my daughter had a second biopsy yesterday. They’re planning on tapering her off the immune suppressants but will wait until the result of this second biopsy.
i do feel so desolate but must remain hopeful. I lost my son last August and I can’t lose my daughter .
my Daughter is amazingly strong and will fight this as she’s done all the way through her illness. You are all warriors here .
i pray everything goes well for you’re daughter , I know what a worrying time it is my tests came back like that ,so I had to have a bone marrow transplant ,
you have had it just as hard , you are also amazing and very strong always here for you lots of love & best wishes
you’re daughter has everything to fight for with such a lovely family
Hello Audrey, you're a real warrior yourself. I'm really impressed that your daughter's staying strong, even if only for her boys. She's marvellous. .. and so are you.
Thank you for updating us. We're with you, big hug and much love.
Helen
PS. She's already had her second stem cell, bone marrow, transplant Michelleanne.
I have just heard, and wanted you to know , that my daughters second biopsy results have come back and they are clear. I’m on cloud nine! I’m so so relieved that I want to cry.
I really hope that you are all having a better week, Helen and Dave with your gvhd and Michelle with your chest infection . Always thinking about you all.
superb news to you and your daughter. The news could not have been better for your daughter, you and your family. Now for us to hope her frecovery comes along nicely as is such a slow process. My eyes have started playing up again, dry, gritty and blurry vision so back on eye drops. It is probably on low end of steroids as I try to wean off them as last month I was on 5mg day, then two weeks ago down to 3.3mg and currently on 2.5mg day. Now freezing on 2.5 as I think my eyes may be a flare so want to see what happens. I am bearing up but hard as still next to no mobility.
Michelle and Audrey, hope you are both progressing well even if just small gains.
mall keep well and hopefully good news will continue for everyone.
What a relief! Your wonderful news has lifted me Auds. I'm still smiling. Thank you for updating us. A big hug to you and your daughter.
Dave, Shame about your eyes. Have you g0ot any painkillers that touch it? Morphine didn't help mine but paracetamol is good. I hope you're getting somewhere on your jakavi search. I guess direct contact with Novartis sounded the best option.
The mobility thing is really isolating. I guess driving is difficult too now with your eyes.
Sorry to hear that about your eyes Michelleanne. Are you on jakavi?
I'll get off here. I've had a challenging time last two, three weeks, a skin, eye flare up combined with the clinic cancelling my ecp treatment, so desperate for it next monday Tuesday. It'll be a four week gap, feel like a hero.
Audrey I guess celebrations are still in order. As well as the good news I hope your daughter has started improving. Has she been diagnosed with gvhd ? Mind you it may be a bit soon. Make sure she is fit and well and not on any immunosuppressants before she has all her lifetime vaccines again as these can cause gvhd flare ups. It was my covid and flu vaccines that flared up my initial gvhd.
Helen, sorry you are suffering at the moment, it seems to be a constant thing with gvhd. Sorry you have had skin and eye flare ups, my eyes either are gritty that make them sting and blurry. I am not sure parevetomol will help as not really in any pain. Most of the time I can hardly read as eyes so blurry. Do you actually get a pain that you require paracetamol for? On driving front I used to drive every day of my life, and now have not driven for over 2 years as so inflexible and sometimes so difficult to stand up due to muscle weakness and stiffness.
Michelle, I hope your eyes let up a bit for you soon. I guess over time we will all improve on the eye front. I guess ell as this seems to cause joint pain.it will all take time as does everything from gvhd. I get a bit of pain in hips as well, not sure if that is from the prednisone as well. I feel though I have not made progress in such a long while except that I have got down to 2.5mg prendisone and unfortunately my consultants say there are no immunosuppressants to sort my skin tightness problem. Only rezurock or Jakavi would help it but both not available in uk unless local trust pays and they say if they paid for each patient who needed it they would be bankrupt. So just hoping rezurock available soon. Bye all for now.
not sure what causes to joint pain , I’ve been told to just go to see my gp
i feel sad for you that you can’t get the medication you need , I hope they can find something to help you. I haven’t driven for 2 1/2 years I’ve no interest now, even going out I’m so tired and my joints ache I wonder it it’s worth it.
I am so sorry that you are all suffering with your eyes. The gvhd symptoms are so debilitating and I think you all do so well to get up each morning and keep moving forward.
Helen, I hope that your ecp treatment goes ahead next Tuesday and thaT your skin and eyes calm down soon.
Michelle, I’m sorry that you too are suffering with your eyes and having very painful hips . You’ve all been through so much that I wish with all my heart that you could all get a break from the side effects of all the treatment that you’ve had.
Dave, I know that you are having such a rough time and I think you are doing amazingly well to keep going and thank you for all your suggestions and support for us all when you are having such a challenging time .
my daughter’s consultant wants her to continue the immunoglobulin each month to help her immune system and is also going to gradually reduce the immunosuppressants. What a long hard journey you all have but you are getting there .
As always, I’m sending love and all my positive wishes that the gvhd becomes less aggressive and you all have a better few days .
This is becoming a special place for me. Thank you.
Yes, we're heros.
Just one thing, I've started a new daily pattern which seems to help. I get up, take all my tablets, eat something... anything, and then I go back to lie down for a few hours. I've started taking paracetamol for the skin/joint/ankle pain, and so when I finally get up second time, the paracetamol is working and makes the day easier.
This new routine was difficult because I'm not like that and don't want to automatically lie down for so long, but it's allowing all my meds to work and I think I underestimated how powerful their impact is on me.
There's quite a lot on the Facebook gvhd group at the moment about eyes.
Sending you all a big thank you for being there, through all this suffering. .. with a big portion of love and compassion too.
Have a good Sunday, at least it's a free day from all the therapies and appointments.
No, your not going mad Michelleanne, you made me smile. I'm writing this in the clinic.
Back on the machine tomorrow and then they've got me in for an appointment to talk about my flare up. .. legs, eyes. I bet they say there's nothing they can do.
So they told me they're reducing my ecp. I have argued as well as I can for a phase of stability first before they start reducing it. I'll be really disappointed if they do. I've really benefitted from the ecp. I can chat and engage and am not so low again, it'slike an upper. I really need it.
But one good thing was that my new doctor, mid to late 20s seems like a good listener. I'd like to say good communicator but I'll have to wait a bit to pass judgement there. At least he listened to me going through my list of questions and said he'd talk about my questions with colleagues. Watch this space:)
I hope you're doing ok Dave. I've got a bit of an understanding for your perspective on not getting the jakavi. I can't allow myself to get angry yet, I need my energy to stay on the case. Maybe it'll never happen.
Anyway, I'm back home and on the sofa. Life goes on.
I understand what it is like to have such bruised arms. It happens to me each time I get Ecp one needle in one arm and one in the other and the old bruises never heal before the new ones start. Do you find your circulation of worse since having a Bmt as I often feel I am cutting off my circulation. Good news Helen you got your Ecp today but I cannot believe they are not wanting it to continue. Doom skin issues are not improved with Ecp for over a year of treatment. I find all very hard wondering if my skin tightness will ever improve without the help of Jakavi or rezurock and I don’t want to remain as I am. Even though I find it so hard my thoughts are with you all and that we will all gradually improve. Audrey I hope your daughter is improving and hope she will be home soon if she is not now.
I can understand how frustrated you are! Let us hope they change thier decision and continue with the Ecp especially seeing that skin conditions don’t any change until about a year of Ecp treatments. I have got to admit it is the only time I get a bit of time to speak to anyone.
Hello everyone . I’m so sorry that you’re all having such a tough time but I’m in awe of you all - talking about how you feel and being so supportive to each other ( including myself) .
Helen, I really hope that they listen to you and will continue with the ecp. Keep at them until they see it from your side of the picture.
Michelle - I can imagine how fed up you are with all the needles and bruises. I find it very hard when I watch my daughter going through all of this .
And Dave - we all know how difficult things are for you at the moment. You are a special part of this group and we are here for you as much as you are here for us.
im happy to say that my daughter seems to be doing a bit better at the moment. She’s home with her wee boys . She looks so tired but doesn’t complain. I suppose a 3 and 5 year would tire out a healthy person!
I so wish I could wave a magic wand and lift all the side effects from this illness away from you all. However, with all your strength of character and determination, you will get there .
Thank you for including me in this group. You have all kept me grounded when sheer panic was about to take over .
Look after yourselves and enjoy a peaceful Sunday . Xx
audrey I’m so pleased for you and you’re daughter and her family that things are going well it’s lovely to hear , we have 3 grandchildren 9 , 4 and 18 months they are always on the go and tire me but we enjoy them so much .
helen hope things are going ok and they are listening to you
Dave how are you ? Always here for you
I was at a celebration of Life yesterday it was 40 years of transplants at the hospital I had mine it was lovely to see all the people who looked after me and speak to other patients.
I'm really pleased to hear your daughter's in a better phase Auds. That's very special news. Thank you.
A life festival sounds like it would do me good at the moment and help me focus on the positive Michelleanne. Pleased you approached it positively. You are so blessed with your grandchildren, I'm very very pleased for you. I'd love one myself I must admit, would never tell my children that.
Hi Dave, haven't heard from you for a while. Hope you're ok. Sending you best wishes,
Comments
Hello Audrey, I'm thinking of you, sending you a big hug, compassion and love.
I can't imagine how you're coping. Words can't help, but I'm holding your hand.
Love
Helen
Thank you Helen.
my daughter had a second biopsy yesterday. They’re planning on tapering her off the immune suppressants but will wait until the result of this second biopsy.
i do feel so desolate but must remain hopeful. I lost my son last August and I can’t lose my daughter .
my Daughter is amazingly strong and will fight this as she’s done all the way through her illness. You are all warriors here .
Audrey xx
Hi audrey
i pray everything goes well for you’re daughter , I know what a worrying time it is my tests came back like that ,so I had to have a bone marrow transplant ,
you have had it just as hard , you are also amazing and very strong always here for you lots of love & best wishes
you’re daughter has everything to fight for with such a lovely family
keep strong take care much love
you’ll never walk this fight alone
michelleanne xx
Hello Audrey, you're a real warrior yourself. I'm really impressed that your daughter's staying strong, even if only for her boys. She's marvellous. .. and so are you.
Thank you for updating us. We're with you, big hug and much love.
Helen
PS. She's already had her second stem cell, bone marrow, transplant Michelleanne.
Thank you both so much for caring about us. We will both fight this illness.
i hope that you are both having a good weekend and enjoyed todays sunshine
xx
Hi audrey
always here for you , please keep in touch
xx
Hello dear Audrey,
we are with you,
Big hug,
Helen
Hello my friends
Thank you for all your kind messages and support.
I have just heard, and wanted you to know , that my daughters second biopsy results have come back and they are clear. I’m on cloud nine! I’m so so relieved that I want to cry.
I really hope that you are all having a better week, Helen and Dave with your gvhd and Michelle with your chest infection . Always thinking about you all.
love Audrey
Hi audrey
that news is wonderful , you and you’re family have been in my thoughts a lot this week , I know how you feel you have a good cry
you must release it , at least it’s for happy news
lots of love and best wishes you’ve made my day
give you’re daughter a big bear hug from me and my family , and her to hug you very tightly
😍😘🥰🥳🥳
michelleanne
Thank you so much, Michelle.
I’m sending a big hug to you and Helen and Dave xx
Hi Audrey and all,
superb news to you and your daughter. The news could not have been better for your daughter, you and your family. Now for us to hope her frecovery comes along nicely as is such a slow process. My eyes have started playing up again, dry, gritty and blurry vision so back on eye drops. It is probably on low end of steroids as I try to wean off them as last month I was on 5mg day, then two weeks ago down to 3.3mg and currently on 2.5mg day. Now freezing on 2.5 as I think my eyes may be a flare so want to see what happens. I am bearing up but hard as still next to no mobility.
Michelle and Audrey, hope you are both progressing well even if just small gains.
mall keep well and hopefully good news will continue for everyone.
Hi all
dave I hope you start to improve soon , my eyes have started to feel very dry & gritty just in the last few months , awful pains in my hips .
always here for you if needed even just for a chat
Hope you are ok helen ?
best wishes
michelleanne
Hello All,
What a relief! Your wonderful news has lifted me Auds. I'm still smiling. Thank you for updating us. A big hug to you and your daughter.
Dave, Shame about your eyes. Have you g0ot any painkillers that touch it? Morphine didn't help mine but paracetamol is good. I hope you're getting somewhere on your jakavi search. I guess direct contact with Novartis sounded the best option.
The mobility thing is really isolating. I guess driving is difficult too now with your eyes.
Sorry to hear that about your eyes Michelleanne. Are you on jakavi?
I'll get off here. I've had a challenging time last two, three weeks, a skin, eye flare up combined with the clinic cancelling my ecp treatment, so desperate for it next monday Tuesday. It'll be a four week gap, feel like a hero.
Big hug to all, thanks for making my day Audrey,
Much love to all,
Helen
Hi helen
Sorry to hear you’ve had a challenging time there’s always something , hope you get sorted soon
I just take paracetamols I’ve been told to get eye drops , my skin is flaring up too
every achievement makes you feel good hope this continue
you all like super hero’s
xxx
Hi all, Audrey, Michelle. Helen,
Audrey I guess celebrations are still in order. As well as the good news I hope your daughter has started improving. Has she been diagnosed with gvhd ? Mind you it may be a bit soon. Make sure she is fit and well and not on any immunosuppressants before she has all her lifetime vaccines again as these can cause gvhd flare ups. It was my covid and flu vaccines that flared up my initial gvhd.
Helen, sorry you are suffering at the moment, it seems to be a constant thing with gvhd. Sorry you have had skin and eye flare ups, my eyes either are gritty that make them sting and blurry. I am not sure parevetomol will help as not really in any pain. Most of the time I can hardly read as eyes so blurry. Do you actually get a pain that you require paracetamol for? On driving front I used to drive every day of my life, and now have not driven for over 2 years as so inflexible and sometimes so difficult to stand up due to muscle weakness and stiffness.
Michelle, I hope your eyes let up a bit for you soon. I guess over time we will all improve on the eye front. I guess ell as this seems to cause joint pain.it will all take time as does everything from gvhd. I get a bit of pain in hips as well, not sure if that is from the prednisone as well. I feel though I have not made progress in such a long while except that I have got down to 2.5mg prendisone and unfortunately my consultants say there are no immunosuppressants to sort my skin tightness problem. Only rezurock or Jakavi would help it but both not available in uk unless local trust pays and they say if they paid for each patient who needed it they would be bankrupt. So just hoping rezurock available soon. Bye all for now.
Hi Dave
not sure what causes to joint pain , I’ve been told to just go to see my gp
i feel sad for you that you can’t get the medication you need , I hope they can find something to help you. I haven’t driven for 2 1/2 years I’ve no interest now, even going out I’m so tired and my joints ache I wonder it it’s worth it.
keep strong
xx
Hi everyone
I am so sorry that you are all suffering with your eyes. The gvhd symptoms are so debilitating and I think you all do so well to get up each morning and keep moving forward.
Helen, I hope that your ecp treatment goes ahead next Tuesday and thaT your skin and eyes calm down soon.
Michelle, I’m sorry that you too are suffering with your eyes and having very painful hips . You’ve all been through so much that I wish with all my heart that you could all get a break from the side effects of all the treatment that you’ve had.
Dave, I know that you are having such a rough time and I think you are doing amazingly well to keep going and thank you for all your suggestions and support for us all when you are having such a challenging time .
my daughter’s consultant wants her to continue the immunoglobulin each month to help her immune system and is also going to gradually reduce the immunosuppressants. What a long hard journey you all have but you are getting there .
As always, I’m sending love and all my positive wishes that the gvhd becomes less aggressive and you all have a better few days .
Audrey x
Hi audrey
it is a long journey , harder than I ever thought it would be , never mind at least we are all still here
enjoy everything anyway we can
hope things are going ok
love best wishes
xxx
Hello you lot,
This is becoming a special place for me. Thank you.
Yes, we're heros.
Just one thing, I've started a new daily pattern which seems to help. I get up, take all my tablets, eat something... anything, and then I go back to lie down for a few hours. I've started taking paracetamol for the skin/joint/ankle pain, and so when I finally get up second time, the paracetamol is working and makes the day easier.
This new routine was difficult because I'm not like that and don't want to automatically lie down for so long, but it's allowing all my meds to work and I think I underestimated how powerful their impact is on me.
There's quite a lot on the Facebook gvhd group at the moment about eyes.
Sending you all a big thank you for being there, through all this suffering. .. with a big portion of love and compassion too.
Have a good Sunday, at least it's a free day from all the therapies and appointments.
Helen
Hi all
weekends are lovely we don’t have to think about appointments
I do that with my meds , they always knock me out a bit I’m never up early
you have all made things better for me , we have a good little group here and hope it stays like that as it helps me so much
i know talking to you all I’m not going mad thankyou for being there
keep strong
much love michelleanne
No, your not going mad Michelleanne, you made me smile. I'm writing this in the clinic.
Back on the machine tomorrow and then they've got me in for an appointment to talk about my flare up. .. legs, eyes. I bet they say there's nothing they can do.
I'll say night night to you all, sleep well,
Helen
Hi helen
hope all went well at the clinic and everything goes well with everything else
thats what I get told , don’t be so hard on yourselve try light exercise but nothing works some days are better than others
night night god bless
xx
Hi all,
So they told me they're reducing my ecp. I have argued as well as I can for a phase of stability first before they start reducing it. I'll be really disappointed if they do. I've really benefitted from the ecp. I can chat and engage and am not so low again, it'slike an upper. I really need it.
But one good thing was that my new doctor, mid to late 20s seems like a good listener. I'd like to say good communicator but I'll have to wait a bit to pass judgement there. At least he listened to me going through my list of questions and said he'd talk about my questions with colleagues. Watch this space:)
I hope you're doing ok Dave. I've got a bit of an understanding for your perspective on not getting the jakavi. I can't allow myself to get angry yet, I need my energy to stay on the case. Maybe it'll never happen.
Anyway, I'm back home and on the sofa. Life goes on.
Love to you all,
Helen
Hi all
helen I do hope they listen to you and you get sorted
I don’t think they really understand they do the medical side but that’s all or that’s how I feel
please don’t get angry keep you’re energy for yourself I know it’s easier said than done
I was in hospital yesterday for my 5 week appointment for my venesection sick of it now my arms are a mess covered in painful bruises of the needles
hope you are ok Dave & audrey
take care much love
michelleanne
Hi all,
I understand what it is like to have such bruised arms. It happens to me each time I get Ecp one needle in one arm and one in the other and the old bruises never heal before the new ones start. Do you find your circulation of worse since having a Bmt as I often feel I am cutting off my circulation. Good news Helen you got your Ecp today but I cannot believe they are not wanting it to continue. Doom skin issues are not improved with Ecp for over a year of treatment. I find all very hard wondering if my skin tightness will ever improve without the help of Jakavi or rezurock and I don’t want to remain as I am. Even though I find it so hard my thoughts are with you all and that we will all gradually improve. Audrey I hope your daughter is improving and hope she will be home soon if she is not now.
love to you all
Hi Helen,
I can understand how frustrated you are! Let us hope they change thier decision and continue with the Ecp especially seeing that skin conditions don’t any change until about a year of Ecp treatments. I have got to admit it is the only time I get a bit of time to speak to anyone.
Hi dave
yeah I do my ankles and knees ache , mentioned it told to see gp , they say restless legs they ache so much
i memory is so poor some days I feel like I’m loosing the plot
I just take each day as it comes
always here to chat if needed
take care
xx
Hello everyone . I’m so sorry that you’re all having such a tough time but I’m in awe of you all - talking about how you feel and being so supportive to each other ( including myself) .
Helen, I really hope that they listen to you and will continue with the ecp. Keep at them until they see it from your side of the picture.
Michelle - I can imagine how fed up you are with all the needles and bruises. I find it very hard when I watch my daughter going through all of this .
And Dave - we all know how difficult things are for you at the moment. You are a special part of this group and we are here for you as much as you are here for us.
im happy to say that my daughter seems to be doing a bit better at the moment. She’s home with her wee boys . She looks so tired but doesn’t complain. I suppose a 3 and 5 year would tire out a healthy person!
I so wish I could wave a magic wand and lift all the side effects from this illness away from you all. However, with all your strength of character and determination, you will get there .
Thank you for including me in this group. You have all kept me grounded when sheer panic was about to take over .
Look after yourselves and enjoy a peaceful Sunday . Xx
Hi all
audrey I’m so pleased for you and you’re daughter and her family that things are going well it’s lovely to hear , we have 3 grandchildren 9 , 4 and 18 months they are always on the go and tire me but we enjoy them so much .
helen hope things are going ok and they are listening to you
Dave how are you ? Always here for you
I was at a celebration of Life yesterday it was 40 years of transplants at the hospital I had mine it was lovely to see all the people who looked after me and speak to other patients.
take care lots of love xx
Hello all,
I'm really pleased to hear your daughter's in a better phase Auds. That's very special news. Thank you.
A life festival sounds like it would do me good at the moment and help me focus on the positive Michelleanne. Pleased you approached it positively. You are so blessed with your grandchildren, I'm very very pleased for you. I'd love one myself I must admit, would never tell my children that.
Hi Dave, haven't heard from you for a while. Hope you're ok. Sending you best wishes,
Enjoy labour day all,
Love,
Helen