Multiple myeloma

Hello Gardenergran,

I’m Steph and I work in the Community Team here at Macmillan. Although I’m sorry that circumstances have brought you here, I hope you find the site a safe place of kindness and support. 

I’m sorry to hear about your diagnosis and I hope I can help you find the right support from the Community and from Macmillan. 

If you feel comfortable doing so, you could ask your question to others on the Community to see how their experience compares. We regularly see the benefit of members talking to others in similar circumstances, so I hope you can find some comfort on the site.

I’d encourage you to join a group and start a discussion so that members can offer you support.  You can find the friendly myeloma group here. If that's not quite what you're looking for, you can search for groups relevant to you here and click ‘join this group’ in the banner or in group options.

Once you're a member of a group, you can click ‘+new’ (or + on a mobile) to start a new discussion. There’s some help available here if you get stuck, or message us back and we’ll do our best to support you further.

If you’d prefer to ask your question to a nurse at Macmillan, you could post in our Ask a Nurse sessions, or contact our Support Line teams. They’re available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Gardenergran If you'd like us to move your post into the myeloma group, or into 'Ask a Nurse', we can do that for you. Please just reply to this post and let us know.

We know that starting treatment for cancer isn't easy. To help you prepare, we have information about the different types of treatment, what to expect, the options available to you and how to cope. You can find this on the main Macmillan website here.

I hope this is helpful, but do remember that our Support Line teams are also here for you. They’re available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

Please do let us know if you have any questions, or need further help using the site. I hope the Community helps to show you that you are not alone and there is lots of support available for you. 

Kindest Regards,

Hi Gardenergran   I was diagnosed last May with Myeloma. I spent 13 weeks in hospital and shortly after my diagnosis I had radiotherapy five days in a row for my thoracic spine. It really was fine nothing I could complain about. It took around 20 minutes total and I was a bit tired afterwards but travelling an hour each way in an ambulance probably contributed to the tiredness. My Chemotherapy regime was Velcade and Steroids and really…. I coped ok with the Chemo. No sickness a bit fatigued and some pins and needles in my feet at night but I was given medication to help with that. NOW!! out of all that my worst experiences were the steroids. They really didn’t like me and  I despised them!!,  I was “wired up “ I couldn’t sleep and had the jitters so much I could hardly text. After 3 weeks they reduced the dosage it was so bad. I have since had my stem cell harvest ( that was ok too and done over three days…… just hard to keep arms straight during the collection for several hours but I am fidgety anyway.  I am now waiting for my stem cell transplant. I know everyone is different but that was my experience to date……… Honestly not too bad.  I wish you well xx

Thankyou so much for your reply I am not so bothered about the radiotherapy I have what they referred to as a plasmacytoma on my sternum and the radiotherapy is to try to relieve the pain I'm so pleased you say its not too bad ,I'm having Velcade cyclophosphamide & a  steroid I'm not really looking forward to it I just hope I cope like you have I will try to stay positive No one's mentioned stem cell but I think that's coz I'm 70 yrs old I wish you well in your journey 

Hi Gardengran I forgot….. I had one extra blast of radiotherapy to my left rib for pain relief… same it was ok. Seventy is young!!! If you feel your fit for a transplant and your family agree you push it girl!!

I will go for it if offered I'm off tomorrow for the first blast of radiotherapy then every day this week so fingers crossed x

You’ll be grand!! I’ll think of you… this time next week It will be over xxx  I’ll keep in touch 

Thankyou for your support x

I have now moved this post into the myeloma forum.

My mum is 69 and they offered it her. She is due SCT in 6 weeks. You should raise the question to understand why options are or are not in consideration for you x

I completed my autologous Stem Cell transplant about 9months ago with almost negligible side effects.. Before then I was given a lot of information books containing side effects etc. Knowing how powerful my mind is, I read all the information and left out the side effects. 
This made me report acutely how I was feeling & not reporting what I was told I will feel.

it worked for me to just put my mind on my recovery.

Now I can play golf.

I hope it works for you too.