Hi Sue,
I know exactly what you mean my husband had had MM for years and I just don't know what to do when i don't have to be with him. I wander around trying things and not settling at anything it is so strange as if something is missing.
I hope eventually you will be able to settle at something and relax do take care we have to be strong and healthy for us and our husbands and family By now Michael will be home and I hope the transfusion did what it was suppossed to do and you are feeling a little calmer.
Love Teresa
Hi
Best wishes for Tuesday
I hope Colin and Pete have had a better day today but each day different so just accept.
My husband Peter also had pain in the sternum,/chest issues after his SCT and he has been seeing a cardiologist ever since. Just a regurgetation valve problem but they don't want the heart to swell so he is on heart meds and asprin but only a yearly check up so nothing serious to worry about. Just another side efrfect? There are so many, but every little different thing has to be checked out.
It must be gardening season! the warm weather brings us all out. I also was planting out but my son cuts the grass and my husband as sick as he is sat on a chair and filled the pots with earth, that was it then back to the sofa for the rest of the day. So all the little joys are worth enjoying like visiting mum and having friends to lunch.
It is very hard to see someone change so dramatically in front of you and look so sick and old and forlorn as you say but things do get better and letting your feelings burst forth relievs the pressure
Take care
Love Teresa
Hi Dai
Glad the email arrived.
Sorry to here about your spiking temp but you seem very calm and take it in your stride.
How on earth can you drink soooo much I think I would be sick if I drank that much.
You must tell me any tricks to get in down so that I can make sure Peter has plenty to drink in this hot weather,
Love Teresa
Hi Andy
So sorry to hear you were prodded twice for the Bone marrow bi opsie what a pain for you. Hope the procedure didn't cause too much discomfort.
When Peter had his first BMB it was done in the sternum! now thank gooddness it's in the hip.
Having really low white blood counts can cause all sorts of problems I am so glad you are just staying away from all germs. Mind you going to the hospital I am sure didn't help so hope you managed to stay clear and wear a mask? I think Peter had to be very careful even with bacteria in his mouth when he was neutropenic does that make sense?
Do take care and have a rest while you are waiting pp results and starting up your treatm,ent again.
Glad your weather is good and i hope you can pop outside to enjoy it while you are resting.
Australian guys only here for a couple of nights and to be honest that is enough we really can not cope that well with extra people in the house so much stress on Peter it really upsets his everything but he has to see his younger brother so all will be well.
Stay as well and rested as possible we don't want you in the rotton old hospital again.
Have a good weekend
Love Teresa.
Hi Ann
Yes Dex affects everyone differently I just wish I had known at the begining of our MM journey what i know now.
The weekly Dex didn't agree with Peter he took too long to recover from it so the 4 days on off are better for him. He also gets very energized and red in the face and very assertive boardering on rude then can't remember anything he has said. Driving is a nightmare as he shouts at everyone, but he trys really hard to keep it together as he only found out how bad he was when the nurse told him a little while ago!! not 8 years ago when we started all this.
Peter also has travelling pain, ribs back hips but this is normal I think?
I am sure they will soon have him on a treatment tailor made just for him and he will have a nice long remmission and by then you will be used to this new life style and just not worry so much there isn't always a reason for everything it just is and forget it and enjoy the day.
Hi Vikki
I am looking forward to seeing the Forest of Dean one day when my sister has moved and settled in I love the Cotswolds Deddington nr Banbury where she is now.
Have a good week Ann and Vikki Take care of yourselves try really hard not too think too far ahead all will work out
Love Teresa
Hi Eve
I am sure you and Slim will make it to NZ again after the effects of the SCT kick in and make him feel so good and push him into remmission.
We are fine thanks Peter has been put on an arm of the pomalidomide trial to try and slow the MM from spiraling out of control at an alarming rate and methadone has been added to his mix of pain killers. So at least he can move about a bit, just a few steps into the garden but that's good for now.Our long term goal is to see our son's little boy enter the world Oct 01 or short term goal is get to the end of the garden before the pain is unbearable and enjoy the birds.
Hope you manage to get Slim's hair cut and then it can grow back nice and thick and black, can you believe that is what happened to Peter, I have thought about shaving mine to see if the same thing will happen.
Take care of your self and look forward to a great summer I an thinking about you at this time
Love Teresa.
Hi Andy
So glad to read you are out and about even with the BMB results hanging over you. Are you really tired or can you manage to keep up with your company on nights out?
Hope you enjoyed your comic and he gave you some good laughs.
Peter's brother and wife from Sydney are arriving on Sunday so that will buck him up and we are hoping that the pomalidomide arm of the trial with the extra dex and the new pain meds methadone will help him through the pain.
I do so hope they get you on a really good drug and into complete remmission very soon.
In the meantime you can look forward to the lake District and some good weather and relaxing time, (by the way it is plus 30 here today so not too much moving around for me not a fan of hot weather.)
Have a good weekend and let us know how the hospital visit went last Tuesday, that was my birthday I spent it planting leeks!!
Love Teresa
Hi Andy
was thinking about you on Tuesday as you were having your BMB.
Peter had his on Thursday17th last week and Wednesday 23rd this week they have put him on new pain killers and high dose dex one arm of a polamalidomide trial
anything to keep this MM from spiraling out of control.
Hope you have good results and they soon have your levels coming down and complete remmission for a long time.
Love Teresa.
Hi Dai
email sent last night hope it arrived??
Love Teresa
Hi Paul
so sorry to hear you are feeling low it's not a nice feeling but things will look up soon I am sure.
Good luck with the DT pace.
Love Teresa.
Hi Dai
You always seem to know so much and are really interested in upcoming trials and treatments. I was wondering if I could send you an email I have received from Toronto and District MM it's their newsletter #88 and you may find it interesting if you haven't already seen it.
They mention Velcade's cousin Carfilzomib which is waiting FDA approval and other treatments in the pipe lines.
Not sure how to attach it here do you think ypu may want to see it?
Love Teresa.
Hi Ann
How are things?
Just read that Pete takes cd every Sat all in one go. As you say everyone's dose is different even though it's the same med. My husband takes his CD for 4 days then a rest for 4 days then starts up again.Only 10 pills at a time though. So I guess they try and treat the individual not just a common treatment for all, so that is encouraging.
We have just been through a load of tests scans etc and now they are adding methadone to the mix, let's see if that gives any interesting side effects hopefully not as bad as dex!!
Your sister's friend hopefully hasn't been diagnosed with MM.?
Hi Vikki and Colin my sister is just moving to the forest of Dean I haven't been there but have been to Deddington in the Cotswolds(?) where she lives now. It is so pretty.
There are all sorts of new trials out there and one at the moment waiting for FDA approval sounds really good so let's hope they all come along and we get MM to be a chronic just like diabetes can live with tha.
Take care LOve Teresa
Hi Eve
Thinking about you and Slim and wishing you the very best.
My husband was in isolation for a month when he had his SCT and it can be very tiring, stressful, worrying, so do take extra care of yourself.
The lady in the next isolation room slept in the room with her husband as she didn't trust anyone. I guess we all have to do what we think is right.
This time will pass and Slim will have a good summer ahead of him and both of you can relax and recuperate and slowly life will be good again.
Do take care and you are both in my thoughts
Love Teresa
Hi Jacqui
Thinking about you as you go through your stem cell transplant.
Love Teresa.
Hi Helen
Lovely to hear from you.
What a great birthday. Happy birthday and many more to come.
Looking forward to all your vacation news if you want to share.
Love Teresa.
