11years from diagnosis

This topic contains 31 replies, has 7 voices, and was last updated by  Mikejanulewicz 3 years, 8 months ago.

Viewing 15 posts - 16 through 30 (of 32 total)
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  • #137428

    peony
    Participant

    Hi Mike

    We are going to the doctors on Friday afternoon. As doctor won’t listen to me Hannah is determined to get him to listen to her and get me sent for mri. She said if an animal comes in with pain and bloods are clear the next step Is imaging to rule things out.

    I’ll let you know how we get on

    sheena

    #137441

    Mikejanulewicz
    Participant

    Hi Sheena

    I have my fingers and toes crossed for you for tomorrow.

    Please pass a message to your daughter.
    If the gp is hesitant to refer for any imaging, then ask the gp how they can be sure the myeloma hasn’t turned into a “non-secretory” form of myeloma, which would mean the paraprotein level would not show an elevated level therefore symptoms , examination, and imaging become the diagnostic criteria. This should help them request an mri or ct, I hope they would request this as an urgent request as well.

    Pease let us know how things go.

    Take care.

    Mike

    #137443

    gala
    Participant

    Sheena

    Myeloma can become non-secretory over time, meaning that its markers may not be present in the blood. In my sister’s case, when she had her blood taken following renewed bone pain, the M-gradient was at zero. However, MRI showed new lesions in several locations, including soft tissue involvement. She is now undergoing an aggressive chemo regimen to tackle this. Non-secretory myeloma requires bone marrow biopsy and MRI/PET imaging to monitor. In myeloma patients any bone pain needs to be thoroughly investigated. I hope you got the care you needed.

    #137451

    Mikejanulewicz
    Participant

    Hi Gala

    That’s exactly what I was trying to say, but youve put it a 1000 times better than me!!

    Take care everyone.

    Mike

    #137457

    peony
    Participant

    Hi all,

    Not long back from gp and after a bit of an argument I’m now being referred to hospital and hopefully mri. My gp seemed to think I had sciatica but I’m so glad Hannah was there to tell him straight that there was so symptoms for that. He then started to read my notes and he apologised.

    Thank you for getting in touch and I’ll keep you updated on how I get on.

    Sheena

    #137460

    gala
    Participant

    Mike, I wrote my comment and then saw that you had already commented within the same lines 🙂 But maybe it’s a good thing and would draw attention to this issue, that is often overlooked by professionals who have not seen many cases of MM. So, we as patients have to advocate for ourselves and our loved ones.

    Sheena, I am glad that this is what you and your daughter did – you knew what to ask for and you expressed your needs clearly. Even if it turn out to be unrelated to myeloma at lest you would have checked. It is important to be vigilant and thorough with a tricky illness like this.

    #137559

    peony
    Participant

    Hi,

    Just waiting on an appointment from hospital for an MRI. I’m going through all the emotions I went through last time, thinking there’s something wrong to its all in my imagination. I can get days when I have little pain, they are the days when I think its not back, to terrible pain in my lower back when I walk and its those days I find very difficult but I’m trying to stay positive for my family.

    Sheena

    #137560

    Mikejanulewicz
    Participant

    Hi Sheena

    Waiting and not knowing are our two enemies!
    I hope the wait is very short to get some definitive answers. I hope your gp has sorted pain relief for you, normally they are very good at that.

    My fingers and toes are crossed for you.

    I’ve got my monthly appointment this Wednesday for results and more chemo. Usually means a couple of sleepless nights before the appointment.

    Take care

    Mike

    #137572

    peony
    Participant

    Hi Mike,

    I know what you mean about the sleepless nights before a checkup it’s always a worry. I hope all goes well for you on Wednesday.

    Good luck

    Sheena.

     

    #137715

    peony
    Participant

    Hi,

    just an update on what’s been happening with me. I eventually had my appointment with haematologist today and I found out that when I was diagnosed in 2000 my bloods were clear it was only when I had mri that it showed something wrong. So I’m now waiting for an mri and it should be within the next two weeks. He has said my pain could just be wear and tear with all the treatment I’ve had. Fingers crossed that’s all it is.

    Sheena

    #137717

    Mikejanulewicz
    Participant

    Hi Sheena
    Yep, fingers crossed for a good mri result.
    At least you’re with the expert and someone who has skill with myeloma.
    I hope that they will keep seeing you for reviews rather than sending you back to the gp again.

    Hope the wait isn’t too stressful.

    Kind regards
    Mike

    #137758

    jenny0
    Participant

    Dear Nick and all who live well with myeloma

    I feel a lot more hopeful for my dad after reading these stories . Although he is 72 , he was a strong builder up till the point of diagnosis this New Year’s Day just gone! He should be starting cycle 5 next week of VTD if the doc agrees as he’s having a week off as wasn’t too good , legs very very weak . The plan is SCT come aug/sept so your story has def given me inspiration and I will relay it to my dad as he’s not on this site .

    Thanks , keep up the good work and staying healthy

    Jennifer x

    #137909

    jenny0
    Participant

    Hello Mike ,

    can I say thanks for the hopeful information , 11 years post treatment is amazing ! . Can I ask how was your symptoms before the sct took place ? I’m only asking as my dad who is 73 who was a fit strong builder of a guy before this illness hit him hard this January . The team have put him forward for sct due to his previous health being good but right now he is so so weak in his legs with pain at night he can hardly walk 50 meters they say due to treatment .  He’s still having induction treatment , reduced dose now as had 4 cycles of VTD.  How are you doing now ?

    #137911

    nickb
    Participant

    Hi Jenny sorry missed your post of  28 04 my last review 9 05 pp 4.6 all bloods ok been stable like this last couple of years. Like You’re dad I worked in heavy industry diagnosed age 54 , on my consultants reccomendation I stayed off work a total of 18 months . I was lucky I still had reasonable mobility and had very few issues throughout my treatment. Unfortunately this disease affects everyone differently, all I can say is tell you’re dad to keep a positive attitude and don’t give in . Regards Nick

    #137912

    jenny0
    Participant

    Nick,

    Thank you for getting back to me, glad to hear your dong well and your bloods and pp at 4.4 is good and stable.  I know this illness seems to effect everybody differently , I guess his age is against him regardless of his previous health.  He is being patient and all we keep saying is give it more time . The doctor did say prob a year from diagnosis and hopefully it will all be behind him ! ………at least for a while eh !

    All the best to you and thanks again for your response . It’s great communicating with others and getting an idea of how it can be etc .

    Jennifer xx

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