You are here

Newbie and Thank You !

Hi my name is Ben Jarvis I’m 36 years young and on the 2nd October 2020 I was diagnosed with CML in the chronic stage. I had a WBC of 230 and felt like my world had been turned upside down and over. My 1st and only child had just turned 1 and I thought I wouldn’t see him reach 2.

My WBC is now at 10 and all my other blood indicators are within normal range and I feel as well as I have felt all year and I’m back to work and walking 2 miles daily with the dog. Ive started my imatinib treatment last Friday 6th Nov after 10 days off all the pills due to my bloods crashing due to a excellent response to hydroxycarbamide. 

I realise I’m at the start of a long road but finding this site and reading the many positive threads / opinions / stories has really help me and eased my many anxieties and I’m realising things aren’t as bad as I keep thinking. 

So Thank You All ! any words of advice / encouragement would also be appreciate. 
 

Thanks Ben 

 

 

 

Hi Ben,
 

Your post really resonates with me as I was a similar age with x2 small girls and like you my world came crashing down. All I had in my head was I had cancer and I’ll be dead before the year is out. Here I am nearly 3 years later stable and doing fine.

This all takes a lot of time to process and it is indeed a rollercoaster while you get used to a new you and your treatment. Give things time and you’ll see that most of your fears are in your head because this is a disease with a treatment success rate of about 90 -95%...

Yes you’ll no doubt have to pop the pills forever but a lucky 50% one day can come off. There has never been a better time to be diagnosed with CML for the very vast majority of us.

I won’t sugar coat and say things are an easy ride and there won’t be bumps along the way because things take time and side effects no doubt will rear their heads but they’re negligible  for the most part... for the majority.

Let it all sink in that you’ve kinda had a lucky escape with it being CML. My advice is spend time with those you love and doing the things you love from this day forward. And make every moment count. Tomorrow is all in our heads anyway...

All the best

Alex

Hi Ben,

It is good that you can come on to this site and express your feelings about your current situation.I hope that you will find it helpful to correspond with others that have been diagnosed with CML because the negatives are that the first six months are tough but the positives are that you will be treated with a drug that has been proven to treat your condition;you might never be totally cured but it is possible to control the condition and you will be able to lead a normal lifestyle hopefully with a normal life expectancy.If imatinib does not work then there are  four other approved drugs down the line-so called second and third generation tkis

One of my former consultants when I mentioned about this site said that being diagnosed is a dreadful game changer and the patient needs a mentor or a club or a site to correspond with so as to deal with the psychological issues about being diagnosed with what used to be a killer disease.

In the first six or twelve months you might experience bone pain at night but be positive as the drug is changing the bone marrow and killing the cml cells.You might experience some side effects from imatinib and you might have issues with muscles and cramp at night or with your eyes but this the price you have to pay for the wonderful drug.

Please remember to take imatinib with a good meal and with lots of water.

Lots of good luck

John

Thank you Alex for your lovely reply and reading some of your posts on here has really help me the last few days put things into perspective.

Going to try and see this as a 2nd chance at life and not to waste it. 
 

thank you 

Thank you John for your advice and words of wisdom it’s really encouraging. 
 

drinking plenty of water is something I need to improve so that’s a point I will take on board. Just communicating / listening to people who have CML is a massive help. 
 

thank you for taking the time to reply. Ben 

Hello Ben

I am very close your your diagnosis timings, so know how you are feeling. Good  to hear that you are back to 2 miles a day with the dog! Excellent news.

Starting my Imatinib tomorrow morning, so fingers crossed for both of us.

Best wishes

David

 

Hi David, 

Sorry to hear that, it’s bit an emotional rollercoaster hasn’t it, But looks like we are in good company on this site with some experienced people who know there stuff which is comforting.   
 

hope things are moving in a positive direction for you and stay safe. 

best of luck with your treatment, so far so good for me, keep your chin up. 
 

Ben 

Thanks for your reply, Ben. Yes indeed I think we are in very good company - and the forum seems to be international which is good!

Did you find the videos on this site? If not, they are under “Patient info-videos” essentially a recording of a conference in 2019, organised by Glasgow University. I found them most interesting and helpful, not least the Q and A session in one of the later videos.

Another of the forum members suggested I obtain and read a book called The Philadelphia Chromosome. I did and am about half way through a most interesting and relevant book to those of us with CML. Some of the science has me scratching my head on occasions, but otherwise it is a fascinating insight into the history of research into CML and it’s treatment, and well written.

Right, have just taken the first Imatinib, waiting for the “fun” to begin! Glad to hear so far so good for you.

Best

David

Thanks David I wasn’t aware of any videos or the book so I while take a look this evening when I get some time. 
 

thanks again 

Hello Ben

Hope all going well. After reading your post on “Ibuprofen” I gathered that you had had some joint pain, and that turmeric had worked a treat...Was this pain due to the Imatinib, do you think?

I am now over a week 🙄 into the TKI and am waiting for some side effects to kick in. Have you had many yet? If so, may I be so bold as to ask what, (if any) additional side effects have ailed you? 

Best

David

Yes I think so David never suffered with it before wouldn’t really call it bad pain just like I had been to the gym after a long absent it was really uncomfortable, definitely caused by imatinib. But after a few days of tumeric it has now gone completely, apart from this hick up it’s been call good David - touch wood. 

It’s good to hear it’s all gone, Ben. Sounds like the turmeric did the trick. Thanks for letting me know.

David

Hi Ben! Thanks for posting and sharing your story. I was also diagnosed this year back in April and I am 38 years old. It really is such a shock but this forum has given me more hope and peace than any chats with doctors or research or anything else. You really do need to speak to people who are going through it! You seem like you have a really good attitude about it which is great.

The hardest part is waiting and wondering what your new life is going to feel like. I am about to start my Desatinib treatment (it’s been delayed for various reasons and I’m lucky my numbers are low enough to have done so until now) and I’m just waiting for which particular side effect is going to hit me. Please share how you’re going as your treatment unfolds, I know everyone on here will be wishing you the best. 
 

Sending you positive thoughts! Good luck with it all. 
 

-Liv

Thanks for reply Liv as you can appreciate it’s an uncertain time for us but I’m trying to stay positive. Started my imatinib about 2 weeks ago and have had slight issues with muscle / bone aches but I discovered tumeric last week which has been a god sent And I’m now feeling good. 

Fingers crossed with your treatment and I’m sending positive thoughts I’m sure you will absolutely fine. I’m guessing side effects vary in different people and can be managed so I would try not to worry ( easier said than done )

Good luck with your treatment and keep me updated .

 

 

Hello Ben

Hope it’s all still going well. 16 days in to the imatinib for me now. Like you I have been experiencing joint/muscle issues in my legs,otherwise seem relatively unscathed so far. Bloods are back to normal bar the platelets, which are coming down slowly. Now where is that turmeric?!

All the best

David

Hi David, 

All is good thank you, bloods are in range have been stable for last 2 weeks I have just came back from the hospital actually after my recent set of tests. Got 2 more lots over the next Fridays and then doctor was talking about possibility of monthly tests my next BCR is due in Jan do this will be the next milestone I guess and I can report still no muscle / bone pain which Im still putting down to the tumeric, I don’t feel like I have a illness at all now which is positive.

Sound like you are heading in the right directions if platelets are coming Down, I’m starting to learn these things all take time and people act differently to medication do hang in there. Glad to here you are doing well keep it up mate 👍🏻
cheers ben 

Hello Ben,

Glad to hear it’s all going well! Excellent news.

On the turmeric front was there a particular brand/dose that you took? I should be interested to know...

Many thanks.

Atb

David

Hi David 

its a product from vita premium ( orange / black label ) says high strength on it. 
 

hope all is well with yo

cheers Ben 

Thanks Ben

Not too bad, thanks...legs and knee joints definitely ready for the Curcumin/tumeric!

Atb

David

Good luck hope the pain eases soon 

Patients on these boards report varying side-effects from imatinib. I am far from convinced that supplements will negate these issues. I did suffer very badly from cramps and associated pains. I would typically have cramps most nights in the legs and feet but weekly I would also have daytime cramps in the legs, feet, fingers and jaw. The day I came off imatinib and started dasatinib all of the cramps stopped. Once I had leg cramps in the swimming pool and had to gradually move myself towards the steps to get out but each time I moved an inch the cramp intensified. It took me 20 minutes to get out.

I must say I'm torn between staying on Imatinib and asking to switch at only 6 months in. Yes, the pains can be a nightmare and restricts my love of cycling and long walks etc. but I would rather reach a level of 1% or under (was 7.3% in Oct ) with a treatment I know that's working for me and bear with it for a while longer, and see what state I'm in at 9 and 12 months. Thanks to John on an earlier post for sharing his experience of a good improvement after 12 montgs on Imatinib, giving me some hope. I can't say the supplements have been a gamechanger for me but I have started acupuncture which has helped plus taking some paracetamol gets me by. I'm also wfh at the moment and that makes a big difference to managing it. Best of luck to all others in these early stages.