Hi there everyone, urgent question
My husband is going through his first course of flag IDA. It’s been about 11 days since his last dose. It’s now a watch and wait to see if it has any effect on his leukemia. My main question is, I have been going everyday for the past 2 months and been spending all day with him in the hospital because he’s been on other chemos. However, theis CHemo flag IDA reduces the neutrophil levels quite low and makes him susceptible to infections (20% chance of fatal infection). Because of this, my family has panicked and advised me not to see him for the time being while his neutraphil level is so low (todays count is 0.1 to help keep him safe and prevent infections. do you advise this isolation while it’s so low or is it ok for me to visit him and go and see him? I am so worried he’s alone and I’m not seeing him and im missing him. I know it’s important for me to keep him safe but is this isolation nesseccary for him or can I see him?
Hi there everyone, urgent question
Good morning @Prettymurriam and welcome to the forum. That must be a really difficult decision, especially as you have been with him every day so far.
I wouldn’t like to advise on something like this as I think your husbands medical team is the one to give you the most reliable advice. Has he got a specialist nurse you could ask or another member of his team? I have also copied in @GemmaBloodCancerUK and @LauranBloodCancerUK who may be able to help.
How are you and your husband both doing? It sounds like it has been very full on for you both and your family.
Remember the support line is there as well.
Blood cancer information and support by phone and email | Blood Cancer UK
Please keep posting X
Hi and a great big welcome to our forum @Prettymurriam. @Nichola75 has answered your urgent question so much better than I could and it is definitely a good question for your husband’s medical team. I am sure they would have told you so far if you should not be there or so close to him.
What I was struck by reading your post is that you must be absolutely completely emotionally, physically and practically exhausted and tired spending all day, every day with your husband. It also comes out from your post how much you love him.
I expect he is also very tired, and perhaps feeling weak. He might also have so side effects to contend with.
While your husband is being looked after and treated it is a really good time for you to look after yourself too and to replenish your own batteries.
Carers (spouses) are the unsung heroes, you are a star.
Be kind to yourself as well and please keep posting I would like to hear more about you.
Hi @Prettymurriam, welcome to the forum, and thank you for taking the time to share this. This must understandably be a very difficult and worrying time for you, may I ask how you’re coping? @Nichola75 and @Erica have given you great advice already, and as has been mentioned, we do have a support line, which you’d be very welcome to call if you’d find it helpful to talk any of this through at all (0808 2080 888).
It’s so understandable that you’ll be missing your husband and worrying about him at this tricky time. I do agree that it would be worth having a chat with his medical team about this question, so that they can support you and advise you on this. We do have some information on our website about neutropenia, however I think your husband’s team will be best-placed to talk you through it. As he’s in hospital, he will be closely monitored, particularly if he is neutropenic.
I hope this helps a bit but please don’t hesitate to reach out to us if you’d like to talk this over, and our Nurse Advisors may have more to add to this when they return. Please do let us know how you get on.
Definitely listen to what the medical team say, but from my own experience of almost dying from a neutropenic sepsis during my chemo, I can tell you I would have done absolutely anything to avoid it, even if it meant missing a bit of family contact time. I felt incredibly ill during my treatment and had some truly horrific experience, but the neutropenic sepsis was the most terrifying few days of my entire life. I could just feel the life slipping away from me with alarming speed.
I know it probably feels cruel not to visit him, but in this situation it probably is a case of being cruel to be kind, especially with the currently peaking wave of Covid.
Thank you so so much everyone for ur advice and messages. Really helped. Planning to speak tommrow to his medical team to get some proper answers. It is incredibly an exhausting traumatic experience all of this, but we do anything for our loved ones and I strongly believe in going through everything together with your other half. No matter how hard it is, I do it for him and I’m with him!
He is very lucky to have you. Please let us know how you get on after your conversation with his medical team. Take care X
Thank you for posting and I can see that you’ve received great advice from the Forum members and @TanyaBloodCancerUK. I would agree that talking to the Nursing and medical team is the right approach. It is important to reduce risk of infection during this neutropenic phase but contact with loved ones is very important too. Prior to the pandemic visiting those with neutropenia was allowed as long as the visitors were well (no signs/symptoms of infection) but I think it wise to discuss the visiting rules now with the ward team. In the meantime are you able to call/face time your husband to ensure he still has that vital contact?
Please do call if you need further support: How to contact Blood Cancer UK | Blood Cancer UK
Hi I had flag ida last year. The chemo was awful. My neutrophils were zero before I had it and I had it at home and in the day care unit. However, a week or so afterwards I was very Ill and spent about 4 weeks in hospital with no visitors. On a positive note it got me into remission so I could have a stem cell transplant.
Hi @Muzza. Sounds like a tough time. I’m glad it got you where you need to be and I hope you are doing well now?
Hi everyone, thanks for all ur messages and some of your personal experiences. They are allowing me to see him thank gosh but of course I have to make sure I’m washing hands constantly, not too much physical touch/contact, do covid tests daily, makes sure I’m well and not poorly. So thank god! It’s great to be back with him and there for him. It was becoming too much for both of us. Now it’s just a watch and wait to see if this chemo will be effective for him, about a week left until we get the results if it was successful or not.
I’m so glad you are able to see him. He must be really pleased as well. I’m hoping that it all goes well. Please keep us updated when you can. Sending lots of love X
Hi @Prettymurriam I can hear the relief in your post that you can see you husband.
You are obviously being sensible and taking all reasonable precautions.
Please let us know how you are both getting on.
Look after yourselves
Hi there I’m new to the forum and I hope I can give you some hope.
I have had leukemia 4 times (Acute Myeloid Leukaemia) during my treatment I also had flag, while it is an aggressive chemo it is very good and got me into remission quite a few times.
I truly feel for you going through this especially with coronavirus. I know when I was visited people had to wear masks, gloves and aprons and this was long before coronavirus (nearly 15 years ago).I’m sure if you are the only visitor and you do lateral flow tests and wear masks ,gloves and aprons provided by the hospital it would be fine.
I’m pretty sure it would be beneficial for both of you to be able to do this . I’m also sure if the haematologist didn’t think it was a good idea they would say that. I wish you both all the love and luck in the world.
Don’t ever give up hope stay positive.
All my love Rose
My husband was same everything on the floor after same treatment for Acute Myeloid Leukaemia. I visited most days but did antigen test beforehand and kept my contacts small so not to put him at risk. Your visits will keep his spirits up.
Welcome to the BCUK forum.
Thank you for posting today and sharing your experiences.
Stay safe in this very hot weather!
Welcome to the BCUK forum and Thank you for sharing your experiences with others.
I hope you are managing to stay cool in the heat.
Hi @Rose1 thanks so much for joining our forum and already showing the value of it by sharing your experiences.
This forum is also for you to say how it really is for you sometimes.
I was diagnosed 18 yrs ago and still get anxious before and during medical tests, results and appointments.
I look forward to hearing more about you, look after yourself.
Hi @WestCork1958 a great big welcome to our forum.
Yes, having visitors is so important when patients are in hospital.
Unfortunately some patients are in hospitals a long way from home.
I like your idea of shorter visits, it breaks up the patients day and are not too tiring.
But perhaps family members and carers also need to look after themselves.
Perhaps they are on the same emotional journey, but also keeping all the plates spinning behind the scenes.
Look after yourself and please keep posting as I look forward to hearing more about you.
Thank you Erica for that kind message. I was first diagnosed 28th July 2000 it is a date I don’t think I will ever forget. It came back in 2003, 2005 and 2007.
Luckily for me I had a bone marrow transplant 15 years ago , I still have to have treatment for my immune system every 4 weeks. I totally agree when I have my bloods done especially if I don’t feel great I do feel anxious . I am a firm believer that trying to stay positive is helpful and also I truly believe I have a beautiful guardian angel in my mum who sadly passed away when I was 7.If I can help anyone struggling with this awful illness I am honoured .