[graemeandrewarthaParticipant]

Have just joined the forum even though I was diagnosed in February 2014 but not confirmed until March 2014.Very interesting comments and tips found throughout. I have just finished my first cycle and Monday starts the 2nd with a total of 59 pills during the day.

I have been surprised by the limited knowledge of GPs, Physios and Chiropractor (all were used at the beginning and all did all the No No’s. Wrong pills, exercises etc).

Orthopeadic consultant picked it up at our local hospital and then there was a Bone scan, CT scan & MRI. Bottom line is Multiple Myeloma with lesions all over the place. Worse area is my left hip/pelvis where bone has been lost. If I could just get walking properly again then the rest can be dealt with. Main problem with medication on this cycle was the hiccups (steroid weeks). I use the “sip as much water after taking a deep breath, breath in again and exhale” works for me.

The other thing I have to mention is the wonderful support from the Oncology department but especially my wife. She has put her life on hold as well and I am so well looked after that I realise that anyone who does not have any form of support must find it difficult especially on those down days and there have been and more possibly to come.

I am on 8 Tramadol & 8 Paracetamol per day with access to Liquid Morphine if required. Any other tips for pain relief that is in both leg joints at present would be appreciated. Regards to all.

• This topic was modified 10 years ago by  graemeandrewartha.
• This topic was modified 10 years ago by  graemeandrewartha.

[Anonymous]

Hi, sorry you’re here but you’ll get plenty of help from everybody. My husband is the patient, I’m just the carer but your pain and lesions sound identical to his,and I felt I needed to answer. The pain will decrease a great deal as you go through the cycles. My husband was in such severe pain and limited mobility at the beginning that he thought it would be like this forever. However after each cycle the pain got less. You don’t say what age you are or what treatment your on, but I promise the pain will get more managable so hang on in there.

[graemeandrewarthaParticipant]

Hi and many thanks for your reply. As my introduction said I am at the start of this so it is encouraging to read all the news and good reports. I will be dipping into the forum on a regular basis. Sorry forgot age 67, in August. Regards

• This reply was modified 10 years ago by  graemeandrewartha.
• This reply was modified 10 years ago by  graemeandrewartha.

[keithmtParticipant]

Sorry you find yourself here Graeme but it is a great source of info and kindness. I’m 63, diagnosed Aug 2013 and put on CDT. Like you, I had hiccups, in fact very bad hiccups, so they halved my steroids for the remaining 5 cycles. I still got hiccups but much more manageable.

The best of luck on your journey. Just remember, one day at a time.

Kind regards

Keith

[tomParticipant]

Hi Graham

Sorry for the delay in my reply, but a warm welcome.

I am age 58 now and had my treatment CDT in feb 2009 leading up to my SCT in December 2009 was in remission and drug free for four years,

So what you are going through is a doable but you will have to listen to your body and when it tells you to rest rest its the only way.

My Myeloma has kicked off again and I am on my forth Cycle and third Velcade in that Cycle.

as for the Hiccups my chosen method and it works for me all the time is :::: fill you mouth up with water, put your fingers in both ears, and then swallow SLOWLY and then walla all gone 🙂

Good Luck in your road to remission

Tom Onwards and Upwards

• This reply was modified 10 years ago by  tom.

[graemeandrewarthaParticipant]

Hi Tom and thanks for your interesting reply.

It is good to know the good and possible bad side of Myeloma and treatment.

Can I ask, when you were in remission how did you know it had come back. Same signs as before or something “not right” or other.

The resting I have to agree with. Did not want to but after a lie down I do feel better.

2nd cycle for me and just started the Thalidomide so waiting to see what effect if any that will have.

Regards

Graeme

[tomParticipant]

Hi Graeme

Not a problem, I found out that it had come back after having my regular bloods done, but in reality am sure my wife and i had known as i had lost weight again and that for us was an early indicator.

Bearing in Mind all MM patients  differ in how they cope from one to another even when on the same treatment that said I had to go on sick halfway through my third cycle 🙁  but it all worked out.

Good luck on your journey

Tom Onwards and Upwards

[mhnevillParticipant]

Hi Graeme

A belated welcome from me. CDT knocked my MM completely back to ” undetectable” hope yours does the same.

Very best wishes.

Mavis

Hi Tom

Hope your new treatment is doing its magic and brings your readings right down.

What I want to know is, why does MM and treatment make folk like you lose weight, while others, like me, just pile it on, and on and on…… I am now having to work really hard to get back to my post chemo weight which was still massive!

Still, I’m still alive to worry about it, praise God.

All best wishes.

Mavis

[stanley-1960Participant]

Hi Graeme,

It sounds like i am at the same stage as you diagnosed march on second cycle now CTD  raging hiccups week one. Luckily no problem since. I believe i have lesions all over the place skull,back, ribs,upper arm and shin but unlike yourself my mobility is good. I also have a plasmacytoma 4″x 2″x 2″ on the 5th rib. Speaking to my consultant he says none of mine need surgery and he is not concerned about the amount but more concerned about bringing the underlying myeloma under control. Have you been told what the plan is for your pelvis.

Best wishes,

Stanley

[graemeandrewarthaParticipant]

Good day Stanley-1960

Thank you for your post.

Apart from my leg we seem to be a matched pair. The consultant Orthopaedic surgeon who first spotted this has said that due to the size of the hole in leg/pelvis he would not even consider trying to fill it. If it was to be done then I would have to go to Oxford for the specialist hospital. He is worried about the possible down side of attempting it so I shall wait and see over the next few months.

Apart from the first week when everything went wrong I have been feeling good. Need a crutch permanently on my right arm to take the weight but managing to get around and do things. Retiring and getting an automatic car were 2 of the best decisions so I am lucky there. Not sure what it would be like if I still had to work so I do feel for others.

All the best

graeme

[VickiParticipant]

Hello Graeme

Sorry for the belated reply. My partner Colin was diagnosed in 2011 after suffering mega back pain. Like you he had tried all sorts of painkillers, a specialist back consultant who missed!!! Reference in the report to a myeloma wedging in his back and finally and thankfully his own Gp who was on the ball,referred for detailed blood tests and myeloma diagnosed.

The roller coaster began and we thought how were we going to get through it, we did. Colin had an sct in November 2012. His back was terrible at first and he couldn’t walk from chair to chair. Then with radiotherapy, some gentle exercise and very good pain management he got to where he is today. Actually ridden his bike a few times!

He has had 19 months remission, although this last week his consultant said his light chains are rising…..so we don’t know what the future holds. That said there are lots of treatments out there and just wanted to give you the encouragement that life will get good,and a new life starts. Yes it’s different with myeloma as it’s always there, however grasp every moment, battle the treatment and give yourself some goals. Hope this does give you some encouragement and best of luck with it

Vicki and Colin x

[graemeandrewarthaParticipant]

Hi Vicki & Colin.

Appreciate your reply and as said there are different treatments out there.

I am lucky as my wife has been with me from day 1 and attends all visits with me (well I can’t be expected to remember everything). If there is a right time then as I was due to retire anyway more time can be given to the fight.

I don’t envy anyone who still has to work and get treatment plus the rest recommended each day. Family certainly boosts me.

My pain at present is only in the left leg. Off for bone strengthening on Monday so will see if that helps.

All the best to you both.

Graeme

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