Diagnosed with Myaloma eight years ago, it has just become active

I suppose I have been lucky that my myeloma remained quiet (is the word simmering correct) for eight years but blood tests I had at the end of last year prompted my Consultant to arrange a PAT - MRI scan just before Christmas which revealed a tumor on a rib in my back.

I was told on 23rd Jan it was time to start treatment and a panel had decided this would begin with a course of Radiotherapy treatment over the following three to four weeks to blast the tumor, then a review meeting on 27th Feb with the Consultant (Dr Gomez) to discuss Chemo. treatment. OK I went away quite confident.

Days went by and no contact from the Radiotherapy unit so I phoned them and after being passed around various people found out that I had not been referred for Radiotherapy, that Dr Gomez had "not got round to it". His secretary assured me he had now sent the referral and I would be hearing something soon.

Days went by and still no appointment I phoned again on 10th Feb. They had my referral and someone would get back to me before 11am the next day.

I got a call the next day at 2pm, it was Dr Gomez, "how was I?", frustrated, what is happening?. He explained that a radiology consultant had looked at my scans and decided that I did not need radiotherapy but should go directly on to the Chemo treatment. Dr Gomez said that provided I was not in any pain he agreed with this and would discuss the Chemo treatment with me at out meeting on 27 Feb.

I was a bit stunned by this and should have asked more questions but I didn't. I had a little trouble clearly understanding Dr Gomez on the phone as English is not his first language, it will be easier for me sitting in front of him.

Is it common for treatment decided by a panel to be changed by a single Doctor. I can't help wondering if the Radiotherapy Dept. is extra busy and are trying clear some of its referrals!

I would appreciate any thoughts or comments. 

  • Hi  and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear that your Myeloma has raised its head again.

    I have a different type of Blood Cancer so do understand the complications behind treatment and as to how decisions are made.

    MDT meetings are a collection of experts from all areas of treatment who assess the best route forward and agree on this. Yes it can be the voice of one specialists highlighting that there was no advantage going down a line will influence the MDT - it happened to me, but its all about trust..... and nothing about clearing referrals. It's all about getting the best treatment for your presentation and importantly not over treating your body as once you use some treatments they can not be used again.

    You need to get your questions all ready foe your appointment or call your SCN.

    Can I direct you to this link to our very supportive Myeloma group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.

    To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

    You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.

    We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.

    Our Online Information and Support Section  is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.

    Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.

    When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.

    All the very best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Thankyou for taking the time to reply to my message, I feel a little reassured about how the treatment is decided. I am new to this and am trying not to over react and especially do not want to alarm my family so if I can stay positive so will they.

    I have read your profile and feel humbled. Keep well

    Ducas
  • Hi again, just one story of the fight for life.

    Do join and post in the supportive Myeloma group and I am sure that my friend will pick up on your post.

    All the very best.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi Ducas,

    Just wanted to say hello from a fellow myeloma patient, please do come over and join us in the Myeloma - Discussion Forum part of the forum.

    Bone lesions on diagnosis are sadly a very usual thing for myeloma patients. Radiotherapy can be used, but it is actually very normal to go straight into chemo, that normally does the trick to put the myeloma cells back in their box and if needed you can have bone strengthening drugs to help correct where the legions are.

    I’m really sorry that the smouldering myeloma is now active, but hopefully you’ll feel assured that there are loads of effective treatments out there for myeloma which can be really successful in putting you back into remission.

    Hoping to see you over in the myeloma part of the forum shortly.

    Greg