[OutdoorsPaulParticipant]

Hi all
Just been diagnosed with Myeloma 11 days ago and just out of hospital after tests and some radiotherapy.wow certainly a alot to take in!!The medical staff were fantastic and we are certainly lucky to have the NHS.I have started taking my first cycle of chemotherapy tablets the RCD route/Myeloma 11 trial.I am 39 and quite physically active hill walking,birdwatcher and enjoy camping with my wife.I have been reading some of the posts while waiting to sign up and have taken alot of strength from what I have read.One of the points i will take note of is "listen to my body".I do feel a little lethargic/tired legs if over done something.My appetite at the moment is like race horse! I can eat normally but "by gum!!"
Hope to chat along the way and make new friends, I am sure I will have lots of questions.
cheers Paul

[brochoParticipant]

I have tried several times to reply to Paul but it wouldnt let me !! I am sorry you have had to join us but you have definitely found the right place for support , advice and friendship I am impressed with your hospital getting your treatment started so quickly , mind you I am sure your head is spinning with all the info!! It does get easier as you go along , all those medical terms will be rolling off your tongue before you know it! You certainly sound fit and this combined with your age gives yo a definite advantage with treatment but as you have noticed there are times you will feel wiped out and you just have to give in to it!! If you e-mail Scotty ( the post below yours ) she can send you an invite to the Under Fifties Site , there are a lot of people closer to your age Do you have children Paul ? People have said they find both sites useful so I do hope we still see you on here The steroids make you eat for England , there are times I could eat the furniture!! Watch out for the mood swings though Dex can make you very grumpy and irrational sometimes , so warn your wife!! Gill whose husband has mm coined the word Dexatude which sums it up perfectly ! Good luck Paul I look forward to reading your posts Bridget

[ElizellenParticipant]

Hi Paul!

The system would not let me respond on your thread soI am posting here instead.

Welcome to the forum none of us ever asked to join, but which is here to help us all get support and info about this blasted MM.

They do seem to have moved quickly in your case, I hope the radiotherapy is doing its thing and that you will be a long time feeling as good as you are at the moment.

Elizabeth
XX
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[ChelleMcParticipant]

Hi Paul.
Welcome. I'm sure it was tough to hear your news. But the others are right this is a great place to get advice, support, friendship and vent. My husband is 37 and was diagnosed at 30. I have just started a Support Group in Burton because of how wonderful Myeloma UK has been. I wanted to give back some help. It does get easier after some time. Coming from a wife's point of view… Don't be afraid to lean on her! It is very hard to see the person who is your world feel like he has to carry the burden. And try to be understanding if she Detol's the house and won't let you do too much..lol If you or your wife need a chat feel free to contact me.
burtonmyelomaSG@yahoo.co.uk
All the best of luck. Chin up & stay positive… xxxx

[OutdoorsPaulParticipant]

Hello Bridget,Elizabeth and charlie,
First of all many thanks for the replies,once i signed onto the site my broadband went down so I could not respond.Its still 50-50 so hence tapping out a reply now.
The advice about Dexatude I would agree with I have found my self a little spikey at times not like me as I am very liberal in fact quite horizontal some might say!
I have a slight sore throat maybe side effects or dry bread?My wife and family,friends have all been helping out and the advice you guys are giving is dont be afraid to let some one help out I will take the advice and when tired and sit down.Work are being supportive at the moment which helps. I am a member of a mountain rescue team where i live the team are allowing my to carry on with a role with fundraising/practical support to the team ect.I have taken myself off the "call out list" as I suspect that's a little ambitious at that moment!I completely agree about being positive when you can because then darker moments do appear when you dont expect them.
I have another question..I take revlamid at 5pm ish 2hrs later have a hot flush and durring the night my pillow is soaked so I presume this is a side effect? It does not happen durring the day.Any ideas?I will send scotty an e-mail for an invite to under 50s site.I hope this makes it onto the post board fingers crossed!!
take care all and I will write soon
cheers paul

[eveParticipant]

Hi Paul
I am a carer to husband Slim,I sent you an email to say something wrong with your posting,other wise a lot more people would be giving you a welcome nod,no one seems to be able to reply to it.
My husband was on cdt to your cdr on myeloma trials,most people take revlimid before bed time helps you sleep.Specially after 4 days of dex you get a bit,dextatuide moment.
I would say try to do things as you would normally,but listen to your body if things don,t seem right,and your not sure,you can always ask away on here,but often enough they will tell you how important it is to seek help,you most proberly have a 24 hr help line, Welcome to the club and good luck on your journey Eve

[susannahParticipant]

Hi Paul Im Sue carer for my husband Michael, hes had MM for 15years 45 when diagnosed, hes now on a clinical trial for Bendamustine.
We have always taken one day at a time, and that seems to have worked for us

Good Luck with the trial

Sue

[OutdoorsPaulParticipant]

Hi All
Thanks for all the support and advice which i will take i promise!
Been on the RCD medication pathway for 11 days now so meds must be well into the system.I do have a slight sore throat and sometimes get a hot sweat usually after Revlamid in the evening. I was told to take Revlamid at "teatime" so duty fully taking at 5pm..could i take it later say 7pm which is my natural evening mealtime?
My legs felt a little heavy early on but seem to be improving with more use I am walking durring the day on the canal about 2miles.As still on sick leave from work its part of the daily exercise if I dont feel to tired.Seemed to have developed a shaving rash under my chin area which never happened before..could be side effect or cos of the radiotherapy maybe any ideas anyone?
I keep asking my wife who is opposite my now trying to read her book various things…better stop I know when to quit!
Oh yeah first blood test tomorrow at the hospital not looking forward but needs must.
cheers Paul

[brochoParticipant]

Hi Paul I am Revomod too and I have always taken it late evening , usually aor a lttle afrer about 10 pm and there have been no problems , so Would take it when it suiys you . I do get hot sweats quiye often and I think that is due to Revlimid too but you should mention it , and any other side-effects tooo, when you nwxt go to hospital.It made me laugh when I looked at the possible side=effects in the Eev leaflet !! But you should tell them of any thing you feel may be due to your drugs , however small Good luck with the blood test I hate them too!! love Bridget x

[webteamKeymaster]

Hi All
First of all apologies for interrupting the discussion, secondly apologies for the gremlin that stopped you all from replying to Paul's post. It was caused by the double quotes in the title. I have merged these two threads together and reported the error to our development team.

Regards
Stuart
Myeloma UK WebTeam.

[OutdoorsPaulParticipant]

Thank you Stewart much appreciated.
Bridget thanks for the Revo advice you seem to have a wealth of good advice. and I think I will take the revo later in the evening.Today is my first day of the 4 days of high dose Dexy so I will be assessing myself as it goes.Went for blood test and away for 9.30 thoe it did involve 22 mile journey.Will try to see if consultant will allow bloods to be taken at my local health center as we are 12miles from local Hospital.Enjoyed walk on canal in sunshine and friends over this weekend..so some nice food and lager…non alcoholic! thoe i will have a small glass of wine.Monday is first consultants apt since being discharged so we shall see..
enjoy the weather
cheers Paul:-)

[eveParticipant]

Hi Paul
Have a drink while you can,it is allowed because your taste buds,will change some times drastically,my hubby has always liked his wine,and G&T does not like anything now LOL more for me:-P

Good luck with your treatment Eve

[lorraineyParticipant]

Hi Paul

Sorry you've had to join the friendly site that none of us wanted to join…meant in the nicest of ways 😉 I just want to say good luck with your treatment and I hope you have good results with it. I took Revlimid after my SCT for 18 months and it put me in remission 😀 I suffered quite a few side effects with it but it was worth it. Keep up the good work and as everyone says listen to your body and tell your doctors of any problems you encounter along the way.

Take care, love n hugs Lorraine xxx

[DebsParticipant]

Hi Paul

Welcome to the site….it's a great place for support etc.

I am 36 and was diagnosed at 34 with smouldering MM. It developed and I started on revlamid on the Myeloma XI trial. Plateau'd quite early and went onto velcade and am now 44 days post SCT. Just for a bit of history!

Take it easy, fit the drugs round you as much as you can, and report all those side effects. But hopefully you'll get through it without too many problems. I know I didn't suffer too badly on revlimid (though I gave up on wine as it tasted foul!), and even the velcade wasn't too bad initially so not everyone gets a bad time on the chemo.

Join the under 50 site too – you can let out a few more expletives there if you fancy it!!!

Take care and good luck with the treatment
Debs x

[mhnevillParticipant]

Hi Paul

This is an "oldy" of 66yrs answering a post on the fifties strand! Having just picked up your posting i also wanted to welcome you, sadly as it were (!) to this great site.

It's good you have been given Revlimid as part of the Trial as it is supposed to be very good for a front line therepy. I read lots of stuff on the Myeloma Beacon and Myeloma Foundation Web sites. Although American I find them very helpful. I think it is important to learn as much as you can about this dread MM as everyone is so very different and so are the views of the Consultants.

I am obsessed with para protein levels as I am trying to stave off any chemo at the moment. Do you know what your level was/is?

Do hope the drugs work wonders for you and jolt you into a verty long remission.

All best wishes.

Mavis

[Author]

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