[paulapurpleParticipant]

I expect that they will want to do a Bone Marrow Biopsy either when you go in on 22nd or very soon afterwards; in my hospital I saw the consultant in the morning and they did the biopsy in the afternoon. The biopsy will give them a clearer picture of exactly what’s going on. They may also do PET scans, MRI or X rays to see what’s going on bone wise.

I think Bence Jones proteins are free light chains so this may indicate that you have Light Chain Myeloma; I have this too. They will give you regular blood tests to see if the free light chains are increasing, if they are then they will probably start treatment. Treatment is usually Chemo (not necessarily intravenous, can be by injection or tablets only) weekly for about six cycles. Each cycle is usually three or four weeks.  You will also have to take a range of other tablets, which will be explained to you. This is called Initial Treatment and is often followed by a Stem Cell Transplant. I have had two lots of Initial Treatment which haven’t worked for me as I appear to have a type that is quite resistant, but I’m the unusual one, most people respond well to Initial Treatment. I am still hoping to get to Stem Cell Transplant eventually as this gives the best chance of remission.

Tell your consultant about your holiday. If they start treatment they may be able to work around it but only they will know what’s best. It can also be difficult to get travel insurance with Myeloma unless the Myeloma is in remission.

I suggest you look at these links on the Myeloma UK site as it will help you to understand what’s likely; you can then formulate some questions for your consultant before you go on 22nd.

This one will tell you about Initial Treatment:

Initial treatment

This one should answer all your questions about Myeloma and explain the ‘science’!

Infopack for newly diagnosed patients

The Myeloma UK helpline are very good so if you are still struggling with this then give them a ring next week. You will also find great support on the UK Myeloma Support Group Facebook page; I find this very helpful for getting a quick response from others with Myeloma.

Good Luck.

Paula

Good luck

 

[paulapurpleParticipant]

I can’t help you I’m afraid but have you tried posting on the UK Myeloma Support group Facebook page? There are some very knowledgeable people on there and you will get some swift answers I am sure.

[paulapurpleParticipant]

Look on the Myeloma UK website for the info on Stem Cell transplant; it will clearly set out what’s involved. If you haven’t read the booklet for new diagnosed people on the site either then I can recommend this as it will fill you in with all the science! I found it much easier to understand too when I was in possession of all the facts. You will have some initial treatment before the Stem Cell transplant; if you now know what this is you will be able to read up about this on the site too. I have Light chain myeloma and started off on VTD (velcade, thalidomide and dexamethesone), which didn’t work for me so now on CTD  (cyclophosphamide, thalidomide and dexamethesone) and waiting to see if that has worked, before I cn think about stem cell transplant. I was diagnosed in March but I also had Non~Hodgkin’s Lymphoma, which they wanted to treat first so I didn’t start treatment for Myeloma until the end of May.

Best of luck. Can I suggest you also join the UK Myeloma Support Group Facebook page if you haven’t done already, as there are some very knowledgeable people on there and you will get answers much quicker.

Paula

 

[paulapurpleParticipant]

I’m like your husband. I started on Velcade which didn’t work, then they added in the Thalidomide which has sent my peripheral neuropathy through the roof, plus it doesn’t seem to have made any difference. My consultant is worried about the neuropathy and lack of response so I think he’s going to change the drugs again next week. The aim is to get to SCT too but at the moment that seems to get further and further away. Sometimes you don’t know whether you are coming or going.

[paulapurpleParticipant]

I really feel for you when you aren’t able to be there all the time. I am lucky in that one of my daughters lives nearby and is very supportive. My husband doesn’t deal with it well as underneath it all I think he doesn’t want to face what this thing really is, especially as at the moment I am not responding to treatment. Perhaps men find it harder to cope with when we just get on with it!

Usually you are assigned a key nurse that you can liaise with. I have a cancer specialist nurse whom I see as well as my consultant so If I need to talk about anything I can ask to see them. Might be worth asking if this is the case.

Steroids are funny things! They make me irritable and snappy sometimes. I take large doses twice a week and when they start wearing off I get a crash and feel terrible (withdrawal symptoms) so they are not the easiest thing to cope with.

If you want to garner other people’s views I suggest you join the UK Myeloma Support group Facebook page as you will get swift responses from both other carers and people with Myeloma. I have found it very useful.

[paulapurpleParticipant]

I’d have a look at the information section on the Myeloma UK site https://www.myeloma.org.uk/information/

which should help you to compile a list of questions. I would want to know what type of Myeloma she has and whether she has any bone lesions (MRI should show this). Next big question is the treatment plan. I assume she also had a bone marrow biopsy? Ask what this revealed if you don’t know this info yet.

[paulapurpleParticipant]

It can be a lengthy process until they decide what treatment is appropriate then it does pick up speed and also you get used to the time table. I sometimes find it frustrating if something goes wrong that I still have to wait for the appointment with the consultant before anything changes. However when my first lot of treatment wasn’t working they did see me swiftly and changeed it immediately.

[paulapurpleParticipant]

Your biopsy will tell you for sure where you are at. Fingers crossed it isn’t. xx

[paulapurpleParticipant]

Thank you for your lovely comments Avril, I really appreciate that. I have always been a glass half full type of person! I have had a really good response to my blog and I enjoy writing it; it’s the academic in me that misses the writing.

I will be having a stem cell transplant hopefully in the New Year and when my hair grows back I hope it will be white (a lot of it is already) then, when it’s long enough I can dye it all sorts of pastel shades!

Hope you SCT goes OK; it may well be better this time remember!

[paulapurpleParticipant]

I’m afraid I can’t really help you. Ring the Myeloma UK info line or post on the UK Myeloma Support Group Facebook page and I’m sure you will get a much better response.

[paulapurpleParticipant]

Welcome Pauline. Myeloma is a complicated condition that certainly takes a while to get your head around. Hopefully between us we can help you find your way through the maze that is Myeloma! I know I found the Myeloma UK website really useful for all the information booklets it contains that you can download.

I find writing a blog really helps me to explore things and my friends find it useful to read as they can find out what’s going on in my life without having to ask me all the time. If you would like to read it here’s the link.

mymyeloma.wordpress.com

Good luck on the journey you are facing.

Paula

[paulapurpleParticipant]

Sorry you are having a rough time of it. MM will often cause raised calcium levels of calcium in the blood. It can occur as a result of bone disease in which calcium is released into the blood stream when the affected bone is broken down.

You may find the newly diagnosed pack from Myeloma Uk really useful to explain things, I did. You can down load it from the site. Bone disease doesn’t always show up on X rays until its quite advanced I think.

Unfortunately it is often missed by GPs.

Now she’s in the right place I am sure they will sort it our swiftly and get her on the right treatment.

xx

[Author]

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