My husband has been on watch and wait for three and a half years. We have just been told that he will shortly start taking Ibrutinib and Venetoclax and that he will be on this for ever. He has been told that he will be off work for three months but does anyone have any experience of taking these drugs long term and how they impact life/work?
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Hi @Elaine a great big welcome and if you are anything like me the thought of your husband going on a treatment regime must have been quite a shock, for you and your husband.
It sounds as if you, and probably your husband, have a lot of questions whizzing round in your mind.
I find it helps me to write all my questions down for my medical team.
You might probably both have concerns about your husbands potential time off work and finances
We are all special individuals with unique medical histories but someone on here might have similar experiences.
If you would like to talk to someone the Blood Cancer UK support line is there for you and I will copy you post to the Blood Cancer UK nurse advisors @BloodCancerUK_Nurses
Please let us know how you both get on and look after yourselves.
Hi @Elaine. I have a different blood cancer but at sure others will be able to share their experiences. How are you doing? Itās a lot to take in x
Thank you, Erica. We are currently trying to get travel insurance that covers us for the fact that he will be on this treatment for ever. Do you have any advice?
Elaine
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Thank you Nichola. We are currently trying to get travel insurance that covers us for the fact that he will be on the chemo tablets for ever. Do you have any advice?
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Hi @Elaine. There was a thread on travel insurance recently. I will find it and post the link x
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Hi @Elaine , (@Nichola75 I hope I am not stepping on your toes).
A company that has an arrangement with Blood Cancer UK is:
Staysure Travel Insurance
As a Blood Cancer UK supporter you get 15% off the base premium of your travel insurance policy and free Travel Disruption Extension cover when you use code BCUK15
Other people might suggest other companies
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Thank you for your help, we are getting some quotes sorted.
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Hello Erica
Thank you. My husband seems ok. He doesnāt show his emotions very bunch ā¦ I am not doing very well. Very frightened.
Elaine
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Thank you for your help. I think I am going to need some support tbh. When he was diagnosed at the end of 2019 it was such a shock and then to find there was no treatment or cure. Then came lockdown so nothing was normal anyway but finally we resumed our lives . But now he is due to start treatment, itās even worse because itās the knowledge that the disease is currently winning and will never be completely defeated. I am scared of what being on chemo drugs for ever will mean.
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It must be such a shock @Elaine and I hope you will find some good support here on this forum and/or more individually. The old (aeroplane) cliche about putting on your own oxygen mask before assisting others holds true, I think.
I am a patient on long term chemo drugs for myeloma and I am very grateful that this treatment exists, but it does have its tough moments. However, I look at my husband and think it must be so much harder for him doing the lionās share of tasks at home and not knowing what will happen to me. Iām so glad for his company and support, though. We try to manage with a ādifferent normalā and enjoy all the little things we can from day to day.
I know the disease will never be completely defeated but all the time the treatment can keep it subdued feels like a win for now. I hope your husband will soon have some encouraging results to show that the chemo is making a difference and in the meantime that you will find the source(s) of support that will help you navigate this challenging situation.
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Hi @Elaine this forum is for both of you.
My husband definitely does not show his emotions about anything and goes around with his head in the sand avoiding anything to do with blood cancer.
Therefore it can leave me in a very isolated place which is why I am so grateful for our forum where I can say how it really is for me.
I find counselling also helped me, it was something just for me.
It is so natural to feel very frightened, it is something you are powerless over and you just want your husband ācuredā.
We are all here for you and if you would like to talk to someone the Blood Cancer UK support line is there for you 0808 2080 888.
Yes, at this point my blood cancer cannot be ācuredā. but, with or without treatment, I can live a really good quality life, no, it is not my pre- diagnosis ānormalā quite, but I was on autopilot then.
However my diagnosis gave me the opportunity to look at my life and how I wanted to to spend it and with whom.
My 70th birthday was my best birthday ever and I have learnt to say āNoā.
Give yourself time and be ever so kind to yourself and we are here for us so please use us.
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Hi @Elaine. I think itās understandable that you might need some support. Diagnosis through covid and coming to terms with things is tough and itās so much to process. What kind of support do you think would be helpful to you. There are lots of counselling and support services available. As @Erica said, the support line is just a phone call away. Sometimes it really helps to talk things through.
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Thank you so much. I feel better today but the last couple of days I was just not coping and felt a failure for not being stronger and guilty for āwanting our life backā.
Wishing you and your husband best wishes on your own journey.
Elaine
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Thank you. I do feel better today for reaching out to people. I am determined not to go under completely so I will reach out when necessary.
Thank you
Elaine
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Thank you so much for these insightful words.
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Dear @Elaine
Thank you for posting and I can see you are already getting lots of support here on the Forum.
The treatment proposed for your husband can be well tolerated but I suspect the reason that he has been advised to stay off work for 3 months is to assess how he feels whilst taking it. It is quite varied how individuals feel and if there are issues to be addressed then the treatment team can do this during this time.
May I ask whether your husband has a Clinical Nurse Specialist who he can talk to about any concerns you have around tolerating the treatment and working? I would recommend that you both talk to them so that you feel confident about talking through these issues.
Here are some resources that you may find helpful:
Chronic lymphocytic leukaemia (CLL) treatment types | Blood Cancer UK
Ibrutinib | Macmillan Cancer Support
Venetoclax (VenclyxtoĀ®) | Macmillan Cancer Support
Blood cancer and travel: your guide | Blood Cancer UK
We would be very happy to talk to you and your husband if that would help, please donāt hesitate if you would like to contact us: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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Hello Gemma
Thank you. This is reassuring. We do not have a clinical nurse specialist but his treatment has been transferred to a different hospital as they have a specialist haematology unit so I will ask. We are just waiting for them to have a bed so he can be admitted for them to start treatment and monitor for a few days.
Thank you for your advice and support.
Elaine
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Dear Elaine,
Thatās good to hear that your husband is getting closer to starting his treatment. Iāve personally always found that the thought of going into hospital etc and the worry of waiting is worse than actually getting on with it. Once on treatment, it feels a though something proactive is happening to combat the disease and I hope you will both find it reassuring once everything gets started.
That sounds excellent that your husband has been transferred to a hospital with a specialist haematology unit, as he will get the very best care. Haematology nurses are so knowledgeable and skilful.
Iāve just transferred from a hospital with a haematology ward to one with only a general cancer ward (after moving house). The nurses are equally lovely but they donāt have the same specialist knowledge - which is OK because my consultant definitely does, but Iām getting used to not asking complicated questions during routine treatments.
Thinking of you both and hoping that you get news of a bed becoming available very soon - if not already, as I realise your post was over a week ago.
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Hi @Elaine I hope you donāt mind me checking in and seeing how you and your husband have been doing this past week?
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