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Recently diagnosed. Many questions.

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Hi All,

My name is Jon and from Virginia.  I am a Naval Aviator and a father of 2 with a badass wife!

Recently diagnosed with CML at the age of 32.  No symptoms what so ever.  Went in for routine blood work early November, WBC was at 23. Doctor had me do more blood work 10 days later.  It was at 27.  At that point he ordered a battery of blood work to start ruling things out.  Thats when I found out I had CML.  ONC said it was caught it early and in the "chronic phase".  He had me on 100mg Sprycel 2 days later and now on day 4 of medication.  No side effects so far, and still carrying on with normal life.  Initially scared to death but the more I learn, I thank God every day I was diagnosed with the "best" worst blood cancer to get.  My next appt. is late Dec, and ONC expects to see positive results.  I'm very grateful for a community like this.  I have been trolling every day since I found out.  I have so many questions and look forward to learning more about best practices to manage CML and live a long healthy lifestyle.  Please see below for my initial questions.  Thanks in advance!

- What questions should I be asking the ONC?

- Is WBC at 27 high?

- Best Hospital of East Coast for CML?  Looking to get a second opinion.

- I read conflicting info on what extra vitamins I should be taking. Any info would be great.

- What not to eat?

- This was on my blood work.  Can anyone interpret the percentages?

e13a2 (b2a2) transcript Comment % 01 352.6411 ----- e14a2 (b3a2) transcript COMMENT % 01 <0.0032 % (sensitivity limit of
assay) ----- e1a2 transcript 0.1537 % 01 Interpretation: COMMENT 01
POSITIVE for the BCR-ABL1 e13a2 (b2a2, p210) and e1a2 (p190) fusion transcripts.

- How long can I wait to expect side effects from Sprycel?

Thats all for now! Thanks!

 

It does seem it was caught early before overt symptoms. That is good.

You should be having weekly blood tests to verify that your blood counts are returning to normal and not dropping too low. Neutrophils and platelets are often suppressed during initial sprycel treatment. Also, 100 mg sprycel is emerging as too high a starting dose. Newer data suggests 50 mg should be started initially and either increased or decreased depending on response. High dose sprycel can suppress your normal blood system and slow your overall response as well as side effects (pleural effusion). Something to ask your doctor.

Make sure you get a vitamin D blood test and if below 40 ng/ml, supplement to get your levels above 50 to around 70 ng/ml.Vitamin D helps activate T-cells which fight leukemia. Chances are if you had high normal vitamin D you would never have developed CML in the first place (my personal theory). I would bet your vitamin D level is very low (< 20 ng/ml).

Track your FISH and PCR levels. FISH is most important at this stage. Once your FISH levels go to zero, CML will be history for you. Not a cure, just 95% progression free survival. Perhaps a cure over time.

I take 20 mg sprycel - almost from the start. I am now 'undetected' and have been for 2.5 years. Soon, I will stop therapy and "test" remission durability. We'll see.

Hopefully David will see your post and post excellent links he has for new patients.

... About that badass wife ... pictures, please!

 

Hi Jon,

Welcome. I wish we didn’t have to welcome you to this group, but here we are!

It does sound like your CML was caught very early, which is a good thing of course. 

Here’s a few resources on this site that are useful for new patients:

Videos: I’m afraid these are not sorted that neatly. It’s something I’ve wanted to do for a while, but our budget is - be be kind - constrained. But the names of the videos give you a good idea of the content. 

https://cmlsupport.org.uk/videos

I’d start here, if I were you: https://cmlsupport.org.uk/videos/chronic-myeloid-leukaemia-–-what-it

If you are more of a reader, check out our primer with a scary name (I really want to rename this some time, as it is off putting) Quantitative Reverse Transcription Polymerase Chain Reaction: A primer for patients. But you ought to be able to read the first 8 to 10 pages and make sense of it. Return back to this later when you understand more. It’s a really good booklet which was published with leading clinicians here in the UK (hence the overly medical name of it) so all of the info in it has been thoroughly reviewed by professionals and isn’t just random info.

Under the “About CML” menu on this site, you’ll find a “just diagnosed” section, which has a link to a templates page which has pages of things to ask your doctor: https://cmlsupport.org.uk/section/templates

In terms of what not to eat, basically stick clear of grapefruit. You’ll see some people on the internet worry about pomegranate and starfruits and all sorts. But unless you’re drinking a boatload of that stuff, don’t worry. Just keep away from the grapefruit (in short, it amplifies the effects of your medication).

Side effects are a hard one. Many people have little to none! But they don’t post on the internet bragging about that, they just get on with their lives. So the “online” patient population perhaps isn’t fully representative. 

Your result ... P210 is the most common type of CML, P190 is rarer. You will probably find that fairly quickly the P190 (and b3a2) component disappears. Difficult to explain, but it relates to the exact fusion point of the genetic makeup of CML. 

Lastly, there’s a link to ELN (European) and US (NCCN) guidelines for treatment of CML. The ELN one is quite hard to read - but is really good - and the NCCN one has some good introductory information for patients: https://cmlsupport.org.uk/section/cml-treatment-guidelines-tki

 

David.

The NCCN Guidelines may be blocked by an Ad Blocker, in my case by U Block Origin (across multiple browsers). Temporarily switch off the ad blocker to connect.

 

Hi Jon.

Welcome to the club no one wanted to join. Diagnosis is a very scary time for you and your family. You will go through lots of emotions over the coming weeks/months. This is perfectly normal so don’t beat yourself up at all. Just reach out on here and any one of amazing people will support you.

You are in very good hands and it’s hard to believe that a previously guaranteed fatal disease is now just a chronic blood disorder.

Yes you’ve been caught very very early. A white cell count of 27 is nothing. I was diagnosed at 37 with a white cell count of 330, massive spleen and lost of weight loss (I was late chronic phase) one of the highest I’ve seen on this forum to date.

Luckily for us as hard as it is to believe we just pop a pill a day and get on with our lives. Side effects are a difficult one as some people get none or hardly any and some poor people really struggle. What I will say is you will prob get some and some will go and some will develop later on in time. Mostly all of mine have gone or settled to near nothing. Give your body a chance to adjust this will take a while and all will be ok.

There are several milestones that you will meet over the coming months/years and once you reach MMR you can mostly forget about it all. I am 19months into treatment and only just approaching MMR now with my BCR @0.118%. Because I had heavy disease load it can take a while. I wouldn’t be surprised if you reach MMR in 6-12 months. MMR is the goal of the treatment and once you are there it’s a managed condition for however long. If Sprycel isn’t for you you will be switched to 1 of 6 drugs or lifelines I call them.

I know it’s really hard to believe at this stage but my bloods all returned to normal in about 4weeks on these amazing pills. If your prefer this disease is only a Cancer by definition it’s more a chronic illness.

Most of my life touch wood has returned to near normal. I am back at the gym lifting heavy weights and doing lots of cardio.

I will say give your body it’s best fighting chance and eat and rest well. Digest it all I am sure you’re going to be fine.

All the best to you and your family!

Alex

 

Jon,

I have an amazing doctor, Harry Erba, at Duke Medical in Durham, NC. I'm not sure how far away you are though. When I first found that he was my doctor, I started researching him and found numerous videos on YouTube where he was conducting a panel or addressing a conference. Whomever you find, check them out. I am convinced that having faith in one's doctor is critical to recovery.

Hi

I’m pleased they found your CML early. I ignored my symptoms for too long and my WBC was 450. I asked my haematologist and he said I couldn’t get a prize for the highest as he had seen a 600! 
Anyway , 5 months on it is back to normal and I’m doing fine on Imatinib 400. I get joint and muscle pains but someone gave me an exercise bike and I find if I just spend 20 minutes on that each day it really helps with symptoms. 
Judith

Hey Jon,

I was just like you where it happened out of no where. I was at 450k WBC. I was admitted to MUSC in Charleston, SC. They took very good care to me and put me right away on Sprycel 100mg. I didn't notice any side effects until +3 weeks. I am currently on 70mg do to not able to keep up with some of the side effect in the work place. Personally fatigued was and still a struggle for me. I am going on 7 months this month and all my levels are down to a normal state with A BCR able Test at the end of this month. Stay way from anything with grape fruit if on Sprycel. 

My advice:

Have a good support group to talk to.

I have tried taking Vitamins gummys but it is in your blood so no real affect.

Try to get as much exercise as you can.

Did you put any sperm in the bank if you are planing on having more kids? I was not told this and me and my fiance are getting married this year and wanted to start a family soon and since with Cemo we have to wait at lease 5 years of start talking about having kids with my doctor.

 

Hey Jon,

I was just like you where it happened out of no where. I was at 450k WBC. I was admitted to MUSC in Charleston, SC. They took very good care to me and put me right away on Sprycel 100mg. I didn't notice any side effects until +3 weeks. I am currently on 70mg do to not able to keep up with some of the side effect in the work place. Personally fatigued was and still a struggle for me. I am going on 7 months this month and all my levels are down to a normal state with A BCR able Test at the end of this month. Stay way from anything with grape fruit if on Sprycel. 

My advice:

Have a good support group to talk to.

I have tried taking Vitamins gummys but it is in your blood so no real affect.

Try to get as much exercise as you can.

Did you put any sperm in the bank if you are planing on having more kids? I was not told this and me and my fiance are getting married this year and wanted to start a family soon and since with Cemo we have to wait at lease 5 years of start talking about having kids with my doctor.