[LouiseAParticipant]

Hello to everyone.

Last Friday my dad was diagnosed with myeloma type IgM. It was discovered through a routine blood test and then a series of other tests. He has no other symptoms other than viscous blood. We are all in total shock as he is an extremely fit and well 70 year old, indeed he is perhaps in better shape than my 43 year old husband! Due to his good general health and fitness he is being offered intensive treatments, one of which is the clinical trial Myeloma XI (?). Regardless of his decision to take part in the trial or not his doctor wants him to start treatment asap to bring down his high paraprotein levels.

My dad has a very positive attitude to life and his way of coping with the situation is to find out as much as possible about the disease. He is obviously scared and worried about the future and we are doing our best to support him (although we are scared too!). There seems to be very little information on Myeloma type IgM and the effectiveness of treatments, which is quite worrying. Furthermore, I just wondered if there was anyone of a similar age that has received intensive treatment for Myeloma in general?

Thanks so much for any advice you can offer.

Best,

Louise

[PeterJamesParticipant]

Hi Louise
You Dad &I have some simaralities, I am 70, still working, now part time since the advent of MM
My family are being incredibly supportive, very stressful for my Wife, I have a Daughter of 47 & a On of 40, plus a mixed bag of 5 grand kids . Luckily I am a very laid back , non worrying type
I have had to cut out all the long distance travelling I used to do
I like your Dad was diagnosed after a routine blood test for my PSA, the Docs practice nurse decided to do a full blood test rather than just the PSA , this revealed I was anaemic , also there were some unexplained proteins in there as well ! My Doc had the presence of mind to send me straight away to Heamatologist for full tests, then on to specialist who confirmed I had MM. Luckily found very early so I am stage 1
I am on the CTD treatment, 6 x 3 week cycles. I finish my thcycle in10 days
My PP level pre treatment was 46, after the th cycle it was down to 5, 2 more to go, the nearer zero the better, I hope to have my SCT at Christies in Jan
Side effects are minimal, which makes me a lucky bunny
Do not trol the web, many sites are years old, 7 or 8 years ago the prognosis was grim , you got about 12 months ,you will worry yourself to death, since then huge strides in treatment have been made & a raft of new drugs are coming out all the time
Stick with the Myeloma UK web site, the USA site , International Myeloma Foundation is very good , sign up to both of these
The USA site has a good write up on your Dads condition
What was your Dads high level PP at ?
Go to a Myeloma info day , they are very good, meet patients & very good speakers, also find your nearest support group & go to their meetings, call the Myeloma hepline
where do you live ?
The most important thing is to stay positive come what may! Knowledge is all, do your research
Tell your Dad not to let the b—- r get him down , just because we are 70 does not mean crawl into a corner & give up , I have told my specialist that if She does not get me to the Queens telegram She is sacked!
All the best from another OAP
Peter

[Pickle2024Participant]

Hi Louise,

My dad was diagnosed with Bence Jones Myeloma earlier this year and is on his 6th month of treatment and also on the X1 trial. My dad is 73 and was also fit and healthy before this horrible illness started. Dad also had the bone disease, a reading of 7000 for light chains and 0.1 paraproteins. He was initially selected for CTD on the trial, which is chemo, steroids and thalidomide. He doesnt have many problems with the chemo, the thalidomide has made his fingers and toes painful but its the steroids that cause most of the problems. They make him very tearful and weak and says that he has no control over his body. He finds it really difficult to walk and getting out of a chair is an effort. He also has to have an infusion of zometa once a month which gave him flu like symptoms and pain in his bones. Apparently, this should get easier the more he has. After saying all that, dad is no longer in pain with his back, his paraprotein levels are now 0 and his light chain levels are 52. The treatment is hard but works so stick with it. If you need to ask anything else, please do so as I know how you are all feeling right now. I wanted to know everything and spent hours on the internet, where as dad didnt really want to know. I think knowing about Myeloma makes you feel more confident about the results of the treatment.

Take Care

Nicola xx

[WebsterParticipant]

Hi Peter,
Thank you for replying to my daughter Louise. My pp is 47. I am seeing my consultant this wednesday regarding wether to go on the standard treatment or the myloma X1 trial. Haven't made my mind up yet. Any comments re this? Have yet to make contact with local support group. My wife and I live in east Yorkshire. Was originally diagnosed with non hodgkinsons lymphoma but the bone marrow biopsy confirmed myloma IgM.Dont yet know what stage I am but have no bone pain, just night sweats. Feel a bit tired and still a bit in shock. Intend to keep a positive approach to everything.

Regards
Garry

[LouiseAParticipant]

Thanks Nicola. I know what you mean about spending hours on the internet! I just wish I could find more about Myeloma IgM type – although I have just found something on the Myeloma US site. It sounds like your dad has been through a lot. It's reassuring to know that there are other once fit and healthy 70 year olds (plus) that have had treatment and are getting better.

The main problem for me is that my mum and dad live in another city which is a two hour drive away. I have two school age children (12 and 9 years) so it is impossible for me to offer day to day support other than to call them.

Thanks so much for your advice.

Best, Louise x

[PeterJamesParticipant]

Hi Garry
My iPad. Missed numbers out or I did ! Finish 5th cycle on 17 th. Oct. then 6 th. & last cycle, after the 4 th. cycle my PP was down from 46 to 5, zero here we come , I hope !
Had three teeth out today in readiness for the Zometa treatment ,relatively painless. start in next 2/3 weeks
I have not as yet been offered or put forward for any trials, not sure if I should ask but I will take it up with my specialist on 17 th. Oct visit.
Depending on where you live you have a choice of two local groups, I am going to the Bury group , nearest to me as I live approx. 6 miles east of Clitheroe, spent a lot of time on business in the Selby area over many years
Asi i posted to your Daughter the USA site has good write ups on your particular condition
Avoid web sites like the plague
I got a good info book from Macmillan , doesn't mention your condition but might be worth a call , as I said knowledge is all important
Started 4 days of steroids today @ 7-30 am , by 2pm I felt great, very hyper, rambo with attitude , good do fast walk, before legs were not happy, all arthritic bits disappear, i sweat a lot, hooked on sweet foods , mind you i was pre M M ! then by Sun I will feel crap , but bubble up again over two or three days, to slow walk & not a lot of energy
My eyesight has gone a bit hazy & my hearing a bit worse, considering I wear hearing aids this is a pain
, would be nice to stay on some steroid dose after my chemo. finishes, my Mother in Law , now 91,has a small dose of steroids many years ago , kept her going , then they took her off them & she fell apart so to speak
I find from time to time my energy just drains away suddenly, I sit down , have nap & all I well after a bit of a rest,
Stick at it
Kind regards
Peter

[jillsParticipant]

Hi Louise,

Welcome to the forum. The fact that your Dad is fit and well is a good thing but others are right that the treatment will knock the stuffing out of him for a while. My Mum, 83, was diagnosed with MM when she was 79 after routine blood tests and has had two rounds of treatment, CTD for about 9 months followed by a 2 year break, then four rounds of Velcade which finished in August. She is currently treatment free (apart from monthly bone strengthener) and just being monitored every three months, and actually much healthier than she was a couple of years ago and feeling more positive as she now knows that the treatments are effective.
So 70 seems quite young to me…!!

All the best,

Jill

[LouiseAParticipant]

Thanks Jill, that's very reassuring to know.

Best wishes,

Louise

[WebsterParticipant]

Hi Peter
Thanks for your reply. Going to see specialist today to ask to go on myloma X1 trial. Hopefully starting with first course of chemo from today. Will be doing another bone marrow biopsy so that they can freeze it for future reference. Presumably will also check /confirm I have IgM melanova. Apparently it is quite rare. Hope you are still going well . Key thing is to be positive !
Regards
Garry

[LouiseAParticipant]

Hi Everyone,

Dad has decided to opt for the MM 11 trial and was randomised to CDT treatment. He was in hospital for 5 hours today having had lots of prodcedures done (Bloods, bone marrow biopsy, treatment to protect his bones) and has come home with a sack full of tablets, needles, needle disposal box etc! He starts treatment tomorrow morning and has an appointment with doctors so that they can show him how to inject the anti-blooding clotting medicine. I was wondering if anyone had any tips for making sure he takes all the tablets etc at the right time? I thought maybe a spreadsheet with tablets, times to be taken and days of the week. He seems more upbeat about it all at the moment, I think he has been well looked after at the hospital and benefited from speaking to other Myeloma patients and nurses – I'm very proud of him!

All the best,

Louise

[PeterJamesParticipant]

Hi Louise
I am on the CDT treatment , steroids are great, not so good when you come down after four hyper days, do all my jobs on steroid days
Bet he loved the bone marrow sample , from hip ?
I also inject, sounds a bit dramatic, but dead easy & painless , pinch belly & stab ! Helps to be well padded !
My specialist gave me a coloured idiot proof bar chart re the daily pill dosage which alters all the time , I take all the cancer drugs but Thalidomide before lunch, then Thalidomide later after tea, say 9 pm then inject @ 10/11 pm
I take one 30/40 mins before breakfast & one anti sick with each meal whether I need it or not , just makes the routine easier to take it
You just need to get into the routine
If it will help send me your e mail to : peter@peterjstevenson.co.uk.
I will scan my bar chart & send to you as a crib
Keep up the positive bit
All the best
Peter

[Pickle2024Participant]

Hi Louise,

I created a spreadsheet for mum with each drug, then morning, lunchtime and evening- and how many to take. Mum just ticks it off when she gives them to him. This has also been helpful if he had any hospital visits so they knew exactly what he had and when. Its all very confusing to start with but is actually quite easy once you get into a routine.

Nicola xx

[VickiParticipant]

Hi Louise and dad Garry

My partner Colin was diagnosed with mm age 56. He elected to go on the myeloma x1 trial, randomised to have revlimid, cyclophosphamide and dexamethasone. Like your family we were knocked for 6, no symptoms, had been golfing, skiing and kayaking and a walking holiday in July 2011 and the diagnosed oct 2011 after having blood test following bad back! Anyway enough of the story! Colin had 7 cycles on the trial and after 2 false starts collected 2m stem cells for transplant in a couple of weeks.

What i am trying to say is that the trial worked for him. To keep tabs on the tablets regime we did a spreadsheet so that we knew what was required and what had been taken each week. We' d also keep a little note book of what he'd eaten, how he felt each day etc. This kept a tab on food intake, mood, emotions etc. Colins emotions went up and down, I think due to steroids that Peter mentions, and he did have a few broken nights sleep, again I think due to steroids? The notes were also a good reminder to take to the consultants if there were things that happened, side effects etc that we would like to query. When I read the Internet before diagnosis I could've shot myself, there were some really depressing ones, so stick to the ones Peter mentioned. Good luck to dad and you all 🙂

Vicki and Colin c

[tomParticipant]

Hi Louise

Hope its all sorted now and i wish your Dad Luck in the treatment that has been given, it will have its rough days but it will be well worth it

Tom "Onwards and Upwards" xxx

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