[Blue Libran]

Re: Length of time from diagnosis to start of treatment?

by Blue Libran on Fri Mar 31, 2017 7:18 am

Hi all,

I'm wishing I'd come to you guys sooner. I'm going to take your advice and make a pest of myself by going to the hospital today. It's at the end of my road, so that's an easy thing to do. I'm also going to ask for copies of my tests, as I've only ever been given my red and white blood cell results.

I've spoken to my GP and because we have hospital trusts in the UK, my consultants also cover the other hospital side in my trust. She's suggested talking to them again about the speed and urgency of treatment and lack of communication.

I've read loads of useful information and feel well informed about multiple myeloma. The big issue is getting my consultants to get a move on. I was calling the clinic yesterday and this morning and no one is even answering the phones.

As they say on Game of Thrones, "Winter is coming," and as I've already had to give up my job, I can make myself worse than any white walker!

[Blue Libran]

Re: Length of time from diagnosis to start of treatment?

by Blue Libran on Fri Apr 07, 2017 4:32 pm

Thanks again everyone

I saw the head of the team yesterday, and my mother and I made it very clear that we were un­happy with the speed of progress, regardless of the diagnosis.

Unfortunately the news was not great. It's not either or. Multiple myeloma is confirmed, but I may also have myelodysplastic syndromes (MDS). I'm still quite shocked and didn't even know you could have more than one cancer at one time. This is also going to complicate my treatment options.

I'm having final blood tests on Monday and another bone marrow biopsy on Wednesday to stage the MDS. My mind is all over the shop right now.

Simone

[Christa's Mom]

Re: Length of time from diagnosis to start of treatment?

by Christa's Mom on Wed Apr 12, 2017 1:15 pm

Hi Blue Libran,

I'm so sorry for all of your troubles. If you've read through some of the posts on the Beacon, you know that getting diagnosed and starting treatment is one of the worst times for myeloma patients. The sheer number of tests you have to get makes the process more drawn out than one would hope!

In general, myeloma is not one of those cancer's where you need to start treatment immediately. When EJ was diagnosed, he was undergoing emergency surgery. He couldn't start treatment until he had healed a bit, and even then his treatment had to be delayed because he wasn't healing quite as well as they hoped. In the end, I think it was 3+ months from the initial diagnosis until he started treatment.

It's very important that they get to the bottom of everything with you before they start treatment. But they should also communicate what is happening with you much better. Make sure you get copies of all of your tests. The folks here can help you understand what they mean.

Good luck!

Lyn