What a joy for you Michelleanne with your granddaughter! I'm really pleased for you. It warms the cockles of my heart to hear that.
We're all doing so well in this terrible place even though it doesn't feel like it at all. We're still here. That's already saying something. We're fighters.
So glad to hear that you had a lovely time with your little granddaughter, Michelle. Little ones are a wonderful distraction!
My daughter went to a haematology support group organised by Maggies today. Although everyone had different forms of blood cancer , she said it was good to speak to others and she was able to chat to someone about her second transplant as he is waiting for one.
Just wondering if there’s anything like this in your local areas? Xx
It's very different I think with a second transplant. I guess every sct is different. We're all on our own very different journeys.
I'm glad your daughter's found some strengthening support. It must be a real relief for you yourself too Audrey, great for her. I'm pleased for you all.
Ive just tried to get into the gvhd fb site and it seems elon musk has decided to charge for the service or we pay with ads and our private data. It's so disappointing.
I'll get off here. Today iy the end of week 1 with high dose cortisone cream and it seems to be working. I have to reduce dose from today so crossing fingers it'll continue.
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 fibrosis sclerotic skin. Let us hope. I hope everyone is getting better which sounds like most of you are. I found a post elsewhere on the site from 4/11 from Beaglegirl who writes like things are not going to plan at the moment for her husband. See text below I have copied
BEAGLEGIRL
Hi Everyone, Im so sorry to be posting here but I know that you’re all really lovely and supportive! My husband is in hospital again. I had a phone call at 5am this morning to say that security was called as he had become aggressive. He is hallucinating and being really nasty to staff. They have done another lumbar puncture as they have found white cells and protein in it. They are hoping it’s an infection but could be aml relapsed in the central nervous system. Please I need a miracle and some reassurance. I have no one with me and im absolutely heartbroken and sick with worry waiting for the results. He’s currently fast asleep thank goodness x
That sounds awful for Beaglegirl and her hubby. Poor things. She knows where we are if she needs us.
I'll be having the uva1 too as of 16th. With the positive research results from it it looks like it might be a light of hope. It makes me smile, that would be wonderful, even if only tiny steps. We'll be dancing on the tables Dave.
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 and Beaglegirl also.
After just a week on the high dose cortisone cream, "momegalen, fett Creme
MomeGalen 1mg/g Fett Creme, from the company Galen.
I used it before but carried on walking with bandages and the bandages pulled the softened skin open. This time I've just been barefoot at home and the rare occasion I have to go out, wore my slippers with very soft socks. This time it seems to be working. My skin now needs to produce , generate normal skin and then I'll be ... walking:)
I think this might really help you Dave.
Every day wet, dab, wash without rubbing, the area , dab dry and whilst skin is moist apply the cortisone cream.
Sorry to put all these facts in here, this is usually my place for a quiet cuppa to share with you all. Now Facebook is charging I'm loathed to pay 13€ a month.
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
It's good to have a break from fb. I only do the gvhd site, but it's really helpful for me.
I just wanted to let you know you're very much with me. Thank you. I'm with you.
How's things? How was the stand up scan Michelleanne?
With me, My skin is , feels, just the same but looks better after a week of cortisone and I'm curious about the uva1 on thursday. My physio yesterday was disappointing, more of the same, it's called lymph drainage but feels like light stroking shins. Money for old rope.
My eyes are better when I use the oily Bepanthen in them, but still not good. I'm still on the " get up at lunchtime" plan , which feels good. My mouth is really dry but as long as I don't need another tooth pulled, I'm happy.
I believe my brain is recovering. It feels different.
I hope your daughter is still stable Audrey And that you're enjoying the grandchildren. You too Michelleanne.
I hope the new light is working it's magic for you Dave.
you sound brighter , I suppose things will feel the same with the physio as long as it works
I’m doing ok at the minute , not been out for a few days , as we’ve had a awful storm , strong winds and heavy rain , so I’ve sat and watched it through the window , while knitting
still having early nights and late mornings why rush 🙂
Just got back from my first treatment day in the dermatology clinic.
I was supposed to get the uva1 light therapy but... interesting for you Dave, they won't give it to me because of my immunsuppressants. Perhaps you can ask your team Dave. They knew about PUVA and skin cancer risk but this was something else. Not because of my ecp.
Anyway, I'll get off here.
It was quite good but challenging. I'm sceptical but trust and hope can grow. 3x a week for 3 weeks.
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.
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 stop one or see if you can sign a waiver. I really think this treatment will be good for your issue from all similar issues that have used this treatment,.
I'm not prepared to do the uva1 treatment if it increases my risk of skin cancer.
It's early days wigh the new regime so I'll give it somf time. There's no urgency or stress. Thanks for thf info on messenger. I look forward to reading it asap. If I can persuade my team I will. I think, after what you say, it's because I'm on highest dose of all the immunosuppressants.
Hello Everyone . I’m sorry that I haven’t been here for a wee while.
Weve been selling and clearing Paul’s house which has been so hard but we have to do it now .
My daughter hasn’t been well. She was dreadfully sick one night and since then nauseous and light headed . She thinks that it was food poisoning from a piece of fish that she ate which didn’t taste right. I’m hoping that this is the cause and thinking that she’s taking longer to recover because of lack of a working immune system. I’m always on high alert and worry so much.
Anyway, enough about me .
Michelle, I’m glad to hear that you are doing ok just now and late mornings and early nights sound ideal for this time of year.
Helen, it is so good to hear that the treatment that you are having seems to be working. I know that it’s early days but we can hear the positivity and lightening mood in your texts . I’m glad that Dave and you can give each other support with your similar issues .
Dave, I’m really sorry that you are struggling so much just now . I know that it must pull you down but what comes through in your texts is that you are trying everything possible and I’m sure that something will eventually help. It’s easy to say “ have patience “. We’d all feel the same but we’re with you and routing for you to turn the corner soon .
Beaglegirl, I do hope that your husband is making some progress. I know as a loved one of someone who is very ill that it’s so hard to be with them and not be able to take away their pain. You’re doing a marvellous job of just being there for your husband .
Well, all my friends , I hope today will bring you some relief and a little happiness knowing that everyone here is thinking about each other .
Hello Audrey, no need for sorries, it's always good to hear from you, whenever. I'm sorry to hear that you've been busy sorting out your son's estate. It's so painful I can't go there. Please know you have my love, all the way from Germany.
Perhaps you can keep a record of any lightheaded spells your daughter has. I had one this morning but put it down to it being about an hour after taking my medication. I also would say I'm usually on mental standby mode. Being chronically ill has changed my mental pace and world. This morning I , only momentarily, lapsed into a dream... a sort of dejavu from the night. It's the first time it's happened, but it did worry me. It certainly is scary when the brain is involved. Poor Beaglegirl, let's hope she's in a calm space and her hubby is moving on.
As I've been feeling better recently it has made me realise, it's my brain that is noticeably recovering.. unfortunately my body is still struggling but it's my brain that has got back a bit of my 'flame', I feel that I can think again, I felt so emotional about it that I was in tears one morning, quite overwhelmed, but good overwhelmed. All those chemicals and radiotherapy, months, years of the stuff, along with those lifesaving stem cells which my body isn't getting along with. It's all understandable.
Your daughter is going to get through this Audrey. And I will too, in the end. Your daughter is younger so has considerably better chances.
Dave, how's your light treatment going? Are you noticing anything? It'd make my day if it did, even just a teeny bit.
If anyone's on Facebook gvhd, maybe they could give Ally Ryland my love... maybe Dave?
Michelle keep up the knitting. I hope you're cosy and warm.
Love to you all from the clinic. I only have Thursday off this week with my new dermatologie treatment and ECP.
audrey it’s so devastating what has happened to your son , it’s no easy solution I just hope that one day you can be at peace with it all
sometimes I have sickness it just comes out of the blue , wether it’s because my immune system isn’t upto where it should be or not I don’t no , I’m going to see someone about so see what they say
i always suffer from lightheaded ness it’s like having a hangover without the alcohol
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 to use as is only a hand scanner and it takes so many placements to cover all my legs and some of my waist. I had to do lots of calculations at the beginning based on my skin type, power of the bulb, distance bulb from skin to get a time of exposure on each placement so I did not burn skin or anything. So each placement is 2min 47 seconds. How sever I do wonder if I calculated it correctly and whether it is long enough time to have sufficient effect. However it seems correct with rough times in the manual. Many people seem to see signs of improvement early on however not sure yet and need to wait longer.
Audrey,
sooty about you having to sort out your sons house. It can’t of been easy for you and bringing back memories. Also your daughter maybe having GI gvhd which can be similar symptoms to what she has and can be accompanied also by runny stools. I hope for her it isn’t as it can go on for a long time and you generally need steroids to calm it down.
helen how are you feet improving with this new cream? Is the skin still softening and the wounds starting to heal?
michelle sorry you are also suffering stomach problems. I hope too you do not have GI gvhd for same reasons.
Hello everyone and thank you for all of your compassionate texts despite the fact that you all have your own worries and problems
Michelle, I hope that they get to the bottom of your sick and lightheaded spells . Let us know how you get on please.
Helen, I’m so pleased that despite everything that you are going through physically, that you are getting stronger mentally. I’m sure that is half the battle . I really hope that the treatment you are having at the moment will help. You certainly deserve a break!
Dave, I so hope that your phototherapy device helps and that perhaps you are beginning to see a little improvement soon. You keep trying new things to help you , never giving up and frustratingly slow as it seems, I’m sure that one day you’ll reflect and think “ this is better than it was”.
I so hope my daughter doesn’t have gvhd. She has been doing so well that hopefully this is just a hiccup. She had to hand in a stool sample today and has her next biopsy on Friday. Always a tense time!
Well my friends, im sending all my positive wishes that the next few days will go smoothly for you all.
i have gvhd in my mouth , throat and chest with medication it’s manageable , 🤞for your daughter I hope all goes well with her biopsy stay strong & take care
Comments
What a joy for you Michelleanne with your granddaughter! I'm really pleased for you. It warms the cockles of my heart to hear that.
We're all doing so well in this terrible place even though it doesn't feel like it at all. We're still here. That's already saying something. We're fighters.
Love
Helen
🥰🥰🫶🏻🫶🏻❤️
So glad to hear that you had a lovely time with your little granddaughter, Michelle. Little ones are a wonderful distraction!
My daughter went to a haematology support group organised by Maggies today. Although everyone had different forms of blood cancer , she said it was good to speak to others and she was able to chat to someone about her second transplant as he is waiting for one.
Just wondering if there’s anything like this in your local areas? Xx
Hi audrey
they are a distraction , also tiring 😂 yes we have a maggies centre , we’ve met and talked to lots of people , with all different types of cancer
it’s scary really when you think , that is still going everyday people going through it ❤️
Hello Audrey, Dave, Michelleanne,
It's very different I think with a second transplant. I guess every sct is different. We're all on our own very different journeys.
I'm glad your daughter's found some strengthening support. It must be a real relief for you yourself too Audrey, great for her. I'm pleased for you all.
Ive just tried to get into the gvhd fb site and it seems elon musk has decided to charge for the service or we pay with ads and our private data. It's so disappointing.
I'll get off here. Today iy the end of week 1 with high dose cortisone cream and it seems to be working. I have to reduce dose from today so crossing fingers it'll continue.
Night night
Helen
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 fibrosis sclerotic skin. Let us hope. I hope everyone is getting better which sounds like most of you are. I found a post elsewhere on the site from 4/11 from Beaglegirl who writes like things are not going to plan at the moment for her husband. See text below I have copied
BEAGLEGIRL
Hi Everyone, Im so sorry to be posting here but I know that you’re all really lovely and supportive! My husband is in hospital again. I had a phone call at 5am this morning to say that security was called as he had become aggressive. He is hallucinating and being really nasty to staff. They have done another lumbar puncture as they have found white cells and protein in it. They are hoping it’s an infection but could be aml relapsed in the central nervous system. Please I need a miracle and some reassurance. I have no one with me and im absolutely heartbroken and sick with worry waiting for the results. He’s currently fast asleep thank goodness x
Thanks Dave,
That sounds awful for Beaglegirl and her hubby. Poor things. She knows where we are if she needs us.
I'll be having the uva1 too as of 16th. With the positive research results from it it looks like it might be a light of hope. It makes me smile, that would be wonderful, even if only tiny steps. We'll be dancing on the tables Dave.
I'll keep you posted about my ankles.
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 and Beaglegirl also.
Hi all
I hope this form of treatment really helps you
we are all different & it effects people different ways we can only support always
it sounds really awful for beaglegirl and her husband they are in my thoughts stay strong everyone much love ❤️
After just a week on the high dose cortisone cream, "momegalen, fett Creme
MomeGalen 1mg/g Fett Creme, from the company Galen.
I used it before but carried on walking with bandages and the bandages pulled the softened skin open. This time I've just been barefoot at home and the rare occasion I have to go out, wore my slippers with very soft socks. This time it seems to be working. My skin now needs to produce , generate normal skin and then I'll be ... walking:)
I think this might really help you Dave.
Every day wet, dab, wash without rubbing, the area , dab dry and whilst skin is moist apply the cortisone cream.
Sorry to put all these facts in here, this is usually my place for a quiet cuppa to share with you all. Now Facebook is charging I'm loathed to pay 13€ a month.
Love to you all,
Helen
Dave, have you subscribed to Facebook or do you take ads?
Have any of you got experience with the new Facebook conditions?
I really don't want to pay 13€ a month.
Night night all
Helen
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
Hello all,
It's good to have a break from fb. I only do the gvhd site, but it's really helpful for me.
I just wanted to let you know you're very much with me. Thank you. I'm with you.
How's things? How was the stand up scan Michelleanne?
With me, My skin is , feels, just the same but looks better after a week of cortisone and I'm curious about the uva1 on thursday. My physio yesterday was disappointing, more of the same, it's called lymph drainage but feels like light stroking shins. Money for old rope.
My eyes are better when I use the oily Bepanthen in them, but still not good. I'm still on the " get up at lunchtime" plan , which feels good. My mouth is really dry but as long as I don't need another tooth pulled, I'm happy.
I believe my brain is recovering. It feels different.
I hope your daughter is still stable Audrey And that you're enjoying the grandchildren. You too Michelleanne.
I hope the new light is working it's magic for you Dave.
Love to you all,
Helen
Hi helen
you sound brighter , I suppose things will feel the same with the physio as long as it works
I’m doing ok at the minute , not been out for a few days , as we’ve had a awful storm , strong winds and heavy rain , so I’ve sat and watched it through the window , while knitting
still having early nights and late mornings why rush 🙂
Sounds nice and cosy, enjoy x
Just got back from my first treatment day in the dermatology clinic.
I was supposed to get the uva1 light therapy but... interesting for you Dave, they won't give it to me because of my immunsuppressants. Perhaps you can ask your team Dave. They knew about PUVA and skin cancer risk but this was something else. Not because of my ecp.
Anyway, I'll get off here.
It was quite good but challenging. I'm sceptical but trust and hope can grow. 3x a week for 3 weeks.
Love
Helen
Hi helen
i really hope this works for you and you see a change ❤️
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.
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.
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 stop one or see if you can sign a waiver. I really think this treatment will be good for your issue from all similar issues that have used this treatment,.
Hi Dave
I'm not prepared to do the uva1 treatment if it increases my risk of skin cancer.
It's early days wigh the new regime so I'll give it somf time. There's no urgency or stress. Thanks for thf info on messenger. I look forward to reading it asap. If I can persuade my team I will. I think, after what you say, it's because I'm on highest dose of all the immunosuppressants.
Have good days, weekend all,
Love
Helen
Hello Everyone . I’m sorry that I haven’t been here for a wee while.
Weve been selling and clearing Paul’s house which has been so hard but we have to do it now .
My daughter hasn’t been well. She was dreadfully sick one night and since then nauseous and light headed . She thinks that it was food poisoning from a piece of fish that she ate which didn’t taste right. I’m hoping that this is the cause and thinking that she’s taking longer to recover because of lack of a working immune system. I’m always on high alert and worry so much.
Anyway, enough about me .
Michelle, I’m glad to hear that you are doing ok just now and late mornings and early nights sound ideal for this time of year.
Helen, it is so good to hear that the treatment that you are having seems to be working. I know that it’s early days but we can hear the positivity and lightening mood in your texts . I’m glad that Dave and you can give each other support with your similar issues .
Dave, I’m really sorry that you are struggling so much just now . I know that it must pull you down but what comes through in your texts is that you are trying everything possible and I’m sure that something will eventually help. It’s easy to say “ have patience “. We’d all feel the same but we’re with you and routing for you to turn the corner soon .
Beaglegirl, I do hope that your husband is making some progress. I know as a loved one of someone who is very ill that it’s so hard to be with them and not be able to take away their pain. You’re doing a marvellous job of just being there for your husband .
Well, all my friends , I hope today will bring you some relief and a little happiness knowing that everyone here is thinking about each other .
❤️❤️
Hello Audrey, no need for sorries, it's always good to hear from you, whenever. I'm sorry to hear that you've been busy sorting out your son's estate. It's so painful I can't go there. Please know you have my love, all the way from Germany.
Perhaps you can keep a record of any lightheaded spells your daughter has. I had one this morning but put it down to it being about an hour after taking my medication. I also would say I'm usually on mental standby mode. Being chronically ill has changed my mental pace and world. This morning I , only momentarily, lapsed into a dream... a sort of dejavu from the night. It's the first time it's happened, but it did worry me. It certainly is scary when the brain is involved. Poor Beaglegirl, let's hope she's in a calm space and her hubby is moving on.
As I've been feeling better recently it has made me realise, it's my brain that is noticeably recovering.. unfortunately my body is still struggling but it's my brain that has got back a bit of my 'flame', I feel that I can think again, I felt so emotional about it that I was in tears one morning, quite overwhelmed, but good overwhelmed. All those chemicals and radiotherapy, months, years of the stuff, along with those lifesaving stem cells which my body isn't getting along with. It's all understandable.
Your daughter is going to get through this Audrey. And I will too, in the end. Your daughter is younger so has considerably better chances.
Dave, how's your light treatment going? Are you noticing anything? It'd make my day if it did, even just a teeny bit.
If anyone's on Facebook gvhd, maybe they could give Ally Ryland my love... maybe Dave?
Michelle keep up the knitting. I hope you're cosy and warm.
Love to you all from the clinic. I only have Thursday off this week with my new dermatologie treatment and ECP.
Helen
Hi all
audrey it’s so devastating what has happened to your son , it’s no easy solution I just hope that one day you can be at peace with it all
sometimes I have sickness it just comes out of the blue , wether it’s because my immune system isn’t upto where it should be or not I don’t no , I’m going to see someone about so see what they say
i always suffer from lightheaded ness it’s like having a hangover without the alcohol
love to you all always thinking about you ❤️🫶🏻
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 to use as is only a hand scanner and it takes so many placements to cover all my legs and some of my waist. I had to do lots of calculations at the beginning based on my skin type, power of the bulb, distance bulb from skin to get a time of exposure on each placement so I did not burn skin or anything. So each placement is 2min 47 seconds. How sever I do wonder if I calculated it correctly and whether it is long enough time to have sufficient effect. However it seems correct with rough times in the manual. Many people seem to see signs of improvement early on however not sure yet and need to wait longer.
Audrey,
sooty about you having to sort out your sons house. It can’t of been easy for you and bringing back memories. Also your daughter maybe having GI gvhd which can be similar symptoms to what she has and can be accompanied also by runny stools. I hope for her it isn’t as it can go on for a long time and you generally need steroids to calm it down.
helen how are you feet improving with this new cream? Is the skin still softening and the wounds starting to heal?
michelle sorry you are also suffering stomach problems. I hope too you do not have GI gvhd for same reasons.
look after yourselves and stay safe
all my love to you all
Hello everyone and thank you for all of your compassionate texts despite the fact that you all have your own worries and problems
Michelle, I hope that they get to the bottom of your sick and lightheaded spells . Let us know how you get on please.
Helen, I’m so pleased that despite everything that you are going through physically, that you are getting stronger mentally. I’m sure that is half the battle . I really hope that the treatment you are having at the moment will help. You certainly deserve a break!
Dave, I so hope that your phototherapy device helps and that perhaps you are beginning to see a little improvement soon. You keep trying new things to help you , never giving up and frustratingly slow as it seems, I’m sure that one day you’ll reflect and think “ this is better than it was”.
I so hope my daughter doesn’t have gvhd. She has been doing so well that hopefully this is just a hiccup. She had to hand in a stool sample today and has her next biopsy on Friday. Always a tense time!
Well my friends, im sending all my positive wishes that the next few days will go smoothly for you all.
Take care
Audrey xx
Hi audrey
i have gvhd in my mouth , throat and chest with medication it’s manageable , 🤞for your daughter I hope all goes well with her biopsy stay strong & take care
much love ❤️
Hello you lovely lot
Just wanted to wish you all a happy , peaceful weekend,
We're a good team. Thank you for everything, and that is more than you think.
Helen
Hi , I feel the same as you helen
You are all very special ❤️
Hi Everyone- I’ll second your sentiments, Helen and Michelle. we’re definitely here for each other .
Happy weekend . Xx