13 replies to this topic

[shaynalee]

Hi everyone, my fiance was recently diagnosed with cml. I found this forum and have been following a few threads that have been extremely helpful, so thanks to everyone for sharing your experiences.

We arent thrilled with his dr (we believe in nutrition along with medicine, but he basically says nutrition supplementation is pointless). He is always in a hurry wait time is ridiculous, and he makes us feel like every question we ask is stupid. We are currently searching his insurance network for someone else.

I figured I put put the facts up and any additional insight or help is appreciated!

26 years old
Dx 3 weeks ago Due to high wbc 111, 000
Sprycel 100mg
At 1 week blood test, wbc down to 46, 000
low side of normal in iron and vitamin d
Supplements : iron, 2000 iu d3 twice daily , probiotics, tumeric, magnesium and b2 for headaches when needed
Side effects of sprycel: migraines first few days, now headaches every so often, a couple bruises, fatigue, occasional nausea

His bmb results said he is ph+, but everything else on there we dont understand. His rbc and hemoglobin is a little low, we were told its normal when starting sprycel. we dont know what much of the other stuff listed is or what it means.

Thanks for reading!

[Gail's]

Trey is good at interpreting results if you post them. Welcome to this group although I'm sorry you had to find us. Take courage and let us know how it goes.

[Trey]

You can post his BMB report if you wish.  Black out personal info.  Follow these instructions:

 

http://community.lls...l=+post +photos

[shaynalee]

Here are his results Trey, thank you for your reply! Hoping you can interpret some of it better than I can.

Also, for anyone on sprycel... how do you manage the fatigue and sun sensitivity? Its really affecting his day to day activities and work.

Attached Files

•  20150420_120424.jpg   120.72KB   3 downloads

[shaynalee]

First page...had forgotten to remove personal info

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•  Screenshot_2015-04-20-12-22-40.png   1.01MB   2 downloads

[Lucas]

hey, shaynalee, it seems you discover your cml early. you have rare blast and that's a great thing. also you have low eosinophils and basophils (great thing too!). you have the PH chromossome in all cells analysed and that's the normal for cml. i don't know what the cd56 cells means. good luck!

[Trey]

The lab reports (BMB, FISH, Flow Cytometry, etc) simply show standard Chronic Phase CML.  Nothing to be concerned about.  The only issue for him now is how well he responds to the Sprycel.  He should have FISH and/or PCR done every three months at first, and CBCs at least monthly, so make sure that is being done.

 

Although the report mentions MDS in one paragraph that is not accurate since CML has CD56 expression in the leukemic myeloid cells.  So that is not an issue.  CML cells look like some forms of MDS and many lab techs don't know that.

 

I am impressed with how the lab did all the right tests.  This is not always the case.

 

Taking vitamins is a good idea especially while the blood is being reconstituted.  But I do not believe they have much to do with drug response except that taking Vit C at the same time as the drug helps assure proper acidity which helps drug uptake.  But that is a minor issue.  Go easy on the iron -- a person can get too much.

 

So let us know the FISH and PCRs results.

http://community.lls...w-updated-2014/

[dede5]

Also, for anyone on sprycel... how do you manage the fatigue and sun sensitivity? Its really affecting his day to day activities and work.

I can only speak for myself, and it doesn't affect everyone the same way, but both of those are pretty extreme for me. Some say the side effects ease up after awhile, but that hasn't really happened for me. I can say that the fatigue is worse some days than others. I've just had to make some lifestyle alterations. As for the sun, I avoid it like Count Dracula himself. It isn't lost on me that he also has a blood disorder  

 

Maybe some others will give you a different perspective on this. 

[Billie Murawski]

Hi Shaynalee, as we say to you and your fiance welcome to the club nobody wants to join.It is such a shock at first and you feel so alone, we have all gone through the same thing. I highly recommend you get a new oncologist, I got a new oncologist 3 weeks after my diagnosis. Many people on the board have the locations of all the oncs all over the country. He is young and I think he will be able to cope with the fatigue, there are a lot more people that will tell you how to cope with fatigue.Sun sensitivity is a classic side-effect, he has to wear a strong sunscreen            Good Luck Billie

[shaynalee]

we are currently looking for a new oncologist, although we dont have many options in our area. Hopefully we find someone in our ppo network soon.

The current onc is having him come in weekly for blood tests for the next 3 months...I know he wants to make ure he is responding appropriately, but it seems excessive to me....

[scuba]

we are currently looking for a new oncologist, although we dont have many options in our area. Hopefully we find someone in our ppo network soon.

The current onc is having him come in weekly for blood tests for the next 3 months...I know he wants to make ure he is responding appropriately, but it seems excessive to me....

 

Once a week is normal in the beginning - especially with Sprycel. Sprycel can cause severe myelosuppression (very low Neutrophils/platelets). This needs to be monitored for 4-12 weeks to determine response. Once he levels out and actually recover, then you can start a 3 month program (FISH at first followed by PCR). If myelosuppression occurs, then dose reduction can be done to find the right dose for response.

 

It is likely your husband will respond fast to Sprycel (w/ deep response). Your goal is FISH = zero; followed by PCR dropping to 0.1% (major molecular remission). If he gets to 0.1% PCR quickly - he will never die from CML - worry about other things. 

 

I strongly believe in nutritional support - especially vitamin D, K2 and Curcumin. I personally have taken my vitamin D level to high normal (around 60-70 ng/ml) and work to keep it there. If nothing else - your husband may not need full dose to maintain excellent response. 

[shaynalee]

That makes sense Scuba. He is taking vitamin d and tumeric, it does seem to help with the fatigue and achiness. Any particular brand of curcumin? I just grabbed Gaia tumeric extra strength

[scuba]

That makes sense Scuba. He is taking vitamin d and tumeric, it does seem to help with the fatigue and achiness. Any particular brand of curcumin? I just grabbed Gaia tumeric extra strength

 

M.D. Anderson Cancer center is doing studies with Sabinsa C3 Curcumin. This is the Curcumin I take (8 grams per day). Turmeric is too low bioavailable to be much use in Cancer - although it is very good for arthritis aches and pains.

 

Assuming I can remain off Sprycel (my own personal trial), I will probably lower my Curcumin dose from 8 grams per day to 4 grams per day - as 1 gram caplets (I hate taking pills).

[shaynalee]

My hubby hates taking them too! If it wasnt for me, he honestly wouldnt even take the sprycel...he's quite stubborn. Lol. I will look into getting something more like the one you take then, thanks