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Husband diagnosed....terrified

Hello

My husband has just been diagnosed with CML last week, he is just about to turn 30. He seems to have taken it very well and is very positive, but I think he is putting on a bit of a front so to not worry me. I am pregnant with out first child, and I can't help but feel heartbroken and terrified about it all.

He has started taking tasinga 300mg and will have blood taken every week for the next 4 weeks, followed by an appt with Dr after a month. He didn't tell me any of this until this weekend so has gone through the whole diagnosis on his own. He said that his WBC was 28 and it was caught early.

I suppose what I want to know is whether he is going to die of this. We have so much to live for right now, everything had just fallen in to place and now I am terrified that I will watch the love of my life get very sick and then die in his early 30's. I know it sounds terrible but it is making me not even want the baby because I just don't want to end up on my own with it and him dying and having to leave us behind.

Sorry if this sounds really dramatic, I have just got myself so worked up, have sat on google all weekend and scared myself silly with all the 3-5 year survival prognosis.

Any advice and info would be greatly appreciated, I am not holding it together very well at the moment and can't say all of this to him as I don't want to scare him

Hi

We are all very familiar with the initial fear after receiving the diagnosis of CML. However, we are very lucky with the drugs that are now available and, if you look through this site you will find lots of us have been living with CML for many years. I remember my nurse explaining that living with CML is like having diabetes -it's controllable and most of us will live our normal life span if we keep taking the drugs. Also, for some it may well be possible for us to continue our lives without medication after some years if our counts remain normal.

You are bound to be very anxious, especially while pregnant with your first child, but please don't think that it's a 3-5 years prognosis - that is now history. When diagnosed 5 years ago my WBC was also low at 26, and , thanks to medication I achieved remission quickly and have held it since. Life goes on pretty much as normal as I'm sure it will for your husband once his body grows accustomed to the medication and any side effects diminish.

Don't try to overload your brain with too much information right now - that can come once you are both over the initial shock -, but do read back over this forum with countless postings of good news. Keep posting with any queries - many of us have found this site to be very supportive, abreast of new developments and useful with lots of knowledge and experience. I'm sure you will get lots of replies to your posting.

You will feel better about this as your husband progresses and be able to look forward to the arrival of your baby.

You are in my thoughts,
best
Chrissiex

Thanks chrissie - I'm such an emotional wreck at the moment, reading that has managed to make me cry!

My biggest concerns are that he won't respond to the medication or that he will but will get resistant to it. I don't know how common either of these things are?

Also, with life expectancy, if all goes well with the daily medications that are out now do you think he can expect to live a normal life span? We are childhood sweethearts and celebrated our second anniversary this weekend and I felt so sad at the thought of us not growing old together

Again sorry for being dramatic, my hormones are all over the place at the moment which doesn't help!

Thanks for your reply x

I'm sorry my posting made you cry. That was not my intention, but of course your hormones and emotions are all over the place I hope they were tears of relief!

You don't say where your husband is being treated. If possible, go with him to his next appointment armed with a written list of questions you will have so you don't forget the minute you go in to see the doctor. If you are near enough to attend the annual patients and carers conference (details on the Home page of this site), it worth doing as you get to meet other CML patients + families, learn more about CML and ask questions.

Try to stay positive - it's far too early to be thinking about what ifs..., but it's natural you do. I remember when I got my diagnosis, my consultant started with the words "Congratulations, you have CML" (as opposed to anything else) and when I asked about resistance he said "We'll face that bridge if we come to it". It is called "the poster cancer" for a good reason - more is known about it than others and since 1999 there are several drugs out now to treat it.

Chrissiex

Sorry - details are in red at the top of the forum page.

http://www.patientpower.info/video/love-and-medicine-conquer-cml

Hi,

Please watch this video with your husband - this was me two years ago and I'm still doing just fine after almost 4 years. I'm pushed for time right now, but please do come back here with any questions as the internet is full of misinformation ( I learned the hard way like you just have).

Welcome to the club that nobody wants to join, but you are in excellent company. The prognosis for CML is excellent so please try to take some comfort in that and in due course we'll provide some more reassurance and advice as required.

Chris

Hi and welcome, it's good to cry, but try not to be terrified.

Your husband is being treated with a 2nd generation TKI first line. It is unlikely that he will fail to respond well, but if nilotinib is not effective enough for him, then there are 4 other alternative TKIs available.
Survival of 3-5 years from diagnosis describes the 'natural course' of the disease in chronic phase without effective therapy... However, since the advent of targeted therapies over the last 15 years- starting with 1st generation imatinib and now 2nd generation nilotinib, dasatinib, bosutinib and ponatinib- most patients diagnosed, at least in chronic phase, can be pretty sure they will respond to TKI therapy and live out their normal lifespan.

Try not to focus on the 'what ifs'..... and yes, if he responds well over the next few months of treatment, then he can expect to live out his normal life expectancy.

Being diagnosed with a cancer can be a terrifying experience, give yourselves time to understand the disease and how it behaves without effective treatment and then
see how it behaves when treated with an effective therapy... i.e with a TKI.

Many of us on this forum were diagnosed some years ago and the majority of us have benefitted from TKI therapies of one kind or another and are here to advise you.

As Chrissie suggests, go with your husband to his next appointment. I am sure his haematologist will reassure you both, and you will be more able to support each other. Over the next few months, you will become more confident, but in the mean time do not hesitate to ask advice on this forum. There are many who have been in the same or similar situation.

Sandy

Thanks again Chrissie. It is so nice to come on hear and get things off my chest. Don't want to get too upset in front of hubby because I don't want to scare him, and he hasn't told anyone apart from me so I feel like I could burst with this massive worry and pressure!

Thanks Chris. I will watch this with him tonight.

I know that google is sometimes the worst thing you can do but it's just so accessible and all I have been doing is googling life expectancys and can't find anything which tells me he will be alive longer than 10 years, which has caused my panic.

Husband is really chilled, is comparing it to my Crohn's disease and saying "I just need to take a tablet everyday and I will be fine" but when it's cancer I just don't see how you can look at it that optimistically.

I admire him though, wish I could turn my brain around to his mindset. I guess it's fear of the unknown

I appreciate the time you are all taking to respond to me. It feels lovely to just have some reassurance from people who know more about this. I am sure I will feel a bit better when I meet his doctor, but my husband is reluctant for me to do so as he thinks it's stress for me and the baby, he doesn't realise that being kept in the dark about things makes me feel worse!

I also have Crohn's disease which flares up when I am stressed so he is very worried about this happening and affecting the baby. But at the moment my main priority is him.

I just pray and stay positive that he will be fine and we will be able to bring up our baby together. He has already frozen some sperm for the future as a worst case scenario.

His Dr is hoping that his 3 month blood tests come back with no traces of leukaemia - and that will be 2 weeks before baby is due so I will keep my fingers crossed for that

Thanks again

Hi there - a lot of others have said great things

I was diagnosed in my mid 30's 7.5 years ago, since then things are up and down as you might expect, but I am sitting here typing, a father of 2 (one came after diagnosis) living and enjoying a pretty full life.

I have something like 0.001% of leukaemia in my blood thanks to the various medications

Just back from an 11k run I am fitter / healthier than since my early 20s

and I am looking forward to many more years :)

Sometimes it is hardest on those that we are close to, and I am extremely lucky to have a supportive wife, family and set of friends. There are lots of great resources out there not only for your husband but you yourself and you should use them if you need to. Support groups, charities etc

I also say my diagnosis was the worst and best thing that as ever happened to me, for sure a cancer diagnosis is a terrible thing, but it has also made it very clear to me what is and what isn't important in life. It makes it very easy to prioritise the things you do.

you have found a great place with a lot of supper supportive people

rob

I'm glad that you are doing well 7.5 years on.

If you don't mind me asking, what kind of ups and downs do we expect to face? And have you had to change your medication at all during this time?

I think that if this was just a condition, I would be able to be far more practical about it. When the words cancer or leukaemia are put into the equation all I seem to think of is death and it scares me so much

I also have health anxiety, which doesn't really help at times like this!

Can I just start by saying that In my opinion you need to think of yourself and the baby as well, and in some respects you can be selfish in that respect and take it easy and relax and put babies health and your own as priority number 1. especially as you mention your own health problems.

but to answer your questions well its things like

being told no more kids at first but them a few years later the advice changes to the positive and along pops boy #2

things like bone marrow biopsy - no way is that ever a up type of thing, luckily not had one for 6 years

the side effects of the drugs, more at the beginning, which are different for everyone, muscle problems/cramps, weight gain, tiredness. But for me they pretty much disappeared after a few months. For me none of the side effects ruled my life, I just tried to get on an do...

At first it can be very scary and even though you read the positive forum messages and have great support from the Drs & Nurses, I did get reflective moments when you think, what if it doesn't work or I comes back. But conversely I can be doing something normal as playing with my boys and get a positive burst of emotion well up and think how lucky I am, and that can be very powerful...

I have switched from Imatanib to Dasatanib 3 years or so, as I was found to have a mutation which was resistant to Imatanib. But Dasatanib and Nilotinib both where effective against it.

And even after a few complications where I have had to stop taking Dasatanib for a short period I am down to taking just 40mg a day with no side effects...

rob

Thanks rob, it definitely sounds like you have had some downs but plenty of ups.

And you are right, I have to protect the baby. The last thing we will need is for something to happen to our child so I should make that my number 1 priority.

Hopefully we will adjust to all of this in time. I have been reading up on it all for the past few days, found some positive posts where peoples doctors have told them to expect good health for 30-35 years, that made me so happy!

I have also read that there is a vaccine for CML being tested at the moment, hopefully a more permanent option like that will be available soon.

In the meantime I will try and keep my spirits up until I can attend his next doctors appt armed with all of my questions!

Your support today has been invaluable!x

I was thinking about this thread last night and just wanted to add that

there has been far more ups than downs over the last 7.5 years

so stay positive :)

not sure if you have said where your husband is being treated?

He has private medical cover so is under the princess grace hospital in London now.

He has booked an appointment with his dr at the end of the week so that I can go with him. I will make sure I am armed with a lot of questions.

Hi,

I'd just echo everything others have said. I am in my early thirties too, and was diagnosed about 18 months ago. It was a right roller coaster for a while but life is pretty much back to normal now - and I've had a more complex set of problems than most people - so that's really saying something.

I also had private medical insurance, but found that although the marketing brochures say "cancer: we'll be with you every step of the way" I found that to not really be true, and get seen to by the NHS. I prefer it that way, to be honest.

Anyway, you mentioned your husband is being seen to in the Princes Grace - I am also London based, so if either of you ever want to meet up to chat through it all I'd be delighted to meet for a coffee. You are unlikely to meet other CML patients by chance, and sometimes it's hard to ask the doctor some of the things you want to know so it's useful to chat to another patient. You will, of course, get great advice on this forum too!

David.

> can't find anything which tells me he will be alive longer than 10 years, which has caused my panic.

Well, there are lots of people here that were diagnosed more than 10 years ago!!

One of the reasons that the long-term data looks scry is that before we had imatinib, the outlook really was quite grim. Imatinib hasn't been around that long in the scheme of things, marketed since 2001.

For example, 30 year survival statistics for CML still make very grim reading because someone diagnosed 30 years ago didn't have the options we have now. And it takes time for statisticians to catch up, and it of course took a little while for imatinib to be ubiquitously prescribed. However, in 30 years time, the 30 year survival rates will look great!

I think your husband is taking the right attitude. I was like that at first, and I think I am like that now but in the middle I did get quite upset with it all. At first that attitude is a good defence mechanism - it's denial, in a way. I guess we all go through the "5 states of loss and grief" in our own way.

Now I try to liken it to diabetes, a condition that needs to be carefully monitored and managed but if managed well then all is good. A friend who is a haematologist says he'd prefer CML to diabetes!

I just wanted to echo what everyone else has said. I was diagnosed 6.5 years ago at 34 and all the literature I looked at said I had about 10 years - there is a lot of out of date information out there so you need to treat a lot of it with caution. You may find that going to a patient support group would be helpful? Kings Hospital have one next Wednesday afternoon (16th) which you are welcome to join even if you are not a patient and Hammersmith have them on an ad hoc basis as well.
Make sure you look after yourself and baby and rest assured that your husband will be around for a long time yet.

Karen x

Hi, I'm sorry to have to welcome you to this board. I normally just read this forum and only just started commenting.

My husband was diagnosed in November last year at the age of 29. He turned 30 last week.

We were in the process of trying to conceive our first child when he got diagnosed.

Everything you've asked I thought too - it's terrifying and still is but as time goes on you will start to see how great the medications are. We are told every time we go (now every 3 months) that his life spam is unaffected and to carry on as normal (we found it quite reassuring how flippant the doctors are over the CML).

Your husband may be putting a front on it but my advice is to let him deal with it in his own way and eventually it'll come out. I too had severe hypochondria myself but unfortunately for us our biggest battle is my husband now having severe health anxiety. Fortunately he's now started counselling to address this.

I wish you both all the best - please try not to worry as it will get easier! x

On the subject of Private vs NHS - I too am covered by a very generous company private policy, but I decided to go with the NHS as was referred to the Hammersmith where I think a lot of the countries top Leukaemia doctors are.

However I was able to get my private cover to cover the costs of the hospital/time of the consultant as they can claim it back somehow - I just filled in a form

Although based just outside London I am often working in London so also happy to meet up and talk through any questions you have based upon my experiences

rob

Hi

I can only echo what everyone else has said on this forum, but in my opinion, if I was forced somehow to pick one cancer to have out of all the different forms of it, this is the one I'd pick - it's the most manageable with the best general prognosis, the most advanced and successful treatments and the most likely for there to be a cure in the next 10 years.

I would consider it to be far more serious to have other chronic conditions like diabetes or kidney problems.

I was diagnosed just over 3 years ago aged 48, and am on Dasatinib with fair to good results. From a personal point of view, it stopped me cruising through my life and made me far more attuned to making the most of it - and I get that benefit while still having a life expectancy pretty much as good as anyone without the CML.

It's highly likely that everything will be fine for your husband and you may find that going through it makes life even better once you get over the shock and treatment starts to succeed.

I hope this helps

Rod

Thanks everyone for your replies. Have taken some time to read through some CML blogs and am feeling more positive. Sounds like life goes on as long as the medication is working.

It has just broken my heart that this has all come at a time which should be so exciting for us, instead it had left us feeling very uncertain about what our future with out child will be

Husbands doctor has already told him that if he responded well to medication for a couple of years he could probably try coming off of it, which is another positive to focus on.

Thanks for all being there during such a sad time, I'm sure I will be a regular poster on here! Looking forward to going to his next appointment with him and having the details explained to me to

Xx

I was diagnosed at the age of 45, and have now reached 65. I'm as well today as I was just before diagnosis.
Things have changed dramatically since the advent of Glivec and hopefully you'll both come to appreciate that soon.