[briggs-family1974gmail-comParticipant]

Thankyou will find out what they say.

[briggs-family1974gmail-comParticipant]

Does anyone know if after the 100 days you can travel abroad ? If you are feeling well is it ok to travel before you commence your childhood vaccinations ?

[briggs-family1974gmail-comParticipant]

Thankyou. I think his high levels were lambda not sure if that makes a difference?

[briggs-family1974gmail-comParticipant]

My husband just had sct also and he is having same sort of sensation in upper thigh.
Consultant said it may be damaged nerves from chemo but they don’t seem overly concerned. 😩

[briggs-family1974gmail-comParticipant]

My husband just had sct (day22) and has had consultant appointment today. He’s being told he will go onto maintenance treatment after 100 days , nothing was mentioned about delaying it if numbers were still low. Is this an option as he would really love to be treatment free if that was possible
Which is why I’ve responded to your post here ?
We’re sort of in limbo atm too as he’s been told nothing of what’s to come or what to expect
Sort of expected more information during this visit but nothing of any importance was discussed.

[briggs-family1974gmail-comParticipant]

Thankyou for your response it’s so helpful to hear other experiences
My husband is still a little nauseous but syringe driver helping a little . They have said there’s keytones and proteins in his urine could indicate infection? It’s all a big learning curve which is why your kindness in taking time to share your journey is invaluable
Hope you are well.

[briggs-family1974gmail-comParticipant]

Thankyou so much for sharing that. My husband is day 5 now and although the syringe driver is helping a little with nausea he’s still unable to eat much and is now having some diarrhoea which I know is another common side effect. He has been told there are keytones and protein in his urine. They don’t seem too worried but have sent off sample for analysis which is reassuring that they are on the ball but worrying also as he’s drinking a lot and has had fluid drip so I’m concerned about his kidneys now 😩
They think his numbers will be at there lowest around Tuesday or Wednesday of next week , he too is near the nurses station which isn’t helping his mood as they are out joking and having a great time (his words) while he’s trapped in his tiny room.
I’m hoping he will start to feel a little better soon , again Thankyou all of the information helps so much.

[briggs-family1974gmail-comParticipant]

Thankyou for response. My husband is unfortunately feeling really nauseous from the night he had chemo. He’s not too tired yet but head all over the place and can’t focus on anything for long. They hope to get ontop of nausea by fitting a syringe driver today with anti sickness meds to try and stop the constant nausea , he’s also fed up with the nurses coming in and out and definitely the loss of control over things is an issue. Just wants to be out of that room and at home where he’s free to walk about and not locked in a tiny room
I really appreciate you sharing your experiences and I’m trying to be positive for both of us as he’s not feeling to upbeat right now 😂
Take care and I hope ur husband keeps well.

[briggs-family1974gmail-comParticipant]

Thankyou again. Not sure how to contact however would u mind sharing the actual stem cell transplant details and how that progressed. My husband is starting to feel ‘heavy limbs’and bad nausea and wondered if you have any advice to help him through. We know it’s likely going to get a lot worse before it gets better but another perspective helps greatly. Thankyou

[briggs-family1974gmail-comParticipant]

I’m so grateful for you posting this. My husband is in hospital for a sct at the min. He had his chemo yesterday with stem cells to be reintroduced today. I know everyone’s journey is different but this all really helps knowing what is happening to us and how we are feeling is similar to yourselves and the hope of light at the end of the tunnel is good to hold onto
Thanks for sharing your experience

[briggs-family1974gmail-comParticipant]

Thankyou so much. That’s quick for your transplant we have been told hopefully May but most likely June before they can get it sorted.
Good luck , hope all goes smoothly and please let us know how you get on as the advice and input we get here is invaluable
X

[briggs-family1974gmail-comParticipant]

Hi Emma.
Like you my husband was diagnosed in October/November time. We have two girls 19 and 21. I don’t really have any tips other than be open with them about diagnosis and treatment .
With regards doing things during treatment we have found that a bit difficult, the treatment has been a bit tough at times leaving my husband quite fatigued. We have been able to travel to Scotland for day and have had a couple of nights away in motorhome however not much more than that as we are tied up 3 days of the week with bloods treatment and consultant appointments, spa days we have been told to avoid as the bacteria risk in hot tubs etc can be harmful during chemo , we have sort of settled ourselves to know that this year is pretty much on hold for us but have had dates for a stem cell transplant and have booked foreign holidays for March 25 as we have been advised that would be doable.
With regards to carer advice I’m just trying to do what he needs,sort out appointments and look after medication as he is terrible at that, and look out for any change in his health , checking for temperature etc and hold it all together as life still goes on with the kids etc.
I’m still working full time and I have to say there are times when I feel like doing everything is a bit much as obviously we did it all together before this. I feel guilty for complaining as I’m not the one who’s ill but sometimes it does get on top of you.

[briggs-family1974gmail-comParticipant]

This is all good to know. Thankyou for your response.

[briggs-family1974gmail-comParticipant]

Are there any precautions you should take when going on holiday. We hope to get away to USA when stem cell transplant is done and we are allowed to travel
At the min the transplant is planned for May/June and we provisionally booked to go away in March 2025. Do you think from your experiences this is possible and if so do you wear masks etc on flights ?
Have been quite reclusive at the minute to try and get through treatment as quickly as possible with no infections etc. the thought of rejoining society can be quite daunting

[briggs-family1974gmail-comParticipant]

Hope all is going well with your SCT

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