Hi and welcome to the forum.
I was diagnosed 11 years ago with Philadelphia positive ALL. I had one course of induction chemo on UKALL12 which had a similar result to your wife, didn’t achieve remission. I went home for the weekend, then was back in on the Monday for a second induction course, this time on FLAG IDA.
Getting that news after the first chemo felt like the original diagnosis all over again, my daughter was 6 years old at the time and all I could think about was wanting to see her grow up.
Emotions are all over the place and as Anna has said you take it a day at a time, both as a patient and partner. I remember each morning being thankful to still be here to fight another day. It helped that we have wonderful family and friends who did their bit to keep us going, by making sure my wife was OK and visiting me. Hopefully you have support from your family and friends too.
It did feel like a long time before my levels to come back up, but they did eventually and I achieved remission with that second chemo. I then went on to have 2 further rounds FLAG IDA, a couple of weeks home before the stem cell transplant. A total of 6 months in hospital.
Try to stay positive.
Kind regards,
Nick.
Thanks Nick,
Your story sounds so familiar, hopefully we can get a similar result to you with this round. The doctor did say FLAG IDA is a stronger course than the original so it may take a while longer for her results to improve, it’s just the waiting that is the worst part. fingers crossed and thank you for your comments
Hi Gary. Yes I thought that when I read your post, how similar it was to my own experience. The waiting is really hard, and there is lots of it.
It’s a case of finding little positive to help keep you going.
This group is really good to help you realise that you’re not alone and people do get through it.
Just thought I would keep you all updated.
My wife’s neutrophils levels are slow to rise compared to her other cells so the consultant ordered a bone marrow biopsy. After an agonising 2 day wait we got some good news!
The FLAG IDA has worked it’s magic and the early signs are that her blasts have reduced to 2% which is essentially remission, they are cautiously optimistic as there are still some test results they are waiting on however it is the best news I could have hoped for and to be honest the first time I’ve genuinely been happy in 10 long weeks.
They have agreed to let her home for a break for a couple of weeks dependent on the other results , she will have some outpatient appointments in the meantime then go back in for a 2nd course of FLAG IDA then it’s on to the stem cell transplant.
It is early days on a long road to recovery but a little win. And someone recently said to me it’s the little wins that ultimately get you through.
Thank you all for your comments and I will keep you updated, it’s time for a nice home cooked meal for my wife and definitely a nice glass of wine!
I like little wins, they all add up. I expect you will both be absolutely exhausted and that’s OK. Take care of yourselves and spoil yourselves. Please let us know how thing are going.
@Gazh200780 pleased to hear that your wife’s treatment is going well and that you will be able to enjoy some time at home as a family.
With AML it is definitely about the little wins, one day at a time and one step at a time. I know this can be frustrating to hear, I remember people saying it to me and wanting to scream but it is what gets you through.
Hello @Gazh200780,
Thank you so much for keeping us updated with your wife’s treatment and hospital visits. I am so delighted to hear about her test results and so pleased she gets the opportunity to have a nice home cooked meal with you!
It sounds as though this news has made you very happy-especially since you said this is the first time you’ve genuinely been happy in 10 long weeks (although understandably cautious too). Given the good news, what you and your wife aiming for next?
We’re just taking it one day at a time. She was only home for 5 days and had to go back in with a nasty blood infection and a fungal infection on her lung so it has been a tough couple of weeks.
Thankfully the microbiologists and doctors have worked out an effective treatment and she’s now recovering.
Some good news that her neutrophil levels have now increased steadily and another biopsy revealed the cancer cells are now at 0 so we’re just waiting on the consultants decision whether to have another round of chemo of proceed straight to transplant. Thankfully her brother is a full match so there is no hanging around for a donor.
There are down days still, especially as it’s our little boys birthday this week which she may miss and having the stem cell transplant means she may not be home for Christmas but we are still thankful there seems to be a light at the end of the tunnel and the good news is outweighing the bad currently!
Hello @Gazh200780,
I am thrilled to hear about your wife’s test results and I am really happy that she has found a donor so quickly-especially since it’s her brother.
You mentioned a little bit about your wife missing your little boys’ birthday. It is a common issue for people to miss holidays or birthdays because of treatment. How did you tell your son about his mother’s illness? We have a topic thread about the impact on family. If you feel comfortable, would you mind sharing some of your thoughts about telling your children about your wife’s diagnosis? It would be hugely valuable to others struggling with a similar experience.
Hi, it must be a really tough, emotional and physical time for all of you, I will be interested to know what it is like for you all and your brother in law and family having him being the donor. Please also let us know how your little boys and you both cope with a little one’s birthday and Christmas.
Hello… Just wondered how things are going ?
Hi Anna,
So far so good thank you. My wife is now almost 2 months post transplant and her blood levels are almost at a normal level, the donor cells are at 97% which the doctors are already pleased with at this stage. At the 100 day mark she will have another bone marrow biopsy to check if the mutations she had are no longer present which I think will be a really anxious time for us all.
She has had a little bit of sickness recently but I think it may have been a bug rather than any sinister GVHD as it seems to have subsided after a couple of days.
Thankfully so far other than weekly appointments she has remained at home and we are starting to get some sort of normality back although the fear of what lies ahead is always lurking in the back of our minds.
I’m tremendously proud of her so far she has overcome some serious obstacles and is a remarkably strong woman.
Fingers crossed she is now on the road to recovery.
Yes, fingers crossed for your wife. How are you doing emotionally and physically?
This is so good to hear, as you say she still has challenges ahead but is doing ok. Normality is a funny thing, for me I’ve found what was normal before diagnosis isn’t normal anymore, there has been a lot of adjusting to do but it does get easier. This forum really helps me because I know I am not the only one!
She has already been through so much so I am sure she will carry on being the remarkable woman you speak of
Keep us updated
Anna
Hi @Gazh200780 how are you and your wife doing? Am I right in thinking she has now passed the 100 day mark? I hope you’re both okay.
Hi Dawn,
Yes the magic 100 day mark has been and gone, my Wife is still doing fantastic and defying all odds thank you. She is now off some drugs and life is slowly getting back to normal, well as normal as life possibly could be, naturally she is still very anxious at the possibility of relapse and I don’t think those thoughts will ever disappear fully for any of us. She is now only required to go back to hospital every 4 weeks which is excellent.
There has and still are some minor instances of GVHD but the consultants all seem to believe this can be a good thing and an important part of having a successful recovery.
In the words of the consultant at this stage we couldn’t be in a better position so with everything that has been I will take that gratefully!
Thank you for your message.
I am glad to hear about your wife’s recovery and yes, I found it does take a very long while for the feelings of anxiety to subside to a manageable level for everyone in the family and friends and I find my anxiety thoughts and feelings rise as soon as medical appointments are due. How are you as the partner thinking, feeling and coping?
This is really wonderful to hear, I am so pleased she is doing well and is at home and slowly getting back to normal, although what normal looks like now may be different to what it was before. Managing the fear and worry of relapse is not easy, and if she hasn’t already I would encourage seeking some emotional support (be it counselling or support groups) to be able to work through that, and hopefully be able to manage the anxiety day to day. Let me know if this is something I can help with.
I hope you’re both okay after what I imagine has been a tense few months for you and your family. Take care.
Hi Gary
Pleased to hear your wife is still doing well. Recovery is all about baby steps and a lot of patience which we’re not always good at!
You are right that the fear of relapse never disappear… they do perhaps become easier to deal with… it just takes time. There are plenty of people here that understand this so I hope that helps.
I hope she is getting used to being at home, I found it took time to adjust.
GVHD is considered a good thing as I’m sure others with more experience will be able to confirm. (I didn’t have a transplant)