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Hi Jane Sorry you’ve experienced the horrors of AML my son was diagnosed in Sept 2016 , as Hayley says take it a day at a time I ve learned to live in hope not fear ...my husband died in 2013 so it’s me as he’s main carer it’s not easy but you find ways to cope . I wish you and your husband all the best and use the…
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Bless you Jane with you all the way and as you say it’s great to hear from Rob and he’s ongoing success , keep in touch , Christine x
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Hi All, Mandy and Jane particularly I hope the bone marrow went as planned and fingers crossed for positive results for Sean . What great news Jane let’s hope all goes well in your tests to come . My son was discharged as I said unfortunetly he had contracted CDiff in hospital and was becoming quite unwell at home we’ve…
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Detailed results from bone marrow show no disease phew , so discharged today now just to get over the last virus and associated problems and onto donor lymphocyte infusion to boost ...fingers crossed and so the wheel turns . Much love to all x
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Thanks Steve appreciated , the roller coaster continues for sure but he’s on track . I hope all is well with Mandy and Jane and that your doing well too. I keep this thread going to bring hope to others it’s a tough ride but can be done Much love Christine
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Just had good news consultant just came in preliminary results under microscope is looking positive ,,,chimerism 100% his donor ...so onward and upward this looks like it’s been either bacteria or virus phew.......love to all x
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Update , Bob was son was doing so well unfortunetly over Easter family had ill health and Bob became unwell too. Finally needed hospital admission last sat now on IV taz nothing specific determined on the bloods but CRP inflammatory markers are raised although starting to come down slightly . He’s had bone marrow today and…
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Update Bob my son has been discharged his neutrophils are up out of neutropenic state and still climbing . He’s mobility is improving daily and fighting back so we’re on the up ...has a infection in his line but once out all resumed normal state ...bone marrow in the next week or so fingers crossed for that then on to DLI…
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It’s been a difficult few weeks my son Bob entered the latest round of chemo 23 days ago cytarabine a high dose by all accounts six infusions in all. By the second he was experiencing a neuropathy of type and ataxia the neuropathy rose rapidly up his body until he’s chemo stopped a feeling of numbness no feeling .…
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Hi All, the regime presently is pretty tough high concentration because he’s young enough to take it were told 6 doses spread over six days . Just as well because he was quite unwell after the first two it’s given over four hours a gap of 12 then another of four hours hefty regime bless him . It’s knocked him for six but…
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Mandy I hope so too it’s tough but I’ve found taking each day as it comes helps as does these forums and leukaemia care . Living in hope not fear although that’s easier said than done some days fingers crossed much love x Christine
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Forgot to mention he’s still 100% donor he’s chimerism came back x
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Official remission absolutely delighted consultants say it has amazed them how well he’s done . Just started another consolidation chemo cytarabin was going to be another flag Ida but he’s had some issues with peripheral neurophy lower limbs numb no pain so they thought it best to change . He’s continuing to gain weight…
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Further news Bobs ( my son ) latest bone marrow show no leukaemia tentatively delighted onward and upward ....Chimerism awaited to display information from his first sibling donor then consideration of the future DLI then perhaps another transplant but he's achieved the remission after all !!!!! Thanks everyone for your…
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Hello Mandy , my son is showing favourable signs he had a bone marrow which despite not being very full the core sample has shown hopeful signs . He had flag Ida after he relapsed early December it’s been a tough battle but he’s doing well weight going on no pain mouth improved . Further bone marrow tues then onto DLI when…
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Thanks Rob and Steve , your support is most welcome not long returned from the hospital further bone marrow had been planned today . In reality we had much more favourable news the result from the bone marrow a about ten days ago has now proved to be favourable . There is a positive element now bone marrow postponed until…
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A simple follow up on this thread my son Bob has been discharged he’s recovery from the flag Ida going well neutrophils still slow now sat at 0-20 so getting there at day 36 . The bone marrow taken last week was empty some slight granulation but not enough to call . Further bone marrow planned next Tuesday hoping fingers…
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Thank you Hayley and Rob for those comments my son Bob has experienced extreme difficulties with the mouth jaw after his chemo saw max facial yesterday has exercises and is expected to improve nutrition has been a major issue . Re neutrophils still hovering around 0-05 bone marrow being taken today so everything’s crossed…
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Hi Kitty , my son experienced issues with cyclosporin mainly the liver after a biopsy to determine issue he was moved onto tacrolimus ( sorry may not be the correct spelling ) hope this is helpful and all is well or getting there Much love Christine
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We still have no neutrophils well 00-2 on day 29 of flag Ida following my sons relapse getting really jumpy . Talk of checking bone marrow in about a week what happens if the neutrophils don’t return ? Sorry these questions just jump around the head you’d think you’d get used to it wouldn’t you , After previous chemo trial…
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Thank you Steve , it helps knowing I can share on here I didn’t use this forum last time and really should have done so I will keep posting updates , Christine
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Thank you both for those responses really appreciated we do have a really good relationship with he’s professionals I am actually a nurse myself at times I am not sure if that’s a help or a hindrance !!!! We are presently at 28 days waiting for neutrophils 0-04 today but he’s phlegm in the mouth is building so I am hopeful…