[natdarke1Participant]

Hi Scott,

I am pleased to hear that your light chains have gone down a bit- that’s good news. My mums have continued to rise unfortunately so her consultant has now talked about treatment and she will be starting VCD and then potentially another clinical trial or SCT although first SCT was particularly gruelling so we shall see what she decides to do. Its a lot to process as she had been treatment free since 2015. I am going to be attending the Myeloma meeting in Edinburgh in June so hoping to learn more then from experts who will be there.

Continued good luck and best wishes to you,
Natalie

[natdarke1Participant]

Hi

My mum has light chain multiple myeloma and had a SCT in 2015. She has recently been told her light chains have increased. They seem to be increasing by about 10-13 per month, now sitting at 60 which I know is low, however, the consultant convinced the myeloma is active again. Its all very worrying and uncertain. She has now had biopsy and scan which both came back negative- which I know is a good thing. I just cant help be angry that after having a SCT she’s only really had 2 and half years without it being active again. Its so comforting reading everyone’s stories on here plus learning different information that I previously didn’t know.

Natalie

[natdarke1Participant]

Hi Paul,

My mum has light chain MM and been on curcumin

For about 3 months now. We get it from Holland and Barrett

natalie

[natdarke1Participant]

Hi Scott,

i didn’t know that re light chains, that’s good to know for when we go back again to the hospital as mum has had a bad cough too so wonder if that could be a reason?! Let me know how you get on….

natalie

[natdarke1Participant]

Hi Tahlia,

how is your mum now? My mum was diagnosed just before Christmas 2014. She had a lot of symptoms that had been ignored by GP but it was still a big shock… Especially as none of us had heard of myeloma before! I found this website so useful… I also signed up to do a 10k in the January 2015, to raise money for myeloma. This helped us all have something positive to focus on, especially my mum. Mum underwent a clinical trial followed by SCT, which were both really successful. We just got told yesterday they think MM might be active again, so back down to earth with a bang and no doubt yet more treatment ahead… Just try your best to go to most appointments with your mum, that helps me, and her. Also, just try your best to remain positive and strong… Trust me, I know how tough that is!!

take care x

[natdarke1Participant]

Hi Scott,

my mum has light chain MM and underwent chemotherapy followed by SCT in September 2015. We just found out she has fractured shoulder blade and subtly raised light chains (34). Consultant said they would have ignored increased light chains if it wasn’t for fracture so awaiting CT scan and biopsy. If anyone has any advice regarding relapse that would be good?! She was only 2 and half years post SCT and we all expected MM would behave for a lot longer as she had such a good response to treatment first time round…

your light chains don’t sound too high scott from what I know but if you have any other symptoms, worth checking with consultant?!

sorry it’s a vague reply, myeloma is so complex and different for every individual

good luck!!

 

 

[natdarke1Participant]

That’s it! She’s got this raging high temp but seems slightly more lucid than last night! Wish I could sleep next to her as I find night times the hardest, I don’t want to leave her! They do have accommodation for relatives but its normally booked quite quickly by parents of children who are in. We are an hours drive from hospital. I am hoping she doesn’t remember the last couple of days with her being so poorly!! Glad your doing so much now Ann x

[natdarke1Participant]

Hi Chris and Ann,

thanks so much for your replies, both of which have given me comfort! She’s just been diagnosed today with an infection so on the antibiotics straight away! I know what you mean about telling people every detail and raising anxiety as one size doesn’t fit all and everyone different…. Think I was just at a low eb this morning and desperate for some common ground as you will know having myeloma can be quite lonely especially as none of my friends ad ever heard of it nor understand it. I really appreciate your comforting words and Ann thas a great idea about a journal I should start one on her behalf while she is too weak!x

[natdarke1Participant]

My mum has light chain myeloma and is in the process of the SCT. This is day 8 since cells were transplanted and she’s quite poorly, very weak, unable to eat, has had quite bad sickness and yesterday the diarrhoea started. We were told this could happen but hard to fully prepare yourself. I am hoping and praying once the GCSF injections start tomorrow we may begin to see an improvement. She’s extremely exhausted and is pretty much sleeping all the time for the last 2 days. I have read a lot of stories on SCT but not many seem to go into minute detail with regards to how patients are day by day. It would be good to hear from others who have been similar? Can’t see her being discharged anytime soon the way she is at present.

Many thanks and good luck to everyone x

[natdarke1Participant]

Hi Karen,

good luck with it…. I feel the same as you only still waiting for mums cells to get harvested!! It’s been a lot of back and forth this week but hopefully they will get harvested today. It’s the first hurdle we have faced but still frustrating none the less!! Then we need to wait for a date for transplant….

Natalie

[natdarke1Participant]

Hi Mervyn,

thanks for that. It’s a very long, hard journey to take isn’t it?! At the moment she is 6 days into having the strong chemo…. Cell harvesting is set for tomorrow. Here’s hoping that they collect enough!!! Everyone’s stories are similar but different. Mum was diagnosed with myeloma just before Christmas 2014 and up until then I had never heard of it. I discovered this web site and its been a god send. How are you doing now you have been discharged?

Natalie

[natdarke1Participant]

Hi mervyn good luck with it!! My mum is due to have transplant end August and is getting cells harvested on Monday. She is a tough cookie and is doing ok with the strong chemo she has been receiving this week, managing to eat, albeit small portions!!

Hopefully it will all go well!!

Natalie

[Author]

Posts