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Rachel_LeadNurse
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Hi SJC, There are a lot of variables to consider when going into autologous stem cell transplant, the eGFR is just one of them. To reassure you, due to the nature of kidney disease associated with Multiple Myeloma there have been protocols designed to enable patients with renal impairment to still have an autologous…
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Dear SJC, I'm Rachel- Lead Nurse in Patient Services at Anthony Nolan. Due to the clinical nature of your query I thought I would post some information that may help you with your query. R-GDP can be used as both a treatment regimen for Lymphoma or something called a 'harvesting' regimen. If the chemotherapy is being given…
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Hi Will I'm very sorry to hear your update but excellent news that the chemo has worked and you're in remission. I wondered if a call might be easier to talk through all the questions you have around DLI? If you wanted to email me at lead.nurse@anthonynolan.org we could set this up. Alternatively you could call our enquiry…
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Dear Cheryl, Thank you for sharing your experience, it sounds like the last 18 months have been incredibly turbulent and I'm so sorry to hear of the difficulties Ryan faced and that you lost him after all of that. In amongst the very difficult treatment Ryan had, its lovely to hear that he managed to do some nice things…
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Hi AH67, I am Rachel, Lead Nurse here at Anthony Nolan. You're correct in summarising that the risk of a secondary cancer following a Stem Cell Transplant increases, this is often due to patients having received high doses of chemotherapy, radiotherapy and immunosuppression drugs. Ensuring patients undergo screening across…
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Hi Shelley5, I'm Rachel, Lead Nurse here at Anthony Nolan. I'm sorry to hear you've had this news and that there may be a delay to your husbands transplant as a result. I'm sure it's difficult to process, particularly when you've got the remission confirmed. I can't give you first hand experience of coping with this, as…
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Hi Otterfield, I'm Rachel, Lead Nurse here at Anthony Nolan. I'm sorry that you've had this news, I'm sure its been a difficult few days for you. If you would like to speak to someone in our team please do get in touch with the details Dan has provided above. We also have a great Telephone Emotional Support Service, in…
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Hi Anita, If you have had an Allograft then you would usually be advised to re-start childhood vaccinations 6 months after transplant. The timing should be confirmed by your transplant team for you individually as they'll know the details of any complications you may have encountered and current medication you are taking.…
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Hi Everyone, It's Rachel the Lead Nurse here at Anthony Nolan. It's really lovely to see you all supporting each other through all these difficult complications and emotions post-transplant. I just wanted to post some information regarding pain killers (analgesia) after reading Helen's comment about her worry using opiate…
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Hi Adrian62, I'm Rachel- lead nurse here at Anthony Nolan. I may need more information about your planned SCT to ensure I address your question fully- if you'd like to give me a call on the patient helpline on 0303 303 0303 then we can talk further. From what you have written here I think you are being offered the…
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Hi Gill, I'm Rachel- Lead Nurse here at Anthony Nolan. I'm pleased you've reached out to forum for some support, it sounds like you and your husband are going through a very difficult time at the moment. I'm sorry to hear he's so poorly. As you've outlined in your description of the situation, the reasons for some…
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Hi AH67, I'm Rachel- Lead Nurse here at Anthony Nolan. Thank you for your enquiry, it's a really important question to ask. The short answer is yes to both. There was recent guidance published from the British Society of Bone Marrow Transplant jointly with the Children's Cancer and Leukaemia Group and the British Infection…
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Hi Beaglegirl, His counts may well be affected as a result of being unwell with the high temperature, potassium is likely to be low if he's had vomiting/diarrhoea symptoms. I imagine he's not eaten very well while that's been going on either so they'll likely supplement the potassium with some IV fluids. I'm sure it is a…
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Hi Calum96, Thanks for reaching out to the forum for some advice. I am the Lead Nurse here at Anthony Nolan, I can't give you first hand experience from a patient perspective but hopefully I can offer some reassurance. It's great that you're monitoring your weight and it sounds like you're trying to work hard to prevent…
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Hi Will, Sorry to hear you've had a prolonged period of illnesses and thank you for reaching out to the forum for some advice. To date, there is limited literature and evidence about COVID-19 being a potential trigger for GvHD. We do know that infectious triggers or reactivation of viral infections may contribute to an…
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Hi Beaglegirl, thank you for reaching out to the forum for support. Hopefully you've been able to get more up to date test results since you posted last week? As I'm sure you've been told by your husbands BMT team a trend in blood results is more useful than a one off result and there are a number of variables to consider-…
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Hi Mel, I'm Rachel- Lead Nurse here at Anthony Nolan. Thank you for using the forum and for sharing the problems your husband and son are experiencing. I'm sorry to hear that you've had so much experience of stem cell transplant in one family, I'm sure its been a difficult couple of years for you all. The initial thought…
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Hi scaredy_cat, Thanks for reaching out to the forum for some advice. This is predominantly a peer support platform and I appreciate you are asking for other peoples experience but I wanted to reassure you, in my position as Lead Nurse. It sounds like the radiotherapy is targeted to your spleen with the specific aim of…
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Dear Damir, Nice to hear from you again, thank you for sharing your story about the post transplant complications you are experiencing. The problem with your adrenal gland falls under a wider group of complications called endocrinopathies- a dysfunction of the hormone glands. As you've mentioned this is as a result of the…
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Hi Damir, I assume you were offered the option of intravenous treatment in hospital, and this is what you declined? Have you been started on an oral regimen or is this what you're waiting to have confirmed. It sounds like you are looking after yourself well but please do contact your team or emergency line if you worsen, I…
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Hi Damir, My name is Rachel- Lead Nurse here at Anthony Nolan. Thanks for sharing your experience with the forum, I think it will be useful for patients to hear how your managing this and hopefully others will contribute to help you as well. I'm posting as I wanted to advise that you should be eligible for anti-viral or…
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Hi Rach I am Rachel- Lead Nurse for Anthony Nolan. This forum is for peer support but I saw your post and wanted to give some advice as its such a specialist area. Its great that you recall the advice regarding vaccinations after BMT- on the whole the advice is not to have any live vaccines following BMT and where they are…
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Hi Percy, I'm Rachel- Lead Nurse here at Anthony Nolan. Apologies not to reply to this sooner, I assume you have spoken to the hospital team and received clarification on your query now but I wanted to reassure you that the GCSF/Lenograstim injections would not have any interactions with the listed medications you already…
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Hi Ray, I'm Rachel- Lead Nurse here at Anthony Nolan. Thank you for sharing your experience, it sounds like it's been a tough few months and understandably it will take time to recover from all you've been through. I'm sure other patients on the forum will identify with what you've talked about and offer advice but I…
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Hi Audrey, I'm Rachel- Lead Nurse here at Anthony Nolan. The forum is here to support patients and their families at anytime in transplant so I'm really pleased to see you using it and asking questions to help you gain a better understanding of what your daughter is going through. I'm so sorry to read about what a…
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Hi Su0906, I'm Rachel, Lead Nurse for Anthony Nolan. Jakavi or Jakafi (Ruxolitinib) was given rapid approval by NICE at the commencement of the COVID pandemic for use in patients with steroid refractory GvHD. This approval has now ceased and we are working with NHS partners to establish if or when it will be available for…
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Hi Babs, I'm Rachel, Lead Nurse here at Anthony Nolan. I'm sorry to hear your daughter is having these complications. BK virus isn't uncommon after transplant and can be very painful for the patient. IV antibiotics and pain control are normal treatment, occasionally patients need to be admitted for intensive treatment. If…
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Hi Otterfield, I'm Rachel- Lead Nurse here at Anthony Nolan. I'm really pleased you've been able to some support from our forum, it is an understandably anxious time waiting for your transplant but it sounds like everything is going to plan. I wanted to get in touch to offer some reassurance regarding your hickman line…
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Hi Beaglegirl, I'm so sorry to read this update from you, I can only imagine what you and your husband are going through at the moment. It's an incredibly difficult situation to be in, particularly when you're waiting to see what the results are, to know what the next steps will be. As you've been made aware this is a rare…
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Hi GailW, I'm Rachel- Lead Nurse here at Anthony Nolan. I'm sorry to hear your husband is having such a difficult time with GvHD. Had you seen any improvement with his symptoms over the period he's been taking the Ruxolitinib? I'm assuming not as you mention his mobility worsening? As you've referenced in your post he's on…