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chelle_16
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Hi Sarah, When you receive the conditioning therapy, which is chemotherapy and/or radiotherapy (what you have is determined by your teams approach and what they feel is best for your condition). During that conditioning therapy and for some time after your white cell count will drop to a point where your body has no white…
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Hi Sarah I am glad to hear the forum has proved helpful. Yes you are correct, 3 to 6 weeks in hospital. Everyone's situation is unique and this will vary and time isolating/quarantining at home will be approximately 100 days. You will also return to the hospital where you had the transplant frequently, again this varies…
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Hello Sarah My name is Michelle and I am one of the Online Community Champions and Allo Stem Cell recipient for lymphoma and Histiocytosis. Firstly, you will discover the terms Bone Marrow Transplant and Stem Cell transplant are used interchangeably. I had my transplant in 2019 and although it was an incredibly challenging…
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Hello Moirplace My name is Michelle, like Steve, I am an online community champion and a SCT recipient. I had my transplant in 2019 and very early on my chimerism did not climb, i had a response that isn't seen that often, and due to my limited level of consciousness at the time, I can't recall medical statuses other than…
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Hi Julie Your strength shines through. It certainly is harder for family and friends, especially if they cannot seen you. I also had Gvhd of the skin and was treated with topical steroid creams and steroid washes. Which all helped resolve the problem. I wish you all the best and continued strength Best wishes Michelle
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Hello Julie Welcome. It is great that you have found the forum. My name is Michelle and I am one of the online community champions and an Allo stem cell recipient myself. I'm here to listen and support patients and families. You have had a very tough journey since 2017. I had my stem cell transplant in January 2019 and…
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Hello Glynis I echo all that Steve has mentioned. It is good to have a glimpse at others experiences, in terms of how their journey looked, so you can prepare your self emotionaly, be mindful we are all unique. Throughout your stay you can always message us here to get support too. When i was in having my SCT back in 2019,…
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Hello Gail My name is Michelle I am one of the online community champions working along side other volunteers such as Steve. I am also a SCT recipient. I have read back through your conversations and can see some very helpful and factual support provided by others. I haven't received Ruxolitinib so can't offer any…
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Hello Glynis My name is Michelle I am one of the community online champions, here to support patients and family members during treatment. I am also a stem cell recipient. Do you have specific concerns around your time in hospital? After your discussion with your consultant. It sounds as though your consultant has given…
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Hi Kirst Yes the engraftment would have been suppressed/impaired by the viruses. Its a shame and so incredibly frustrating for your husband and your self to have to go through this. It certainly takes its toll physicaly and emotionaly. Asking questions and seeking others experience is most definitely helpful. Sadly, the…
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Hello Kirst My name is Chelle and i am one of the online community champions, here to support patients and families, along side other online champions. I am also a stem cell transplant recipient What a journery your husband is on, i empathise with his experience of reaching +78 days and then contracting viruses and EBV…
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Hello Tom thankyou for the past very useful for new members. I wanted to take this oppotunity to introduce myself. My name is Michelle and I am one of thr Online Community Champions Tom mentioned. I had a stem cell transplant in 2019 and now 2 years post I am doing well. I had a rough journey with my first transplant…
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Hi Jpk My name is Michelle, a SCT recipient and one of the online community champions supporting patients and families going through cancer and SCT treatment journeys. Firstly, i wanted to acknolwedge the difficult time you are having and reassure you that we have Specialist Nurses here that can offer you some support and…
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Hello Lucy It is good to hear the dialogue is still in process. Your future clinic appointment will be a good opportunity to review things again. There is no one test that diagnosis skin gvhd, i don't think. There are blood levels that can meassure indicative markers but from my experience it was treated based on what i…
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Hello Lucyh1234 I am Michelle one of the Online Community Champions and a fellow SCT recipient. Sorry to hear of your skin challenges this last 2 months. Skin GvHD can look different from patient to patient. Some more severe than others. It is surprising how skin dryness can present. It is not always a visible red scaly…
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Hello Clare I know those especially going through treatment have understandable concerns especially around the effectiveness of the Vaccinations in those immuno surpressed. Myself, I am carrying on as I have been. Following strict measures with use of good hand hygiene, social distancing, using masks and utelising lateral…
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Hello Jenny My name is Michelle and I am one of the online community champions along side some other wonderful individuals and a SCT recipient. You are still very early in your recovery but sounds like you have been making huge strides in relation to coming off immunosuppresants. It is in some ways reasuring your receiving…
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Hi Lau lau Thank you. I was shocked to be honest. Yes i had pfizer. The report didn't go in to too much detail. It did tell me that i have IgG antibodies to the spike protein SARS-Cov-2. The test detects antibodies generated from exposure to the virus and the vaccine. I empathise with what your saying regarding doing more…
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Hi all. Hope we are doing well. How are we feeling about the relaxation on the 19th july? Some of us maybe feeling apprehensive about these final steps, especially if you are on treatment. I will be continuing to social distance and wear masks. I have the extra reasurance that my antibodies for Covid are >2500 and i do 2…
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Hello Mel Thank you for sharing how things have been for you and your husband of late. Empathising with your husbands continued chronic fatigue, breathlessness, dry skin, balance and sight challenges, these things can certainly make the spell of low mood valid. Although it seems he has a general predisposition to trying to…
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Hello Laura This sounds really positive. The steps you are taking are awesome. Trying to find your new normal in a changing world. Sorry to hear about your experience at the gardens. It is understandable that you had a moment. However it seems the meal at the restraunt went well. These small wins can lead to big gains. Its…
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Hi laura Thisnis great to hear. Thanks for sharing it here with us. So i have just opted to be out the sun so your discovery will come in handy. ? Best, Michelle
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Hi Mel and Hannah Although not a partner or carer, as a SCT recipient and online community champion i hope this fantastic new space gives you the space you so rightly stated can help with seeking supporting with the degree of things that can occur outside of consultations, clinical support and emotional support that maybe…
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Hi jess, Picc lines make a huge difference. The constant insertion of cannulas can be overwhelming and daunting for some. It does make your addmission easier and more accessible for medications when and if needed. We are all here to continue to support and encourage you throughout, as are the Anthony Nolan Telephone…
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Hi Jess Steve put it well in regards to positive mindset. I found it hard but once i was in my room on the ward, where i was very familiar with the staff and they knew me better than i knew myself at this point. Immediately i began even getting excited about have the cells on day 0. Im super nosey when it comes to…
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Hi Jess All your concerns are valid and im sorry it is all field with so much fear for you. In regards to your mouth, ice lollies helped me lots and i know one of the chemos during conditioning therapy, ice lollies are advised. Maintaining good oral health throughbout will help and there is plenty of oral mouth washes and…
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Hi Jesjesica1 Our bodies are weird yet wonderful things. We can't predict how our body will respond but having the right support and knowledge will help prepare you. Speak to your team (and Anthony Nolan Specialist Nurses) about those side effects both conditioning chemo, transplant and there after. Maybe ask your team…
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Hello Jesjesica1 My name is Michelle and like Steve, an online community champion. I am also a Stem cell recipient. Having had my transplant in 2019. What you describe was similar to my story. Relapsing after 3 months of treatment. I was introduced to the prospect of a stem cell transplant at that point but with no…
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Hi Laura, Sounds like you are doing you very best to ensure you are safe. I haven't done any anti-body tests but still doing the very minimum, like you have mentioned, quiet places, masks, hand gel and so on. I did form a support bubble with a friend, whicb is a house of 3 and we agreed to each do lateral flow tests the…