Hello guys,
Thanks for letting me join this helpful forum. I definitely needed a listening ear. My hubby just diagnosed with Myeloma so we still getting used to it all. We found out a couple of weeks ago and he starts his treatment tomorrow.( 01/12/23) He will be doing the radar clinical trial. All the drugs seem daunting with regards to the serious side effects. He will be on velcade injection, cyclophosphamide,lenalidomide & dexamethasone. Along with additional drugs…….
Can anyone give me any tips on how to help him in the early days?
I have started researching the disease, the drugs, the upset to everyday life, and then the stem cell transplant. I’m remaining positive to keep his spirits up. Hopefully some of you will be able to help me a little bit.I know it will be very challenging for him.
Thanks for listening…
Hi @Olivia and a big welcome to the forum.
I’m glad you reached out. It sounds like you are doing so much already and getting prepared to support your husband. It can be so hard for the partner and it’s so important that when looking after him you also take care of yourself.
I have posted a link below that gives some good tips and advice on supporting throughout your husband journey. I would also suggest writing any questions down that come in to your head so you can ask the consultant or the specialty nurse. Remember no question iis a silly one - if it comes in to your head, ask it.
The support line is great if you would like to talk things through.
We are all here for you and your husband. He is very lucky to have you X
Here is the link x
Thank you Nicola, very kind. I will look at the link.
I ask so many questions just hope they don’t get fed up of me! This website is great. Just trying to get him to have some breakfast before we go to first chemo today. I’m sure he’s anxious but he says he’s fine… X
Please let us know how today goes x
Hi @Olivia a great big welcome to our forum.
As a spouse it is so difficult to know how to support your husband, personally I think it depends on your relationship.
I am a great believer in really honest communication (something I/we am/are useless at!!)
Very personally I think it is great if you can both freely talk about how you are each honestly thinking and feeling.
Perhaps ask your husband how you can support him over his treatment plan and say you just don’t know what to do for the best, you want to support, but not come across as nagging or taking responsibility away from him.
We are here for you to say how it really is for you, I have found that nobody asks how you are, a carer can be a thankless, exhausting role.
Please look after yourself as well as you obviously want to look after your husband.
Be very kind to yourselves and please do keep posting
Hello I too have recently been diagnosed with myeloma and going on the radar trial.
Started my chemo last week by injection and plenty of tablets. Better than I thought it was going to be. Please keep me updated how your husband gets on.
Thank you
Paula
Thankyou Erica, I will take it all on board, sound advice.x
Hi Paula, sorry to hear you have myeloma, but glad to know that it’s not been too bad so far. I have heard good things about the radar trial. Let’s hope it does the trick for you and my hubby. Let’s keep everything crossed.
He had his first treatment today, which he says was better than he thought. Although we both know it is only day one. He had the velacade injection and 3 different chemo tablets. He then had a bone treatment “zometa “ infusion , I think, which we were never told about. He had steroids which may keep him awake tonight! I need to check on the side effects of zometa as I like to do the research. We also didn’t expect so many support drugs, but realise they are all to help the side effects.( like blood thinners, anti virals etc) He has just had his night time tablets. Let us know how you get on Paula, it will be good to compare and cheer each other along. Really nice to support someone on a similar journey. Here’s to new friends and positivity. Thanks again to all in this group.
Hi forum friends,
Hubby did well on his first day of treatment. Fingers crossed the Radar trial is a success for all who partake in her……
We just need a spreadsheet for all the medication, so confusing on all different days. I’m sure we will get there. The NHS staff were great as usual, putting us at ease and remaining positive. It can all be a minefield, but baby steps are best. As a partner trying to be support for a cancer sufferer, I will take all the good advice I have been given on here and communicate and ask hubby what he needs/ wants from me. This group is invaluable, so glad I found you all. I’m also here for anyone else needing support, friend or listening ear. It’s good to talk. Thankyou to all who have helped me so far.Much appreciated.
Will do. Let us know how you do too.xx
Hi again
How is your husband coping with his treatment? I seem to be doing rather good so far, see the consultant again next week quite anxious about this, hopefully bloods are behaving.
Paula
Hi Paula,
So glad to hear that you are doing well on the treatment.
Hubby is on his second week of his first cycle. He has his velcade injection on a Friday and also his cyclophosphamide & dex tablets in addition to all the support tablets. He always struggles with his sleep on Friday & Saturday nights. It does wear off as the week goes on.
Other than thumb joint stiffness for one day after his first Zometa ( bone infusion treatment) on day one, he has not had any other side effects yet. Obviously being really tired is draining but we are just grateful for small changes. He does take blood pressure meds , so I am keeping an eye on that. I also check his temperature once a day. I bought him some pill boxes off Amazon, so he can take them himself. I make them up just for the week.
Have you suffered with the tiredness or other side effects?
Good luck for when you see the consultant. Please keep in touch and if there’s anyway we can help you, just shout out.
Fingers crossed you continue on the same path with the meds and don’t get poorly.Take care, be kind to yourself…xxx❤️
How are you @Olivia?
I hope you are looking after yourself as well as you are obviously looking after hubby, it is so important.
Be kind to yourselves
Thanks for the advice Erica, you are so right.
I am eating well, exercising with our dog, and making sure we both have more fruit and vegetables than we usually do.
I don’t sleep well as a rule, so I’m quite used to running on low. I’ve altered my sleep times and take cut c and zinc tablets to give me a boost. I realise I’m not good to my OH if I get run down.
How are you doing Erica??
I am very impressed with your insight into yourself and your needs @Olivia, I expect your dog helps with your exercising.
Thanks for asking, I am doing a better thanks, but still have a hacking cough and fatigued.
Look after yourselves
Thankyou Erica. Please look after yourself as you spend so much time on here caring for others. You are an inspiration to us all. I hope you manage to get rid of your cough and any other symptoms that hinder you! Take care.x
How are things @Olivia?
Hi Nicola, Thank you
for the message. Things are going ok, Hubby now on start of week three of cycle one. He has suffered with fatigue but has a nap in the afternoon , as needed. I agree that he should listen to his body. He is fortunate not to have any debilitating side effects as yet, so very grateful for that. Stiff joints one day and diarrhoea, only one day.He has a red patch tho on his stomach near his injection site, where the velcade goes. He doesn’t have a temperature and it’s not hot to touch. He got it checked this afternoon when he went for his next injection. They are happy there is no infection, possible rubbed on his waistband. Best to get everything checked out, without bothering the nursing staff too much. How are you Nicola??
Hi @Olivia.
Thanks for updating us. I’m glad things are going ok at the moment and your husband is managing well. I think it’s really important to check things out otherwise our mind goes into overdrive! How about you? How are you doing?
I’m ok thank you. I think term is every teachers nightmare - I’m counting the days! X