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.

Support group near me

JagMag
Posted by

Hi, my name is Tim, I’m 54, hoping to find a support group in the NW of Coventry.

I had a hospital appointment last week where they told me I have multiple myeloma. Biopsy is scheduled for 20 Aug, waiting for CT appointment, then back to hospital on 10 Sept for the results.

Maybe wishful thinking and probably a question many have asked but, is a diagnosis from a blood test conclusive or does the biopsy give that?

Anyway, probably enough for my first message

regards

Tim

Bodach
Posted by

Hi Tim 

A very warm welcome to the online community and I'm really sorry that you've had to join us.

I'm not a member of this group and I'm going to leave most of your questions to the knowledgeable members who will be able to answer them.

But what I would say is that you are free to ask as many questions as your want the members will willingly share their experiences with you.

The reason I've joined in is to answer your questions on local support groups and there is two ways you can find out the information.

www.macmillan.org.uk/informationcentres

Pop into one of the above centres that can be found in most hospitals with a cancer unit

The other way is to pop you post code into the link below and this will come up will listings of support available from both Macmillan and non Macmillan support groups

Macmillans Support down your way

I hope this answers one of your questions and I'm sure you have a few replies to your other questions very shortly.

However should you not get some other replies, which is unlikely, you can ask your question on the blood test on our Ask a nurse page and one of the nurses will answer you normally within 2 days and like everyone else no question will be considered to be irrelevant.

Ian

By clicking on any of the green text above will open up new pages for you.

With a Stma Care and Management Certificate 

My Groups ● St●ma Support ● Bowel ● Carers ● Anal ● Family & Friends ● Bereavement ● Diagnosed at a Young Age ● Parents of Young Children ● New to the Community

You can call The Macmillan Support line on 0808 808 0000 every day 8am to 8pm

What is a Community Champion?

 How to update your PROFILE

The Bodach is LIVING WITH A ST● MA

greg777
Posted by

Hi Tim,

A very warm welcome to the myeloma corner of the forum although I’m very sorry for the reason you had to join. I’m Greg, I’m the champion for myeloma and please feel free to ask any questions you have about the specific disease, we’re a small but friendly group on here.

My fellow Champion Ian has directed you to some links which will hopefully be useful to you (thanks Ian). As it relates specifically to myeloma, the biopsy will definitely act as a conclusive test. The blood test results will show things that are indicative of myeloma, but the biopsy will act to confirm that diagnosis. 

Do you know yet what form of myeloma is suspected? Do you have a raised paraprotein or abnormal light chains? Have they given you any indication as to what the treatment pathway might look like?

The first few weeks can be very difficult as you are going through a period of shock, so please be kind to yourself. But please also feel free to use this as a safe space to ask questions, share updates or just vent. There are many people here who have been or are going through similar things to help.

Greg

JagMag
Posted by

Thanks to both of you for your quick response.

I've only had the results of the first blood test so fat, which was done through the GP.  The lab found high levels of protein so ran the protein test too.  I had a second lot of bloods taken on 24 Jul, following a meeting with the Haematologist.  She did say the test showed no effect to kidney function but, didn't say anything about light chains, would that show up in the bloods or wee?

The biopsy is scheduled for 20 Aug, delayed due to having the kids for 2 weeks from the 4th (don't want to worry them before biopsy results).  They've not given any indication of what form of myeloma, next meeting with the Haematologist is 10 Sept so will know then together with the treatment.

Kids, one of each, both mid teens, not looking forward to telling them.  Got to think of activities to do with them, so that will take my mind off the situation for a bit.

Think someone's having a laugh at my expense, 41 I several heart attacks now this and, from what I've read so far, the myeloma and cardiac meds don't work too well with each other.

kind regards

Tim

greg777
Posted by

Hi Tim,

Really sorry to read about your heart problems too, it definitely sounds like you have had a really rough ride.

It sounds like a good plan to take some time out and take your mind off things. When it came to my kids, once we knew what we were dealing with, we decided to be honest with them. My kids were 8, 6 and 2 at the time, so their capacity to understand is likely to be quite a bit different to your children’s, but there are some excellent age appropriate books out there which help explain things when the time is right.

I am by no means a medical expert, but I’m sure your team will work out the best treatment plan for you. They steered me away from thalidomide because of the blood clotting risk (I presented with a large blood clot in my left leg), so I’m sure they’ll take your history into account when deciding the best treatment plan. As to the specific type of myeloma, if you had a large paraprotein it is likely to be the main form of myeloma - I’m sure they’d have told you about light chains if it was relevant. To a large extent, it doesn’t really affect the treatment plan anyway.

My last thing I’d say for now is to try and avoid Dr Google - there is a lot of out of date information out there, and really positive strides are being made with regards to myeloma - it’s definitely best to stick to reputable sites like this one, Myeloma UK, Myeloma Beacon.

Anyway, that’s probably enough for now. I hope you do manage to take your mind off things in the short term - distraction is good - and please do stay around to update us as and when you know more.

Greg