[VickiParticipant]

Hi jacqui and Geoff,

Wishing you both so much luck with this…..it is nerve wracking. Are you doing the gcsf injections yourselves or is the nurse coming in? Bristol are quite particular about the timings because apparently gcsf has a 12 mobilisation shelf life or something like that?

June does seem like a long way away, but as long as those cells are in the bag that's all that matters :-). Just keep calm and the staff at Southmead are so lovely (say hi to Debbie and Sally from Vicki and Colin) if they are around. They are so kind and reassuring. It is nerve wracking because its the unknown……but you will both cope as we did, although its b hard 🙂 sometimes.

Good luck with the 2 million plus!

Vicki and Colin x

[VickiParticipant]

Hi Jill

Glad to hear of your mums results…..I think all the meds contribute to bowel disruption of some kind…..constipation or other way. Colin was on revlimid, cyclophos and dex. He had a variety from constipation to tummy upsets. Apparently diahorrea can be as a result of being constipated, we were told, due to the bowel being less efficient and the 'deposits' backing up and not disposing properly.

Colin was given a laxative to take regularly to help avoids this problem 🙂

Hope this helps

Vicki and Colin

Ps sorry for so much detail 🙂

[VickiParticipant]

Well done Maureen and Ian,

Keep going, beat this damn thing head on 🙂

Vicki and Colin x

[VickiParticipant]

Happy birthday Babs stem cells 🙂

These are the stories we love to hear, full if positivity and hope 🙂

Vicki and Colin x

[VickiParticipant]

Ali

Yes I agree with the others. Colin did a lot of these 24 hour urine tests. It's important to get it right but at least also to understand what and why your are doing it.i would suggest speaking with mm nurse on the forum, they are so so helpful. Also your Gp and specialist. How come the specialist was in so much of a hurry to let you speak 🙁

Vicki and Colin x

[VickiParticipant]

Hi jean

We elected to get Colin's very short before he went in so that we both got used it it. We were advised not to do it ourself due to the risk of cutting his head and low platelets causing bleeding. A male nurse did offer to shave what was left off, but in the end Colin did it himself. We were also advised to shave with electric razor not wet shave for a while to avoid cuts and infections!

And tell frank not to worry, it will soon grown back, at one point Colin's hair had grown back so much he looked like a curly poodle…..it was own cut as he hated it! Forgot what it was like again without hair!

Hope you are both doing ok! On a blip at the moment here, Colin tired and wiped out, been doing too much 🙂

Vicki and Colin x

[VickiParticipant]

Hi Ali,

Hope your mums doing well….fancy you have an ear problem too! I think you are right about stress and it says to avoid stressful situations ha ha!,

Pete and Ann, Colin had no hair at Christmas. He was v v bald, but by the end of January it seemed to grow back out of nowhere, and by February nearly time for a hair cut. Body hair took a bit longer. Colin has had a hair cut and is shaving regularly now. It will come sooner than you think and as Tom says soon be fed up of shaving!,

Hey chris and Lena, glad you are both ok….Colin is on no maintenance so since his blood results late February our next test is April 20th. At that consultation Colin spas told there was no trace of pps which is great! Just needs to stay that way. Colin seems to do lots and then gets very tired and wiped out for a couple of days. It's all a learning curve isn't it! Take care

Vicki and Colin x

[VickiParticipant]

Good luck with your results John 🙂

Vicki and Colin x

[VickiParticipant]

Hi nicki

I think it varies. Colin stopped treatment mid July, then had two failed harvest, so between July and the 3rd attempt it was about 2 months. We finally got the cells in September and then he was in end of October 2012. Don't get too worried about time spans in between, no one seemed worried but I was however as non one else seemed to I tried to calm down!

With regard to tips I'd read the sct thread experiences, whilst everyone is different, it gives an idea. Best of luck 🙂

Vicki and Colin x

[VickiParticipant]

Hi Ann and Pete,

Good luck with the check ups and you guys look after yourselves! I think it's just check up after checkup now Ann!
Look after yourself too, I'm still tired and I am sure this vertigo is stress related, coming out after it all!

Biker chris and Lena, how are you both doing 🙂

Vicki and Colin x

[VickiParticipant]

Jean and frank,

Sorry to hear of the upheaval. I think the rash is a normal thing with regard to the platelets! This cortisone thing is like an anti histamine. So that will stop the itching and the rash getting any worse I would think. 🙂

With regard to the kidney thing, I have not heard of that but remember they are prepared for all that because the high dose chemo is powerful so they have drugs to combat all sorts. Nearing the end of Colin's transplant time in hospital I was shattered and when anything new comes up its hard to think let alone cope….I cried quite a lot which is unusual for me in public but mm is not the norm is it :-(. However what I an trying to say in a long winded way jean is that the medics always have something to combat the problem…..frank will come through! You take care of yourself too….I'm still tired and I am sure this vertigo is stress related !

Take care

Vicki and Colin x

[VickiParticipant]

Brilliant news Peter, have that celebration at Easter now 🙂

Hooray, you are sooo positive x

Vicki and Colin x

[VickiParticipant]

Hi Andy

Thanks, what's normal eh? With mm it seems to be different normals depending how things are going at the time ha ha!! Hope you are doing ok, maybe getting your pps down that sct might not be illusive? Can't they give you double prelixafor to get those pesky cells out 🙂

Enjoy your weekend

Vicki and Colin x

[VickiParticipant]

Hey jean and frank,

Frank must have a built in sport radar….waking up for football and then rugby LOL! It's hard to see frank with the tummy troubles and not eating but it will pass. And his neutrophils are past the magic zero which Is great :-). As debs said things will speed up and frank will make a sure slow improvement. Be careful for yourself too jean, I haven't been 'right' since the sct (Colin would probably has I never have ha ha!). It's very stressful supporting the one you love through this very horrible time. But there will be bonuses when things get better.

Take care both……by the way not reading the news papers today, too depressing. The national sport of rugby for us needs to change to something like tiddlywinks…..we might stand a chance of winning then ! 🙂

Vicki and Colin x

[VickiParticipant]

Hi Norma,

Best wishes for Monday……do not keep the challenges to yourself! This is what the good friends, family and this forum are about. Providing the help and support that you and the ones closest to you needs. It is a very individual condition, mm, but one that is treatable. It must be hard when you have the lupus as well but keep strong. Part of that is talking when you are worried and saying when you feel good as that will also give your loved ones a boost.

My partner Colin was diagnosed in October 2011 and had a transplant in November 2012 🙂

Vicki and Colin x

[Author]

Posts