Just been diagnosed

Hi Bearlet and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey you are on.

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 rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4) so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specific treatment you are on.

Let's look for some of the group members to pick up on your post. There actually have been a few new members join recently so why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts.

Have a look at them and as always you can hit reply to any post and see if the member is still using the community.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provide cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear. 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

Always around to help more or just to chat.

Hi. I too have just been diagnosed  with myeloma.  Good luck on your treatment journey .

Hi, I'm finding it all a bit worrying at the moment as my consultant only told me in the phone on Friday and not seeing her until next Friday for chemo details etc  Hope yours goes well too.

Hi Bearlet, I am sorry you are left wondering what to expect   . I have Myeloma and started treatment in September but at the end of the first cycle got covid which paused the treatment for a couple of weeks . Just started the 2nd cycle last week .Like you I didn't know what to expect really. For me there were alot of trips to the hospital,twice a week initially and many meds to take at home  . I'm finding some good days and some challenging days where fatigue kicks in and and emotions run high . Do you have the nane of a specialist nurse? I have found that these folk have been in valuable to me and don't think twice about contacting them. Mostly I have learned to listen to my own body and tell people close to me how I am feeling. 

I hope everything works out for you  and that you will feel more in control when you know what's involved with your treatment  Good luck .

Thank you hope all goes well for you

Hi Cakie,  I am just starting  my journey. I have just found out I have Myeloma  and  my consultant  has told me I will  be having 4 rounds of chemo followed  by a stem cell transplant.  

I am waiting first for a full ct scan and then treatment  can start. I am nervous  about what going to happen but I know at the end  it will be worth it.  Thanks for  sharing your journey  so far. Did you have many side effects?

Hope it all goes well for you too

Sunshine1

Hi Sunshine 1, good to make contact with you   I hope that the investigations go to plan and that you are able to start treatment soon  .To be honest no one would give me much information about side effects of treatment before I started ,only the fact it can effect people differently .For the first couple of weeks I kept a short diary which was  helpful as I found d my memory wasn't great but the notes did give me an Idea of how I could try to help myself with any side effects .

Fatigue continues to be a problem but I have learned to go with it and just rest when I need to . Emotionally I'm up and down like a yo yo and insomnia isnt nice but that's the steroids hitting me hard .

On a very positive note blood results show the treatment is working very well so I can put up with these inconveniences .

Most helpful advice someone gave me when I started treatment was go with the flow and how you feel and speak to those close to you and medical staff about how you are feeling ,this is a journey that is better shared than walked alone .

Best wishes to you ,take care