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 he’s rallying at times the positivity going into this one has certainly helped mentally .Antiemetics are a god send at times for sure hard to see him unwell as he was recovering well but has to be done …Jane and Mandy hope all is well our threads on here are so supportive and I hope help others too and Steve your support is most welcome much love Christine
Hi Christine,
It sounds quite a rough road for your son at the moment, poor sole, but he is pushing through and I can imagine the positivity has helped him as there is a purpose to it all (even though it’s hard!). You yourself must be going through it too as a mother the last thing you want to see is your son suffering, try and take care of youself also when you can, I know that’s easier said than done. My mom runs around making sure my brother has everything and anything he wants, she does an amazing job of being his nurse and carer ( I try to help as much as possible but I’m abit limited with my family also) I don’t know where she gets her strength from sometimes, but she wants to be there and he appreciates it immensely.
Anyway keep moving forwards and I hope your son continues well.
All the very best
Mandy
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 . Neurologists involved lots of mri tests etc nothing fortunetly turned up now believed to be as I thought chemo toxicity . He’s neutropenic presently but doing well fingers crossed the ataxia is still a issue but the neuropathy is improving but still a issue . Presently allowed home overnight as we sit out waiting for neutrophils to return but in every day to check bloods and to see if platelets and blood are needed . This has been made impossible in recent days due to weather as he had to stay in for quite a few days can’t walk too far and use of wheelchair a must . But he’s getting there hopefully on to the DLI soon .Hope things are ok Mandy and Jane it’s a difficult time and the weather certainly hasn’t helped at all. I am concerned my sons recent issues with chemo may restrict his treatment options in the future but he’s in remission and the chimerism was 100% donor so we have to hope don’t we. Always living in hope not fear , much love to all Christine
Hi Christine, it does sound as if Bob has had so much to content with already! It must be a worrying time for you and with all the adverse weather conditions too must have been a nightmare!! So glad to hear he is getting there through it all though which is great news !
sorry continued…I hope everything goes on well with his DLIs and that he gets some well earned respite from hospital soon.
My brother plods along with the azacitidine cycles he is due to start his third this coming Monday, then he will have a biopsy so we will all have everything crossed on results day!
Anyway at least all the weather of last week seems to have past for now, so take care and we are sending best wishes to you all.
Mandy
I have only just read your latest entry Christine. I am so very sorry that Bob has had such a hard time recently. What a scary time for you all. I really hope that things are back on an “even keel” now…certainly the weather has improved! This is such a mixture of experiences…of highs and some extreme lows, too. Please hang on in there and know that we are all wishing you well.
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 . Thinking of you both Jane and Mandy much love xxx
That’s good news Christine, thanks for the update.
Good luck with the bone marrow biopsy and lets hope that allows him to progress to the next stage.
Steve
Hi Christine,
Brilliant news hope Bob keeps well and all the best for the biopsy and hopefully onto the DLIs for him. I bet it’s a blessing to have him home and you must be a tower of strength for him.
Keep positive and pushing forwards.
All the very best
Mandy
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 of course it’s a worry the disease has returned our only hope is that it’s the bug family had and not his disease …he’s very quiet and it’s so upsetting seeing him so …fingers crossed for positive news …love to all x
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
Hi Christine, thanks for your updates.
At this stage it’s so easy to pick up a bug and it’s sometimes difficult to avoid them, particularly if those close to the patient are affected. I think the main thing is that these things get dealt with quickly and whilst it can be perturbing at the time it should hopefully only be short term and he will soon be back on track.
The preliminary results sound promising if his chimerism is at 100% so lets hope the detailed results show the same and that his levels now stay there.
All the best,
Steve
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
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
I have only just caught up with your news Christine. So glad that Bob has recovered…or is continuing to recover (it can take a while!) from the virus, it’s something we all dread really I think. But what wonderful news about the chimerism. So pleased for you both. I am well, thankyou. I have begun the pre-transplant tests and have an appointment next Thursday to find out whether the doctor thinks the transplant is viable for me. I am now planning to “shelve it” and enjoy the week!! That’s the plan. Will let you know.
Hi Christine thank goodness that Bob has had a promising result with his biopsy test , I’m so pleased for you both. I hope the virus starts to clear soon for him too so he can move forwards again!
I’m also happy to hear of your appointment Jane let’s hope that it’s a positive one for you…all the best!
My brother Sean has his biopsy next Tuesday so we are all hoping that results come back good…fingers crossed!!
Love Mandy
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 battled through and he’s getting better this is one roller coaster I’d like to stop …
Off to DLI tomorrow we have to travel 60 miles to Plymouth the pleasures of living in Cornwall he’s bloods were ok today so all systems go . All a bit daunting because they need to see some GVHD to achieve GVD just have to keep fingers crossed it’s managable and not to bad ,
Hope your keeping well Steve and Rob much love to all Christine x
Yes, I find this aim to achieve “just enough” GVHD really scary. I had virtually none last time (which at the time I was pleased about of course!) so I know I need some. But then the possibility of long term problems comes up and I think particularly of my husband if this becomes chronic. At the moment we approach it as a big, temporary hit on the leukaemia with hopefully an end somewhere along the line. Do keep in touch about progress. This is really helpful if you feel able to. Thanks, Jane.
Hi Christine,
So glad to hear your son is getting better and hope all is going ok with the DLI treatment,I can imagine it’s both worrying and a tricky position to endure to want gvhd to achieve gvd , even though that’s exactly what is needed , we wish you both all the best with it.
Sean had his biopsy so we are just waiting for appointment for next week to discuss next steps, so he maybe down the exact same route as your son soon.
Anyway take care, especially along with your lengthy journeys to the hospital too!
All the very best
Mandy
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 as he’s transplanted cells were fresh . Old smelly sweet corn just what you need for a couple of days but a small price to pay …Well that was over two weeks ago told to expect GVHD in some form it’s really finding the balance against the disease . Last Tuesday Bob wasn’t right loose stools again liver function off long story short became quite unwell now in hospital being treat for both acute GVHD of the gut and C Diff the jury is out whether it’s both or which but in truth I think they believe it’s both . Steroids and treatment for C diff and drinking only clear fluids no diet bless him he’s no weight at all …but he’s feeling better just …the roller coaster keeps rolling …
I ve just caught up on threads keep in touch Jane , Mandy , Rob much love to all the fight goes on xx