Day +6 Constant vomiting

Noodle

Hi Everyone, I am new to posting on here, been reading all of your posts over the past 5 months since my husband, was diagnosed with ALL back in early May. To be fair its all been going pretty well and we are lucky to live within a sensible distance of a great hospital with a specialist transplant centre that being Southampton. We have just done day +6 and he is at rock bottom, and the nausea and vomiting are awful, he has also got lots of pain in his back and legs, so is struggling to sleep, lay etc, sores in mouth and throat they are doing all they can to get it under control but we understand this is what happens and know it is part of the process but I just wondered from others experience when does it all get just a bit easier, ?? its the hardest thing to watch the person you love go through such an ordeal.. feeling helpless.

Dieseldrinker62

Hi there and welcome to the forum. I'm one of the community champions here and was treated for ALL myself almost 5 years ago.

I know you realise it, but I hate to say that it is normal to have sickness and nausea and diarrhoea for a week or two after the transplant. I understand it is one of the chemotherapy treatments that is given just before the transplants that always has that effect. I remember being warned about it by one of the nurses before I had it!

The worst lasts for a week or two but it's likely that your husband will feel weary for a while but it does get better and as hard as it is he should try and stay positive and focus on getting better. He's gone through a big thing and as I'm sure you will have seen from the posts on the forum it does take a while to get over the transplant and get back to something approaching 'normal'.

As I also had ALL I probably had similar treatment and understand what he's going through. I remember the feeling he has now very well and did feel very low but it was a case of biding my time and waiting for my counts to start increasing. Before I knew it I was able to go home from the hospital and despite a couple of setbacks during my recovery, which most of us will have, I did recover fully. Whilst we are all unique and react differently to the treatment, many things are similar and there's no reason that your husband shouldn't recover just as well so please try to keep his spirits up.

The sores are difficult to cope with and make it difficult to eat, but anything he can eat, or drink the nutritional shakes, will help, and even if some of it comes back up, he will hopefully get something from it to help. My wife brought some ice lollies and ice pops in which the unit kept in the freezer and they helped. I also has the nutritional shakes made up with a dollop or two of ice cream, which was nice and the cooling effect in my mouth helped.

Tell your hubby to try and hang in there; it will get better soon. Please let us know how he gets on and ask any more questions you need to.

All the best,

Steve

had0171

Whilst I didn't have the nausea etc - I did get the ulcers in my mouth and throat and that was so painful to try and eat with, or take tablets and my appetite just completely left me.

What did help though was soluble paracetamol - hold in mouth before swallowing and it alleviates the pain just enough to swallow something - I ate loads of custard and cold ice cream as it was soothing to swallow with the help of the paracetamol. I also timed my morphine to be taken 1/2 before meal time and that helped too. Obviously good mouth hygiene is really important and the hospital should have given antiseptic mouth wash as a matter of routine.

The ulcers took some time to go - but go they did, and they're just a distance horrible memory now but so uncomfortable whilst they're there - your huspand has my full sympathies - and I do hope he starts to feel better soon.

Hayley_Anthony Nolan

Hi
I am the nurse specialist in the patient team. I am sorry that your husband is going through such a tough time. It is difficult for you both. It is early stages and as horrible as it is, its very normal. I reiterate the responses so far and hope that they have given you some insight and reassurance that it will get better, it might just take some time. Sometimes it is a case of finding the right anti nausea medication that works which I am sure the team are trying to do.

We have patient information, video's, blogs and podcasts from patients talking about some of the post transplant side effects that you might find useful https://www.anthonynolan.org/patients-and-families

Its really important that you also look after yourself while your husband is in hospital, make sure that you use support from family and friends.

You are very welcome to call if you have anything that you would like to discuss, the number is 0303 303 0303.

I hope everything improves soon and please keep in touch

Best wishes
Hayley

Noodle

Hi all, thanks for your replies, its comforting to have your input and although the sickness is hard to watch him go through he is coping well and his consultant has said he is doing really well, its such a long process and sometimes it just feels never ending but in reality he has his final dose of Methotrexate on Monday and that feels like a million miles away from where we were 6 months ago, so I am feeling proud of how far we have come and how positive we have managed to be through such a difficult time. Seeing the Stem cells arrive was very emotional and we are just keen to get through the next 90 days with as few hiccups as possible.
I know everyone has a very different experience however it is a huge help to hear your stories and know there is a light at the end of the tunnel, because of the worry of infection and of course because my husband is in isolation, it is quite a lonely illness, so also comforting to know there are people that can offer some support, I am self employed and work alone so although its great for not picking up colds and bugs, it has been emotionally quite challenging at times.
I left him having lots of blood tonight, and my daily visits seem to really cheer him up, so although I feel helpless I guess just being there makes a difference and is helping to keep him positive.

Thanks again will keep you updated of progress.

Rachelj01

Hi

Sorry to be a bit late to join this post.

Everything you have mentioned is perfectly normal, I recall being at my lowest and it was horrific however looking back I regained my well being quickly, in weeks you'll look back and be amazed at how far you have come.

I do sympathise for you having to watch your husband endure all the hardships of the treatment. I know I found telling my family very hard, as I knew it upset them to hear what I was experiencing. That said visits did really help boast me. I found patients a great support, I would assume talking in your position that talking with other friends and relatives may help. Sometimes we need to talk to someone who is going through the same.

Best Wishes

Rachel

SueP

Hi Noodle,
I think you make a good point that a transplant is a lonely business both for the patient and relatives due to being in isolation. The staff always found time to chat to me but it was different to earlier in my treatment when I could swop stories with other patients. Two of us even got told off for talking one night as we were keeping the other patients awake. So by all means use this forum as much as you need to.

I can only reiterate what the others have said - it is dreadful at the time, but you do recover. I was unprepared - I'd taken a stack of books, puzzles etc in and didn't even look at them, I just slept all the time.

Wishing you both the very best,
Sue

kpow

I also had sickness it even got to a point of doing the motion of being sick but nothing came up as I stopped eating and had to be put on a food bag. I never had the mouth sores but after the 1st or 2nd week, the lining in my throat was stripped and I found it so difficult go swallow
I think everyone suffers with different symptoms but it will get better and it sounds crazy saying it and thinking about how I felt but it was all worth it