia with my pulse dropping to 45….very scary. The Internet does list this as a less common withdrawal side effect . The myeloma nurse told me I should have gone straight to A and E…easier said than done when you are home alone. I told her that i am sure it would have risen to a normal rate anyway with anxiety, if i had to call an ambulance for the first time in my life. Also she gave me a thermometer at first drug collection day. Visiting the hospital for warfarin (to prevent blood clots from myeloma and thalidomide) monitoring twice a week as well as 51/2 weeks of self adminstered anti coagulant injections in my stomach have both been a trial.
Forgive the long post but steroids make me ramble and today is day 3 as well as chemo sickness day. Listen to me after 7 weeks thinking I know it all, but honestly it is manageable with around 10 of the 21 day drug cycle being better than the other 11…..but from my experience you never really feel normal…..but we have no choice do we? I call my myeloma the cancer gremlins and read somewhere that steroids cause them to suicide, so if that's true then we have to learn to love the steroids!
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 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
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.
That's what we are here for! Support.
Good luck with the treatment, now that it is about to start I hope that you feel better about your situation.
Try not to let things get you down, think positively, a smile works wonders.
Best of luck, keep us posted.
Regards
Tony F
Hi Glad to hear you are a little more informed ,knowledge is every thing in this game. Keep us up to date. Ted
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