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chelle_16
Comments
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Hi Mex. Thats a shame about PIP. Glad you get part ESA. Sorry can't advise re; your role. Hopefuly someone will have some insight. Its a complicated situation for you. Michelle
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Hello Mex My name is Michelle and I am one of the Online Community Champions here to support patients. I hope your are doing well with the post transplant journey. Sorry to hear of the uncertanty you face. It can't be easy. My situation is a little different as prior to SCT i had been made redundant due to being unfit for…
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Hi Laulau1 Glad you didn't feel so rough the second time. I had my second pfizer 3 weeks qgo and was fine. I haven't done antibody test, i know a few people have been. I do however do lateral flows 2 times a week as I am almost back to normal in regards to going out. Normal for me is attending face to face appointments.…
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Hello Steve and all, I had my second vaccine yesterday. Pfizer which generaly speaking i have been fine with however Im run down and recovering from laryngitis so im feeling groggy any way ? A bit of a saw arm but not as bad as the first jab. Feeling fortunate to have had both already. All the best, Michelle
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Hello Mother AA I don't think we have interacted before, I am Michelle, one of the commumity champions, I started with the team last year. Great to have an update, thankyou for that. I have read through your previous posts and i can see what a challening time it has been for you and your teen. I am pleased to hear the GVHD…
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Hi Buffy Welcome to the forum. My name is Michelle, I am one of the community champions here to offer support. I am sorry to hear your brother still has disease present 50 days post transplant. Firstly, I can not advise regarding AML specificaly however as a transplant recipient my self I'm aware in some cases disease…
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Hi Laulau1 It is most definately a time of anxiety for many people especially those in the blood cancer/blood disorder communities. Rest assured you are not alone. I welcomed the lockdowns just as a form of distance for my own mental health and wellbeing after life had got really intense back in February of 2020. For…
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Hi mel, Yes medical knowledge and advancements have come on leaps and bounds. As has the knowledge of our medical personnel both at Anyhony Nolan and in hospitals. The body is really a wonderful and surprisingly very resilient yet complex being. Quite facinating really. Best Michelle
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Hi Mel I was a frequent flyer with neutropenic sepsis. Addmitted at least every 6 weeks because it was no longer manageable at home. Although every ones body responds differently to ailments. The team looking after your husband are probably seeking to free him of infection and then gain control of the neutropenia. Im not…
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Hi Mel. I am so pleased for your husband and you that it all went well. Seems the staff really suplortes you through the day, especially at the end of the day. I can relate to the l-o-n-g day but good to hear there was no immediate problems. Fingers crosses the electrolytes will help your husband too. We can feel quite…
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Hi Laulau1 What fab news about your 100% chimerism! What a mile stone. I hear that you feel frustrated with your breathlessness and feeling like it may be a step backwards. To reassure you most of us experience this at any point post SCT. For some it is directly related to decreased lung capacity and it can also be fatigue…
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Hi Mel I, like Laulau1 had pentamedine by neublizer for 4 years due to lymphoma and Histiocytosis. I had the same experience as Laulau1 sitting in a private room. Inhaling the Pent'neb It can be anxiety provoking for all changes, big or small. It's a new concept to wrap your head around, new meds and possible side effects.…
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Hi RussButler It sounds like a tough situation for you. It can be unsettling to develop new diagnosis' after 2 and half years post SCT. I am sure you are feeling frustrated but does knowing what your experiencing help in any way? I take pregabalin and it is a nerve pain killer so hopefully it will give you some relief. It…
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Hi Laulau1 Sorry to hear you have difficulties on the steroids. They are one of the challenging drugs to be on. I have been up and down on my immunesuppresants and 2 years post now. Every time i come off my skin GVHD flares up. I do notice I am fatigued in relation to breathlessness on activity and problems getting going.…
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Hi Hanna My GVHD was unusual as i experienced from quite early on. My team didn't diagnose it to begin with as I was on a opioid at the time that caused unrelenting itching too. So it become a process of elimination. Which sounds very much like what your son is going through? I had been experiencing dry skin but only face…
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Hi RussButler Sorry to hear you have had side effects but good you seeked a visit to the Hematologist. Fingers crossed it clears up It is intereating how the Oxford vaccine seems to be causing more symptoms for some in comparison to Pfizer. Keep us posted on how things go. Wishing you the best Michelle
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Hi Laulau1 I am well now thankyou . I use my experience to support others now. Yes! I relate to the fatigue. Glad you picked up after. Maybe the side effects of Mycophenlate out way those of steroids.(i am no expert) Let us know how you get on and what you decide regarding your reduction of steroid and how your symptoms…
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Hi Laulau1 I can't answer for Steve ? however i can empathise with your situation regarding the steroids and side effects combined with wanting to come off gradually but being concerned for any flares of GVHD. I was on Dexamthesine prior to SCT at 60mg a day. Which gave me an insatiable appetite. Like Steve mentioned I ate…
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Hi Meerkat Thankyou for your post. This is very insightful and helpful. On reflection I remember when I was between diagnosis' Non Hodgkin Lymphoma and Histiocytosis. The dietician on the liver ward (which is where i was taken due to liver faliure) didn't come to see me, just pushed hard on the suppliment drink which are…
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Hi Laulau1 I am unsure if your husband can have vaccine too. I know it is a frequently asked question amongst others and have heard from other communities that the person (husband/partner) can't have the vaccine and that they will be called up when it is there turn. Obviously that would differ if the other person was also…
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Glad that is helpful. Let us know how you get on.
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Hi Laulau1 I can only respond based on experience which is that if you have had a significant amount of weight loss then from what I am aware of it would be reccommended to consume healthy high calorie foods but you can do this in a balanced way. I know post treatment the reccomendation is to get your weight back to what…
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Hi all Inspiring Cameron. Encouraging also. Thank you for sharing how you experienced your journey with Cancer as a young person. This will be helpful for others to read. Our feelings and especialy those of younger people are completely valid. And i think it is important to experiemce those feelings or responses to…
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Hello Laulau1 Like Steve I haven't experienced discoloration of the skin. I do experience patches that are considered GVHD. What I have experienced in relation to skin changes is that if I bump myself and the skin brakes it doesn't heal as well. I am left with obvious scaring even if it is a small break to the skin like a…
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Hello All, I am now finally fizzing with pfizer. I had my vaccination yesterday at a community hub which I found very well organised and easy to be processed. The injection it self was no different to the flu vaccine and the last 24 hours have gone very well. No issues. I have more challenges with the flu jab than the…
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This is fab Steve. I got 'the' text this morning and managed to book this for Wednesday. I have to say for the frist time I had a genuine smile. Things dont feel quite as heavy knowing I will be put on the path to some immunity in the coming months. Good luck with yours Steve and to any one else that is due to be…
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Hi Steve Yes 'groundhog day' sounds just right. We are certainly all feeling the same right now. That is helpful in some respects to know that we aren't alone and that everyone is experiencing the same constraints with lockdown or isolation. Hope your day in the cabin goes well. All the best, Michelle
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Hello Steve Wow! 500 posts. Congrats! In the short time i have been volunteering along side you i have seen what amazing work and what a huge impact you have on those that are part of the patient and families forum. It's a pleasure to be alongside you in this community as a volunteer. I agree with the vaccine. I am more…
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Hi Bernie Thank you for sharing your experience. I am glad it went well for you despite the sore arm. I know that can happen with the flu jab too. All the best, Michelle
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Most deinfitely. I am 2 years post. Which is maddness as it feels like it was only yesterday I was on my Day 0 receiving cells. A day I am sure is engrained in all of us. Let us know how it is, the experience during and post. I think some insight would be great for others. It is advised to still shield after which that…