Hi everyone,
Thank you so much for all your responses,your all very kind and helpful. Mum still hasnt mde her decission and is concentrating at the moment on recovering from the SCT.She seems to be getting stronger each day and her mobility is greatly improved. She asks me for advice and i find it so hard to answer as i just dont know what advice to give. She has a bmb coming up in october and then they will need her decission.
I continue to research as much i can and keep asking the consultants and research nurse for help but i suppose they can only provide some advice.
I will keep you updated.
Hope my post finds you all well. Ive tried to read as many as i can tonight while i have a little time!!
Take care everyone and thank you.
Lots of love
nerys xxx
Hi Steph,
im so sorry to hear your dad has been diagnosed with Myeloma. Its such a horrible shock isnt it. Your dads story sounds exactly like mums, she was diagnosed 12 months ago after 3-4 months of teribble back pain and was rushed to hospital for radiotherapy after blood tests and an xray showed something was wrong. The mri showed a mass in the middle of her spine which had caused serious damage to the spinal cord. She was also otherwise fit and healthy and this came like a bolt from the blue! She was 49 at diagnosis. Mum also went on to the myeloma 11 trial. The pathway randomised for her was ctd, and yes there were terrible mood swings and irrational behaviour but this we think was side effects and also coming to terms with being disabled practically overnight!
12 months down the line and things are finlly looking up. Mum had her SCT in july and has been home a few weeks. She's getting stronger everyday and is now walking unaided much better.Hopefully after the next bone marrow biopsy she will be told she is in remission.
So although there is a long road ahead there is a little light at the end of the tunnel( for as long as posibble hopefully)
Times will be hard but never lose your hope. My mum was positive 90% of the time and I do believe her positive state of mind and determination was a huge help to her recovery.
I wish you all the luck in the world on your journey and if you want to ask anything im sure you will find the answers here. Everybody has always been very helpful and supportive (although im quite useless at posting!!)
Lots of love to you and your dad steph
Take care
Nerys xxx
That really is great news Sue and very encouraging. My mum is due to have her transplant in july so we are all extremely anxious now. Hearing things like this helps motivate us and makes us carry on!
Ner x
Hi angie,
Im not familiar with your journey unfortunately but just read your post and felt the need to reply! our myeloma nightmare hadnt started last july, my mum was diagnosed in september. Your post just brought a lump to my throat and i shed a few tears! im so glad to read that you now are starting to feel a little stronger, i am so sorry for your loss. I cant and dont want to imagine what you went through although your post did hit a nerve. I suppose its a cliche but time does help doesnt it. My mum is scheduled to have her transplanr next month and so we are all incredibly anxious, my mum is very strong and positive, i just wish i could be the same. its a scary time and there seems to be so much more to a SCT than we realised.
im glad to read that your in a good place now and hope that your dad and sister are ok too.
lots of love
ner xx
Hi all, soo sorry its been a while since I posted on here. Dont know why really, I guess its been a bumpy few months and just with everything hapoening I just didnt. Anyway! I hope my post finds you all well. I have had a read of a few of your messages. Rudd, you sound like youve had a rollercoaster few years with your mum, I hope things are ok and cross everything for you that you get good results from these lots of tests. Let us know if you can.
Well where are we at now! I now understand a little more than I did and realise that I posted incorrect numbers on here. My mums paraprotein levels actually started at 49 and after nearly 10 months of treatment they are down to near enough untraceable in blood tests which is amazing! So next step SCT! We've obviously had a lot of info now about the procedure and we are all feeling very anxious, it gives me some hope that so many of you had ansct and are enjoying good remission. The sct.is due to start in.july so we'll see how that goes hopefully it will get tge results everyone is praying for.
It would be lovely to hear from you all. I wish you all the best whichever part of this strange journey your on. Lots of love
Ner xxxxx
HI Dick,
So sorry to hear about your diagnosis. Im sure it hasnt sunk in yet, if it ever does!! My mum is also 49 and was diagnosed september 2012. She is currently on velcade and dex and is in the myelom x1 trial. She like you was very young to be diagnosed with MM but as i am quickly learning age means nothing to this disease!!
It must be quite daunting going through this treatment in a foreign country, but im sure your wife will be a great support and im sure you will pick up the language quickly living there. Ive lived abroad myself and found hearing it everyday definately makes it easier to learn.
What treatment are you on?
Theres plenty of info on here and a very helpful extended family so whenever you need anything there is bound to be somebody here who can point you in the right direction.
Take care dick and dont hesitate to get in touch.
Lots of love
Nerys xxx
Hi Jane,
Hope your well. I read on your post that your to start your treatment next week.I do hope it goes well for you and that your paraproteins come down. We're all ok at the moment thank you, things have been pretty steady for a while really. Mum was told on friday that she will have another 2 cycles of this treatment which takes us to the beginning of may. By then i think the hope is that the paraproteins will have come down low enough for the SCT.As mum is on the myeloma x1 trial they need the levels to come down as low as they can before doing the SCT as i have read on here of people having the SCT with higher levels than the 2.7 mum was at.(last time it was checked)
Do you know what your treatment plan is? is an SCT on the cards or is it a bit early to say?
Thanks for e-mailing. Look forward to hearing from you again.
Take care and good luck if we've not spoken before next week.
Lots of love and hugs
Nerys xxx
Hi Tom,
Nothing selfish about that!! Why shouldnt you want as much remission as possible! I hope you get it you deserve it!!:-D . Ive read loads of your posts on here and you seem to be a huge help to everyone.
Love nerys xxx
Hi Liz
thank you so much for your post. It sounds like you too have had a heck of a journey with myeloma. I have to say that your strength and positivity and obvious love for life gives me and im sure alot of people on here a lot of hope! Its fantastic that your in remission and able to enjoy life to the fullest despite the disabilities myeloma has left you with. I pass on all your messages to my mum and these give her hope too and some understanding of whats to come next. I do find she tends to ask me a lot of questions when what the consultant has said hasnt quite sunk in. Its hard sometimes to answer difficult questions (usually abut life expectancy) but we are trying not to focus on that and to focus more on getting to remission and then enjoying life drug free for as long as poss.
We have been told now that she will have another two cycles of chemo (velcade) and then possibly she will be ready for the sct. I do hope that is succesful.
Lovely to hear from you liz. Take care and keep enjoying life to the max! your amazing.
Love Nerys xxxx
HI everyone,
Wow thank you all for your replies! your all amazing and so kind to share your experiences. Although it is awful that there are so many people on this site im sure you'll agree its comforting to speak with people that understand!
There is no mention of an operation for now for my mum, the tumor has gone with the radiotherapy but has left damage to the spinal cord which is why she now relies on her wheelchair and crutches.However she has come on so much from where we were 6 months ago to now and im sure with the help of the amazing physios she will continue to strengthen her legs. she may need an operation in the future to repair the 2 crushed vertibrae but they have to prioritise treating the myeloma.
What are the team like at christies? Depending on when mum has her sct she may have to go to christies as the harvesting unit at our local hospital is currently closed. They are trying to have it re-opened but this may be months away in which case christies is the closest ( 2 hours away).
Its so nice to hear that some of you have reached remission and have remained that way for a while. hopefully this will be soon for mum too!!
cross fingers for all of you who are awaiting results soon, i look forward to hearing your news.
Stay well everybody. 😀
Love
nerys xxx
HI Andy,
Thank you so much for your reply. Your information was brilliant thank you and has answered the question i didnt understand!FRom what you say then 2.7 is quite low allready. Its such a shame that the disease attacked mums spine in that way and caused the compression because from what youve said the actual myeloma disease could be a lot worse. The immobility has been hard to deal with and we are still trying to come to terms with it.
Im so sorry to hear about your journey through MM, it sounds like youve had a really tough time too! Although i dont know an awful lot it does sound like your myeloma has been quite resistant. I hope this cycle of RCD can help. Can anybody be a donor or does it have to be a family member? My husband had a bone marrow transplant 6 years ago (for another condition) and was lucky enough that his brother was a match but if he hadnt they would have gone to a donor list, is that not posibble in your case? Thank you so much for your lovely wishes for my mum and everyday truly is a gift, its easy to lose sight of that when things are tough but I will try to remember that.
Take care of yourself Andy and good luck with the RCD.
Love
Ner xxx
Hi Jane,
Thank you too for your reply. Im sorry to hear that you have also just been diagnosed with Myeloma, the shock is awful isnt it. It must be good that your paraprotein levels are going down and fantastic that you have no damage to your bones at the moment, i hope it stays that way for you. The myeloma seemed to attack mums spine from the start although we obviously cant know how long she has had it.
The CTD worked well to bring mums levels down, i hope it can do the same for you. Please keep in touch when you can. I would love to hear how the treatment is going for you and if you have any questions i can answer from mums experience id be happy to. And if i cant there are so many helpful people on here and somebody always has the answer, its amazing.
Thanks again Jane, i look forward to hearing from you. Take care and good luck with the treatment.
love
ner xxx
Hi Sandra,
thank you so much for your reply.Im really glad to hear you are in remission, thats great news and really positive and nice to hear. I hope your able to lead as normal a life as possible even though you cant work any longer. I cant believe it took almost a year for you to be diagnosed, i sympathise so much. we watched mum go through months of hell before diagnosis and were so frustrated with the GP, I cant inagine what that year must have been like for you! As awful as it is, its nice to speak to somebody that understands as I havnt spoken to anybody else with myeloma.
Thank you again for your reply Sandra. I look forward to hearing from you again.keep well.
love
nerys xxx
