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• 28th October 2011 at 11:41 pm #105617
  
  KeithH17
  

  Participant

  Hello eveyone,had my latest check-up on Thursday and all is well.
  PP's are down from 2.55 g/l to 2.00 gl and the rest of the bloods are also fine and going to plan,my next check will be Jan 2012.
  The only problem I have is itchy skin which I've been given Chlorphenamine tablets which I'll take along with the various creams and lotions I'm using at the moment.

  Hope Debs and Jet are doing well,the latter I have'nt seen post for some time.
  Stay with it girls and keep well.

  Keith.

  29th October 2011 at 10:40 am #105618
  
  Perkymite
  

  Participant

  Glad to hear everything is going well Keith. As you say keep going.

  Kindest regards – Vasbyte

  David

  29th October 2011 at 2:23 pm #105619
  
  DaiCro
  

  Participant

  Hi Keith,

  Let's hope the medication sorts out the itching and allows you as normal a life as possible during your remission. You will continue to grow stronger from this point and while everyone is different I believe that come the 8 month marker you will feel fit to take on the world. 😎

  Best regards 🙂

  Dai.

  29th October 2011 at 4:49 pm #105620
  
  susannah
  

  Participant

  Hi Keith Good to hear from you, and to know things are going well (apart from the Itch)

  Best wishes
  Suex

  30th October 2011 at 9:13 pm #105621
  
  Debs
  

  Participant

  Hi Keith
  Great news (though sorry to hear about the itching!). I'm doing well thanks, unfortunately I have to go back every month due to being on the Revlimid maintenance arm of my trial. But I think I am lucky to be offered it so I shouldn't complain!
  Feel like this week has been a breakthrough as I haven't had a sleep all week (apart from the odd nap in the car!) with it being half-term and the kids being off school. Nick took the week off work and we've done Warwick castle, London, Derby and off to Legoland tomorrow. I couldn't have imagined doing one of these things 2 months ago 🙂
  Here's to a long long remission for both of us..and Jet, who I believe is doing well according to her fb pages.
  Take care (and thanks for wondering about us!)
  Debs x

  31st October 2011 at 1:06 am #105622
  
  DaiCro
  

  Participant

  Hi Debs…

  I was just wondering about the Revlimid maintenance therapy as you are recovering from your SCT. Does it have any side-effects? I would have thought you have enough on your plate without the complication of accessorised treatment. 😐

  But hey!!! If it gives added value to your recovery by way of making it stronger and longer then all well and good. 😎

  Glad to see you posting and energised (your half-term itinerary sounds like an interesting but exhausting time). I expect a quick sprint up Pen-Y-Ghent by Easter. 😀

  Dai.

  31st October 2011 at 9:11 pm #105623
  
  Debs
  

  Participant

  Hi Dai,
  I don't seem to be having any side effects from the revlimid so far – maybe because it is without the dex and cyclo? It is supposedly proven to prolong life and extend remission though, so as long as it doesn't deteriorate my quality of life, I'm happy to go with it and see what happens?!
  Hmmm, Pen-y-Ghent…maybe not (did the Yorkshire 3 Peaks for MMUK last year!)…..but then again, I may do the China Wall as I'm hoping to visit my sister in Beijing next Easter!! lol!!
  Debs x

  2nd November 2011 at 7:43 pm #105624
  
  Roz
  

  Participant

  Hi Keith

  So glad to hear things are looking good for you…Who cares if your itching here:-/ or there:-S or is it all over:-D

  Keep up the good work, onwards and upwards remember

  Love and all the best
  Rozxx

  3rd November 2011 at 12:43 am #105625
  
  brocho
  

  Participant

  Hi Keith great to hear you are doing so well Long may it last !! I hope you get your itchy rash sorted soon it must be so annoying love Bridget x

  10th November 2011 at 2:31 pm #105626
  
  helenpageuk
  

  Participant

  Hi All,

  Glad to hear that you are all doing so well post SCT. I was wondering if I could ask a bit of a random question. My mum is currently on her 4th cycle of treatment (she is on the Revlamid Trials drug) and will eventually have a STC. My dad would really like to buy her a lap top for Christmas so that she doesnt feel so isolated when in hospital. I have said to dad that I would think that it is unlikely that she will be allowed to take a lap top in as I would imagine that they carry a lot of germs. I wonder if anyone could confirm this for me?

  Also, I was hoping that anyone that has had the STC could give me a bit of info on what mum is likely to encounter when she has the STC, how long she will be in hosptial for, how she will feel and how long it will be until she recovers?

  Any information would be very gratefully received.

  Take care all and Many thanks

  Helen x

  10th November 2011 at 10:25 pm #105627
  
  Helen
  

  Participant

  Hi Helen
  Best to check with the hosp what they will allow and if they say yes it will be at your own risk of loss or damage, it is personal so own bugs are ok usually, I was given an iPad for hosp!! It was a godsend, small and light weight and I am getting to know how to use it too!
  Wish her well
  Helen

  10th November 2011 at 10:46 pm #105633
  
  Jet
  

  Participant

  Hi Keith

  Glad to hear you're doing well. Sorry to hear about the itching. These things DO matter… quality of life is important. But hopefully, you can get something to manage it? Do ask… A Canadian woman with leukaemia wasn't told by her doctors about easy-to-access (from a pharmacy) products to help with dry mouth and dry eyes from GVHD, until 3 months down the line.

  You're right, I don't come on here very often, but I'm doing ok. I was well impressed with myself last week, when I met up with another post-SCT myeloma friend for a walk, lunch, then 2 hours cycling on the Monsal Trail. I was tired afterwards, but otherwise fine. She's 4 weeks behind me, so I was even more impressed with her. The main thing I'm dealing with isn't so much on the physical side, but more on emotional.

  Like Deb, I'm also on Revlimid on the trial. I have been/still am waiting to see if I have unpleasant side effects, but so far nothing horrid, perhaps just a bit more sleepy than I was, but I'm only 2 weeks in, so will wait and see. My consultant's assured me there are two levels of reduction possible if the side effects are too bad. And as Deb has said, Revlimid's been shown to be very effective at this stage, so I'm sticking with it for now.

  Let's hope for long remission for all of us.
  Best wishes to all,
  Jet x

  10th November 2011 at 10:59 pm #105628
  
  Jet
  

  Participant

  Hi Helen

  I had my laptop in hospital with me and could write my blog, access emails and Facebook via the hospital's wifi system. There was no issue about germs at all. In fact, the specialist nurse was the one who mentioned I could take the laptop in with me. The only thing your mum would need to check is whether there is internet access.

  To be honest, the isolation aspect isn't nearly as bad as you think it might be. In the first few days after the chemo and transplant, I was well enough to go outside, as long as I wore a mask. Another friend was actually sent home for the weekend, to return on the Monday when the blood counts would be falling. At the point when my neutrophils were zero or very low, I really didn't want visitors, but until then I had friends visiting, albeit not crowds of them and not hugging me and no one with a cold or anything, obviously.

  A few other things she may want are a very soft toothbrush, lots of knickers, ice pops, Ribena or squash and a few nice things from home, like photos, her own cup/mug, short stories – I didn't have the mental energy for reading a novel, but could just about cope with short bouts of reading. But it goes differently for all of us, so I'm sure she'll find her own way through.

  I hope it goes well for her.
  Best wishes
  Jet

  11th November 2011 at 2:05 pm #105629
  
  helenpageuk
  

  Participant

  Hi both,

  Thanks so much for the replies. They were really useful. May I ask how long it took to get over the SCT after you left hospital?

  Thanks and keep smiling

  Helen

  11th November 2011 at 6:11 pm #105630
  
  Helen
  

  Participant

  hi Helen
  I'm 12 weeks now and feeling a lot better. Energy is beginning to come back though I flag quickly, I think I can do more than I can – then get grumpy when I'm tired, wonderful for those around me!:-) The first 6 weeks were awful and I have some lingering niggles which I hope will go in time like itchy skin, you need LOTs of moisturiser applied religiously, and I developed colitis which is subsiding too slowly for my liking but I'm able to see improvement week on week. I have also had a chest infection even though I kept everyone at arms length for a few weeks. At our hospital there were no special diets, foods or mask wearing and not any advice other than avoiding crowds in the first few days after leaving hosp. As jet says lots of ice when you first go in to stop the sore mouth as much as possible, baby wipes, pjs, pants and interesting things to drink, I could not read anything,in fact I still find reading a chore.
  Hope this helps
  Love Helen

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