Just started first cycle of chemotherapy for Myeloma last week . Just reaching out for tips , advice , chats , friendship. Having VTD combination,then probable stem cell transplant
I just wanted to welcome you to Cancer Chat. I hope your first chemotherapy cycle for myeloma went well and that you are not suffering any significant side effects. You might be interested in reading more about myeloma treatment on this page including stem cell transplant and our general section on chemotherapy might also be useful to you to help you prepare for the next cycles.
If at any point you want to talk to our nurses about anything, don't hesitate to give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.
I hope that you will also hear from our members who have had VTD chemotherapy before and have gone through myeloma treatment and that they will be along shortly to share their stories and experiences with you.
In the meantime, I wanted to wish you the very best of luck for your treatment. I hope it all goes well for you!
It's me again! I just wanted to let you know that I have just welcomed a member, Di, [@dibow76] , who is also soon starting treatment for myeloma so I thought you two might want to chat or exchange notes on how it is all going. I hope your treatment is going well. You can read Di's story here.
I am new to this forum and was told you are being treated for Myeloma and might like to talk to me. I've not spoken to anyone else who has it so would be a first and nice. Feel quite alone and would love to talk to someone who understands what's it like. Nurses and doctors are great but be nice to have common ground with someone. Be lovely to talk to you if you would like too. Speak soon
Great to hear from you . My name is Karen and am delighted to have someone to talk to like yourself. I understand what you mean about feeling alone . People think they know how you feel but they don't
with best intentions . Hope to hear from you soon . Karen
My name is Di, I'm 45 year old single mum with a nearly 12 year old daughter. Live in Ipswich. Was diagnosed in May 2019 after being in extreme agony from the xmas before. What was actually happening was the Myeloma was eating the bones and I was fracturing them seemed weekly. I ended up 7 in my back 2 in my neck and too many to count in my ribs. Then it got worse and they collapsed and now have terrible mobility lost 6" in height! Had to learn to walk again. Now can get about on one crutch but very frustrating and a daily struggle. I've had Iv chemo then wtntvtsbket based which seemed to work it brought my light chains down from 4000+ to 27!! Then the last 3 blood tests they say it's going up so they saying this tablet has stopped working. So I have a top consultant ringing on Wednesday to discuss new medication. I'm scared to have to go back in to hospital with the whole COVID thing and scared about having a Pick Line put in.
How has the evil disease effected you? What are you having? How long have you been living with this? Any other complications/problems.
I have been monitored for 13 years . Started with MGUS
on community monitoring every 6 months and occasional
clinic . Then it moved to Smouldering multiple myeloma . Then 18 months ago was told I needed to start chemotherapy but only just started my first cycle on March 9 th this year. Now nearly completed second cycle. It is a treatment of Velcade injection at hospital, thalidomide and dexamethasone steroid . I also inject daily against blood clots . Am sorry to hear you have a lot of pain and trouble moving . Maybe ask the consultant for some more treatment that could help you . There are things they can give you that mend your bones . Have heard of Zometa infusion if that's helps .
