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Recently Diagnosed with CML

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Me & my wife have been married for 5 years ( both age 34) & while we were about to plan for family, she got diagnosed with CML last month. Her blast cells at the time of diagnosis were 3% while the bcr-abl mutation was 49%.

She has been prescribed Dasatinib 100mg as the doctors felt that it suits our requirement more and somewhere down the lane we can think of planning family. The doctor advised us not to be scared and see this as a part of life than seeing life through the lens of cml

Initially she used to have headache on a daily basis which has normalized by now but now she is getting pimples on her face which she wasnt getting ever before ( I understand this would be a side effect of the medicine but sharing from her perspective who would not get a single spot previously now has many). Also, I find her skin somewhat more red than before ( near neck). She has been the stronger one in the two of us since ever and that continues to be so for ever. 

My few questions:

- does the medication ever stops 

- what are the do's and don'ts that would help maintain a normal lifestyle. Food to avoid etc. 

- what additional things can help (meditation, yoga, wheatgrass  I read a lot about them). Your inputs please.

- does life ever gets back to normal. 

Thanks 

 

My husband and I are around same age ,he got diagnosed September 2019.first weeks are hard and I still get tensed before every blood test.
He also got pimple,but he was prone to it before.I use a mixture of yoghurt ,turmeric and honey to apply on face it seems to work (we are from india).
The doctor said he recommends stoppage trial after 2 years of undetectable status.I don't think it works for everyone ,but there are ppl in this forum on reduced dosage which decreases side effects but our doctor is not very much for dose reduction.
Check vitamin d status,husband gets bad muscle pain and his vitamin d was less than 8.
Drink lots of water and relax.It will get better as days go on.

Sorry to hear of your wife’s diagnosis there has been a recent influx of new diagnosis on here.

Yes your doctor is 100% correct although scary in the early days and rightly so this is now reduced to a managed condition with daily meds. It is only scary as it has the Leukaemia and cancer name linked to it. Try to Look at it as a general blood disorder which is easier to digest.

I will answer your questions below:

Only 50% of those diagnosed will ever get to try treatment free remission and it depends on a long sustained deep molecular response. Your wife may one day be one of those. But that’s a long way off for her now. A more realistic outcome is to respond well and slowly reduce dosage to limit toxicity while keeping CML at bay. The 100mg of Sprycel is high new studies suggest 50mg is effective and less toxic something to think about.

Live life as normal just avoid grapefruit and Seville oranges whilst on medication as it increases severity of symptoms and it’s efficacy etc.

Meditation has saved my life since diagnosis 3 years ago. I’d be a wreck without it and has kept me present, sane and much calmer.

You have a new normal but in terms of what you can and can’t there aren’t any barries or limits.

The symptoms you describe are normal for TKI my small red/purple spots persist on my upper legs and upper arms. You can get plethora of symptoms and some don’t come on until much later but for the majority they’re negligible. Some people do really suffer however so that’s no discredit to them.

My best advice to your wife and yourself, loved ones is to give it time. Time really is the best healer with this and really removes a lot of the terrifying thought projections that won’t happen. Once response kicks in this can be kind of a thing in the past. You get used to testing although naturally we all worry come test time but once things are predictable again it gets so much easier. The response milestones are a great cause for anxiety so just remember a downward trend of BCR % is really what’s needed to happen on TKI and I am sure it’s going to be the same for your wife. It is for 95% of us diagnosed.

All the best to you both

Al

 

Thanks for the revert. Our doctor told they expect a remission in around 1.5 - 2 years and medication would be like pause - play -pause to identify if we can stop the dosage once remission is achieved and if so we can plan a family during the time when medication has been paused. 

I wish everyone achieves a speedy recovery with little or no side effects. 

Thanks

 

Indeed, I had the same words to my doctor " its scary as the name is like that"  & he was like its like Diabetes, Blood sugar. Its just they are a little more common. While in reality this is yet to sync inside. When I read online at times I do get scared and have second thoughts and connecting on this forum and getting inputs from you all has been a great help. 

I hope with this new normal the life remains near to the previous normal & life expectancy and quality of life remains as before.  

Thanks for sharing your inputs and  your valuable time. I wish you all the best and hope you a speedy recovery. 

 

Hi

I was diagnosed with CML in December 2020 after being rushed into hospital with a bleeding enlarged Spleen and Pneumonia. 

I'm 54 and to say this was a shock is an understatement. I only got married on 1st October 2020 and being a 'woman of a certain age' I thought all the symptoms I was experiencing was the menopause. Scary to think  the symptoms for both are so similar.

My husband has been my rock and the amazing positive one.  I know its early days but I have had up and down days as well as trying to deal with the tiredness. Sometimes I feel a blind panic wash over me and other days I'm so positive. My nurse specialist says its all normal and just to go with it and listen to what my body is telling me.

I wish both you and your wife well and I'm sure you're her rock too. 

Any advice would be gratefully received.

Many thanks and take care.

 

Hi Deni,

Where are you being treated and which TKI are you taking? I expect/hope your spleen will shrink back to normal size as you go on with your treatment.

re: pneumonia, I suggest also that you ask your clinician to check your Vit D3 status and if it is lower than 40-60 ng/ml, that you take supplements to boost your plasma level. See the other extensive threads on the topic of Vit D and how sub-optimal levels may well affect your immune system response to infections etc.

Sandy

Thanks so much for replying.

I was being treated at Liverpool Clatterbridge Hospital but have been discharged to the care of Aintree Hospital in Liverpool. They currently have me on 400mg of Imatinib, I've been on this for 6 weeks now. My platelets are normal and the WBC is around 5. My haemoglobin was a little low but they don't seem too worried about this as they say this should rectify itself.

I was having a read of the forums last night and the have helped enormously. I will definitely speak to the nurse specialist next week about the Vitamin D.

When I was discharged from Clatterbridge they did say my spleen was shrinking quite well and the bleed had stopped. My liver and kidneys were all fine. They said the lungs would take a while to repair but felt there wouldn't be any adverse effects.

I have found it mentally quite  challenging coming to terms with this, but again time will help. I'm usually an extremely positive person, that person will re-emerge in time.

Thanks again for the advice. Take care and stay safe.

Deni

 

Hi there,
I just wanted to chime in on the ‘trying to plan a family’ part because that is close to home. After being with my partner for 10 years we finally started trying to have a family (which is something we had both really wanted for a while but delayed getting started on thinking we had more time) on the very week I got diagnosed out of the blue. 

I was 37 going on 38 which I am now so there’s definitely two layers of adjustment you need to make here when it comes to CML and family planning. Given your wife is younger than me you’ll have some good options ahead. I also am on 100mg Dasatinib and the plan is to take it for 1.5-2 years before I can come off for pregnancy. Because I’m 38 we ended up freezing some embryos to give us as many options as possible and time. I delayed starting my treatment for several months to do IVF which may not be an option for your wife but worth considering also if you have any concerns. 
 

My doctor has said to just get going with treatment (I am one month in now) and we can ‘start negotiating’ when I can come off after I get a year under my belt and we see where I am. It obviously depends where your wife’s blood counts are at to know how much flexibility you guys might have there. But given your age you might also have the good fortune of trying remission free treatment in 3-4 years and trying for a kid then? So much to consider when it comes to fertility, age, timing and CML but you’re younger than I am by several years and I’m hopeful and doing it!
 

In short, if all goes well she’ll likely be able to come off (monitored) in 1.5-2 years and try for a child. If her bloods get wonky during the pregnancy they can treat her with Interferon as an option. I am sure your doctor ran you through all this but if not I’m happy to share anything I’ve learned as I think I interrogated every doctor and fertility specialist I encountered on my options :)

 

Wishing you both luck!

 

Hi Lavinia, 

Thanks for writing.

I wish you all the best for this battle and hope you come out victorious sooner than anticipated. 

I read your story and it was very similar to ours. 
We too had thought of getting embryo frozen but this would have already taken 3 weeks time. Some of our friends are doctors and  we consulted them as well and they too said we do have time to wait for a while and get embryos frozen.
While we started the process as well , we noticed that the blood count has increased from 32000 to 40000 in 5 days. 
 

With counts increasing and no 100% success of IVF ( considering the trauma we were in and the normal probability of IVF not being successful) we dropped the idea of the same.

The doctors we have consulted are optimistic that remission should be there in 1-1.5 years and post that we can also plan family normally as well instead of IVF . All I pray for now is that the life expectancy and quality of life remains same as was before. 

These days my wife is getting plenty of painful pimples and that’s one visible side effect left of this medicine. She is also getting fatigue but lesser than before while the headache she used to complain often is now very rare. 
 

Hope you are not getting much side effects of the  medicine and I pray your body takes it just like any another pill. 
 

all the best 

thanks