Hi Ann. It could be medication as everyone seems to have different side affects but every time we go to see consultant I always bring it up as its always better to be safe than sorry. I'm sure consultant is sick of hearing the same thing but I just want to be reassured.

Frank is scheduled for SCT December/January bur there is only one hospital…[Read more]

Hi Ann

Sorry Pete having problem. Frank is on cycle 5 of CDT. He has had sligntly (!!!) numb fingers the whole way through treatment. Consultant doesn't seem to be concerned. He had to go two weeks for heart tests and last week for lung tests. This we are toldi s to ensure heart and lungs ok for SCT.

Maybe someone else will have more…[Read more]

Hello Pat

I see a kidney consultant every two months the only treatment I can have is a small dose of steriod ad a large dose of sodium bicarb kidneys are at about 20% but fingers crossed hanging on
Love Jo x

Hi Vicki and Colin

Hope you have a fantastic weekend and that next weekend you are both very busy

My love and prayers are with you both
Love Jean xx

Hi Nicola

Frank takes Dex on the Friday and finishes on Monday. He feels terrible when taking it but its when he stops that he feels so bad. Everyone is different – Keith feels unwell for 2-3 days, Franks stopped on Monday and its just today that he says he feels human again. While withdrawing from Dex he feels wobbly, and has to be careful…[Read more]

Hey Vicki and Colin

Am sure you will find the resolve to get that Moral breakthrough we all need at the time of treatment Clin is going through, I found it and am sure Colin will, As for the head/chins up if thats a wee bit hard at this time I would go with a head down and a good "Shoulder Charge" it works just as good I aslo had to use that…[Read more]

Hi jean,

We have an appt with the consultant soon to discuss his response as he's nearly at the end of his 6th cycle. Was your husband really weak and lost all his muscle tone in his legs? Dad is finding it more difficult as time goes on to get around as he's so weak and tired? He's worried that it won't improve once he's off the drugs, I'm…[Read more]

Dads pp were only 0.1 when he started his treatment and now 0 but its the light chains whichever were high, 7000 and now down to 52. He has an appointment with the haemotologist on 9th oct so will know abit more then. That all sounds good to me but apparently it's the ratios that count so I need to find out a bit more about those. Dad doesn't…[Read more]

Hi Nicola

Sorry your dad is having such a hard time with the Dex. My hubby is on 5th cycle and was having such a bad time that the consultant halved the dose. It seemed to help a bit. I know it's hard, but I think it's Dai that says "whatever it takes". Hope your dad starts to feel better soon

Take care
Love Jean xx

Hi Keith,

My dad is on his 6th cycle of ctd and has struggled with dex since taking it. The last couple of months he has found unbearable and has lost all muscle tone and struggles to walk a few feet even with a frame. He only just starts to pick up a bit then has to start taking them again and it's making him so miserable. He is also having…[Read more]

I'm going to make sure I ask about the ratios at his next appointment so I can understand exactly how things are going. Thanks Peter, ive printed off the info from that website and goimg to have a good read this evening.

Nicola x

am on that same stage as you Ali letting the two of them knmow i also am thinking about them 🙂

Love that Onwards Man Lol xxxxx

Hi Pia

And a warm welcome to the site, sorry to hear about your Mum am sorry I cant help with the treatment as all I have had was CTD then SCT.

Just wanted to wish your Mum well in her road to remission.

Love
Tom "Onwards and Upwards" xx

He's at Medway hospital in Kent. They are all fantastic and couldn't ask for more tbh. The trials nurse is always available to talk to us and the whole team seem to take really good care of dad. It all seems to be going well but as much as I keep googling everything, it's a really difficult disease to get your head round. Dad doesn't have high…[Read more]

your more than Welcome its a hard time for anyone thats told they have MM and worst for those that are on the the sidelines watching Us MM'ers going through what needs to be done to get into Remission 😎 its a dooable but its uphill am afraid, but you now know where we all are 😎
Ask away and if you feel like a rant well tis is the place 8-)…[Read more]

Thanks Tom, i'll pass on your comments and cant wait for those words "remission" !!!! xx

Hi Nicola and Dad

I am fortunate enough to have No bone damage but I was having Zometa infusions every four weeks 😀
As for the exhaustion I suffer that and am not on treatment so I put it down to having MM and change my life style.

Give your Dad a big Hug from me and tell him to rest and not fight the tiredness sleap when his body tells…[Read more]

Thanks Phil. I think hes been reasonably lucky with the side effects….the odd bout of tummy upsets and sore fingers and toes are the main ones but the tiredness seems to be the most debilitating. Glad your doing well and look forward to the day we can say the same about dad

Nicola

Hi Alan
And a warm welcome to you, as for the "Twitter" I am on it and as for Face Book am also like a few more on her On it 🙂 so go on Alan you have got this far Ha ha.

I am on No treatment now 🙂 but I got a Rash after My SCT that was soon sorted, but I suffer bad skin prior to MM and used E45 and had to rush up stairs and wash it off as…[Read more]

Dad has made such great progress since his diagnosis. He has lytic lesions in his spine and hip which caused him severe pain which has greatly improved after radiotherapy and the chemo treatment began and hes now receiving zometa infusions once a month to help re-build the damaged bone. We have an appointment with the haemotologist soon to discuss…[Read more]