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 injections to make his stem cells migrate from his bone marrow into his blood stream to expect a bit of back pain for a few hours. He didn’t know that this was normal so when he went to have his stem cells removed and mentioned the pain the nurse said “good it shows that the stem cells have migrated into the blood stream”.
As you probably know, everybody reacts different to the treatments, but the most important thing is to REMAIN POSITIVE, and when in the “pod” try to eat even though you feel sick and clean your teeth after every meal as well as take all mouth medication supplied to prevent mouth and gullet ulcers. My family wishes Kevin all the best and to encourage you and any family to remain positive. It is in some ways harder for us because we feel we can’t help.
My dad said that if there is anything else that they need to know he will only be too pleased to give you his experience. By the way, doctors initially thought dad to have non hodgkinsons lymphoma until they got the results of the bone marrow.
All the very best,
Louise
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too had read all the published data on the IgM type and the information was pretty grim – mostly because of it being so out of date.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. There were ups and downs but in the end there were not real serious complications but we always felt that it was his positive frame of mind that got him through it all. A year on and dad is still paraprotein free and I would say that my dad’s quality of life is almost as good as it was before we discovered this disease, except that he is a bit more vulnerable to the viruses going around during the winter.
My advice would be to keep reading this site, there is some fantastic support, and stay positive if you can.
I wish you both all the very best in your journey to recovery.
Louise
Louise
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 through it was to stay positive and eat something even if he didn't feel like eating (dad ate custard/jelly and bananas). For dad, the worse thing was the constant sick feeling and two or three days of bad diarrhea. Doctors can give you medicine to take the edge off this but it's still lurking in the background. He would also say to strictly follow the mouth wash regime to help avoid problems with a sore mouth.
One thing that we were lucky enough to be able to do was Facetime (similar to skype but using IPads) him in hospital. This meant that he could speak and see Mum and family members (especially grandchildren) whenever he wanted and we were able to connect with him to show our support but were respectful when he didn't feel up to talking.
Obviously dad's out now (1 week tomorrow) but has still got a long way to go. He finds a shower exhausting but he'll get there as long as he is patient and doesn't over do it.
I wish your dad the very best of luck in his SCT.
Kind regards,
Louise
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 if you don't feel like eating. I'm sure when he feels better he'll be on here and have more to say about this.
Wishing you all the very best,
Louise
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 imagine it will be a while before he can eat properly but what about the runs? Will that continue for a while?
I've often read your posts on Phil's SCT journey. I do hope that he is continuing to make a good recovery.
Very best wishes,
Louise x
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 gone and that he shouldn't be surprised if they say he can go home at the weekend! Dad said he won't hold his breath! I must admit I won't get too excited as it was only yesterday that dad had a blood transfusion because his blood counts weren't satisfactory. Nevertheless, it does give us light at the end of the tunnel.:-)
Best wishes to all.
Louise x
P.S. Will get a clearer idea this afternoon when we get his blood results back I suppose
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 enjoy the Rugby today. Dad is now in his third day of neutropenia. Earlier the nurses were concerned that his temperature spiked and questioned a chest infection but the x-ray (which was wheeled to his pod) turned out to be ok and his temperature seems normal now. Fingers crossed those neutrophils start to come up soon.
Take care and best wishes for a smooth recovery,
Louise
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 him this morning on facetime (I'm in Manchester and he's in Hull) and reminded him about what Tom said about drinking plenty – he said he would do his best.
Unfortunately mum has caught my brother's cold and so can't visit but dad doesn't seem to mind. I plan on driving to Hull to visit tomorrow evening to take in some fresh clothes and custard. Fingers crossed he will feel a little bit better tomorrow.
Thanks for all your support. I know dad logs in occasionally and your comments really give him (and us) a boost.
Best,
Louise x
P.S. Dad's neuts were 0.425 yesterday so probably zero or close today
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 their job soon. He's had a couple of days of 'the runs' but this seems to be settling for the moment with the help of medication. The main problem for him is the nausea and difficulty eating which everyone seems to suffer from. He manages a little bit of the hospital food but mainly custard and yoghurt. He particularly dislikes the smell of meat which is strange because he normally loves his meat.
He gets his blood results later today, neutrophils were 3.2 yesterday but we suspect they will be lower today.
All the best,
Louise
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 will come freely.
All the best,
Louise
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 for him has been not to look to far ahead but rather break it all down to little milestones.
Wishing you an uneventful recovery over the next week or two.
Best,
Louise
