Myeloma

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Question about getting diagnosed

always scared1234
Posted by

i apologize for posting here, as I haven’t been officially diagnosed with MM, but I fear a diagnosis is coming.  I wanted to discuss this with people that have first-hand knowledge, versus just google.  

Here’s where I’m at...

had a visit to the ER a few weeks ago for lower abdominal pain.  Also pain in the right hip bone area. 

CT scan was done, as well as blood work.  Found cysts on the kidneys and blood in urine.  I also had high levels of protein in my blood work, but nothing was said regarding that.

followed up with PCP, but it took 3 weeks to get an appt.  I don’t think she fully understood what I meant about having pain in my right rib area.  I’ve had it in the left before and it’s gone away with chiropractic sessions.  Now I have it on my right ribs.  Initially worry about liver but now I have found that hip and rib pain can be MM.  

Is the high levels of protein in the blood the same as the protein found in MM patients? Would a CT have shown MM or does it need to be an MRI or PET scan? My hip and rib pain comes and goes.  The rib pain is in random spots, but the hip pain is more in the same spot.  Seems like I feel it more when sitting or lying down versus with movement.  The rib pain is more on the side and feels like it’s on top of the rib.  

I am 39 years old, female.  Should this be something I pursue with my doctor? I have an appointment with the kidney doctor later this week, but I don’t feel like the cysts are the issues.  I read that MM can cause kidney failure too.  However, I have had the cysts for a few years now, I just wasn’t told about them.  I have also had blood in my urine several times in the past few years too.  

I am very worried and upset my doctor didn’t pursue this and I’m upset with myself for not making it more clear where I was having pains at.  

Thank you for taking the time to read this.  I am so sorry for all who have been diagnosed with this cancer and I appreciate any insight you may be willing to provide.  Thank you so much...

greg777
Posted by

Hi Alwaysscared,

Welcome to this corner of the forum and I’m really sorry to read about your current health concerns. I would start off by saying I’m not a medical expert, so your best bet is definitely to pursue this with the medical professionals, but here are some things I’ve learned about myeloma over the past 5 years:

- myeloma doesn’t follow a typical pattern, it affects people in lots of different ways so it’s really hard to say there is a one size fits all and the symptoms can be really general

- I have polycystic kidney disease and it is unconnected to the myeloma, so the cysts you mention might be nothing to do with myeloma

- the bone pain tends to be in a permanent place, because effectively the myeloma cells are attacking the bone in that area, so if your pain has stopped in one area, that’s a good sign it might not be myeloma

- any scan would normally spot bone lesions - I think they are pretty easy to spot regardless of the scan. But I suppose no one scan is 100% fool proof.

- proteins, I’m not sure to be honest. Certain types of myeloma, like mine, don’t show proteins at all in the blood - hopefully someone with a bit more insight on this will be along shortly

It’s really difficult to know with any certainty what might be going on for you at the moment. I would definitely push the medical teams for answers, that would definitely be the best route. I’m really hoping it is not myeloma and something altogether more straight forward to get you back to good health.

Hope this helps?

Greg

always scared1234
Posted by

Thank you very much for such a fast reply.  The rib pain definitely comes and goes in random areas, but the hip pain does not.  It’s normally pretty much just the hip bone.  I definitely notice it more when I’m thinking about it.  

Do you think the kidney doctor I’m seeing could follow up on this or should I go back to my primary care doctor?

greg777
Posted by

My gut feeling is that the GP is the best route, they can run specific blood tests for myeloma. My experience of specialist doctors is they know their specific areas incredibly well, but are not so great at the overall picture. Even though kidney problems and myeloma can be linked, you’re not 100% sure of what your dealing with here. I’d be tempted to push both of them to be honest, but the GP will probably be in a better place to get you some overall answers I think?

Greg

sennaman
Posted by

Hi, sorry to hear of your news and I also have not officially been diagnosed with MM yet as when I went to hospital last week to get my results from the ct and bone scan which didn't show up anything alarming but was then told the blood samples showed up a level to suggest MM of which I must admit I haven't heard before, but sadly do now, more tests required they say to either confirm MM or not.This all started about 6 months ago when my rib broke or snapped while out walking my dogs, small dogs that don't really pull you but the pain was dreadful, hospital scan for some reason didn't show the rib was broken, maybe they were looking elsewhere, however when I mentioned I hadn't fallen over then a whole range of scans were required and lots of blood samples taken and was told about the MM they think I may have, I was quite shocked with this news and wait for further tests soon, i also mentioned that some days are better than others and getting quite tired now and also mentioned that for sometime my heel is quite painful most days even more painful resting rather than standing and they said it could also be a possible link.

Hope you have a peaceful day  

always scared1234
Posted by

Thank you for your reply and I’m sorry to hear that MM might be on the table for you, too.  If you don’t mind me asking, what initial blood work showed up badly for you? I had blood work done at the ER but I don’t think they ran any of the blood tests for MM. but my WBC and RBC was fine. No anemia. 

always scared1234
Posted by

Thanks! I’m just worried my primary care provider will think I’m crazy.  I’ve suffered from anxiety, specifically health anxiety for awhile now. And I’m worried she will think it’s all for nothing.  I know she would order the tests, but probably with some exasperation.  It took me 2 weeks just to get a follow up with her after finding out about my kidney cysts.  

I do have a chiropractor I trust.  I wonder if I could have him order the blood tests? He might even be willing to do some xrays of my hip.  I really feel like myeloma must be what is causing my symptoms.   I thing else really fit.  Everybody kept telling me it was probably by kidney cysts but I knew it wasn’t because they haven’t ever bothered me.  

Thank you for the useful information. 

always scared1234
Posted by

Also, I see that you are younger, like I am.  Do you feel like that hampered getting a diagnosis for you? Or did you get diagnosed fairly quickly?

greg777
Posted by

It’s your call ultimately, I would do whatever feels right for you. Personally, I would go down the GP route if only because they’ll be able to pull in the right specialisms as needs be. Health anxiety is really tough, so I am definitely feeling for you. I’m hoping your GP will have the empathy to understand how important this is to you. Ultimately, a GP doesn’t want an undiagnosed cancer on their conscience either, so I hope they’ll run the necessary tests and not make you feel bad about it.

I’m really hoping this is not something serious, but I’m also hoping you can get some answers soon to put your mind at rest.

Greg

sennaman
Posted by

the consultant said to me that one of the blood samples showed a level or traces of MM and I will put in touch with haematologist dept for more tests and the consultant said that he couldn't answer questions relating to MM as it wasn't his field of knowledge which was ok by me.

always scared1234
Posted by

Thanks.  I really hope it’s nothing serious, either.  I have read that having multiple infections can be a sign of MM.  Did you experience that? Other than a stuffy nose and some occasional sinus pressure, I haven’t had any infections that I know of.  Does that normally come before or after the bone pain? I have been around so many people with the flu and other virus and haven’t caught those, yet.  Would that be the type of infections it’s describing? Catching something that just won’t go away? I haven’t had any fevers that I know of, either.  

always scared1234
Posted by

I don’t believe I had any in-depth blood tests ran on me. 

always scared1234
Posted by

I put a message into my doctor asking if I needed to be worried about the protein test being elevated along with the pains I’ve been feeling.  It’s so hard to know which pains are real and which ones are from anxiety.  Maybe both?! I just feel like this diagnoses makes sense, where so many of the other issues they were looking at didn’t. I asked if she was concerned and if she felt like it would be a good idea to re-do the protein test and then see if I needed additional labs.  We will see what she says. I need something to be done though.  I have been consumed with worry for the entire weekend and I haven’t been able to eat or sleep.  Every time I fall asleep, I wake up shaking and with hip bone pain! I can’t sleep for more than 10-15 min at a time. I don’t want to hear bad news, but I’ve pretty much accepted the fact it is going to be bad and be what I think it is, and I’m ready to have some answers.  

Were any of your labs off when you were diagnosed? My calcium levels were ok the last time they were checked.  I read the bone pains are from the bones being destroyed and leaking calcium out.  So would I have higher levels of calcium if my bone pain was from MM? 

Also, did any of you work while you were doing chemo? I work with young kids so I’m not sure it’s possible. I figured it wasn’t an option while waiting for stem cell transplant recovery.  

Thanks for all the conversations.  They really do make me feel less alone! 

always scared1234
Posted by

When do you get to see the hematologist and get more testing done?

how are you handling the wait? I’m really struggling. 

greg777
Posted by

Hi Alwaysscared,

Sorry for the delay in replying, I’ve been working a long day (I hope this of itself gives you some hope that you can live normally 5 years on from a diagnosis of myeloma).

I’m glad you’ve had some progress with the doctors. In terms of blood work, I can’t really remember the specifics but do remember my RBC and albumin levels were abnormal. My advice now though would be to try to switch all the myeloma thoughts off until you have some answers. Myeloma tends to be a relatively slow growing cancer and the staging doesn’t really affect things like in other cancers, so a couple of weeks wait won’t do you any harm at all in the grand scheme of things. What’s more important now is trying to put a lid on the anxiety. Very hard to do I know, but I reckon it’s the best plan. Waking up every 10-15 mins is no good for you and the worrying will likely make you ill in of itself. In these times, I normally turn to distraction - focusing on something else completely different to get my mind off tests, results, what if’s, etc. Do you have a hobby you can immerse yourself in? Maybe meet with friends? Even household chores, they’ve all done the trick for me in the past.

I’m really hoping you a peaceful night tonight and hopefully a fresh head tomorrow morning with some of the anxiety put back into the corners of your mind.

Greg