Hi Nicki,

Dad’s paraprotein was 47. The only bone damage he had was two slight lesions in the top of his head. He did not have any sign of kidney damage and all seems to be ok up to present. I told him about your message and he wanted me to thank you on his behalf for your kind comments. He said to tell Kevin that when he has the two or three…[Read more]

Dear Nicki,

I thought you may find it useful to know that my dad was diagnosed with IgM Myeloma in September 2012. We too had read all the published data on the IgM type and the information was pretty grim – mostly because of it being so out of date. Dad went on to join the Myeloma XI trial and had a few cycles of CTD and an SCT in March 2013.…[Read more]

Hi Nikki,

My dad had his stem cells collected on 12 February, returned on 1st March and he was out on the 15th March. Dad was told it takes three weeks to prepare the stem cells but his were quicker because he was the only one having his collected that day and everything was ready.

With regards to the SCT, it is tough but the way dad got…[Read more]

That's fantastic news. Well done you!

All the best from Louise, Garry and Helen xxx

Dear Sarah Jane,

My dad (Garry) is still in hospital recovering from his SCT and has just turned a corner (his neutrophils are on the up). I think he would say that the harvesting is quite painless. He has two pieces of advice for getting through the SCT, positive thinking (like so many others have said) and making yourself eat a little even…[Read more]

Thanks Tom. It is so reassuring to hear that everything does not have to be 'normal' before he gets out – he's desperate to be home now!

All the best,

Louise x (definitely onwards and upwards!)

Thanks Megan, that's reassuring to know. It really is a wonderful feeling knowing that those stem cells are starting to do their job. It was quite emotional the moment we found out! Dad realises it's going to be a while before he feels totally better. The sickness still has a firm hold but be still manages to eat a little and drink lots. I…[Read more]

Thanks for your encouraging message Tom. We've just heard that dad's neuts are 0.08!! It's given us all a huge lift. Isn't it strange how quickly things can change?

😀 xxx

Day 11 of dad's SCT journey! After a couple of ropey days :-S dad seems to be picking up a bit. He's still receiving a drip of potassium and anti sickness medication (via syringe driver) but he seems to be a bit more high-spirited. The doctor this morning told him that he has done really well and that they are very pleased with how things have…[Read more]

Dear Jean,

I hope Frank is managing ok. My dad (Garry) is on day 9 so only a few days ahead in his SCT. He's had the runs and felt sick too, he also said that he has never slept so deeply in his life! He ended up with a syringe driver of anti-sickness and morphine for stomach cramps and he is much more comfortable now – he even managed to…[Read more]

Just thought I would update you on dad's progress. As you might imagine on day 6 dad is feeling quite poorly with sickness and diarrhea. He had a terrible night dashing to the loo (once he had unplugged and negotiated the drip to the bathroom). He's really struggling to eat but can manage a mouthful of custard every now and then. I spoke to…[Read more]

Dear Tom, Dai and Megan,

Thanks so much for your reassuring messages. Dad (Garry) is now Day 3 post transplant. In the end he had two bags of stem cells and yes, the smell of sweetcorn/crab sticks was quite pungent! Those fascinating cells went in with minimal side effects (just a slight flushing of the head) and will hopefully start doing…[Read more]

Thanks Megan. I see that Phil had chest pains when they introduced the cells – hopefully when they re-introduce the cells this afternoon they will keep the flow rate slow enough to avoid too much discomfort.

Will keep you posted on how he gets on.

Louise

Hello Peter,

So glad to hear that the SCT went as well as expected and that you are continuing to get better. Well done you!

Dad goes to have his stems cells collected tomorrow at Leeds. He's a bit nervous – more about needing the loo while it's all going on! Transplant is provisionally booked on the 5th March. Fingers crossed those cells…[Read more]

Hi Peter,

Glad to hear that you are doing well and coping with the treatment so far. Dad starts his injections to encourage stem cell growth on the 2nd Feb and will go to Leeds to have his stem cells harvested between 12-14th Feb. I think he shares your positive attitude and I really believe that has helped with his recovery so far. The trick…[Read more]

Hi Peter,

It really is a small world. We moved to Hale in 2001 but we are both from Hull.

The doctor said that dad's results are an excellent response to the treatment. He started out with pp's at 47 and last week his pp's were undetectable after only 4 cycles of CDT. We are just waiting to get an appointment with Leeds for stem cell…[Read more]

Dear Peter,

I'm so glad that the induction therapy worked and that you are ready for your SCT. I wish you the very best of luck and hope that you get through as smoothly as possible. I'm sure your positive attitude will help a quick recovery.

You may remember that you gave some advice for my dad (Garry from Hull) who was diagnosed in…[Read more]

Hi Everyone,

Dad has decided to opt for the MM 11 trial and was randomised to CDT treatment. He was in hospital for 5 hours today having had lots of prodcedures done (Bloods, bone marrow biopsy, treatment to protect his bones) and has come home with a sack full of tablets, needles, needle disposal box etc! He starts treatment tomorrow morning…[Read more]

Thanks Jill, that's very reassuring to know.

Best wishes,

Louise