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Thank you Sue and Steve , as a nurse manager myself I hope in time to be able to translate some of issues that I witnessed throughout Bobs struggle against he’s aggressive disease . I will once again take my place on my county’s end of life board and intend to make a difference ....will always be here to support Anthony…
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I ve thought about whether to post or not but I am afraid my son passed away on the 12 th July . He gave he’s disease the fight if it’s life but eventually it simply proved too aggressive for him we are heartbroken but grateful for all the help support and professional care given to him and me along the way particularly…
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My son has now entered a trial we have had to travel some distance the logistics are a bit of a nightmare but it’s worth the effort ...we have our fingers crossed this buys him time and other options ...much love to all Christine
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Hi Jess , this is really interesting we know of the royal marsden , we are still waiting on the mutations for my son time certainly drags when waiting for these resukts then we can hopefully determine way forward looking at Cardiff or even West Midlands as we’re in Cornwall . I hope your husband is still reasonably well my…
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Dear Tom , thank you and yes it’s dreadful news we discovered yesterday’s that the blasts even dent are too high now for AZA ironic really because the day he relapsed we received news he could AZA as a preventative measure to maintain he’s remission the IFR result came through after weeks of wrangling despite recent…
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Unfortunately Bob has relapsed for the third time he received DLI about two months ago some slight skin GVHD but obviously not enough. We were chasing funding through IFR for azacidatine to support the DLI as he’s graft matured but news didn’t come through quickly enough . Now after bone marrow we have to see if it’s 30%…
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I haven’t experienced what you have but felt compelled to reach out to you . My son has AML had BMT Dec 16 but has relapsed three times I know how isolating soul destroying and scary supporting someone can be . My thoughts are with you and I can only imagine the pain you’ve been through my sons recent relapse news was only…
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Bob my son started treatment 3 rd day today MACE it was felt it offered him the most suitable solution particularly after the CNS issues last time . So far he’s doing ok really nauseous can’t eat not surprising really neutropenic already so fingers crossed for a easy and successful ride thanks for the support , Christine
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Hi Jess , sorry to hear of your husbands case it is indeed a cruel disease . Yes my son has relapsed 13 days shy of the one year they used flag Ida to achieve remission then DLI that remission then relapsed earlier this month . He had a sibling donor with he’s transplant and very little if any GVHD and a allergic reaction…
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Hi Steve , the issue with funding falls because he relapsed 13 days before the one year mark . We are hopeful if he gets through treatment that a transplant will be funded if not we may need to self fund . We’ve got a issue re treatment he had neuropathy issues after a previous fldarabine and cytarabine regime so a choice…
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We’ve been shocked silly after routine appointment today we’ve been told Bobs relapsing again blasts evident ....seriously .....this disease is so cruel he’d been doing so well ....will know more from Monday .....hope everyone else are doing well ....confused and upset ......but the fight goes on ....
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Mandy , I am so so sorry to hear this thank you so much for having the strength to share this my thoughts are with you all much love ****
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Jane is so nice to hear your doing ok and thanks for the supportive message Mandy , it’s not easy at any time all this is it much love
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He has a new cockerpoo puppy , enjoying life concerts , gaming , visiting Alton towers today ...., wants to help with children with this condition ...discussion constantly undertaken re GVHD is there enough against the disease he has some in the mouth and throat ....only had one DLI two years Dec post transplant edgy times…
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Thinking of all those going through tough times particularly Mandy with Sean , Rob Jane and Steve . Bob continues to be in remission long may it continue
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It’s been a while but I thought I’d give an update Bob continues to be well
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Hi Jane , sorry it’s been a while I ve just caught up with your story I am pleased and delighted to hear you’ve achieved remission but sorry to hear the toll all this is having upon you . It really is a marathon and then some keep your spirts up your doing so well my son Bob continues
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Hi Jane it’s lovely to hear your home and getting there so to speak I am so so pleased for you . Bob is doing well decisions re second DLI ongoing as they are unsure if the GVHD in the mouth is evidence enough ....always something isn’t there . I remember Bob had an issue with he’s Hickman line removal but he’d had he’s in…
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Ahh bless you hang in there great to hear your home again xx Christine
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Pleased to hear your finally feeling a bit better my son Bob is too still only GVHD in the mouth but needing steroids as mouthwash to keep on top of it sounds strange hoping for GVHD but hope it’s enough ... As for the sunshine it’s surpassed itself recently although I know Bob is struggling at times in the heat but there…
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Whoa what great news out the other side hope this continues Jane I ve been thinking about you every day it’s so good to hear your recovering well much love and you’ll get home we have long trips to our transplant centre too but ours can be broken up at times with our local hospital but it does take more time and energy…
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Hi All, Bob my son continues well in remission kicked the c diff into place well the vancomycin did that really . He went to the Ed Sheeran concert recently visited family and is looking at buying a classic car so far so good fingers crossed . He has some GVHD in the mouth not much but then using steroid mouthwash so hard…
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Hi Rob pleased to hear your picking up Bob is too much better presently onward to second DLI C diff seems to have moved off thankfully. He’s only GVHD is in the mouth the gut turned out to be Cdiff mouth GVHD is minor so they need more sight for GVHD against disease so on we go . How is your throat these days ? It is a…
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Hi Jane , if you get chance or the inclination to read this I am keeping everything crossed for a good outcome for you ,,,hope your doing well lots of love Christine
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Hi Mandy and all Bob has had some good times of late moved off the C diff finally all good fingers crossed heading for second DLI as a little GVD in the mouth but not enough really to determine the Graf element against disease ...awful wanting more but there it is .I hope Sean is getting there and that things have begun…
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Hi Rob sorry to hear your troubled so much by virus sometimes it feels never ending doesn’t it I know we feel that way too . I hope the warmer weather has helped for us it’s brightened up the windows from the hospital at least !,, much love Christine x
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Hi All bit of a update , unfortunetly Bob my son contracted C Diff when last in hospital took a while to shift and wasn’t pleasant but it was thought to be clear so DLI was done on the 25 th brothers cells infused . Crikey doesn’t it smell when they have been in the bank our first experience of the preservative being used…
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Hi Jane , thinking of you how are things I am posting on my thread this evening roller coaster again . Let us know when you can how things are I appreciate it’s not priority but sending you love and light and loads of positivity Christine x
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Dear Jane , time has moved on so I am sure plans are firmly underway for you . We live in Cornwall and my sons transplant hospital is in Devon it’s certainly not easy during transplant I literally lived there and rented a property close by , we travel by car when we have to go there and our local hospital share post care…
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Mandy , so sorry to hear your news and my delay in noticing your news . It’s hollow and gut wrenching when you hear news like this I hope you’ve all managed to consolidate and move forward to the next cycle ...much love Christine x