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Tom_AnthonyNolan
Hi Laulau,
Hope all's well. Thank you for your message.
I would recommend you check with your healthcare team before taking an antibody test. They will ensure you take a test that will give you a useful and relevant result when trying to determine the level of protection you have from COVID-19.
Blood Cancer UK has some updated information about antibody testing here which you might find useful: https://bloodcancer.org.uk/news/covid-vaccine-should-people-with-blood-cancer-get-an-antibody-test/
As always, please feel free to ask other patients on the Forum where they obtained their tests if you want to - but I would recommend you first check in with your healthcare team about this, if you have not already done so.
All the best,
Tom
Comments
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Hi Dave, Yes it's a step forward isn't it. Any wait for further treatment options is too long, but do keep checking in with your consultant re: approval in England & Wales, as it sounds as if NICE may make a decision by September. All the best, Tom
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Hi Dave, Helen and everyone following this discussion. I hope you are well. I'd like to draw your attention to my new Forum post entitled 'New GvHD treatment approved for use in Scotland' in case it is of interest. It's in the 'Long term recovery' category. All the best, Tom
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Hi Beaglegirl, It's Tom from Anthony Nolan's Patient Services team. It was good to talk to you on our Helpline just now. I'm so sorry to hear your husband's recovery from his transplant continues to be concerning. As mentioned, I recommend that you check in with his medical team today to ensure he's been taking the correct…
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Hi Kawazi, Thank you for your post. I’m Tom, the Head of Patient Information here at Anthony Nolan. You ask about stem cell therapy, and whether it could help someone with autism, such as your son. At Anthony Nolan, we support patients who are having a stem cell transplant to treat blood cancers and blood disorders. Stem…
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Hi Beaglegirl, I’m so sorry to hear that your husband has had a setback. It’s totally understandable that you would feel concerned about this. Please do continue to check in with your husband’s healthcare team as often as you can. They will clarify what his drop in neutrophils means for him, and what they are doing to…
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Hi Dave, Please accept my apologies for the delay in getting this update to you. I’ve just emailed it over as requested. Here’s a summary, for anyone else on the Forum who may also be interested: * Sadly ruxolitinib (Jakafi) is still not available in England. The reason: it is now a licensed medication for GvHD which means…
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Hi Beaglegirl, I’m Tom, from the Patient Services team here at Anthony Nolan. I’m so sorry to hear your husband is going through all this. Hopefully by now someone from his healthcare team has been able to give you an update on his treatment, and whether or not a bone marrow biopsy will be required. If they haven’t updated…
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Hi John, Thank you for your post. I realise that must have been very difficult for you to share with us. I have a response for you from my Anthony Nolan colleague Bindu: Dear Mr Shapter, I’m Bindu, the Head of Search and Donor Liaison here at Anthony Nolan. Thank you for your query in our Forum. Firstly, my primary…
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Hi Audrey, I hope all's well. I'm Tom, the Head of Patient Information here at Anthony Nolan. We have some information that you may find useful: The standard advice is to receive your 2nd Covid vaccine dose 8 weeks after your 1st dose. These are known as your 1st and 2nd full primary doses. This is probably why it is…
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Hi Mandy, I'm Tom in the Patient Services team here at Anthony Nolan. Thank you for joining the Forum. This must be an incredibly difficult time for your daughter and for your whole family. We hope all goes well with her recovery. I'm sure other Forum members will share their experiences soon. In the meantime you might…
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Hi Helen, It's Tom in the Anthony Nolan Patient Services team here. Just to reply to your question: BMT = bone marrow transplant Sometimes we also use SCT = stem cell transplant So many acronyms! Hope that helps, Tom
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Hi patrickamos, Thank you for your post. I'm Tom, in the Patient Services team here at Anthony Nolan. You mention the double COVID-19 vaccine booster. This is produced by Moderna and is called Spikevax. It targets both the original strain of COVID-19 plus the first Omicron variant (BA.1), which emerged last winter.…
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Hi Andrena, Welcome to the Forum. It's great to have you with us. Hopefully in time other Forum members with experience of CLL will be able to share their experience with you here. You may also find it useful to look at previous conversations about CLL here on the Forum. In the meantime don't forget we also have our…
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Hi Sarah, I hope all goes well with your Addenbrokes appointment. As well as Michelle's advice, we have a great page on our website which suggests some questions you may want to ask your team: www.anthonynolan.org/patients-and-families/preparing-a-stem-cell-transplant/meeting-your-consultant These are just ideas - hope you…
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Hi Laulau1, There is confusion around the 3rd vaccine dose, so hopefully this information will help: Anyone whose immune system was severely suppressed at the time they were vaccinated may also be offered a 3rd dose of COVID-19 vaccine. This includes anyone who had a stem cell transplant within the past 2 years. Your…
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Hi Lucy, Thanks for your post. I'm Tom from the Patient Services team at Anthony Nolan. I'm sorry to hear you're experiencing discomfort & are concerned you may have skin GvHD. As with anything we suspect may be GvHD, it's recommended to have it checked straight away. This will enable your team to identify any problem and…
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Hi Jenny, I hope all's well - it's Tom from Anthony Nolan here. I totally understand the easing of Covid restrictions around the UK is likely to be a concerning time, especially for anyone whose immune system is at all compromised. Michelle's given some fantastic practical advice in her post (thanks Michelle). We've put…
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Thanks very much Mel. And thanks to you & others for suggesting this category. We're extremely glad we've been able to expand the Patients & Families Forum in this way. All the best, Tom
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Hi Laura, Thank you for the update. I’m glad you’ve been able to discuss this with your specialist nurse. I hope you have a fantastic break. It’s clear you’re aware how to minimise the risk of contracting Covid and, as you say, the risk is much lower outdoors than indoors. Have a lovely time. As I say, there’s a great deal…
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Hi Laura, Hope you’re doing well. Thanks for updating us after your 2 x vaccine doses. The level of antibodies we have following vaccination can indicate the level of protection we have against Covid. But if no antibody response is detected, don’t panic - other cells may be giving you protection from Covid. This is because…
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Hi Gail, Thanks for your message. I’m so sorry to hear GvHD has been such a problem for your husband, this must have been incredibly difficult. I’m glad he’s responding well to his coronavirus vaccination. Here’s the latest information we have on MMR vaccination after stem cell transplant: Most importantly, as Steve says,…
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Hi mex, Thanks very much for your post. I hope you're feeling OK. I'm also keen to see the response and gain insight from other patients in similar employment situations. This post-lockdown period looks set to bring a number of challenges. In the meantime, Anthony Nolan works with advisers Working To Wellbeing to give info…
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Hi Buffy, I'm Tom in the Patient Services team here at Anthony Nolan. Thank you for letting us know about your brother. I hope he is feeling OK. It is normal for a medical team to monitor for disease after a bone marrow transplant. This ensures that if any leukaemia is detected, it can be treated quickly. As Steve and…
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Absolutely no problem Mel. I hope things settle down for your husband soon. Please get back to us anytime if we can help any further. Tom
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Hi Mel, My apologies - we've recently updated the Anthony Nolan website & the link to that online letter re: neutropenic sepsis was accidentally broken. It has now been restored. 1) Simply follow this link to the Anthony Nolan letter ? https://bit.ly/3rEVFDm 2) In the two blank areas, add the name of your transplant centre…
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Hi Laulau1, Thanks for your post. It’s Tom from the Patient Services team here. I’m really glad to hear you’ve received your first COVID-19 vaccine, that’s great news. You asked whether your husband can also be prioritised for COVID-19 vaccine. The current situation is exactly as Michelle describes: unfortunately family…
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That's fantastic news Steve! Hope it goes well. Tom
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Hi - I hope you are all OK. At Anthony Nolan we've received a number of questions about prioritisation for the Covid vaccine. We address this on our Covid webpage (www.anthonynolan.org/covid) and I've shared our answer here in case you find it useful: ‘As a stem cell transplant recipient will I be prioritised for a Covid…
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Hi AH67 & Steve, I hope you're well. After discussion with our medical director and consultant haematologists we have the latest information on COVID-19 vaccines for stem cell transplant patients and their families. We're updating the information regularly on our webpage www.anthonynolan.org/coronavirus so do keep an eye…
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Hi AH67, Thank you for your questions re: the suitability of COVID-19 vaccines for stem cell transplant patients. The data we have on the current trial vaccines is not specific to stem cell transplant recipients. However we are in the process of gathering that information from our medical director and a consultant…