[swandogParticipant]

my mum is bone on bone on bone on left hip and was supposed to be having hip replacement on sat 24/3. She had pre op bloods on Friday 18/3 and they said she had raised neutrophils and anaemia. They asked for repeat tests and also urine. Now she has ibs and associated constipation/loose bowels and has had a couple of occasions of loss of appetite fir around a week. Other than that no illness just pain from the hip.

We had call from gp asking us if we could collect forms and take to hospital and have them done as they couldn’t do them for 3weeks. Did not give any indication what they were suspecting but one form requests myeloma screen. Urine didn’t give firm so had to take it to surgery but on dip did show infection but not told us what they are testing but again no clue what they are looking for. Some of the bloods are back so v.high b12 high ferritin hb 102 so borderline, rbc 3.52 when normal minimum 3.8. Platelets neutrophils wcc all normal GFR was >90ml/min on 18/3 but was 85ml/min today. CRP raised at 64. The mm screen isn’t back yet but my research suggests it’s almost a forgone conclusion. I am petrified, do you think there is any chance this is something else

[galaParticipant]

Hi Swandog

I m sorry to hear about your mum’s health troubles. As far as I understand, a definitive diagnosis of myeloma cannot be made from such general tests. One can suspect it, but specific tests need t be done, such as SPEP (<strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>Serum protein electrophoresis), <strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>Immunofixation electrophoresis (IFE; also called immunoelectrophoresis), <strong style=”background-image: initial; background-position: initial; background-size: initial; background-repeat: initial; background-attachment: initial; background-origin: initial; background-clip: initial; border: 0px; margin: 0px; padding: 0px; vertical-align: baseline; color: #3c3c3c; font-family: Arial, Helvetica, sans-serif; font-size: 15px;”>serum free light chain (FLC) assay. Sometimes also urine tests (again, for specific markers). This may be followed by bone marrow aspiration and/or biopsy and imaging to see any bone or oft tissue involvement.

What I am trying to say, it is too early in your mum’s case to categorically say one way or another. It must be a very difficult time with a lot of uncertainty for your family. I hope your mum get the right diagnosis soon and receives a treatment that would make her better.

[swandogParticipant]

Thankyou for your response, she has recieved her mm screen results no monoclonal band detected iGg 7.6 IGa 2.70 IGm 0.65. All within normal ranges but also I understand indicative of stage 1.  Hip op now cancelled, so face s possible cancer fight and be immobile and in constant pain!! I’m sure I’m not the only one that feels this but it’s the waiting and not knowing and frustration with our NHS. If they’d done the hip op when they were supposed to get levels were normal. That was jan this year. Now in march she’s gonna have to suffer.

[galaParticipant]

Sorry about the gibberish in my post. I think it was some weird technical glitch. In case you struggled to read it, here is what I wrote:

<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px;”>”One can suspect it, but specific tests need t be done, such as SPEP (Serum protein electrophoresis), Immunofixation electrophoresis (IFE; also called immunoelectrophoresis) and serum free light chain (FLC) assay. Sometimes also urine tests (again, for specific markers). This may be followed by bone marrow aspiration and/or biopsy and imaging to see any bone or oft tissue involvement.”</span>

Is your mum does not have an M-spike and her proteins are at normal ranges, what makes you think she is stage 1, or that it is MM at all?

There is such a notion as CRAB criteria, and at least one of those has to be present to start treatment for MM. They are: hyperCalcemia, Renal dysfunction, Anemia and Bone lesions. Your mum has anemia, but anemia can be caused by a variety of reasons. I believe more tests are need to confirm the diagnosis of myeloma and the stage of the disease (e.g. check renal function and see if bone lesions are present).

I know it is difficult to stay calm in this situation. I agree that the waiting times are now completely unacceptable and people suffer and their condition deteriorates often to dangerous levels. I feel very sorry for your mum. She did not have to suffer so much. I also do not understand why they would not operate. People with MM have surgery often. It is the nature of the disease to have bone issues and fractures, so spinal surgery is a common thing with MM patients. I hope they investigate and treat MM if necessary to bring it to a stable level when the surgery can go ahead. It is also possible that it is not MM.

Thinking of you and your mum.

[Author]

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