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I’m trying to not freak out

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In November my BCR-ABL was 63%

By April it was down to 24%

I got my labs results today and it’s now back up to 57%

I’ve been on Sprycel.  

My doctor wasn’t in today, but the nurse thinks he’ll want to send me to a Blood Cancer Institute.  When I looked them up, they specialize in stem cell transplants.  Isn’t that an aggressive next step?  Shouldn’t I try a different TKI first?

Based on your collective experience, what would you all recommend as the next tki to try?  We started with Sprycel because it has the lowest side effects.

 

p.s. My doctor is young and dare I say inexperienced.

 

What does do you take?Of course you can and must try other tki!!Also do research in tis forum and you will find plenty information about how supplementing can help you!!!And one last question...are you sure you didn't take or eat something that interacts with your tki??

Currently on 50 mg, going back up to 80 over the weekend.  Hopefully will connect with my Doc on Monday to get more info.  Only talked to the nurse yesterday.

I have cut out green tea and grapefruit, never taken St. John’s wort but what else should I be avoiding?  

I have taken Vit D3K2, B multi, zinc, chelated magnesium biglycinate, digestive enzymes, and lutein for years.  Added curcumin recently.

Generally the first step is to ensure they concentration of tki in your blood is at a sufficient level by hour 20 . Hospitals can make this test.

If you're showing good concentrations, try upping your dosage and recheck.

Next line is moving to a new tki.

You're still in hematology remission and so your health is not in immediate danger. it will help if you remove stress from your life and try not to focus on your bcr/abl but more on your quality of life .

Best of luck!

Yes try to take things slow. You are not in immediate danger. If it is determined that Sprycel is not working they will most likely put you on another TKI before even considering a stem cell transplant which is a big expense and a big deal all around. Your body is trying to acclimate to the drugs you are introducing into your system. Upping the dose would probably be the first thing to try as you would want to get the most out of any treatment before abandoning it most likely for good. You will find a sweet spot. Just try to eat well, mostly fresh food, no junk food or sugary drinks and no alcohol. Mostly clean fresh water. Above all keep stress to a minimum. Living with CML is a way of life you will have to adapt to for the foreseeable future. Like anything it takes practice.

Ugh!  My doctor is on vacation all week.  Rather than have another doc look at my results, his P.A. is handling my case.  She refuses to call me.

According to the nurse on call (not the regular nurse) my blood sample from last week has been sent in to test for a tki mutation analysis to see if a gene has mutated.  I have no idea what that means.  Has anyone else dealt with that?

Additionally, my blood has been sent to the Blood Cancer Institute to prepare for the possibility of a bone marrow transplant.

I have lost confidence in my doctor, as this is the 3rd time he has recommended an extreme treatment for my diagnosis.  The first time he wanted to send me in for Leukapheresis (clinic said no, we don't do that in my case)  Second time he wanted to give me blood transfusion but the doctor on call (with more experience) said no, I didn't need it.  

What is the process for changing doctors?  Not because he is on vacation, but because he is trigger happy with extremely invasive therapies.

Doing a mutation test is very reasonable.  If you have T315i mutation for example, then you need to make a switch to Ponatinib.  There are certain mutations that other TKI's would do better in combating.  I would lean towards the opposite in that if he did not recommend a mutation test it would be irresponsible.  It is important for the BCR-ABL to show signs of decreasing.  If your blast counts are low, then you have time to figure out what TKI is best suited and a mutation test is a sensical place to start.  Samples being sent for BMT may be a precaution.  A second opinion is also a good idea.  It is early in your treatment so keep your head up and I hope you find the right TKI for you soon.

Hi Rocky Mountain Gal - I sent you a PM message.

Blood Cancer Institute has called twice to set up a consultation.  I don't answer my phone, but should I?  Has anyone here had a bone marrow transplant?

If you have been diagnosed with Ph+ CML, im very wary of being put forward for a bone marrow transplant. Sounds off to me.

What are your options for a second opinion?

What part of Colorado are you from? My Dr. Is in Lonetree and I’ve be seeing him for 7 years.  Can give you his name for second opinion.

I FINALLY got to speak to my Dr. yesterday.  He's been out with Covid.  He ran a new BCR-ABL and I'm now at 45%.  Better, but not great.  I increased my Sprycel to 75mg by taking 1 & 1/2 50 mg.  I also fasted for 3 days and now eat a clean Keto diet.  Most importantly, I have people praying for me.  Still waiting for TKI mutation test.  

I looked up all the drs in Northern Colorado and NONE of them specialize in CML.  The 2 that even mention it are newbies in the field, just finishing their internship.  My doc is willing to reach out to specialists, so can anyoe provide contact info for them?  He knows about Dr. Cortez, and believes that there is one at the Mayo clinic in MN.

 

No TKI mutation.  I'm not sure if that's good or bad.  As I look through other peoples posts, It seems like everyone else had much lower PCR numbers at diagnosis.  My doc thinks I should be at 1% by now, but considering I started at 63% is that realistic?

Hi, I believe in general regardless of where you started the goal for "optimal" response is <10% at 3mo and <1% at 12mo. However just because you don't hit these milestones doesn't mean you can't eventually have an optimal response, as many on this forum can attest to people miss milestones all the time but still end up reaching all their treatment goals.

Everyone's path is different. It sounds like you have had some interruptions and dose changes along the way which certainly could contribute but I also believe at this point they probably should have tried other TKIs for you. Moving to transplant without first exhausting multiple TKI options is something I have never heard of...its not unheard of for patients to not get a good response with their first TKI but a change brings them easily into remission. It's weird to me that you have been on treatment for nearly a year without a change in TKI, maybe ask your Dr about that?

You can read about the treatment milestones here which is probably why your Dr mentioned he wanted you at 1% by this time. https://www.lls.org/leukemia/chronic-myeloid-leukemia/treatment/treatmen...

I really think you should look for a Dr that specializes in blood cancers. Look for "hematologist-oncologists" either in your area or if your Dr will be consulting with a specialist they don't need to be in your state even. I would look for the top specialists in the biggest cities. Los Angeles and SF on the west coast for example. Good luck!

https://www.nature.com/articles/s41375-020-0776-2/tables/4

Optimal response at 3 months is 10%, at 6 months 1%, and at 12 months 0.1%.

Your doctor, looking for around 1% now is not unrealistic. We don't need to hit all optimal milestones (I sure didn't) but if you are far from them it is often a prompt for intervention.

63% at diagnosis is not especially high, and statistically is lower than average.

David. 

At diagnosis I was at 155% PCR (> 100% is possible because of the way the test is calibrated to the abl gene). I was borderline blast crisis and had a bunch of other genetic abnormalities going on. It took quite a bit of time for me to get a handle on it.

The fact you do not have a TKI mutation is excellent news. You will get there, just at your own unique way. Be sure to get your vitamin D level in the proper zone (55 - 100 ng/ml).

Thanks for the encouraging words, Scuba.  I am taking 125 mcg (5000IU) of vitamin D3K2 every day and walking my dog in shorts and a t-shirt for sun exposure every morning.  How do I  check my levels, specifically?

In Colorado you can schedule a blood draw at any Quest diagnostics for a vitamin D test. Or you can visit your doctor and do the same.

Thanks.  I'm still going in for bi-monthly blood draws, so I'll see if my doc will add it.  How long did it take for you to reach 1%?

 

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New member of the club I didn't ask to join