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chelle_16

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chelle_16
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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…
  • 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 specifica…
  • 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 an…
    in Shielding Comment by chelle_16 April 2
  • 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. …
  • 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 probabl…
  • 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. …
  • 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 …
  • 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.…
  • 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 pre…
  • 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 f…
    in Oral thrush Comment by chelle_16 March 6
  • 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 w…
  • 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. …
  • 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…
    in Weight Comment by chelle_16 February 16
  • 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 SC…
    in Weight Comment by chelle_16 February 16
  • 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 fal…
    in Weight Comment by chelle_16 February 13
  • 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 wh…
  • Glad that is helpful. Let us know how you get on.
    in Weight Comment by chelle_16 February 13
  • 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.…
    in Weight Comment by chelle_16 February 12
  • 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.…
  • 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 wel…
  • 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…
  • 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 mont…
  • 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. …
  • 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 along…
  • 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
  • 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 insi…
  • Hello Laulau1 I have not yet been called as my county is behind on setting up hubs and putting in support to vaccinate. I know counties are on target and some are a little behind. It is good you have been called up. How do you feel about i…
  • Hi Raka, Your more than welcome. Steve put it just perfectly "we all have something in common" no matter age. We can all relate to feeling exhausted, weak, down. It's one of the toughest journeys for your son and for you and the family too.…
  • Hello Raka I'm one of the Online Community Champions here on the forum. I was 29 when i got my transplant so abit older than a teenager 😉 As an adult it was tough dealing with feeling exhausted, weak and under the weather. As an adult i had…
  • Hi laulau1 Sorry to hear you are still struggling with your mouth. I had something similar during treatment and was treated with several antibiotics as Steve mentioned. Everyone is different with what they find useful when it is chronicly s…