Thanks so much for your response and apologies I think I might have missed you have been sick too!
I hope you’re ok and that everything continues to go well for you!
Noted regarding the meet & greet and totally understandable
You are right, I think while you are going through all the hospitals stays with short breaks in between, you are rolling with it and don’t really have the time to even think after relapse because the first thing you want is just to make it and be able to leave the hospital in a better state! Now that this part is behind me and I have more time with myself (I was lucky to have my mum / fiancé with me everyday during my stays) I definitely feel more anxious and worried about important next steps.
Outside of that, I really can’t complain regarding any infection since I am out (I left the hospital at D+17) and my blood counts are not yet perfect but improve slightly every time. Just my kidneys are a bit upset / lack of magnesium & potassium and like most of you, some nausea due to the level of medication I guess.
I had some GvH but just rash on the skin and had to use some steroid cream that helped. And I think some in my mouth too that was pretty painful but not sure it was GvH and it was treated with mouthwash. Just I lost the taste again so really frustrating!
I walk a good amount everyday - around 5k a day but outside of that I rest a lot!
Have a great day and I will stay in touch with you in the loop if that’s ok
Thank you so much for your answer!
Agree I should just relax a little bit and the real check will happen at 3 months - as you can imagine I already think about it a lot!
I am sorry to hear you had to go back about being released from your room! I would have struggled with that too!
I remember I was just so happy I didn’t have to pee in a basket anymore (I guess you might have monitored your fluids too?) and thought that I really didn’t want to do this again!
I will express more my anxiety at my next appointment tomorrow - I told them as I was quite anxious waiting for the chimerism results to be back but apparently they are ok (not all 3 100% though, one is 91% so hopefully they will keep improving)
Take care of yourself and keep use posted on your 3-month catchup - you are just ahead of me!
Thank you for your answer and sharing your experience!
It seems you are doing wonderfully!
Keep us posted on the D-100 checks that will arrive quickly for you, I cross everything you get the best news!
Well done on your walks, it is such a good weather for the moment to enjoy a little bit the outside! It is the highlight of my days!
Quick question, in terms of food restrictions, are you still really strict with what you eat ?
@Mmepages hi I have been very strict not to mention anxious about what I eat but then part of that is zero appetite / nausea. i did however have a cheese toastie and a hot chocolate from a park cafe whilst out and about in Weston-super-Mare yesterday and really enjoyed it. the way I see it i am within 2 weeks of my +100, feel OK, so am loosening things up a bit. i still stick to no fruit or veg unless thoroughly peeled and washed and no tap or still water unless boiled. I am so impressed with you walking 5k a day so early in the recovery timescale! Keep doing what youre doing youre doing brilliantly! x
Reading all of your posts has made me so happy this evening. It is an awful path to have had to face but it is so nice sometimes to remember that there are others to walk alongside.
We’re day 5 in our new house. Husband is doing pretty good, very tired and he hasn’t physically done too much although on some days his steps have been close to 10k just through pottering about which I think was a little too much for where he is at in his recovery. Otherwise no big news on our side right now but we do go for a hospital visit on Friday where we will get his bloods checked and I think he should get the results of his latest chimerisms. Day 70, I think he is looking forward to hopefully tapering down his tacrolimus from day 90 if things continue as they are.
School starts again tomorrow after 8 weeks off… I am looking forward to the routine that it brings although I’m sure I’ll be looking forward to the next half term in a matter of weeks!
I think that you’re doing a great job. You sound to have had very thorough precautions and hopefully you can continue to find the right balance for you as you go past day 100!
Hi everyone. I feel a lot has happened since my last post and until now I haven’t really felt in a good place to share, seems silly when I have found all of you to be a great source of support.
Only just finished cycle three of chemotherapy when it should have been the fourth and final one, my bloods took so long to recover after cycle two which consultant now thinks was due to something called parvovirus, also ended up in A and E with suspected blood clot thankfully just a chest infection and prescribed antibiotics. Waiting for decision from regional leukemia panel and consultant about if Iam going to have anymore chemo, due to my slow recovery and infections and if they feel three cycles of chemo are sufficient enough in my case. The have I had enough chemo scenario is now keeping me awake at night, especially when before treatment I was told four cycles is the normal way forward. Just have to believe that whatever their decision it will be the right one for me.
So glad to hear from you, I was wondering how you were doing!
That’s the thing with leukemia, you never know how a cycle is going to be and it is always bringing a lot of anxiety for everyone involved. Just keep in mind that the doctors would always offer you the best option! Here it might be no more chemo because your latest BMB results are good enough or maybe they would keep the 4th round as an option for later once you feel stronger.
If it is of any reassurance, I stayed in hospital for more than 7 weeks during my first cycle (admitted through A&E) and my blood count were really slow to come back (particularly my neutrophils - in the end they let me go home with 0.7 only and asking me to be really careful). But once you are home, I have the impression that even if you are tired, you can usually feel how resilient your body is after everything it went through in hospital.
Take it one day at the time, don’t be too hard on yourself! You have already done 3 cycles and this is a great achievement!
That’s great to hear, I have to say I did eat a pizza in a restaurant terrace once too (we are regular customers and I knew the staff would be particularly careful and put us as far away from other clients as possible) . Felt good to do it even if I had barely no taste!
Same regarding fruits / veggie - never craved something I don’t particularly like so much in my life!
Keep us posted on your 100day results! I guess you should have them by the end of the month ?
I cross everything I can!
i am on day +92 and no day +100 bm biopsy has been scheduled yet? i was recently advised by transplant team that my latest bmb molecular result from Guys had come back MRD negative / no trace. But this biopsy was from mid Aug and the one before that was from early July and came back MRD trace positive and both were post Stem cell transplant so i am a little confused. i have also had no viruses and no Graft-versus-host-disease (touch wood) am almost weaned off cyclosporine and have been told I am 100% donor across all cell types on chimerism. I have got be pleased by all that albeit a bit confused.
I guess all hospitals might do things a little bit differently. Personally I would only get a biopsy at D+100 and none before and I thought it was always like that but apparently not! Maybe because your last one was positive they wait a little bit longer before the next one ? Might be worth asking your consultant ?
Good to hear about your chimerism, mine is 100% for 2 but 91% for the 3rd one. I was disappointed but the doctors said it was quite frequent and I shouldn’t be worried.
Also, for the 1st time yesterday my blood counts are not as good as I am lower than Normal for my platelets and I can see that the neutrophiles are getting close to being to low too (and it is a trend for the last 3-4 résults) so it brings a little bit of anxiety! Fingers crossed the next one will be better
I can already feel my long walks going away with the poor weather - that’s going to be a mind game for the upcoming months I feel. I don’t know about you @Gerard ?
Hi all,
Great to see everyone’s progress and inspiring all those steps people get in. I’m day 64 post stem cell and still need a nap most days in the afternoon. I’m lethargic, nauseous but that I think is worse by the antibiotics I’m still taking, only a few more days to go hopefully. I avoided yet another admission by attending daily for iv antibiotics for a week and taking tablets a home as well. I just crave normality. Still have clinic and bloods twice a week to see my consultant. My bmb is due at 3 months then at 1 year I’m told. My Hickman line is out it was clear on screens but removed to prevent infection as my inflammation makers keep jumping up and down.
Trying to keep positive and will push to exercise more I think. The anxiety is awful never had anything like this before. Luckily support from family helps.
Take care everyone
Hi @Jilly I thought as I read your post that we are all different and our treatment and recovery times.
I think be very kind to yourself, you and your body have been through a lot medically, emotionally, psychologically, physically and practically.
You mention that your anxiety is awful, and there have been other posts recently about delayed emotions and anxiety. I definitely think I keep going and keep going whilst in crisis and then when things calm down my body says that my protecting mechanism is not needed now and I can deal with my emotions, others have worded it far better.
I needed some talking therapy.
Just take it steady and I think personally, it works for me (this is not a medical response) just a bit of fresh air and appropriate exercise is good, just build up slowly, slow and steady wins the race and listen to your body.
We are here for you, be kind to yourself, please do keep posting
2 month post transplant today and I am spending it in A&E since yesterday.
Went to my usual Thursday check up and was feeling ok then started to be cold and shivering and could warm myself. Took my temperature and was 38.5 so the doctors asked me to come urgently and I am in A&E since then because no bed is available in haematology for the moment.
Quite anxious about that as I see so many people being sick I am scared I could grab something while I have been so prudent since I left hospital.
Anyway, they want to keep me 2 more nights to finish the antibiotics and make sure I stay stable before sending me home so hopefully they’ll find a room today so I can shower!
@Jilly i definitely do the steps but I also do the nap and some days I feel like doing nothing at all because of nausea!
Oh @Mmepages I am sorry and it must be anxious making and scary for you still being in A&E.
Perhaps if you are still in A&E, I really hope you aren’t, you might reiterate that you are only 2 months post transplant and very anxious since you had been shielding that suddenly you are surrounded by people
Please could you be moved to somewhere more out of the way or to a general ward and also have a shower. It is a reasonable request.
Please let us know how you get on and be kind to yourself
Hello, hopefully you’re on the mend and getting over the infection in more comfortable surroundings.
I understand your anxiety of being in A&E so sad they don’t have an isolation area to look after you in whilst they wait for a bed.
I had a couple of suspected infections post transplant but li lily always felt well with them just raised blood markers. Hope this doesn’t impact your mood too much. Just remember it’s a rollercoaster and after downs comes ups again.
Take care
Thanks @Erica & @Jilly for your kind words.
I was finally given a bedroom in a random ward yesterday at around 10pm.
A&E was crazy and it is just that when you see all the care the haematology team put (wash hands, gloves, masks, apron), you don’t feel comfortable there even if in a side room because even the doctors/nurses don’t wear gloves or mask most of the time. Anyway I hope I didn’t catch anything else there and I feel better with my temperature back to normal since this morning.
I should be able to leave tomorrow if I stay stable until then, one more round of antibiotics to go so fingers crossed.
Oh @Mmepages I am so pleased that you actually got a bedroom all be it in a random ward.
Let’s hope you will be able to leave tomorrow.
Please keep updating us, sending you good vibes. xxx
I’m back at clinic today and have a temperature on having my one done. I feel fine but pending bloods I’m looking at admission again possibly. Can’t seem to catch a break at the moment.
Oh @Jilly, you certainly don’t seem to catch a break to you.
You and your body have been through a lot medically, emotionally, psychologically, physically and practically and perhaps your immune system needs time to build itself up.
Please do let us know how you get on and I will be thinking of you
Be kind to yourself xx
