[Pickle2024Participant]

My dad was diagnosed early this year and is currently on the Myeloma X1 trial CTDa. He's now on his 6th cycle and finding everything a real effort, even getting out of the chair is too much!! He's emotional, tired, depressed on top of the severe fatigue even though all his blood and urine results are coming back good. He has Bence Jones Myeloma and his original paraprotein level was 0.1 but now 0 and light chain levels were 7000 now 52. That all sounds good to me? Has anyone else been experiencing severe fatigue at this stage of their treatment and does it subside after treatment has finished? My dad cant see a light at the end of the tunnel as hes feeling so awful, it would be great for him to chat with someone who knows exactly how he feels.

Thanks

[tomParticipant]

Hi Nicola and Dad ?

Welcome to you Both, and it will get better I was on CTD in 2009 then SCT dec 09 now am drug free and doing Good, I want be as fit and as well as i was Prior to getting MM but its good enough for the moment (I am now 57 years young) still working and blessed that my company have gave me a light duty job and am still on it 🙂

Anything you and Dad need to know fire it off nothing is too silly a Q to ask so dont feel should I shouldn't I just ask 😀

Tom "Onwards and Upwards"

Ps where is your Dad having his treatment as some one here might be in same hospital and can give Local Info 🙂 xxxx

[adamsp41Participant]

Hi Nicola…the first thing I would say is that everyone reacts differently to the treatment…I was diagnosed Aug 2008 and had a SCT in Jan 2011 and am now in complete remission also I am Myeloma X1 trial….but….from day one to today I have suffered from fatigue /tiredness sometimes severe…but other people on this site seem to not suffer from fatigue so severley but perhaps have other side effects…tell your Dad he is not alone and do as your body tells you if you need to rest then rest…as my nurses have always told me you WILL get better…wish your Dad well…stay safe…Phil

[Pickle2024Participant]

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 his response and the possibilty of another 2 months treatment. Mum spoke with the clinical trials nurse and asked about the exhaustion and they didnt seem concerned so we assume its normal at this stage of his treatment. We all try and help dad along and get him through each day but its heartbreaking watching him feel so awful, cant wait for the treatment to finish and get my dad back to some normality. Hes 73 years young and was increadibly fit and healthy prior to this so its been a real shock!! Its easy for us to all keep telling him he will get better, an emotional rollercoaster to say the least :-(.

[Pickle2024Participant]

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

[tomParticipant]

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 him to.

Good Luck on the road to remission.

Love Tom "Onwards and Upwards" xx

[Pickle2024Participant]

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

[tomParticipant]

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 😎

Love Tom "Onwards and Upwards" xx

Where is your Dad having his treatment ??

[Pickle2024Participant]

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 para proteins but had high light chains but they said its the ratios that count…..mmmmm confusing. I like to know everything about everything, knowledge is power and all that!! Xx

[PeterJamesParticipant]

Hi Nicola
I am only 3 years younger than your Dad, I was diagnosed MM inMay this year, now just started my 5th cycle of CTD,
Heading I hope for a SCT in Jan at Cristies Manchesrer
My Wife & I attended the Manchester info day last Sat, met lots of people & learnt a lot
If they have one near you go to it, take your Mum & Dad
I also get a lot of good info from the International Myeloma Foundation in, the USA
There is a good write up on free light chains . Understanding serum free light chain assays
Basically two types of light chain, Kappa, normal level should be , 3 .3 to 19.4 mg/l
Then Lamda , normal level , 5.71 to 26.3 mg/ l
The Kapoa/ Lamda ratio should be 0.26 to 1.65
Theysaya normal ratio ida very good remission & is termed , stringent complete response
Get your Dad to stay positive , it's the only way !
All the best
Peter

[Pickle2024Participant]

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

[VickiParticipant]

Hi Nicola,

Just catching up with your posts. My parter Colin was diagnosed in October 2011. During his initial treatment, 7 cycles of cyclophosphamide, dex and revlimid, he got very very tired and could fall asleep at the drop of a hat. He had short bursts of energy and then al of a sudden would just disappear and he'd have to have a rest. On and off throughout the treatment and even now he is on a break awaiting SCT he still has real spells of tiredness, which we have worried about but is perfectly normal and expected by the medics. Colin got very low at times, and there were tears……but each new step and remaining positive got us to where we are now. Yes there are blips but overall a positive outlook really helped…..but it's hard to maintain it. A roller coaster sure, but the ride will be worth it!

Colin had a bence jones reading of 31000 when he started. It got down to 850, which apparently was wiped out by last lot of chemo, or will be when he has SCT and melphalan. His pps started at 17 and went down to 0. It has sure not been easy, with a lot of emotion and soul searching….but your dad will do it :-). Colin had one lesion, and now takes bone tablets each day. By the way to cope with the treatment we broke it down into chunks….doesn't seem QUITE so daunting 🙂

Vicki and Colin x

[Pickle2024Participant]

Thanks Vicky. I wish dad could get on here and chat to people who are going through the same as he is, we all sit on the side line knowing he's feeling bad but can't do anything to help. He has quite shaky hands at the moment which is made worse by the steroids and typing wasn't really his strong point before!!! I've been reading these replies to him which has made him feel a lot better knowing it's not just him. It's an uphill struggle but he's a strong person and we will get him through this. Thanks for taking the trouble to reply, it really helps.

Nicola xx

[mhnevillParticipant]

Hi Nicola

Just caught up with your thread about your Dad. My greetings to him. I finished CDT about two months ago and still feel very tired although all my readings are now down. I have been disappointed that I wasn't immediately feeling bouncing about once the treatment finished. In fact I have felt worse. However I went to see my new Consutant this week and he didn't seem to be at all worried about it, but has taken a blood test for thyroid because IO mentioned my hair thinning! I am not going down the route of a SCT. Is your Dad?

All best wishes to you, your Dad, and all your family.

Best wishes.

Mavis

[Pickle2024Participant]

Hi Mavis,

I'm sure your body is still recovering from all those nasty drugs and it will take a while for you to get your muscle tone back. Dad has lost loads of muscle in his legs where he is so weak most of the time and I'm sure that will take a good few months to start building that up again. I don't think dad is having a sct but this treatment is getting his light chain levels down. Did they take you off the treatment gradually and over how long? I've read that you need to come off the steroids slowly or you can get side effects from that too? I hope you manage to get to the bottom of your tiredness, it must be so upsetting after waiting all that time. Take care

Nicola xx

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