Bewildered

This topic contains 10 replies, has 6 voices, and was last updated by  lenny 3 years, 7 months ago.

Viewing 11 posts - 1 through 11 (of 11 total)
  • Author
    Posts
  • #137555

    pin45
    Participant

    My mum has been diagnosed with Myeloma and is currently on VTD 2 weeks on Velcade, Thalidomide and Dexamethasone then 2 weeks off on just double the dose of Thalidomide. As I live far away from my parents I can only visit once a month but getting info is tough. They tell me that the Myeloma hasn’t been staged? That they don’t stage Myeloma. The only info I could get was my mother said that after her first round of Chemo her paraprotein was down from 2000 to 112 but that seems impossible – the initial figure seems impossibly high. When I ask them about any detail they are both vague and seem to not remember readings or even what they were told at diagnosis. I am going to stay with them soon but I feel so in the dark and constantly worried about her. She is so thin and frail and talks of endless exhaustion. Could her paraprotein have been up to 2000, that sounds very serious!

    #137556

    paulapurple
    Participant

    They are right, Myeloma is rarely staged as it manifests differently in all of us. There is an international staging system but doctors don’t often use it. http://www.cancerresearchuk.org/about-cancer/myeloma/stages

    I’m no expert but I don’t think her paraprotein level would be that high, it sounds to me that she may have Light Chain Myeloma.  I have this; numbers of Free light chains are often in the thousands, and I don’t really have much paraprotein. My light chains on diagnosis were around 2600. Myeloma is very complicated and full of science so I’m not surprised they don’t really understand it. I’m 58 (quite young to have this) and have my head around it all but I’ve had to do a lot of reading and have lots of discussions with my consultant, especially as mine is not straightforward.

    Your mum can ask for a print out of her blood results or get the consultant to write them down. I suggest you order the Patient Diary from Myeloma UK. There is a section in the diary for blood results and she could ask the consultant or nurse to fill in the results for her. There is also a table in that section which tells you what normal results are so you can compare them with your own results. I find this very useful. There are also sections in the diary where your mum can record how she feels on a daily basis, which is useful to take to appointments and her treatments where they will ask her how she has been before she has the next treatment.

    If you haven’t already downloaded the Info Pack for newly diagnosed patients from Myeloma UK then this is also a good place to start when it comes to understanding the complexities of Myeloma; I was given it upon diagnosis. It explains about Light Chain Myeloma and paraprotein. There is also an Info guide on VTD.

    Ask if she has had a FISH test, this will also highlight if she has any chromosomal differences, which can affect treatment. The Genetics and Myeloma Info guide explains all about this.

    I belong to the Myeloma UK Facebook page too. You can join it as a carer or patient; it’s invaluable for getting info and people’s experiences fast.

    Good luck with it all.

    Paula

    #137558

    pin45
    Participant

    Thank you Paula, so much. This is really helpful. I am the kind of person that asks many questions and will read and want to know everything whereas they are both very much of the opinion that the doctors will treat her and they must trust in the treatment plan. The first two weeks of VTD she was so poorly (she is 72) it was a shock to see her especially as she only weighs 36kg. The last two weeks she has been off the Velcade and just on Thalidomide and sounds much better when I speak to her twice a day. She starts her second round of Velcade next week. I am going to stay with her for a few days soon so shall get hold of a dairy as you have suggested. Thank you again for responding.

    #137580

    paulapurple
    Participant

    Glad I could be of help. Good luck my love.

    Paula

    #137668

    lenny
    Participant

    Hi,

    My name is Linda and I have recently been diagnosed with myeloma.

    I had never heard of this before.

    Like pin45 I am so confused about everything and to be honest don’t understand any of it.

    My family are also confused and constantly asking me why I am not receiving treatment.

    I was not given any literature by my GP or my consultant until last Weds at my 3rd consultants appointment when I asked why I couldn’t have treatment to prevent the myeloma becoming active. My consultant then gave me some info regarding the three stages of myeloma informing me Ideas stage 2. He also said the treatment would make me very sick and told me to make the most of my life while I was still fit and healthy.

    I have also now taken your advice Peter and sent for an information pack.

    Thank you both sorry for rabbiting on.

    So confused and still in shock ?

    Linda.

     

     

    #137676

    gala
    Participant

    Hi, Linda

    It sounds like you have been diagnosed with what is called “smoldering myeloma”. It means that your myeloma is not yet symptomatic. It is true that this stage is usually not treated, as there is no evidence that starting treatment at this stage extends overall or progression-free survival. Treatment, however, can reduce your quality of life. The advantage of being diagnosed at this early stage is that you will be monitored closely and it would allow the doctors to start treatment as soon as necessary and prevent the disease causing serious damage to your bones, kidneys, etc. Myeloma is currently not curable, but it is treatable. This means it is important to plan treatment keeping in mind future relapses. There are many good drugs available now to keep myeloma at bay. However, eventually a drug may stop working for you and a new treatment may be required. The strategy is then to prolong the periods when your MM will respond to a drug. Logically, starting treatment when you become symptomatic leaves more drug options for the future. I hope it makes sense.

    #137756

    lenny
    Participant

    Thank you Gala for your kind response.

    You are right mine is smouldering myeloma and apparently stage 2 as my consultant informed me there are three stages to myeloma.  I know I am luckier than most people as I don’t experience symptoms right now but my consultant thinks myeloma will become active in a couple of years approximately.  I have been spending a lot of time recently trying to understand this disease but the more informed I become the greater the fear becomes as I try to come to terms with what is to come. You see I don’t know which is worse active myeloma or this waiting. Thank you again for taking the time to respond to me. Linda

    #137810

    noeyedeer
    Participant

    Hi Linda,

    My husband had MGUS, an earlier stage to smouldering, for 6 years, then became classed as smouldering for 2 years before now needing to begin treatment 2 months ago. He had/has no symptoms other than finding paraprotein in blood. The watch and wait of this condition can be hard to live with, try to live as normally as possible, as your consultant has said. It is a very individual disease and it may be a longtime before you need treatment. Hope you can get peace of mind and enjoy life.

    Julie

    #137915

    lenny
    Participant

    Thank you Julie

    for taking the time to respond to me.

    I hope your husband responds well to the treatment and makes a good recovery.

    You are right about getting on with life I am still working full time and carrying on the way I always have. Myself and my husband are also going on holiday in June with some of our family.

    When I read about other people and there experiences with this disease I feel nothing but respect and admiration as you are all so strong and positive whereas I have been so negative at times.

    I have accepted that I have this disease and I will do my best to prevent it from becoming active but I must also be prepared for the worse reality is my lambda light chain is extremely high 1866 and PP 12.

    Good luck to you and your husband and please keep me informed as to his progress I really hope it all goes well for him. Linda.

    #137945

    docmike
    Participant

    Hi Linda,
    Welcome .My name is michael ( was originally on the forum as Docmike).I am retired consultant physician/gastroenterologist and as it happens i am just recovering from my second stem cell transplant and my paraprotein is zero for the first time in ten years.
    But i had smouldering myeloma for six years and help set up the specific thread for smoulderers/mgus on this discussion forum in which I have written extensively om my experience not least reviewing the medical literature on smouldering myeloma .The cutting edge treatments/strategys are reviewed and are available in the usa albeit in trials, with europe slightly behind but the uk is 5 years behind due to NICE rationing therapy . In that regard there is a trend to consider treating high risk smoulderers earlier in trials .One of the criteria of high risk is a free light chain ratio over a hundred ;if your lambda is 1866 and your kappa is less than 18 you would fit that criteria .I hope you have had a MRI in any case?
    I apologise if I have increased your fears but I know those fears well but you ve joined this forum to learn more because your fears feed on uncertainty . There is a lot more to discuss but thats enough at one sitting .But ask away .
    Best wishes Michael

    #138038

    lenny
    Participant

    Hi Michael,
    Thank you for your kind welcome and thank you for taking the time to speak to me.
    Please forgive me for taking this long to respond to you. The truth is my mood sank
    for a few weeks and I just couldn’t face speaking about myeloma for a while anyway.
    However I’m fine now and that cloud has lifted.
    You mentioned treatment for high risk sgmouldering which I am, I’m presuming this is trials if so I would like to know more. And if this is available here in u.k. When I asked my consultant about treatment he advised it would not benefit me at this time as the treatment was aggressive and would affect my quality of life. My latest blood test showed my kappa had increase slightly from 5.49 to 6.73mg/L. lambda 1246.2mg/L serum paraprotein 9.32g/L. I’M somewhat confused with these results as I just don’t know if there good or not as it looks as though my lambda and paraprotein have decreased.
    You see Michael I am still very confused about myeloma. I haven’t had an MRI but I have had full body x-ray and CT scan which showed small lesion in top of my left arm.
    I’m very happy for you it would appear the stem cell treatment worked for you and this also gives me hope I also hope your recovery continues and you remain in good health. Thank you again and please forgive my ignorance. Linda.

Viewing 11 posts - 1 through 11 (of 11 total)

You must be logged in to reply to this topic.