Thanks again Nick, I hope you saw my reply back to you . This is a brill site
Jen xx
Dear Paul,
Thank you so much for that information , that really gives me a bit of hope for my dad and I will show him that. 7 miles a day is pretty impressive , my dad would never do yoga or can’t ride a bike sadly but there is always a gym eh and I was thinking about the cycle or even the running machine for walking and holding onto the sides . You must be so relieved to be over the treatment now so onwards and upwards for you and let’s hope the curcumin help keeps it all at bay for many years ! I’ll keep you posted re my dad .
Best wishes and thanks again
Jennifer x
Nick,
Thank you for getting back to me, glad to hear your dong well and your bloods and pp at 4.4 is good and stable. I know this illness seems to effect everybody differently , I guess his age is against him regardless of his previous health. He is being patient and all we keep saying is give it more time . The doctor did say prob a year from diagnosis and hopefully it will all be behind him ! ………at least for a while eh !
All the best to you and thanks again for your response . It’s great communicating with others and getting an idea of how it can be etc .
Jennifer xx
Hello Paul and anyone else whose been through SCT
How are you doing ?
Can I ask , just before your SCT , how was your mobility and general well being ?
The team have put my dad forward for SCT as although 73 , he was previously a fit strong man with no other illnesses . At the mo 5 months post diagnosis and treatment , he can hardly walk , so so weak in his legs with extreme pain at night . Do you think they will still go ahead with sct if someone is already this weak and a shadow of their previous self ?
I feel you are prob a lot younger by the way you speak but was you quite well before the sct started?
Jennifer xx
Hello Mike ,
can I say thanks for the hopeful information , 11 years post treatment is amazing ! . Can I ask how was your symptoms before the sct took place ? I’m only asking as my dad who is 73 who was a fit strong builder of a guy before this illness hit him hard this January . The team have put him forward for sct due to his previous health being good but right now he is so so weak in his legs with pain at night he can hardly walk 50 meters they say due to treatment . He’s still having induction treatment , reduced dose now as had 4 cycles of VTD. How are you doing now ?
Hello Mavis
Thank you for writing to me and welcoming me to the site , which I think is brilliant. I have looked and responded to some of the other strands and again everyone is so open about what they’re going through, or have been through to which some are very positive and some not so . I appreciate what you said in regards to the staging as your right about it all being so individual and my dads nurse consultant also said all treatment is individualised and that it didn’t really matter either .
Do you mind me asking how long ago you was diagnosed ? And why didn’t you go for SCT ?
My dad doesn’t want to know too much about it all , he just wants to go with what ever the doctor says and has faith in them they are looking after his best welfare (which they are) he is hoping the horrible painful part of this journey will be over soon. We all do of course and will be grateful when we see some improvement in his quality of life .
Are you under going treatment at the moment ?
Best regards
Jennifer
Dear Clover,
i am just emailing as I’m new to this site and found your story and can relate to it. Im very sorry to hear about your loss, i hope you are coping ok and have other family support around to help pick u up when needed.
I am dreading the day already as my dad was only diagnosed in January (he’s 72) he has had 4 cycles of VTD but they’ve had to stop it as he’s been so so weak in his legs he can’t walk far at all. It’s extremely heart breaking to see already and I pray if he gets the sct that it works and we get a minimum of 18 months good remission and I hope like your dad will get to feel like his old self .
Its still early days but this illness is a terrible one, it’s debilitating and causes so much pain . I hope one day they find a cure .
Can I ask , do you know what stage your dad was at when he was diagnosed .?
Kind regards
Jennifer
Hello Paul;
Thank you so much for your reply, it is definitely reassuring to a degree although I know everybody reacts differently but I’ve heard more positive outcomes on this site re STC and how it’s not as bad as one might anticipate . As long as the nurses and docs address any issues right away (which I’m sure they all do ) people get through it ok. Im pleased for you it wasn’t too bad and im sure your still recovering . Let’s hope the curcumin helps to keep it all at bay for a long long time . Do keep me posted please. Xx
jen x
Hi Teresa,
Thank you for getting back to me, this site is fantastic , it gives you a good insight to how it is for some people and how it can be for others with treatment to come. I’m glad your hubby is doing ok since his SCT and didn’t find it all too traumatic and will still be recovering slowly but surely I take it.
It is also reassuring for me to show my dad some of these emails and how sct is probably the best way forward for longevity. I have heard it isn’t so bad from a couple of people now so I feel more positive although I know everybody is different and it is still very risky of infections to occur but there are risks with all of the treatments. Hope you’ve had a good day !
Best wishes
Jennifer
Your welcome Paul ,
Wish you all the best !
Have you had SCT ? If so can I ask how you found it ?
I am asking in regards to my dad you see , just diagnosed in January and hoping to get SCT . Just concerned it’s like equivilant to major surgery to the body as a manner of speech !
Regards
jennifer
Hi Anne,
Thank you for responding back, it must be a brave thing to start to do research for yourself & I can understand why one might not want to. My dad is not computer literate, and as I am very interested in his illness and welfare plus I am a nurse I am even more interested in this. Although not in haematology , I can relay info back to my dad. Like you , he lives alone and desperately needs his family at the mo for shopping , cooking etc. I’m glad you have family and friends nearby too as it must be very difficult for those who don’t. It is a very debilitating illness and again like you right now my dads life has been turned upseide down, he is just praying and hoping in time, that he can enjoy some of the things he used to do as I’m sure you are also waiting in anticipation for that day too.
Teresa,
Has your husband had SCT then ?, how was it for him and what was the most difficult part? I heard somebody say it’s equivilent to open heart surgery the effect it has on your body ?
Dear Paul & everyone
I bought 120 tabs turmeric with bioperine (black pepper ) 95 % curcumin High potency but each caplet is 500 mg from ‘just vitamins’ website £19.90 which I think is quite good value . As long as it’s 95% curcumin with black pepper to aid absorption , I think there are many suppliers out there.
I have bought these for my dad when he finishes his sct treatment . I hope there is some truth in it all and all the best to you all .
Clarkie,
Can I say well done you on getting your paraprotein don that far and only after 3 cycles . My dad aged 72 diagnosed jan 2018 , has had 4 cycles so far, his paraprotein has got down to 4 so a good partial response . They have stopped his treatment at the mo because he is soo so weak in his legs and can hardly walk. Can I ask how old you are . Are you in any pain lying down at night as this is when my dads pain increases. He has been put forward to the marsden for sct and we hope he is fit for it as don’t see many other choices and could get a good few years of treatment and symptom free.
Do you have anybody living with you , How do you cope ?
Dear Emma, Tony and Rebecca
Emma,
hope if you read this your journey of SCT is complete and you have made a great recovery and enjoying life again. I feel for you at such a young age to have got this illness and hope you get a long remission.
Tony, You have given me hope for my dad who is 72 and just diagnosed at New year. Considering SCT and when I show him your story , I think it will give him more courage . Thank you
Rebecca, Your words of advice are comforting to all and again give me hope for my dad as I just want to cry at the though5 of him suffering .
Regards
jennifer
Dear Nick and all who live well with myeloma
I feel a lot more hopeful for my dad after reading these stories . Although he is 72 , he was a strong builder up till the point of diagnosis this New Year’s Day just gone! He should be starting cycle 5 next week of VTD if the doc agrees as he’s having a week off as wasn’t too good , legs very very weak . The plan is SCT come aug/sept so your story has def given me inspiration and I will relay it to my dad as he’s not on this site .
Thanks , keep up the good work and staying healthy
Jennifer x
