Multiple Myeloma

Hi Nuala 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 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 aged 43 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is different I do appreciate the challenges of this journey rather well but not the specifics of your condition...... although I do know Stem Cell Transplant (SCT) very well as I have had 2 Allo (donour) SCT...... The first in June 2014 with the second in Oct 2015 and I remain in remission to this day, turning 67 last Nov and living a great life.

We do actually have a dedicated Stem cell transplant support group where people from different blood cancer support each other on the journey.

There are a few members in this group have been through SCT so let's see if they pick up on your post.

You can look through the older threads by clicking on 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.

Always around to chat and help out.

Hi Mike, lovely to hear from you & thank you for your reply. This is my first time on any forum so I’m very much a beginner, hopefully I’ll be learning how to find my way around! 
Kind regards

Nuala

 Nuala it takes a little time to learn how to navigate around but the one thing you can always do it click on your community name and this takes you to your ‘own’ area of the site where you can see the groups you have joined and the posts you have on the site.

I am around to help out at any time.

Hi Nuala

im new here too , I was diagnosed in oct 21 with MM I’m 54 year old carpenter after tumours in my spine broke my L5 , I had 5 rounds of VTD before my autologous stem cell transplant in Bart’s London and I know I was sceptical but taking lenolidomide maintenance at home 21 days a month( 10 mg maintenance tablet that prolongs remission ) and seem to be doing fine .

Its all very scary I know but treatment has really moved on , I don’t know what more to say to be honest I’m not great at this but stay positive , I believe a positive state of mind is the best medicine .

Woodman 

Hi Nuala. I was diagnosed with MM in September 22 completely out of the blue . It's been a rollercoaster of a ride so far. I had 4 rounds of chemo and this week I had my stem cells collected ready for the SCT.   The only side effect I have \ had a numb hands and feet, Having a positive mindset has really helped me through. I wish you well on your journey 

Hi Woodman, I’ve only just seen your post, thank you for your positive words, I’m managing to stay positive most of the time! I was referred to A&E by my gp, I’d been to a pain clinic, chiropractor & physio in an effort to help myself get on top of my pains, then by the time I saw the physio I was struggling to walk & my hips were going numb. She said to tell my doctors surgery it was an emergency and that was the start of my journey! I had an MRI & CT scan after 13 hours in A&E, then was admitted onto a ward. My femur broke a few days later so I had surgery to remove lesions on my spine & to fix my leg so I’ve been recuperating from that! I had 6 weeks in hospital, home on lots of medication, into my local hospital weekly for chemo, radiation therapy and now an IV for bone strengthening medicine. I do feel very fortunate to have access to the latest drugs. I feel well but I am fretting about the upcoming hospital stay for my transplant if I’m honest.

Kind regards

Nuala

Hi sunshine 1. Thank you so much for your good wishes, I hope your stem cell transplant goes well, I am feeling quite apprehensive about mine if I’m honest but I spent 6 weeks in hospital last October/November so I should be able to cope with 3 weeks. All the best, would be good to hear from you again.

kind regards

Nuala

Hi Nuala 

I was really worried about the transplant as you say you are but tbh it wasn’t as bad as I was expecting , I was really sick and other things lol but the hospital St Bart’s London we’re amazing with meds for the sickness , go for the anti sickness injections  if you don’t mind injections it goes into your stomach and is a lot more effective than the anti sickness tablet and once the sickness is kept under control you’ll feel much better .

Drugs are all administered through a line they’ll put in your are called a PIC again I know this sounds scary but it doesn’t hurt at all and stops any more cannulas etc all drips go thru this 

Stay positive I’m always a glass half full person anyway but the positivity has 100% helped , look you’ve responded well to the chemo or a transplant wouldn’t be available , so see your glass is half full aswell .

stay positive 

Woodman 

Hi Woodman, thank you for your post, I understand about the pic and I’ll definitely take your advice to have anti sickness injections - my fear is feeling/being sick but my haematologist has said anti nausea meds are freely offered so vomiting is well controlled! 

All the best

Nuala

Hi Nuala 

No problem , you’ll be offered both tablet and injection take them both it’s no harm , you’ll be fine the anti sickness is really good now , I was surprised how well mine was controlled and you don’t feel sick straight away , but you’ll be given the meds straight after your cells go back in which builds up in you and does fend off the feeling of wanting or being sick .

if your room in hospital is anything like mine it’ll have a fridge put in it things that you can eat when your not feeling up to hot meals , I did , fruit was good , oranges grapes juicy things , soft drinks , lucozade , high calorie stuff but easy to eat you won’t want to eat hot food , this will get you thru you can’t lose too much weight you’ll be weighed and a nutritional will visit you .

In week 2 of being in hospital I went into a room with another guy who was about 10 days behind me in his SCT so I shared my goodies with him as he was struggling as hospital food is rubbish as you’ll know and your food preferences really do change after the SCT .

Strange fact when the cells come out from the liquid nitrogen and start defrosting the room smells of sweetcorn it’s weird , I used to love chicken and sweetcorn soup before , I can’t stand the smell or taste anymore of sweetcorn , the 2 transplant nurses told me non of them eat it anymore either lol .

I had my transplant on 21st of June last year and I’m doing really good  after it just stay positive and when you do feel down just think each step is a bit closer to feeling better , honest the SCT is fine just don’t let the time in hospital after it get you down each day gets easier .

Stay strong for the people around you 

Woodman