Hi Everyone, hope you are all well. Sorry to keep jumping in on your posts but reading them you have been all through so much and are so supportive. Please I need a lot of support. I’m sorry if this upsets anyone but my word is literally falling apart. My husband has had a second transplant Nov 22 and his levels have never been great. M today we thought we would have better news as he is feeling a little better but his levels are HG 68 platelets 30 neut 0.4 and bc 0.6 the doctor has said to do a bone marrow biopsy today. If it is a relapse aparrently there is nothing they can do and he has got weeks to live. Please please I need someone to help as I don’t know what to do. Sorry if I have upset anyone with this post x
That sounds very very scary. It's great that you asked for help, well done! I can't help you, and there's no magic Wand anywhere, which is exactly what I'd like to send you. You are waiting for results, from his biopsy, that's hard too.
He might well make it through. Maybe not. I want you both to enjoy some close and peaceful moments together in this very special intensive time. It would be a shame if panic blinded you both from enjoying your very special relationship.
I have a deep regret in my life and it's that I didn't say goodbye to someone, the most special person in my life, with peaceful loving trust. I said goodbye in a way others expected it. Love yourself especially now and your love for your partner will feel closer and emotional doors will open, sad ones and warming ones. Love is felt through sadness and pain, so it's all painful because your love is so strong. Let it out, when appropriate, even though it feels REALLY scary.
I lost my best clinic room bed neighbour whilst I was in the clinic for 8 months. Frau Born, we grew to love each other, she passed. There was so much pain all around. Tears are love in liquid form. Hopefully this time will be his memorable low point and it'll bring you even closer together.
Thank goodness he has a good team.
All of our warm, kind and supportive feelings are with you Beaglegirl, whether we're writing to you or not. Please take us with you wherever you are, in your mind, and chat to us in your mind. You know what we would say, it's like having a best friend to talk to in your pocket, it's really helpful.
I'm going to press send and hope that my message brings you some calm.
Thankyou for everyone’s comments. I have spoken to the patient support line today and they were so nice but it’s not helped. I’m just having panic attacks pretty much all day and I cannot stop crying in front of him. I feel awful but I keep telling him I can’t live life without him. I pray to god that the results are that there is no leukaemia.
i can only imagine how you feel I also cried a lot , when I went through it , is there no one else you can talk too , try and stay in the moment I know how hard it is deep breath and try and talk and think how you’re husband is feeling I bet he will be feeling just like you
I agree with Michelleanne, it'd be good if you could find someone to talk to. Ask the nurses, they must have some sort of service.
I can't imagine what you're going through. It's ok to cry, in front of him too. It's a good idea to try and think how he's feeling though, to help you keep calm. Be kind to yourself Beaglegirl. Try and be in the moment. You've often been with me today. I'm sending you a hug.
Make sure you're getting enough sleep, even if with medical support, and don't forget to eat and try get a walk in to, just round the block. You need to be able to function physically for him. ... and you.
I’m sorry to keep posting but I’m tearing my hair out with worry. Some might have read my post about my husbands levels dropping after his 2nd transplant. I have been looking online I know you shouldn’t but I have read the mycophenolatemofetil
can cause anaemia/dry mouth/cough etc and he has all these symptoms. I’ve read on his first discharge letter he should have 500mg tablets 2 twice a day so 2000mg and on his recent chart it says dose 1000mg? However, on the box it says take 2 tablets : times a day which is 3000mg. Is this what could be the problem?? Has anyone else been on this medication as I would like to know what dose others are on. I’ll be in the phone for his morning to check. I’m praying to gos this could be the answer and not the relapse with think as there are no more treatments
For all those that left kind messages of support about my husband following the recent post. We have the results there is NO Leaukamia in his bone marrow it is NOT a relapse!! Love to you all and keep fighting as there is hope and some one upstairs is looking down on us today ****
I never look anything up as it frightens me , that news is wonderful I’m so pleased for you both , now give him a big hug and have a good cry of relief
I take myfortic 2x day. You can Google it, it might be the active ingredient you mentioned. My team stopped it abruptly end of January and i was in acute pain with a significant flare up within 4 ....5 weeks of not taking it. Check it out for him if that's what he's taking. He needs the correct dosage. Speak to his team with your questions about it.
i am sorry that I have been out of action while you have been going through this horrific time . I am so very happy to hear that it is not a relapse .
I was going to say to you that when my daughter was extremely ill after her second transplant we were told to prepare for the worst. My son had just been knocked down and killed and because my daughter was so unwell, I had to smile and keep positive with her even though I was sobbing inside. It was my friends on this group chat who helped me get through these horrendous days .
I think the others will agree that the recovery is such an up and down journey. I have started to embrace the good results and have faith in the medical team and my daughter’s remarkable inner strength in order to keep going during the worrying times .
Like yourself, I am the loved one of a sufferer and I know how difficult the bad times are - the fear, the panic . Please remember we’re all here for each other and you can chat with us whenever.
i hope that the next few weeks sees your husband growing in strength and you can get some much needed rest. As Helen said, you need to look after yourself in order to support your loved one . Xx
lovely to hear from you I totally agree with what you say , you need to have faith in you’re medical team , how’s you’re daughter doing , hope she is doing better
it is like been on a roller coaster that’s why I take each day as it comes and enjoy life even on hard days
Thankyou so much for everyone’s support. Audrey I’m so sorry to hear about your son. That must of been the most painful thing to deal with especially when your daughter is so poorly. Thankyou Michelle and Helen too. I’ve enjoyed my Saturday out with my horses and dogs. It was so nice to have a huge weight lifted for a moment. Live to you all and hope everyone continues in good health xx
you have a lot of good times to look forward too with your husband , if he’s like me it’s just a slower pace and a totally different way , calmer , peaceful and so content , it doesn’t bother me going shopping , I enjoy being outside ,I feel at this moment even on a bad day I can take on the world
I wish you both the same please keep in touch you’re one of us now 😂
well another kick in the face today. Martins counts are still a little sluggish and the biopsy sample wasn’t a great sample. It’s. Showing 2% blasts remission but due to the bone marrow being abit empty they have booked another in 4wks. I’m terrified that the leukaemia could be in there but I’m feeling so negative I don’t know what to think anymore. If it was there it would be in the not so great sample wouldn’t it? I don’t think I can keep sane for another 4wks. They have dropped his tablets as they said it might be that? Can we be that lucky 💔
sorry you have received this news which could be classed as worrying. Unfortunately when your body goes through so much chemo, drugs ets the bone marrow becomes not such good quality and takes a long time to recover. The more treatments you have the longer it takes to recover. I too had some not so good biopsies so they had to rely on other ones. Unfortunately for your husband I can say it is not a very pleasant experience. I do hope though your husbands nuetraphils do pick up a bit as they did look rather low. I know though with sct the results are very up and down after a transplant. It does take a long time to recover. I do wish you hope for a better set of biopsy results next time and I will be praying with you. Stay positive and keep fighting. I am continually fighting. Again my wishes are with you, your family and husband and am praying for a more positive next biopsy.
It is such a tortuous journey we're all on. You are being very strong, and feeling that "I am not strong" belongs to it. You are!
I'm glad Dave has been able to give you some input about values. Try to work out how you can help yourself, in any way, shape or form, get through the 4 weeks. It's a mammoth task, but remember you're not alone. This journey is paved with horrible frightening waiting times for almost all of us. It's part of our journey. You are together with us. You and hubby are in our minds and hearts and we hope that you can both feel that.
So, dear Beaglegirl, dear team, Audrey, Dave, Michelleanne,
Thank you all for being there. You help me so much. I'm not alone in this cruel place.
Beaglegirl, I am so sorry that you are going through so much worry with your husband. I can imagine how you are feeling as I have gone through so much with my daughter. You will keep worrying until he takes a step forward but please keep listening to the three wonderful people who are sharing their experiences and giving you the support that you need just now. When my daughter was at her worst , I tried to focus on the knowledge that she had the best medical team and they were trying everything and would keep trying until they got the positive results that they were working towards.
As the others have said, the recovery journey is a roller coaster . I found that making a big effort to speak positively to my daughter during the dark times helped a bit.
Michelle, Helen and Dave. I constantly think about you and I am in awe of all of your fight, determination and acceptance of some of the changes that this illness has thrown at you.
Hope you are all well. Beaglegirl I hope things are improving / stabilising for your husband. The gvhd road is a long road. Michelle, I too hope your daughter is picking up although I understand from experience the recovery can be very slow.
Audrey, I hope you are doing well and making improvement day by day. You seem to be the toughest of us all or can cope with everything more easily.
Helen I hope you are well also and the new cream is starting to work for you.
I just had 2 days of Ecp and feel not so good. Seem to feel a lot more fatigued lately, my mobility is really bad, skin / muscles really tight. It has now been 5 weeks since my Rituximab infusion so becoming more convinced it is not going to work for me.
Anyway my main purpose was to send my love to all and to say thinking of you all and hope you are all gradually improving in mind and body.
dave , I’m so sorry to hear that things aren’t going so well , I hope and pray you get some improvement soon , I too have muscle tightness my g.p has given me compression stockings , they aren’t the most flattering of things , but they make us laugh .
im having a few issues with my blood , so having regular tests at the minute , I do try and keep positive , some nights when I’m ticking and can’t sleep I cry a lot in my pillow
hope things are going well for you helen , audrey and beagle girl
today is my 60 th birthday I’ve thanked god at 4 o clock this morning for still being here
I’ll raise a cup of coffee to you all while I celebrate
Hi Michelle and a very Happy 60th Birthday to you. I hope that you’ve had the best day possible .
This illness is so cruel and puts you all through so much. You are bound to have lows and I think that you do remarkably well to always pick yourselves up and soldier on. Not only that but the help and support that you give to myself and each other is invaluable .
Please, all of you, don’t be too hard on yourselves . You have every right to feel down sometimes and then I know that you’ll pick yourself up again and fight another day .
Love to everyone and a special birthday hug to Michelle. Xx
Hi Helen . Sending lots of hugs and positive thoughts that things get a bit better for you soon. It’s such a hard illness with so many ups and downs . We’re all here for you and I want you to know that you are in my thoughts .xx
Comments
Hi helen
i hope you all get in a happy place always here to chat
❤️
Hi Everyone, hope you are all well. Sorry to keep jumping in on your posts but reading them you have been all through so much and are so supportive. Please I need a lot of support. I’m sorry if this upsets anyone but my word is literally falling apart. My husband has had a second transplant Nov 22 and his levels have never been great. M today we thought we would have better news as he is feeling a little better but his levels are HG 68 platelets 30 neut 0.4 and bc 0.6 the doctor has said to do a bone marrow biopsy today. If it is a relapse aparrently there is nothing they can do and he has got weeks to live. Please please I need someone to help as I don’t know what to do. Sorry if I have upset anyone with this post x
Hello Beaglegirl,
That sounds very very scary. It's great that you asked for help, well done! I can't help you, and there's no magic Wand anywhere, which is exactly what I'd like to send you. You are waiting for results, from his biopsy, that's hard too.
He might well make it through. Maybe not. I want you both to enjoy some close and peaceful moments together in this very special intensive time. It would be a shame if panic blinded you both from enjoying your very special relationship.
I have a deep regret in my life and it's that I didn't say goodbye to someone, the most special person in my life, with peaceful loving trust. I said goodbye in a way others expected it. Love yourself especially now and your love for your partner will feel closer and emotional doors will open, sad ones and warming ones. Love is felt through sadness and pain, so it's all painful because your love is so strong. Let it out, when appropriate, even though it feels REALLY scary.
I lost my best clinic room bed neighbour whilst I was in the clinic for 8 months. Frau Born, we grew to love each other, she passed. There was so much pain all around. Tears are love in liquid form. Hopefully this time will be his memorable low point and it'll bring you even closer together.
Thank goodness he has a good team.
All of our warm, kind and supportive feelings are with you Beaglegirl, whether we're writing to you or not. Please take us with you wherever you are, in your mind, and chat to us in your mind. You know what we would say, it's like having a best friend to talk to in your pocket, it's really helpful.
I'm going to press send and hope that my message brings you some calm.
Love Helen
PS. I can't help with blood values.
Hi beagle girl
dont be sorry for jumping in , these chats are for everyone
so sorry to hear about you’re husband I don’t understand numbers and levels , I can’t help with medical issues , but I will listen and support you
i pray and hope things go ok , take each day as it comes try and enjoy each day
I send you all my love and prayers always here for you
❤️
Thankyou for everyone’s comments. I have spoken to the patient support line today and they were so nice but it’s not helped. I’m just having panic attacks pretty much all day and I cannot stop crying in front of him. I feel awful but I keep telling him I can’t live life without him. I pray to god that the results are that there is no leukaemia.
Hi
i can only imagine how you feel I also cried a lot , when I went through it , is there no one else you can talk too , try and stay in the moment I know how hard it is deep breath and try and talk and think how you’re husband is feeling I bet he will be feeling just like you
thinking of you both keep strong ❤️
I agree with Michelleanne, it'd be good if you could find someone to talk to. Ask the nurses, they must have some sort of service.
I can't imagine what you're going through. It's ok to cry, in front of him too. It's a good idea to try and think how he's feeling though, to help you keep calm. Be kind to yourself Beaglegirl. Try and be in the moment. You've often been with me today. I'm sending you a hug.
Make sure you're getting enough sleep, even if with medical support, and don't forget to eat and try get a walk in to, just round the block. You need to be able to function physically for him. ... and you.
Love Helen
Hi
I totally agree with you helen , thinking of you both keep talking and loving yourselve I’m praying for you ❤️
Morning,
I’m sorry to keep posting but I’m tearing my hair out with worry. Some might have read my post about my husbands levels dropping after his 2nd transplant. I have been looking online I know you shouldn’t but I have read the mycophenolatemofetil
can cause anaemia/dry mouth/cough etc and he has all these symptoms. I’ve read on his first discharge letter he should have 500mg tablets 2 twice a day so 2000mg and on his recent chart it says dose 1000mg? However, on the box it says take 2 tablets : times a day which is 3000mg. Is this what could be the problem?? Has anyone else been on this medication as I would like to know what dose others are on. I’ll be in the phone for his morning to check. I’m praying to gos this could be the answer and not the relapse with think as there are no more treatments
For all those that left kind messages of support about my husband following the recent post. We have the results there is NO Leaukamia in his bone marrow it is NOT a relapse!! Love to you all and keep fighting as there is hope and some one upstairs is looking down on us today ****
Hi beagle girl
I never look anything up as it frightens me , that news is wonderful I’m so pleased for you both , now give him a big hug and have a good cry of relief
enjoy each day , always here if needed
take care ❤️🫶🏻
Brilliant news Beaglegirl. I'm relieved for you.
I take myfortic 2x day. You can Google it, it might be the active ingredient you mentioned. My team stopped it abruptly end of January and i was in acute pain with a significant flare up within 4 ....5 weeks of not taking it. Check it out for him if that's what he's taking. He needs the correct dosage. Speak to his team with your questions about it.
Love
Helen
Hello Beaglegirl
i am sorry that I have been out of action while you have been going through this horrific time . I am so very happy to hear that it is not a relapse .
I was going to say to you that when my daughter was extremely ill after her second transplant we were told to prepare for the worst. My son had just been knocked down and killed and because my daughter was so unwell, I had to smile and keep positive with her even though I was sobbing inside. It was my friends on this group chat who helped me get through these horrendous days .
I think the others will agree that the recovery is such an up and down journey. I have started to embrace the good results and have faith in the medical team and my daughter’s remarkable inner strength in order to keep going during the worrying times .
Like yourself, I am the loved one of a sufferer and I know how difficult the bad times are - the fear, the panic . Please remember we’re all here for each other and you can chat with us whenever.
i hope that the next few weeks sees your husband growing in strength and you can get some much needed rest. As Helen said, you need to look after yourself in order to support your loved one . Xx
Hi audrey
lovely to hear from you I totally agree with what you say , you need to have faith in you’re medical team , how’s you’re daughter doing , hope she is doing better
it is like been on a roller coaster that’s why I take each day as it comes and enjoy life even on hard days
🥰
Thankyou so much for everyone’s support. Audrey I’m so sorry to hear about your son. That must of been the most painful thing to deal with especially when your daughter is so poorly. Thankyou Michelle and Helen too. I’ve enjoyed my Saturday out with my horses and dogs. It was so nice to have a huge weight lifted for a moment. Live to you all and hope everyone continues in good health xx
Hi beagle girl
you have a lot of good times to look forward too with your husband , if he’s like me it’s just a slower pace and a totally different way , calmer , peaceful and so content , it doesn’t bother me going shopping , I enjoy being outside ,I feel at this moment even on a bad day I can take on the world
I wish you both the same please keep in touch you’re one of us now 😂
❤️
hi Everyone,
well another kick in the face today. Martins counts are still a little sluggish and the biopsy sample wasn’t a great sample. It’s. Showing 2% blasts remission but due to the bone marrow being abit empty they have booked another in 4wks. I’m terrified that the leukaemia could be in there but I’m feeling so negative I don’t know what to think anymore. If it was there it would be in the not so great sample wouldn’t it? I don’t think I can keep sane for another 4wks. They have dropped his tablets as they said it might be that? Can we be that lucky 💔
Hi Beaglegirl,
sorry you have received this news which could be classed as worrying. Unfortunately when your body goes through so much chemo, drugs ets the bone marrow becomes not such good quality and takes a long time to recover. The more treatments you have the longer it takes to recover. I too had some not so good biopsies so they had to rely on other ones. Unfortunately for your husband I can say it is not a very pleasant experience. I do hope though your husbands nuetraphils do pick up a bit as they did look rather low. I know though with sct the results are very up and down after a transplant. It does take a long time to recover. I do wish you hope for a better set of biopsy results next time and I will be praying with you. Stay positive and keep fighting. I am continually fighting. Again my wishes are with you, your family and husband and am praying for a more positive next biopsy.
Hi Beaglegirl
It is such a tortuous journey we're all on. You are being very strong, and feeling that "I am not strong" belongs to it. You are!
I'm glad Dave has been able to give you some input about values. Try to work out how you can help yourself, in any way, shape or form, get through the 4 weeks. It's a mammoth task, but remember you're not alone. This journey is paved with horrible frightening waiting times for almost all of us. It's part of our journey. You are together with us. You and hubby are in our minds and hearts and we hope that you can both feel that.
So, dear Beaglegirl, dear team, Audrey, Dave, Michelleanne,
Thank you all for being there. You help me so much. I'm not alone in this cruel place.
Love, Helen
Hi all
it is a very hard journey we go to get through this, our bodies and minds go through so much trauma ,
when we have all the tests before and afterward the waiting is the worst part
all you do is try and think positive I know it’s easier said than done
I had to have a top up from my donor to get my levels right , the venosections I have done knock me out aswell
nevermind keep fighting ,we will win the war ❤️
Hello everyone.
Beaglegirl, I am so sorry that you are going through so much worry with your husband. I can imagine how you are feeling as I have gone through so much with my daughter. You will keep worrying until he takes a step forward but please keep listening to the three wonderful people who are sharing their experiences and giving you the support that you need just now. When my daughter was at her worst , I tried to focus on the knowledge that she had the best medical team and they were trying everything and would keep trying until they got the positive results that they were working towards.
As the others have said, the recovery journey is a roller coaster . I found that making a big effort to speak positively to my daughter during the dark times helped a bit.
Michelle, Helen and Dave. I constantly think about you and I am in awe of all of your fight, determination and acceptance of some of the changes that this illness has thrown at you.
Im sending my love and support to everyone.
Audrey
Hi all,
Hope you are all well. Beaglegirl I hope things are improving / stabilising for your husband. The gvhd road is a long road. Michelle, I too hope your daughter is picking up although I understand from experience the recovery can be very slow.
Audrey, I hope you are doing well and making improvement day by day. You seem to be the toughest of us all or can cope with everything more easily.
Helen I hope you are well also and the new cream is starting to work for you.
I just had 2 days of Ecp and feel not so good. Seem to feel a lot more fatigued lately, my mobility is really bad, skin / muscles really tight. It has now been 5 weeks since my Rituximab infusion so becoming more convinced it is not going to work for me.
Anyway my main purpose was to send my love to all and to say thinking of you all and hope you are all gradually improving in mind and body.
Hi all
dave , I’m so sorry to hear that things aren’t going so well , I hope and pray you get some improvement soon , I too have muscle tightness my g.p has given me compression stockings , they aren’t the most flattering of things , but they make us laugh .
im having a few issues with my blood , so having regular tests at the minute , I do try and keep positive , some nights when I’m ticking and can’t sleep I cry a lot in my pillow
hope things are going well for you helen , audrey and beagle girl
today is my 60 th birthday I’ve thanked god at 4 o clock this morning for still being here
I’ll raise a cup of coffee to you all while I celebrate
lots of love take care ❤️
Hi Michelle and a very Happy 60th Birthday to you. I hope that you’ve had the best day possible .
This illness is so cruel and puts you all through so much. You are bound to have lows and I think that you do remarkably well to always pick yourselves up and soldier on. Not only that but the help and support that you give to myself and each other is invaluable .
Please, all of you, don’t be too hard on yourselves . You have every right to feel down sometimes and then I know that you’ll pick yourself up again and fight another day .
Love to everyone and a special birthday hug to Michelle. Xx
Happy birthday yesterday Michelleanne!
Not doing so well at the moment. Took painkillers so I slept better last night. It is as it is. I just keep going.
Love to you all,
Helen
Hi Helen . Sending lots of hugs and positive thoughts that things get a bit better for you soon. It’s such a hard illness with so many ups and downs . We’re all here for you and I want you to know that you are in my thoughts .xx
Hi Michelle,
I am sorry like Helen for the belated birthday wishes. I like Helen am also not too good at the moment. Will try and catch up later.
Best wishes to you all.
Hi all
thankyou for your best wishes , I’m so sorry to hear you are both still feeling rough
I wish I could give you a big hug , keep positive , keep strong always in my thoughts and prayers
❤️
I had a good day yesterday. Hoping today is too.
Love and thanks to you all.
Helen