[sandie58Participant]

Hi everyone
My last posting was about my mum who had early MM diagnosed at end February. Her next checkup up is in June and I'm hoping her protein levels etc., will be the same as they didn't want to start any treatment in Feb. She remains really well, with just normal arthritis pain, and as I've said before it's hard to even believe she has Myeloma. Although docs. seem to think there is no genetic link, as I was getting lots of bone pain I decided to ask my doc to do some blood tests. The results came back saying my levels were a bit 'grey'. I asked my doc if the letter quoted a protein level and she said not, but as I was going to see the Consultant with my mum at the end of Feb, I asked her to send haematology the report. At my mums appointment I spoke with the Consultant and he said that my levels were a bit higher than normal and was going to arrange for full body Myeloma x-rays. This is being done on the 15th April, and my appointment with him is on the 19th. Not sure the radiologist will have written a report by then and I've still got to have some more blood tests after the 19th. It's all worked out a bit wrong, I guess as I should have normally just been given an appointment in the first instance and then x-rays and blood tests would have followed. I had to keep chasing the hospital to see what they were doing and as usual appointments managed to mess things up. My initial report was meant to have been sent in December and we're now half way through April! At my last doctors appointment she showed me the letter from the hospital which said my levels were 3.9. I know this is low compared to everyone else out there, but my worry is that this is the start. My mum started with a level of around 9-11 a couple of years ago, and this was only picked up when she ended up in hospital with a bad water infection which then turned into pneumonia. It's now around 24. If it hadn't been for my bone pain and my mum being diagnosed, I would never even have heard of Myeloma. I was just thinking that I had arthritis everywhere as I had already been diagnosed with it in several areas of my body. At the moment I am suffering with bad lower jaw pain and last week I had a dental full scan of my jaw as the hospital told me that the Myeloma scans only covered the skull midways up. I don't really understand this as in the last Myeloma pamphlet I received it indicated towards the lower jaw as a place that could have 10% of lesions. I know I'm probably being neurotic, and as my mum said as my level is only 3.9 she doubts that I would have any problems on my bones anyway. Is there anyone out there who started with levels around 3.9 and has this now gone on to develop Myeloma? I will probably feel better when I've had all my next lot of results back, and I guess they'll just keep an eye on me.
I would be grateful if anyone could let me know if they have experienced anything similar.
Thanks.
Sandie

[eveParticipant]

Hi Sandie

Sorry cannot help with pp levels.all different,can say the x-ray the whole head,It is all put on the computer and will be there for your appointment.I know this as my partner has lesions on skull.It shows up better on ordinary x-ray.The mri scan shows better on small bones,they do not x-ray hands or feet.

Hope this gives you some peace of mind,eve

[sandie58Participant]

Thanks Eve
I don't know if hospitals vary. I spoke with the radiologist last week and actually took the Myeloma book which pointed to lower jaw, and she said that they only x-rayed from mid skull upwards and therefore told me to go ahead with the full dental scan for the lower jaw. I know the Consultant will be able to look at the x-rays, it's just whether or not the radiologist will have had a chance to comment. I've never seen an x-ray with lesions so perhaps the Consultant won't need a report and will be able to see for himself!
Best
Sandie

[PerkymiteParticipant]

My understanding is that most Oncologists/Haematologists would have enough experience to recognise "lesions" in an x-ray, certainly my consultant did not wait for a report he had my x-rays up on his screen straight away and gave me the ?good news? there and then, which was my hips were clear and it was 17 years of Army wear and tear giving me the Jip every night!!!

Kindest regards

David

[JetParticipant]

Hi Sandie

From my own experience, the radiologist's report will not be so necessary for diagnosing MM or not because of lytic lesions – they are fairly obvious. If you have a look on Google images, you will see. So I'm sure the haematologist will be able to tell immediately if it's MM or not.

However, what the radiologist was able to comment on was the likelihood of further risk of fractures, etc.

Hopefully and if they're all doing their jobs well, the haematologist may well have the report in time for your appointment.

Good luck!
Jet

[sandie58Participant]

Thanks Jet
Sorry I haven't been on here for a while. The pain in the jaw ended up being a chronic dental abscess and I ended up having the tooth out. However it's been two weeks and two lots of antibiotics and I still have some pain in the jaw. I did have my appointment with the haematologist and he told me the results of the lower jaw x-ray so I knew I didn't have any lesions which was good news of course. I'd only had my full body scan a few days before and he didn't have the results of them so I go back to see him on the 24th and he will have my bloods and x-rays. He said that although the protein levels are low he would be able to tell if I was at high or low risk of developing Myeloma in the future. I have had so much to deal with my jaw pain that I haven't even been thinking about anything else so I guess that has done me a favour. Before I know it I will be seeing him again and will have more info. Then on the 3rd June my mum has her appointment with him and I am just hoping that her protein levels etc., haven't increased. She is still very well and looks great and it's hard to believe she has anything wrong with her.
I'm going to have a look at somje google images now!
Best wishes.
Sandie

[sandie58Participant]

Hi David
I think it was unfortunate that the day I went they had been having problems with their computer system and he couldn't access the full body x-rays. The dental x-ray was done on another day and he did have the report for that one.
I guess I'll know soon enough. I do have osteo arthritis in various places on my body and my pains may just be due to that. I've just bought a Pilates machine from QVC and I'm going to have a go with that to see if I can improve my mobility etc., I'm only 58 so really should be fitter than I am.
Best wishes.
Sandie

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