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Questions to ask haemotology consultant 1st visit

10 replies

123lookatme · 23/12/2017 14:38

Dsis has been told by GP blood tests show probable multiple myeloma. She has 1st visit to haemotology clinic to see consultant in a few days. She knows she will require further tests to see what stage it's at. What questions should she be asking? It's all so sudden and a shock and I know she isnt thinking straight so just wanted to dona list for her

OP posts:
Sofabitch · 23/12/2017 14:42

There is a great pack with advice here for those newly diagnosed.

www.myeloma.org.uk/information/i-am-newly-diagnosed/

Sofabitch · 23/12/2017 14:43

Also really importantly try to get onto a clinical trial. There is some great new treatments coming out.

iVampire · 23/12/2017 15:08

Posting just to keep you company, really.

I’m under haematology/oncology but my blood cancer is chronic myeloid leukaemia and I don’t know so much about myeloma. The page that sofabitch has linked looks really good,

I was diagnosed 48 hours after a blood test for something completely different in October. It’s a huge shock.

So finding out if her clinic has a specialist nurse readily available, who she can ring or email when she had questions or needs clarification on something.

She’ll probably need s bone marrow aspiration - these aren’t much fun because although they’ll give you oodles of local so you won’t feel the needle going it, it doesn’t deaden the cavity and you can feel that bit. But it doesn’t take long and if she’s had DC and learned breathing techniques for childbirth use them. Depending on what tests they run, it can take a couple over weeks to get results,

There will probably be more blood tests (functions of various organs) and possibly scans. I had a bone biopsy (done at same time as marrow aspiration - less painful!)

I didn’t see consultant until subsequent appt when all test info was in (first appt with senior specialist registrar) and I think that’s a fairly common way round,

Encourage her to ask what they expect to find, based on her symptoms and bloods do far, and what the treatment options are. Then ask what else might be found and if there are further options.

And this early bid, when you are waiting for a fuller diagnosis and the best treatment options can be the worst bit. When you have a plan, it gets easier because you kind and you just have to get on with it.

Flowers for you both

123lookatme · 25/12/2017 20:14

Thank you for the replies. Appt is this week so I'm doing a list of questions for her to ask. She seemed well today we did joint Christmas dinner and she didn't have back pain or a sore throat as previous. Her appt says to see Consultant XX at the haematology clinic and be expected to have a blood test. I'm sooooo hoping and praying it is early stages and we can treat to keep at bay. These are the questions...have I missed anything @iVampire @ Sofabitch

List how unwell you've felt eg. Back pain but go said water sample said it was a water infection. Sore throat, very tired, no appetite

Am I in the best place does this clinic specialise in what I have...should I move to the nearBy large hospital (this one she is going to is in a smallish town)

Painkillers - should I be taking any meds NOW when I'm in pain go told me to take paracetamol...also concerns about constipation ask about what u can take

What do you expect to find with further tests

What are my treatment options

Does this clinic have a specialist nurse I can contact if I need clarification on something or need to ask a question

Clinical trials - are there any that perhaps I could be involved with

OP posts:
MummyPenguin2 · 25/12/2017 20:48

Can I suggest you wait and see what the consultant says and indeed what the tests show. It is likely she will need a bone marrow biopsy and a skeletal survey (X-rays of all her bones) as well as more blood tests. Even if this is myeloma, it doesn't always need treatment straight away and some patients are just monitored (watch and wait/active monitoring). Myeloma is something people live with, usually for many years. See what the tests show, listen to the doctor and specialist nurse's recommendations, then think about whether there are any unanswered questions or points to be clarified.

123lookatme · 25/12/2017 20:53

Thanks Mummy yes I will give her the list but tell her exactly what you have suggested. The GP did blood tests as she had flu for a week and then had a rash on her body but some of the rash was purple spots plus she had backache but they said this was a water infection. When she went back week later for test results GP said it says there were paraproteins in her blood and it was most probable she had multiple myeloma said he would refer her and treatment would prob be chemo but would need bone marrow tests first. That's all we know

OP posts:
123lookatme · 27/12/2017 21:37

So strange events today. Dsis saw consultant who said the bloods taken via GP contained proteins but were 'in the middle'...what does that mean??? She wasnt sure.

She had more bloods taken today and sending her for mri and bone marrow next week then back to him for results. He then said on her file were results from a blood test she had in 2013 which showed abnormalities then but she said she was told all ok. She felt really well today ...no sore throat or swollen glands and no backache. In fact when I saw her she looked 10 timrs better thsn when I saw her last week

OP posts:
iVampire · 28/12/2017 06:33

Sorry - no idea what ‘in the middle’ means. She’ll either have to google, or ring the unit and see if there is someone who can talk her through it. Or it’ll just have to wait until next week.

I had bone marrow aspiration done on the day of my first appt (and started treatment). But I had a WBC count that was dangerously high, but I don’t know if my unit is typical in how it runs itself

iVampire · 28/12/2017 06:43

Oh, and for goodness sake, you need to ‘google responsibly’ (quoting from another thread with that phrase).

Stick to reputable sites (NHS and the major charities/associations only). The treatments for some blood cancers have been utterly transformed in recent years, but there’s still quite a lot of older info out there, which can be quite misleading about prognosis and best-practice treatment.

Lones80 · 05/01/2018 17:19

Sorry, I can't help you but I just wanted to empathise. My husband was diagnosed with CML just a few days before Christmas and it's been a hell of a shock. I hope she's doing okay and getting the information she needs to process it all. x

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