[adelaide56Participant]

Yes I think that’s right….he has had the steroid dose lowered and I think this has helped, also we have had a good chat about things and again this has helped too.  Onwards and upwards!

[adelaide56Participant]

Thank you Sarah

It helped me to have a little offload….I think your story shows how very difficult this cancer (or indeed any other cancer) is for everyone involved.  Families, partners and most importantly, the patient.

The range of emotions we all have to deal with takes its toll.  I truly believe that communication and understanding is the key and I continually try to keep the lines open.

I appreciate your answer and  your advice..thank you

best wishes to you and your family

[adelaide56Participant]

Oh Maureen,  I am so sorry to hear this.  Sending you and your husband our very warm wishes.

it all seems so unfair.  x

[adelaide56Participant]

Hi Pat

MY husband has just finished 2 cycles of the carfilzomib, it has been problematic as the drug was attacking the red blood cells and platelets, but not making any difference to the myeloma levels.  Anyway after some difficult weeks with many days at the hospital having fluids, blood transfusions and platelets, we have finally had a better week and some lowering of the myeloma light chains.

His kidney function is better also as that was affected too.  So we are hoping that it will compntinue to improve things and he will tolerate the treatment better.

now a neighborhood of ours has the exact same cancer and started on this treatment at the same time and has been absolutely fine !  It is so individual this disease, what works for one person doesn’t necessarily work for another.

Best wishes

good luck with everything

Adelaide

 

[adelaide56Participant]

Hi Teresa

Thanks for your reply.  We have had a better week this week and some family time today, which has cheered us up no end!  It’s a hard slog and as you say, not always easy to do things when he’s feeling so tired.  But we will cope.

Hope your husband gets to a remission before too long.

Take care

x

[adelaide56Participant]

Hi Kevin

thanks for the reply…my husband and I read it and he feels much like you do, that myeloma is an unwelcome intrusion to his, and my life!

We feel we have to just take the advice from the medical team as to what and when treatment may become necessary.  Meanwhile we intend to get on with our lives.

wish you well

Adelaide

 

 

 

 

[adelaide56Participant]

Hi Mojo

So far so good…my husband had a paraprotein of 0.8 just before the SCT…he had a successful harvest and then 3 weeks in hospital for the chemo and transplant.  He is now 6 months post transplant with most recent bloods having unmeasurable paraprotein.  Really good news.  It’s not been an easy 11 months, but we are in a better place now.

With regard his needs when he left hospital,  the first week, he had a temperature spike and had to go into the day unit to be checked.  He was given antibiotics, which worked well.  He was tired for about a month and I did all the cooking etc.  We got a cleaning lady, so that was covered.  We were very careful about hygiene and had antibacterial gel and hand wash all over the place.  We also had few visitors and obviously put off anyone with any health issues that could cause him to get an infection.  He was able to shower and look after his own needs.

One of the hardest things was persuading him to eat.  He had no appetite at first and couldn’t even talk about food, or decide on what he felt like eating.  In the end I did all the shopping and cooked food that I thought he might eat.   Then he chose anything he could manage.  This worked and within  3 weeks he was eating small varied meals and his appetite improved quite quickly after that.

I am retired and so was able to put time to this.  Also we have a son and daughter who were able to support when they could.  I think your main problem is that you just can’t gauge how your husband will be when he comes out of hospital.  Do you have family or friends that can look in on him when you go back to work?  I didn’t need to be there all the time and we had 24 hour phone contact numbers for the hospital if there were any problems.  Also, if needed, would your work be able to offer you any extra personal time?  This is not an easy procedure for your husband or you to deal with, is there so one you could talk to about this?   Macmillan were also helpful to us with advice and just someone to talk to at times.

I do hope things go well for you both and hope this has helped.  You will get through it….

best wishes  😀

 

 

[adelaide56Participant]

Thanks Annlynn and Maureen,

its good to hear some positive news…long may the remissions continue.

xxx

[adelaide56Participant]

Hi Mervyn

I think everyone will have a different experience of the transplant, but it wasn’t too terrible for my husband.  he responded well to the initial chemo tablets, steroid and thalidomide and was feeling really well in the month leading up to it.  harvest was done in one session,  5 hours lying on a bed watching daytime TV….it was good that I was there for company and to feed him his sandwich!  I think the following 4 weeks were hard, waiting to go into hospital, but we kept busy  doing nice things amid spending time with the family.  Also he was enjoying his food, so we made sure he ate well and heathily.

Going into hospital was a nervous time, probably for me more that my husband…he is a very calm person.  There were only 4 days when he felt very poorly.  He had an infection which is to be expected when the white corpuscles and bone marrow are at rock bottom.  At this point he lost his appetite completely and it was hard to persuade him to eat anything.   It is vital that you do eat, but if it gets too bad they will give you protein type shakes.  You will most likely lose some weight.

He took books and his laptop and there was a TV, so that helped with the boredom.  You are left alone a lot, even the staff just pop in and out and you need to ring if you need anything.   I visited a lot, but on the bad days I just kept the visits short.

Dont know if I’ve given much advice, but hope that all goes well for you.

Best wishes

[adelaide56Participant]

Very true!  Thanks

[adelaide56Participant]

Time for an update…my husband is in hospital day 11 from transplant.  He has been doing really well….unfortunately now he has an infection so is on IV antibiotics, which we were told would probably happen.  He is completely off his food, but is eating a little and still wants his coffee!  He is being such a model patient, very calm and positive.   He is still reading his books/kindle and watches TV a bit.

One thing that has surprised me in this whole process is the amount of people, friends and family that have not been in contact pretty much since his diagnosis. Quite disappointing, but I guess they just can’t deal with it.  Luckily we have wonderful support from others, so we are ok.

 

 

 

[adelaide56Participant]

Thank Tony….

[adelaide56Participant]

thank you for the information..

When you say in isolation, does that mean you couldn’t have visitors at all?

 

 

,

[adelaide56Participant]

Hi Carol and Carole!

really helpful replies…thank you.

We are keeping very positive and I am sure my husband and I will cope.

we are lucky to have a lovely supportive family too.

best wishes

Ax

 

[adelaide56Participant]

Thank you for the replies…we have had a good weekend….managed a meal out for our daughters birthday on Friday and today a tea party and baby shower at their house.  My husband is being so brave and calm and I am fussing a lot less and taking my lead from him.  We will get through this.

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