We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

My Dad

Teec84
Posted by

Hello everyone, I am here with regards my father, he was diagnosed with bowel cancer in January and thankfully it was got at an early stage and surgery has removed it all but on his CT scan he has Lytic lesions on both sides of his pelvis and a few small ones on his spine, the Haematologist he seen was unsure of it being Myeloma and has said that he will see him again once he recovers from his bowel surgery in 3 weeks, I should also add that my Dad has pain in his hip and his skin is very itchy with a large purple lesion on his calf, I was wondering if anyone would know what the Haematologists next steps may be? Thank you 

latchbrook
Posted by

Hi and welcome to the online community

I'm very sorry to hear that your dad has recently been diagnosed with bowel cancer and that he might also have myeloma.

I don't know what the haematologist's next steps will be but I'm replying to you so that your post will be bumped back to the top of the page where it will hopefully be seen by someone who can help you. You could also have a look at this information from Macmillan on diagnosing myeloma.

When you have a minute it would be useful if could pop something about your father's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

greg777
Posted by

Hi Teec,

Welcome to the forum, although I am really sorry to read about your father. In terms of next steps for myeloma, the hematologists will likely do some specialist blood tests and perhaps a bone marrow biopsy to confirm whether it is myeloma or not. They will be looking for certain markers in the blood which will tell them whether myeloma cells are present, and then the appropriate treatment will kick in after then.

I hope this helps in some way and very best wishes to you and your father.

Greg

Teec84
Posted by

Thanks for the reply, Dad had his appointment with haematologist yesterday and has been told that his protein levels in blood are abnormally high they were at level 10, I'm very new to this and dont understand very well what this number means, he has been told he his at risk of either Myeloma or Lymphoma and will be taken back in 3 months for bone marrow biopsy as with all that is going on now they do not want to bring him to hospital. Does this level of protein mean this is an early stage? Thanks again 

greg777
Posted by

Hi Teec,

Good to hear from you again. I am not a medical expert but I think they are referring to the paraprotein which is a signal that there are abnormal plasma cells in the blood and I think a reading above 5 is suspicious although I don’t think 10 is particularly high - it can go a lot higher. Also, the staging doesn’t matter so much in myeloma like it can do in other cancers so don’t worry about that too much. I’m sure the doctors have made a good risk assessment for your Dad to work out what is best for him right now, especially as blood cancer patients are particularly vulnerable to the Coronavirus. Treatments are developing all the time and so a 3 month wait should not have too much impact on your Dad, as patients can get to remission even when they have been very poorly when starting treatment. I imagine that it must be so hard to wait. I think the best you can do is try not to worry as much as you can, and have trust that the medical teams have done what is best for your Dad at this particular time. If your Dad worsens, either through bone pain, repeated infections or any other of the classic symptoms of myeloma, you can always contact the medical team for their advice and I’m sure they will continue to advise you and your Dad as to what remains best for him.

Hope this helps in some small way,

Greg

Will6
Posted by

Hello Teec. My husband has myeloma and so we have a bit of understanding about paraproteins.  The levels are always being checked and my hubby’s are now around 40 but for five months last year they were at zero. He has just started a new course of Chemo but there wasn’t a great rush to restart as our haematologist wanted to make sure hubby was comfortable before stating new treatment. We’ve gone through lots of ups and downs with treatments so if you think I can help you in any way please do ask. As Greg says trying to keep the worries at bay is important- not always easy but very important. Take care. 
June x