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Husband just been diagnosed

Hi, my husband has just been diagnosed with CML - chronic phase. We were told on the day of diagnosis(1st March) that he would be starting on Imatinib and given a booklet about CML. Today had a phone call to say he’s got to go to hospital on Thursday for ECG and other heart tests, then have a bone marrow biopsy straight after and they’re changing his medication to a more aggressive Tki starting the same day. This all seems so sudden. We had just got our head around things and now it all seems to have changed. My husband is very worried and is thinking that it’s worse than they originally said. I’m trying to stay positive for him so can’t let him know how worried I am. Is this normal procedure!

 

Hi Carole - welcome to the CML support forum.

Most people (> 95%) diagnosed with CML will never die from CML. Keep in that in mind as you and your husband begin this journey. But there are steps his body and mind will have to take to get there.

Treatment options almost certainly will get him into a remission state that ultimately will lead back to a very normal life.

First recommendation is to read Sandy Craine's "pinned" facts about CML above forum posts so you can get oriented. Another resource is the NCCN guideline for CML. It's a handy reference.

https://www.nccn.org/patients/guidelines/cml/files/assets/common/downloa...

Your husband is going through initial testing phases to learn which type of CML he has and to verify treatment protocols. The second generation drugs are more potent than Imatinib. Imatinib was first and ground breaking in its impact on CML treatment. It helped show the way in targeted therapy for cancer (kill cancer cells, leave normal cells alone - mostly).

The fact that your husband is in "chronic" phase is very good. It is being in chronic phase that will lead to successful treatment.

 

 

Hi Carole

 

I was diagnosed 14 October 2017.  At first I was told I would be on Imatinib, but after all my tests (bone marrow, spleen size etc White blood count of 330) I was put onto Dasatinib.   Imatinib seems to be the first line of defence in UK until the consultant has all the information in front of him/her.  So long as your husband is still Chronic he shouldn't worry, as the drug taken isn't more aggressive or less aggressive, it is just different.  

My husband was worried at first when my consultant moved her thinking away from Imatinib, but her reasoning was that, whilst I was still chronic, I was at the moderate to severe end of Chronic and therefore a second generation TKI would work better.  I started Dasatinib on 8 November, with 84% PCR-ABL1 but, after 3 months, I've dropped to 4.7%.   I would therefore urge you both to embrace whichever TKI you are prescribed.  I was scared after being told I was at the severe end of Chronic, but that doesn't matter too much when you see your test results dropping like a stone.  My WBC is now 5.7 so all is as well as it could be.  

My real worries now are around everyday stuff.  I need a tooth implant but my dentist needs to talk to my consultant before we can even think of going ahead with that.  Therefore I might have to have a bridge, rather than an implant!!  All everyday, mundane worries.

Hi Carole
I totally understand the worries you both feel. The first few month especially after diagnosis is such a roller coaster. My husband was diagnosed at the end of Sept . His wbc was over 200k and he had an enlarged spleen. We are in the US where depending on your insurance it is more common to start on a second gen TKI. we were v grateful that his insurance approved this route. He is on dasatinb. It has been incredibly effective so far. His WBC was within normal range within a month and at 3 months the leukemia in his system had dropped from 89% to 0.7%.
Psychologically as soon as his white blood count cell started to drop we both felt better because we knew the TKI was working. And he really started to feel better 2 months in when his red blood counts started to return to normal and he got more energy.

This is a great place for support and you can ask any question and people will be glad to help. Its very daunting at first to try and understand all the terminology and the test results. Make sure you get written copies of them. I have gone to all my husband's appointments and i take notes and have questions that i take with me.

The progress they are making in treating this disease is remarkable. Other than some days when he feels tired my husband feels pretty good now. He works, goes mountain biking, does diy around the home.
Have your husband drink a lot of water - at least a gallon a day, and eat healthily. the water esp really does help with tki side effects like headaches.

I am sure it is a great support for your husband to have you by his side.
best wishes to you both, louise

Thank you for responding. I’m still trying to get to grips with all the terminology and everything about CML but I’m hoping that if there’s anything I find that I’m unsure of I will be able to find the answers here. I’m so glad that you’re treatment is going well and things are going in the right direction.

Thank you for replying. I’m glad that your husband is responding well to treatment. I intend to go to every appointment with my husband so that I can understand everything that’s going on with him and what he’s going through. I will make sure that I get copies of all his test results.

Carole we are now getting my husband’s blood results back in advance of meeting with the doctor. That allows me to do my googling , ask questions here etc before we meet with him. 

We found it very reassuring to get very regular blood tests at first - every 2 weeks for first 6 weeks or so. I am sure you will as well. Luckily now you just have to do the bone marrow biopsy once.

My husband gave himself a bit of a panic attack reading through all the TKI side effects just before he went to bed after taking dasatinib for the first time.  He has found it very helpful since then to let me do all the reading and he just focuses on how he feels that day. It has worked for us :) 

 

Carole, welcome and thank you for sharing your journey.   I am in the same boat with my husband Tim.  He was diagnosed September 2017.  We are 5 months into the journey and you will survive it.  It all seems so much, roller coaster ride with the emotions and just trying to learn and cope.  You will get through this and chronic phase is the best, it is treatable.  Tim also was booked in for all the test;  heart, blood and bone marrow.  They have to confirm the diagnosis and Imatinib is the first choice, they just need to be sure.  If he needs a more agressive one, this is the time to find out and start on it.   My husband started on it right after the tests.  We might have to change because he is slow to respond, though he gets there in the end!  You will get your head around the terminology, give yourself time and ask questions.  Write them down as you think of them and I found that as I read more, I answered my own questions.  Bring the questions along and the nurses or doctors will answer them and write down the answers because you will forget!  We travel 3 and a 1/2 hours for our clinics in Glasgow, so hopefully you are a little closer to yours!

This forum has been invaluable, many 'old-timers' to help us newbies out.  We have so appreciated so many opening themselves up and sharing what they have experienced and been though.  Back in September I would have never thought that 5 months later we would be doing so well.  There are ups and downs, side effects and we have had to change things like work temporarily but you will get there.  Stay in touch and ask away.  All the best.

Michelle