[robbojnnParticipant]

well i went back to see consultant  for results of bone marrow biopsy and skeletal survey.

apparently i’m in stage 2 and i’ve got lytic lesions in my ribs,pelvis,jaw and skull.

wow that was a shock to say the least. on the up side my consultant was very happy with bone marrow biopsy apparently i’ve got a lot of good cells.so much to take in and so many phrases,terms etc its very overwhelming.

anyway i’ve been referred to blackpool hospital to start clinical trial myeloma xi asap .told i need to have 6 months treatment  to ready me for a stem cell transplant.

lot to take in but i’m gonna fight this and now just waitng to here from b/pool i know it wont be easy and truth be known i am scared but i’ve got so much to fight for ,beautiful wife and to gorgeous sons.

the sooner i start the better…

hope all this makes sense this forum is a good outlet  anyway i’m off now best wishes to everyone on here and anywhere in the world with this illness

[rebeccaRParticipant]

Hi Robbo, Well now you have a plan to focus on and a future to look forward to after your SCT. I am quite sure you will sail through treatment/SCT as you are young and fit (presumably – if not..start now!) I am 6 months post SCT and back to normal and tho’ it is now a different mind game – getting used to check ups and being anxious about the results – it feels like normal again. I guess you will always be on a journey with this thing it will just take different twists and turns. You have the right attitude for this as you need to be strong, focussed and ever positive. Your head will be a shed for a long while yet but you do eventually reach a “calm” and acceptance. Someone on hear once said “worry does not empty tomorrow of its troubles; it empties today of its strength”. I always tried to remember this throughout my treatment and even now as it is so true. Someone else said “Turn that basket of worries into a basket of wishes” and at one stage I literally turned a negative into a positive wish and wrote it down and put it in a jar! when I did I actually stopped worrying as tho I had closed a door on it! I am not “new age” or anything but was willing to explore new ways of thinking and techniques to help get my head round this/new way of life. This is a huge mind game so concentrate as much, if not more, on your mind as well asyour body. Good luck

Rebecca

[robbojnnParticipant]

thanks rebecca  i will

[mhnevillParticipant]

Hi Robbo

Sorry to have to welcome you to this a Forum. Yes, there is such a lot to take in with a diagnosis of Myeloma. It’s not helped by each case being different. However, knowledge is everything so learn as much as you can from the a web Site and ask to get the MUZk Magazine if you don’t already.

You do have the right attitude. I believe that, and faith for those who have it, really help. I have been living with my lesions for four years now and have had no breaks, and am in complete remission following CDT.

Hope you hear from Blackpool soon.

Very best wishes.

Mavis

[tallulah55Participant]

Dear Rebecca

 

I’m a serial worrier – about everything – and your comments are really positive – thank you!

[Ang287Participant]

Hi Robbo
My husband was diagnosed at 55 with Stage 3 myeloma and fractures in his spine. His pain was terrible and initially he could easily collapse to the floor with the pain. He had to sleep for 6 months in a recliner chair as he could not lie flat. For 3 months he had to undergo very painful physiotherapy prior to his diagnosis but eventually an MRI scan got to the bottom of the problem with his back. He is also on Myeloma XI trial and had 6 months of chemo and SCT in February this year. In May he was told he is in stringent complete remission – which is the best we could hope for and he has only occasional pain in his back now. He took redundancy from work as they restructured his job but he is now doing things that he wants to do, along with occasional household jobs :), and his life is now a lot less stressfull than it was before the diagnosis I think as he used to work late at night and weekends as well sometimes with marking as he was a teacher. We are looking forward to our first holiday abroad for a long time in September and now life feels almost back to normal. He had his treatment at Manchester Royal Infirmary. He is now on no maintenance drugs at all and will just go for 3 monthly blood tests and still have monthly Zometa. Good luck for your treatment and hope you have many years of remission afterwards x

[robbojnnParticipant]

thankyou all for you’re replies and kind wishes

[robbojnnParticipant]

U N B E L I E V A B L E   a forum for people suffering with cancer and  some lowlife  mnages somehow to register on here and then try to sell phones/laptops etc…..

i hope there is some kind of moderator who can block  people like this

[webteamKeymaster]

Hi Robbojnn

We do occasionally get some junk that slips past our spam filter. There are dozens of attempts to post these kinds of messages every day but most do get blocked. I keep an eye on the forum but if you ever see any spam please drop me an email at webteam@myeloma.org.uk and I will remove it as quickly as I can and delete the offending account.

Regards
Stuart
Myeloma UK WebTeam

[robbojnnParticipant]

 

 

many thanks

[Author]

Posts