Hello jacqui,
I hope your transplant is going well. My partner Colin was diagnosed in oct 2011. You seem to have progressed very quickly! Colin is on cycle 7, pps at 1.2 and light chains at 1300. I know how hard it must be for your girls as it's really hard to stand by and watch someone you love be really I'll, not understand what's going on and scared of the outcomes. Colin is planned for an SCT but don't know when yet……
I hope your SCT goes well and you are soon well, happy and back to your normal self
With very best wishes and good luck,
Vicki and Colin:-)
Stephen,
Just read your posts and wish you well with your next stage. It's my pattern Colin who has mm. He started his pp level at 17 and his lit chains started bat 31000! (now down to 1300). I can tell you we have been obsessed with the numbers and whether they are goin up or down, in fact it's what keeps us going between appointments. Everyone has said this in an individual condition so best of luck with this stage. By the way Colin too was used to being in control and its hard to reply on others but like you we have found the medical teams to be great. Keep smiling.
Vicki and Colin x
David
Thanks so much for this. These practical tips will prove useful in time. That said at the moment we won't be going far as Colin hasn't had a date for SCT yet. He has peaks and troughs of wellness and sometimes is quite full of energy in the scheme of things.
We try to eat a good diet and use the same principles as you, peeled fruit, wash the salads, no salad bars and plenty of fluids.
Still for now living in the forest of Dean in Gloucestershire will give us plenty to do for now.
Best wishes and stay well
🙂
Vicki & Colin x
Hi ann,
Have read all of the posts and it did make me laugh ( I do sometimes) when you said that Peter was stubborn and not keen to post initially. Colin doesn't do the posting but I read them all too him. I then share what I am going to write. I would echo everything on here. When we first saw the number of tablets we could not have believed how many and read the instructions a 100 times to make sure!
What I do is a spreadsheet each month and tick off when Colin has had the tablets and keep a diary of food eaten and how he is feeling on a daily basis. This way we can compare each month checking if appetite is up or down and the feelings because we've found the steroids can make Colin a bit emotional at times. You tacked about Peter looking I'll. I understand this, Colin has a 'look about him' sometimes and i am getting used to understanding the tablets are Working and getting an inkling of whether we might need to do a temperature check (digital thermomater good kit to have). Or to the hospital for a check. There no doubt this is hard for the pair of you (us) but vastly different reasons. I don't like it when I can see Colin poorly and do nothing. I feel my value is organising the tablet rota, trying to do some tasty food and keeping us both buoyant.
I'm no expert with this and still feel very tense and emotional about this whole thing but just take one day at a time and no thinking what if! Colin had one bone affected in his vertebrae and has had radiotherapy for that. He now takes bone tablets everyday. Be strong.
Vicki and Colin x
Gosh, you sound like you have been through it! First of all- the very best of luck to you. We hope that this next phase of treatment goes well and you can get back to normal and enjoy the things you and your family do.
Colin had those rigours- they are scary when you don't know what it is!,
Colin is on the myeloma 11 trial and the light chains seem to be coming down each time…..hopefully that will continue and get down to as low as possible. They are planning an SCT for him too- we don't know when yet. Do you get very tired? Do you manage to go to work?
Keep us posted on how your treatment goes and once again very very best of luck with it over the next few weeks.
Vicki & Colin x
Hi Andy
Colin has had quite a few infections too and they only detected 1.his temperatures shot up and he had a rigour which is a violent shaking and hard to catch breath. We know what it is now so not so scary. Hope you keep well and treatment beats mm into submission!
Vicki & Colin
Thank you for your reply. We've gained some really useful information already.
I seem to remember reading some of your posts and that you've travelled a bit? Cruises/cycling in the new forest-hope that's you. We are concerned about going too far due to Colin having had some nasty infections and temperature going up quickly which resulted in a rigour ( shaky uncontrollably and hard to get breath).how do you manage with travelling and making sure that medical help is available to you if you need it? We like to travel but don't want too at the minute!
Regards
Vicki and Colin x
Hi Paul
Thanks for this. Was wondering if anyone would mention the bence jones scores. Would you mind sharing with us where you started in terms of a number and also what your paraproteins were. What stage are you at now?
Colin had just started cycle 7 and the last results we have is 1300 for the bence jones and 1.2 for pp.
The reductions each time are getting smaller but we assume that this is because there is less mm present. Would be interested to hear any of your experiences and how you are managing day to day
Regards
Vicki and Colin x
Ann,
I can really understand where you are coming from. My feelings go from elated when Colin can do stuff ie yesterday some work in the garden then totally shattered by that!. And slept for most of the early evening and beyond. I can tell you I have shed some tears over this…..why us but why anybody on my sensible days! (try not to say any of that it front of col).the helpless thing I would imagine is common. I have scoured the website,but only looking for the one that says cure found!.
Colin has had some real good infections and that can be scary…..but I am sure we feel like all the others and can only stand by and keep supportive. Col started cycle 7 on Friday so it's hear we go again. From my experience col goes up and down,good and bad days, we need to be strong in different ways. Keep in touch ….remember this won't be forever. Roll on stem cell transplant:-)
On by the way we live in Gloucestershire so not too far from each other….who knows we might be able to catch up on a good day!
Vicki x
Hi Alison
Thanks for your info. I will certainly take your advice about the Internet. Keep me posted on how it goes with your mum and good luck with the impending arrival!
Vicki
Hi Ann,
I was just wondering how you and Peter are getting on with the treatment?. I tell Colin that the 'baddie'medicines are our friends because they are knocking out the nasties floating about in the blood.
Roll on when we can read they have found a cure or praps having an injection once a year!
Vicki
Hi Andy,
Thanks for your encouragement. I have read your posts and see your pps aren't moving…..yet!. Colin was told that his mm was more indicative from the bence jones light chains number, although from what I can see so far I'm the only one to mention these so far!,
I hope you get some progress soon,
Best of luck.
Vicki
Hi Ali
Hi Alison
Thanks for your reply. It looks like your mum is in a similar position to Colin. I know what you mean about reading stuff. I want to know and then catch sight of something that then makes me worry a bit. Colin is still responding and waiting to start cycle 7-delayed a week due to blood count too low!
It is really scary and I have days when I go down the what if this or that happens……not good. I am pleased I have posted on here as everyone is really supportive. I share them all with Colin. Colin is really keen to get onto the SCT. We are told that as long as he is responding they will carry on with this bit for longer. Do you know what your mumbenefice Jones light chains figure is?. Colins is 1300. Like you and your family I am keen to help Colin through the SCT- although looking forward with trepidation.
I hope all continues to go well for your mum.
Take care
Vicki x
Carol,
Thank you-it's very encouraging to hear of your activity after a SCT and that you can do normal things again.
Question I have for the medical teams though is-with the SCT how close are they for developing a process to clean totally the own stem cells returned to the patient rather than leaving a 'residue' . That would give longer remission.?
Good luck with yours and a happy life!
Vicki
Tom,
Thank you. I hope you and your 'young bride' are both doing well. Thanks for the encouragement. You are right about caret word-nice to be cared for but not wanting to make our partners feel helpless!
Vicki
