This topic contains 8 replies, has 7 voices, and was last updated by 
tom 10 years, 10 months ago.
Hi everybody out here – looking for some support from all you lovely people out there. I was diagnosed April 2013 following being hospitalised with meningitus. So a double whammy for me!I am currently on a clinical trial have finished taking oral chemo and am now on my third course of Velcade – went yesterday and my para proteins have gone from 33 which the initial reading to 2.6 – but they would like them lower if possible.
Finding it difficult at the moment – started off so positive – but I feel that has dropped by the wayside and feeling very weepy. I seem to have had so many antibiotics for various minor infections that because of the suppressed immune system they have really taken their toll-however my GP has been marvellous – just wanted to bend someone’s ear – trying not to say too much to my family as I know they are worrying so much.
Hi Izzie,
First off Happy New Year to you and your family! Welcome to the site no-one wants to be on ; ( but now you’re here you will get lots of advice from everyone and they’re all in the same boat 🙂 My husband is the one with MM so I can only tell you about what I see and can only sympathise with your pains and fears etc. You really have joined the rollercoaster of the MM journey! I think everyone goes through a mixture of emotions and that is perfectly normal and understandable ,But you are doing great re your PP’s and in the low moments try to visualise the war between MM and you!! Try putting your cycle on the fridge every month and get your hubby and son to write “battle plans” for each day!! e.g. scouting party out looking , napalm ordered, grenades ready etc. I know it sounds childish but my daughter and I loved putting the worst comments imaginable and it made my husband smile!! This helps you all focus on the “enemy” and we all found it kept us postive! My husband was diagnosed in Feb 2013 and in Nov had his SCT. So try to keep smiling and get those bombs ready!
Pauline.xx
Hello Izzie,
Many people refer to the Myeloma journey as being on a roller coaster and I have found this to be true. It is my husband Phil who has Myeloma, he was diagnosed in May 2012 and after six cycles of dex-dox-velcade he had a SCT in December 2012. There have been many ups and downs along the way but one thing I found helped while he was on the treatment was to chart the paraproteins on an excel graph. It was a lovely feeling watching the numbers and the graph line drop each month as the paraproteins decreased, it was something concrete to look at and remind us why the treatment was worth it. I can only speak as a supporter but I often find myself feeling very weepy and often actually weeping 🙂 I find it helpful sometimes to cry as it is not good to keep everything bottled up. I also attended some counselling sessions and found them helpful as it was nice to talk to someone who was just there to listen.
This forum is also a great support, I hope you will continue to let us know how you are doing as we are here to listen and help if we can.
Megan
Dear Izzie,
Happy New Year!
When I was diagnosed in March 2013, I too started positive! I have remained so for the most part but there are times when my head would start to go down.
It gets harder as time goes by.
Just keep believing and working on it and you will always pick up again. I have been down that route myself.
Don’t bottle things up either – follow the advice of Pauline and Megan.
Now, I look forward to remission, to returning to work and to returning to a more active life. These things help me to remain positive.
Keep us updated and all the best in 2014.
God bless you
Graham
Hi Izzie
I was diagnosed in April 2013 as well. After initial therapy with CTD (cyclophosphamide, thalidomide and dexamethasone) my paraprotein was undetectable, but 3 weeks later when I was transferred to Hammermith Hospital London to start the transplant process, my paraprotein had
already crept up to 4. However they still went ahead with the high dose chemo and collected my stem cells. I am now waiting for app’ts for the stem cell transplant. Are you choosing stem cell transplant? If so I would have thought a paraprotein of 2 would allow that, but maybe you are on the trial that is looking to postpone the transplant.
I refer to my myeloma enemies as “gremlins” and while I was really depressed when my paraprotein returned after only 3 weeks off treatment, I believe that to defeat this evil disease, you have to bounce back with a steely determination to beat the enemy just as others have described. Nobody ever told me that controlling this bloody disease would be easy and it is not! But we have no choice!
Carol
Hi Carol – lovely to hear from you. Yes I am on a clinical trial – thought it was the best way forward. Initially started off on Revlimid, cyclophosphamide and dexamethsone for 6 cycles and have am now just on my third cycle of velcade which I have by injection twice a week. They tell me they like them as low as possible – so I need about two/three at the same levels. I am under Doncaster/Sheffield hospital and asked them if I could go on holiday before I had my stem cell replacement. I feel my husband and I need a bit of sun on our backs – they said people do – would that mean that when the medication stops my paraproteins would start rising again and I would start feeling ill again? It seems I would be undoing all the good work of getting the little buggars to disappear!
How wonderful that you had a paraprotein level that was undetectable – that would be music to my ears
Izzie
Hi Izzie
Enjoy your holiday and don’t worry about your paraprotein rising. Many people have months or even years in remission without a transplant. I was just one of the unlucky ones to lose remission so quickly.
Carol
Hi Izzie,
I can’t add much more about how usefull this site is and how to deal with the illness. My wife worries far more about it than I do, she watches my PP levels, checks my blood results, insists the medics look at every alternative before settling on a course of action. As for me, I do have a little bone pain sometimes but I try and lead a normal life. I don’t worry about PPs and alike because I can’t do much about them. I spend my time being told what I can’t do rather than what I can and that’s what really brings home the effects of the illness. So rather than concentrate on figures and graphs that I have no control over, I’d rather do things that I can manage, like staying reasonably fit – still use the bike when I can and go walking in the forest. Mentally I’ve had a few dodgy moments but that’s understandable as our stress levels go through the roof. The other really great thing here is the support group, there are people there who have been in remission for over 10 years and every one is so supportive, it was so hard to believe that at the Christmas do, over half the people in the room had MM, a casual visitor would never of known that there were so many ill people in the room. So use every form of social support available, don’t worry about things you have no control over and concentrate on staying as fit and active as possible as this also aids recovery. Hope this year for you is better than last.
Hi Izzie
Well what can I say ??
I had my SCT in December 2009 and up until 2013 was in remission and drug free, so the first transplant gave me a long and drug free four years and for that am pleased.
But did I have off days ?? Yes I was weepy and yes my head was low, lower than I wanted it to be.
How did I do I cope ??? Well I fight the myeloma head on and tell it (yes I talk to my myeloma, told you I was strange ha ha ) to get back in the well I built for it on my shoulder and slap my shoulder when it kicks off oh and not forgetting the counselling I had honest it worked a treat just after my SCT.
Good luck on your road to remission I gave just hit a bumpy bit but am sure I will get through this second lot of treatment.
Love Tom onwards and upwards xxx
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