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DaveT
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Hi, I had a few pick lines in for my chemo and sct. I often got blockages in the line and often infections. Ocassionally they could not clear with antibiotics so they had to remove the lines and have new ones put in. This is the complication of lines you can always get infections through them as they are open to the…
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Sitting in a chair or in bed has psycologically got to me as I have always been a busy person, walking, working, cooking, cleaning, gardening, diy etc I have never really liked walking or spending hours on the internet. However now I cannot do anything of the things I lived to do before due to my mobility issues. A new…
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Hi Beaglegirl, it does not matter how long you are in bed, as long as you are giving the dogs and horses lots of cuddles and talking to them and remembering the times you spent with Martin and them. They need you now more than ever as they are also very confused, with what is going on and mum spending so much time in bed…
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Hi Beable girl, GCSF just stimulates your body to produce more blank stem cells that can be used by your body to make other blood cells used by your body such as red blood cells, plasma, playlets, neutrafils etc. however if your body is not functioning correctly or is very worn out due to all the treatment it has had the…
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Hi Beaglegirl, I am so so sorry for the biggest loss of your life. I am sorry I have not sent my condolences sooner but I been struggling terribly with my gvhd and often wish I was not around with all this struggling and no progress. You sound like you had the ultimate relationship with your husband which is not always…
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Hi all, unfortunately as usual I am not finding life very easy. My mobility stays fairly much the same however keeping my fingers crossed as I have received my uva1 phototherapy device that hopefully may help with my sclerotic / tight skin and fascia. For Helen mainly I have used it three times so far but it takes so long…
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Hi Helen, I forgot to mention that they do say the more immunosuppressants you take they say you are at more risk of skin cancer. So maybe it is the quantity you are on and not a particukar one. How long is each session going to be for treatment? How are they going to resolve the immunosuppresssnt issue unless you either…
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Hi Helen, I sent you a copy of the post on fb messenger. Unfortunately my team does not get involved much in uva1 treatment as they have nowhere locally to send patients. The only real facility is in London and it would not be authorised the price to send someone there.
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Hi Helen, really strange as I remember on on of posts on fb someone was taking Ecp, Jakavi and uva1. Let me see if I can find it.
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Hi Helen, I do not subscribe to Facebook. However most of the posts I have are junk with lots of advertising. I just ignore it. I no longer find it a very useful tool except for groups such as gvhd, prendisolone, Myositis etc i hope you manage to get back on ok
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Hi Helen, many thanks. My unit should be arriving around the date of your first session. I would love to know your exposure time under the uva1 so I have an idea what time to give myself, as I know too long can make you red / itchy. let us hope that Beaglegirl husband improves. Sounds like he is having a rough time of it…
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Hi all, I have psycologically been suffering due to not making any progress on my condition. One little bit would give me hope. I am still hoping my consultant can get funding from nhs for imatinib, and I have also ordered my self a uva1 phototherapy light from abroad which has had good reviews of breaking up gvhd skin…
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Hi all, I am the same I am in bed until about 1 pm as I can’t mobilise hardly when I am up and I get bored in front of tele all day. My time will come hopefully when my mobility returns I ca start getting up earlier to hopefully go shopping, cook a meal, do a bit of gardening etc Now I just have to rely on food delivery…
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Hi Helen, Thought of you today. Sent you a link to a post on Facebook to a similar issue you have been having. Scleroderma with cracking skin where the wounds do not heal. It looks like UVA1 treatment and UVB has been very successful and some people getting relief quite early on . I know like me you have been finding it so…
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Hi All, Hope you are all in fairly healthy condition. Michellranne, hope your infection is going down and your lungs are starting to get better. Audrey, really good news about your daughter that she is slowly getting there and her biopsy results were so good. Beaglgirl, sorry your news was not as good, but I am sure your…
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Hi Michelleanne, Such good news your X-ray was clear. I am so happy for you.
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Hi michelleanne, Good luck for your appointment tomorrow. I guess they will probably book a lung function test for you to check your lung capacity. I have had a couple of these and luckily was ok for me. I hope yours is just as good and is just a simple infection and not gvhd. Auds hopefully your daughter will get some…
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Hi Helen, you sound a bit like me. I today went for my bi-weekly Ecp 2st session of the week, 3md tomorrow but I don’t stay there overnight. yes I have my mri tesullt that I have Myositis as I thought I may have now I can understand why my mobility is so bad and why I can’t put on muscle mass. Need to find out more from…
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Sorry it meant to say Auds
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Hi aids, I can tell you of my bone marrow biopsy’s I can say like your daughter I never looked forward to them as they are very painful or should I say uncomfortable but really a must for and blood / bone marrow cancer. If your bloods are for some reason not quite normal are being produced normally or cells are abnormal it…
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Hi all, Really good to hear Beaglegirl your husband is now doing so well. Especially as you are now able to plan days out. I have been waiting over 2 years and still not up to it yet as leg fascia is still too tight. Take it very easy and get your husband to stay masked as any slight cold / infection could see him back in…
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Hi all, Firstly Audrey so good to hear your daughter is doing so well after her second sct especially as things were not so good in the beginning she has come a long way. I am glad she is going from strength to strength. Michelle so sorry you are getting these chest infections, I hope they clear up very soon. Helen so…
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Medical grade honey on wounds has been shown to help people with chronic and non-healing wounds. Medical honey has anti-bacterial, anti-inflammatory, and even anti-odor properties that can help people with chronic wounds.
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Hi Helen, sorry having a really bad day but you may wish to have a look at this link. It is for 3M wound care…
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Hi Helen, How are you? Well I hope. I hope this new cream is working for you. Surely if the wounds on your feet are continually covered in cream they will not dry out and scab, however I may be misunderstanding. How is your mobility due to this issue or skin tightness? Are you still managing to drive? I unfortunately have…
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Hi Helen, How are you? Well I hope. I hope your skin weeping has dropped a little. I am struggling at the moment as my skin is so tight still and never lets up. One on my calves is now heavily peeling skin so don’t know if that is good or bad. Luckily is not weeping though, how it is a bit red underneath where the skin has…
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Hi Helen, so hard all the time. Bad week as well for me as well . Sorry the cream did not work. It sounds to me a bit like your wounds should be treated a bit like open pressure sores. And barrirer cream used to stop infection. I understand the wounds optimally need to dry up to heal but until that time treated like…
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Hi Tom, That is superb news that Scotland has one more tool in its Arsenal. Just wish it was a UK decision as it could really benefit me I think for my skin condition. Helen currently lives in Germany where it may have already been approved.
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Hi Helen, you never know. Strange things seem to affect gvhd. My fingers are crossed for you. No grapefruit while you are on cyclosporine. Coffee is ok though.
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Hi Helen, This med sandimmun in uk we call cyclosporine and generally it is given to most during the initial transplant to dampen down immune systems as they grow and the donor takes over.