[myelomamumParticipant]

Hi gc,

Thank you for replying, it’s good to hear you are doing well. I was staged at a 1 by my consultant but have had a plasmacytoma on one vertabrae which needed 6 radiotherapy sessions and I also have bone damage to tops of my legs and sternum. It was a freak coughing episode that broke my L1 vertabrae which lead to my diagnosis which I believe was early as my paraprotein was just 14. I do have a lot of lower back pain but I put this down to my osteoarthritis. I am trying to eat healthy and lose a little weight but worry is making me want to eat and eat. I aim to eat a lot more fruit and veg and cut out as much sugar as possible after my transplant.

[myelomamumParticipant]

Thank you both for replying, I think its the fear of the unknown and Im hoping it isnt going to be as bad as I imagine. My 2 youngest children are 11 and 13 so I am hoping to be on the mend as quick as possible although I have pre warned them I will be in hospital 3-4 weeks. I have tried to keep a normal lifestyle for them and hope to carry on working full time up until the admission for transplant. My paraprotein at the last check was 2 , this was a month ago. I was tested again last week and get the results Monday, I am thinking it may have risen as had no treatment for a month. My hair is just past my shoulders so I am thinking of a shorter style , does everyone lose their hair ? I do have a wig in preparation. Once in remission after the transplant is there any diet recommendations or supplements you can take to help remission be as long as possible? X

[myelomamumParticipant]

Hi glenc,

Thank you so much for the reply , I hope i can get through it as smoothly as you.
I have been started on the steroids already and wow are they keeping me awake , last 2 nights 2-3 hr sleep and really achy legs.. I have bought some tonic water to help with legs and someone advised cbd oil to help with sleep. I have got my head around my diagnosis now and taking it a day at a time, I am happy the cycles are not starting before Christmas as i intend to tell my youngest children in January. Hoping to work right up to the Christie admission. Can i ask how many appointments you had there before admission, it’s a 50 min drive each way for me to get there that is why im asking. It’s good to hear you are doing well , are your paraprotein levels still at zero ? I was also told I wont need no more bone marrow biopsies or mri scans. although i do have one final one today as something as show up on my liver.. thanks again Sue x

[myelomamumParticipant]

Hi louise and dadfodil

Hope you are doing okay and getting used to the diagnosis.

Just wondering if you have started your treatment yet ? Mine is 6th january 2025 but i have started on steriods , wow they keep me awake all night with really achy legs .. it would be nice to keep in touch if our treatment cycles are running close together xx

[myelomamumParticipant]

Hi ald,

We still havent told our youngest children , i want to wait until after Christmas as i still havent started treatment , my older 2 seem to think nothing is wrong as i am carrying on as normal all be it a very achy back. I dont know how they will all be when i go missing for my stem cell transplant.. i am taking it a day at a time and trying to take in as much info as possible.

[myelomamumParticipant]

Hi,

I was diagnosed a month ago after 3 months of tests, i had a plasmacytoma which fractured a vertebrae but have a mri scan showed mm in tops of both legs and possibly my liver. I too am starting 3-4 induction therapy followed by a stem cell transplant. My paraprotein last month was 12 and bone marrow shows 8-10% plasma cells, i thought this to be quite low but my consultant wants to start the treatment. Im due to start in 2 weeks .. when do you start ? I am really nervous about side effects as my youngest 2 children are 13 and 10 so we have decided to tell them after Christmas xx

[myelomamumParticipant]

Thanks for getting back to me Chris , I will ring Myeloma UK once i get my treatment plan. Enjoy your time in Australia- Sue xx

[myelomamumParticipant]

Hi Rabbit

Many thanks for reply , good to hear your remission news , are PP levels low or zero ?

I dont see consultant until 22 Nov but i will share my treatment plan , I am a little nervous withe the wait as even though i have had radiotherapy my back is still achy, i worry for anymore fractures. I am continuing to work full time as it distracts my mind

[myelomamumParticipant]

Hi tony

It seems as if lenalidomitide is a really good drug , what are your levels now ? And is 3.5 remission consistent to others after a stem transplant ? Sorry for all the questions , i have so much to learn. Finally are all the treatment plans acsilable in all hospitals or do some only have access to certain ones ?

[myelomamumParticipant]

Many thanks Rabbit, you seem to have great knowledge of mm .. i am trying to get up to speed with this disease which has chosen me.

It had taken from July this year to get to this point and still awaiting a treatment plan, i do belive i have been diagnosed early but it still seems so long. Did you have a stem transplant ? How long have tou been in remission? Sue

[myelomamumParticipant]

Oh Chris reading your message as really reassured me , do you recall your paraprotein levels at the start of your journey? Although i seem to have a few deposits around my body, mine has stay at 12.1 for last 4 months. I am keen to start treatment and get on with it.Did you do anything else to try and help .. ie diet or supplements. What are you like now .. any pain or other mm symptoms.. Sue x

[myelomamumParticipant]

Thank you for the replies , it is helping so much… im interested in how others felt through the treatment and stem… still absorbing lots of information off this site which as become my bible .. i intent to write down some questions for my nurse who is calling later. Have you experienced deposits on the liver also ?

[myelomamumParticipant]

Hi David

Just a shocker isnt it – I had not even heard of Myeloma before this … i have had so many bad thoughts but slowly i am accepting the fight i have ahead of me , hoping o can continue to work through tge first part ofy treatment , my boss is very flexible and i can work from home. Loosing my hair ( not a vanity thing ) is the only sadness i feel as it will make my younger children think i am really poorly , they lost an uncle to leukaemia 2 years ago so the threat will be real to them. Otherwise I will continue to try and get stronger. I have not had recent covid or flu vaccines…would it be recommended that i did ? Finally , I read parprotein was quite high was your bone marrow result high too ? And do these levels mean anything regarding the treatment plan ? TIA Sue

[myelomamumParticipant]

Thank you Rabbit for taking the time to reply, the news was especially hard because on Wednesday i was told plasmacytoma only and watch and wait as all other levels good. Friday i had a call from a nurse to say my mri had been misread and deposits have been found so treatment must start.I go back to hospital in 3 weeks to get the treatment plan , for now nurse said take the weekend to think of any questions and then give her a call to discuss. Our youngest 2 children havent been told yet but will be after the next appointment. I am planning on trying to get as fit as i can before the transplant.

[myelomamumParticipant]

Thanks for replying Birder,

I am hoping i can stay strong throughout the treatment , i am scared of what is to come and how i will cope. I hope the new drug you mentioned works well for you

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