Hello

Hi Lulukk so sorry you are having such a horrible time. Sending you hugs and best wishes. I have crossed fingers for your results and treatment. x

Hi Lulukk 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 have been 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 specifics of you condition.

In the early days it’s all about understanding and once you get more information and talk with others the journey will get more understandable.

So let’s look for the group members to pick up on your post. There are a number of active group members at the moment so why not 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.

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

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 most are online at the moment….. 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.

Thank you  so lovely to be able to reach out on here x

Hi Lulukk  I was diagnosed with Myeloma in May 2020. I had the RADAR treatment prior to a stem cell transplant. I was on it for 10 months while I waited for the transplant and it was delayed due to Covid. I must say I tolerated it very well. The worst thing for me was the Dexamethasone ( steroids ) which made me very jittery and unable to sleep. Only other side affect was pins and needles in my feet at night but I got medication which helped that. I am now 15 months from the stem cell transplant and doing really well. I had a lot of complications following the transplant which now makes it unbelievable how good I am.Everyone has their own experiences though. Have the mentioned a Stem cell transplant to you?  I am happy to answer any questions on my experience.

Thank you for replying- sounds like you are doing great.

it’s really reassuring to hear from someone who has experience of the treatment.

yes I will have SCT- I’m being treated at Leicester and they have been great.

It’s all a bit of a shock, but I’m slowly getting used to the idea now.

Hello Lulukk  just wondering how you are doing?

Hi, I’m good. 
Starting chemo this Friday. Zometa tomorrow.

Glad it’s all happening now and I can just get on with it really.

Thank you for thinking of me x

Hello @ Lulukk  Good for you. I hope the Chemo has little effect on you as it had for me. How are your kids and husband coping? It will take a while for them to understand the whole process but I’m glad your on your way now. Stay strong and I’m here if you have any questions that I will try to answer.

Hello Mardan  I am so glad you are feeling so much better now. My husband is having a stem cell transplant in 4 weeks time. I am so worried about being able to visit him as I don’t drive and I’m going to have to try and organise lifts from different family members. He will be about an hour away each way away and to complicate matters even more I have 2 dogs to look after. I’m sure I would be able to cope so much easier if I were younger but I’m in my mid seventies and it all seems so overwhelming. Can you tell me if the visiting is one hour twice a day or more often. I’m thinking if it’s allowed for longer I could get the dogs in kennels and book a b&b. I would so love to be there for him all the time if allowed.

Hi Mardan,

So first treatment seems to have gone ok. No side effects yet, just a bit tired last night. I hope it continues like it did for you.

I will update you on my progress. Trying to sort out my teachers pension and life  insurance now, which is THE most stressful thing!