New to the group.

Hi Pippinmacbippin and a warm welcome to this corner of the Community although I am sorry to see you joining us.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of living with an incurable blood cancer.

There are a few active members at the moment so let’s look for them to pick up on your post. Do click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups, the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi sweetie

I just wanted to say hello and welcome.

My partner has been receiving treatment similar to you and I have some idea of what you've been through.

It was lovely to read that you are now in complete remission. 

Keep in touch. The people on here are amazing and knowledgeable & incredibly supportive.

Much love

Penny xxx

Hi Mike thanks for your reply I’ve looked for the maggies centre but the nearest one is an hour away I’m afraid. We do have a macmillian centre though so I’ll check that out. Thanks Val 

Hi Penny thanks for your reply Val 

Yes do check the local Macmillan Centre..... Where I stay in the Highlands of Scotland it's not unusual for people to do a 2 -3 hrs round trip drive to come to our Maggie's in Inverness - that's an indication as to how much people appreciate the support available.

Hello Pipinmacbippin, wow, what a name, so sorry you have myeloma,  but over the moon that you are in remission. 

I only heard the "R" word about 3 months ago, when I did, I could have fallen through the floor.

Keep being positive, no bad days, just good days and better days.

If you can, be positive for other people, the people who love and support you and others with this horrible thing.

I wish you a long and healthy life filled with happiness.

As I say to my daughters snd grandchildren " Onwards and upwards "

Very best wishes,

Hiya

I m new to the group and still awaiting final diagnosis from a bone biopsy but wondered about your treatment . My haemotologist is saying I will have stem cell treatment ? Is that what you have had or only chemo  ?

Myrasgirl xxx 

Hello Myrasgirl, I had an auntie Myra once, lovely lady.

I was diagnosed with Multiple Myeloma after a bone biopsy. My haematologist and I decided on a very rigorous regime of chemotherapy,  which lasted for 6 months.

It was brutal and I did not enjoy it, but...but, it worked for me and I am in remission over two years later and feel really good. 

I am in touch with others who have gone through both chemo and stem cell treatment and can hopefully reassure you that due to the fantastic advances that have been made with treatment for Myeloma,  things are looking better than ever. Don't be afraid to ask questions about everything to do with your condition. 

I am 72, male and have children and grandchildren, so every day I wake up is a bonus.

As I say to everyone,  " I have good days and better days" there are no bad days.

Onwards and upwards lovely girl, keep thinking positively. 

My love and best wishes to you and yours xxx

Thankyou so much for your inspiring and timely reply x My mum was Myra ....also a lovely lady x

I am trying very hard to keep an open mind until I get an actual definitive diagnosis .

I am also a breast cancer patient and have a rare appendical cancer on watch and wait so am used to the scanning and waiting and praying.

I have MGUS and my bloods have always been borderline but I have suffered a compression fracture to my spine which has bought me to hospital and further tests to determine its origin

Its heartening to hear that there are options for treatment out there and that thiings are improving if I am diagnosed

I m so pleased to hear you are in remission and living life to the full

I am 59 and have 4 beautiful grandchildren so I have to ensure I am well !!

I will let you know how things progress and thankyou again for taking time to reply 

Gill (Myrasgirl )

God bless, keep smiling , lots of love and good wishes xxx