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Diagnosed May 2018 - Sprycel 100mg (1st month) Sprycel 50mg (after MD Anderson visit)

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Hello,

Thank you for adding me. I was diagnosed in May 2018 with WBC over 210K and an englarged spleen. Since 2014, I've had multiple CT scans and a PET scan as a result of being followed for a Clear Cell Borderline Ovarian Tumor. It was microscopic, was found after my hysterectomy, and required no treatment. This type of borderline ovarian tumor is very rare, I think I was the 31st document case in the States. In early 2016, I had a brain CT scan after a roll-over accident on the highway. In late 2016, I was diagnosed with Papillary Thyroid Cancer and was treated with Radioactive Iodine. Now, I've been diagnosed with CML. I've got to admit, I'm more scared now than ever before. I started on 100 mg of Sprycel, but was reduced to 50 mg after my visit with Dr. Cortes at MD Anderson. I did not have a PCR test at diagnosis. I was on 100 mg of Sprycel for 3 weeks when MD Anderson ran the PCR test. I believe I was at 93% at that time, although I'm not certain I'm reading the test results correctly. After reading many postings, on FB and on this forum, I feel like 93% is super high after 3 weeks of treatment. I've read other posts of PCR tests at diagnosis under 50%. Before my visit with Dr. Cortes, I read of the success MD Anderson has had with the 50mg trial. During my MDA visit, I asked about a dosage decrease. I was told they start all newly diagnosed patients now at 50mg. That said, I've been told by others (via FB) some doctors believe it should be "hit hard" the first 3 months with 100mg, not 50mg. I trust Dr. Cortes expertise, but have begun to be apprehensive about the 50mg dose and the 93% PCR after 3 weeks on 100mg. I'm finishing my second month of treatment which has been at 50mg. My next PCR is in September. I am mourning the loss of my health and worrying about the future. Any words of wisdom? Will this worry ever go away? 

Thank you,

Susan

Hi I was just diagnosed as well. Still waiting for the insurance company to approve the Sprycel. Doctor said starting on 100 mg. I am anxious and scared as well. I actually went thru breast cancer treatment 13 years ago. I’m not as nervous as I was then. I think exercise and relaxation exercises using deep breathing help. I try to walk twice a day. I am focusing on the positive statistics and drawing strength from this site and the support I have found. I am still learning and processing. Just got the bone marrow test yesterday and it was not as bad as I thought it would be.. just remember we are here for you and reach out anytime. You can do this! Other people have posted the importance of fluid intake and of course healthy nutrition. Take good care and remember we are here

Susan welcome to this community. It’s been a great support for me ( my husband was diagnosed last Sep). I am not an expert at all but I have heard great things about Dr Cortes - would love it if my husband was under his care - so I really think you should trust his treatment plan. 

I also believe that you can have a higher PCR than 100% so I wonder if 93 is actually  a reduction for you. I have seen people post up to 130% at dx.

It’s very normal to feel extremely anxious and panicky esp at first but it does get better . My husband has always left the online CML related business to me - he had one look at a CML Facebook site and thought this is not for me . I totally rely on this site and also check in with the LLS community site now and then but I would try and stick to a trusted few sites as it’s easy to feel overwhelmed and worried by all the advice and life stories  ( well intentioned but not always well informed) out there . Everyone is different , has different side effects or none , reaches their milestones at different times.  We have our tortoises and our hares but hopefully all get there in 5e end . My husband was initially a hare but now seems to be more of a tortoise ....

I know you need to wait till Sept till you can see if there has been a PCR reduction but are you  having  regular comprehensive blood tests as well ? Just seeing your white blood count fall and other results start to edge back to normal can be very reassuring. And I assume your spleen is back to normal as well?

best Louise 

 

Susan - When I was diagnosed 9 years ago, by a community hemo-onc at a major community hospital, I had no PCR done, no bone marrow done, no FISH, no Sokal score, the 3 month PCR went missing, and PCRs were not yet reported in International Standard (IS).  My husband and I were given a 40-minute sitdown for an overview of CML by the cheerful doc.  I started my Gleevec and my life went to immediate hell (NOT necessarily everyone's experience, PLEASE note!).  I KNEW ABSOLUTELY NOTHING ABOUT ANYTHING.  For the longest time.  No support group, no website, no LLS or hospital outreach, no handout or brochure was offered to me.  Just an appointment to come back in 3 months.  An eternity of black hole worrying accompanied by physical misery.  It was so unnecessary, and I would hope things are different today.  And yet, I wonder if they're so much better.

If I could change one thing about the initial protocol, it would be a weekly visit with the doctor for the first 3 months.  The more time goes by and the more you learn, the more questions you think of.  You get bloodwork done and you have no idea what it means; especially, you see "high" and "low" flagged and get all panicky about what it means.  You feel horrible and you need to tell someone and ask is it normal and when will it get better.  You have time to lie awake at night and think about why this happened to you - was it the radiation from the scans?  stress? pesticides in the garden?  and, worst of all - am I just a cancer magnet, since I had cancer before?

I agree that your 93% after 3 weeks could very well be OK, since with 200K+ WBC you may have had >100% to start with.  So, hold on to that.

Also, you are very lucky to be under the care of one of the premier CML specialists in the entire world.  Unlike some of us who have had to change onc's one or more times, you can stay with him and trust him to know what he's doing.  He's also really nice.

Lastly, you're here and people here not only know a lot, but you will find people who have had similar experiences to yours.  The LLS site is good, too.  Treyscmlblogspot.com is a comprehensive place to learn anything and everything about CML.  Please post back as you wait until September and know that you are going to be OK.  Your body betrayed you, but with a little TKI help, it still has some tricks up its sleeve to use and get you back where you want to be.  Patience, time, distraction, optimism, knowledge, friends, exercise. Maybe therapy - helped me.  Will the worry ever leave?  Nope.  But it gets better.

 

I am sorry to read about your breast cancer diagnosis and now CML. I'm glad you found the bone marrow test not too bad. You are so right about the positive statistics and the support of this site. My emotions are like a rollercoaster, but I'm working to be more positive and trying to feel peace. Thank you.

Louise - Thank you for your response. I am very happy to have the opportunity to be treated by Dr. Cortes. I have got to stop worrying and start trusting! I'm trying to be more at peace with the diagnosis. Yes, my local oncologist runs my comprehensive blood work and told me last week it is normal. I think your husband is wise to leave the online business to you. It is overwhelming. He is lucky to have you. Susan

kat73 - Thank you so much for sharing your story. I can't even imagine how frightening it was for you. "An eternity of black hole worrying" perfectly describes how I feel even with all the support now available to the newly diagnosed. You are so right about my thought process, I ask myself what I should have done differently - less CT Scans, no radioactive iodine, etc... I agree, I am lucky to be under the care of Dr. Cortes. He spent a lot of time with me and was very kind. It's my character flaw of being a "what if" worrier. I'm working to be better. Thank you for your help. Susan

Hi Susan,

A good reference to know about is the NCCN guidelines for CML:

https://www.nccn.org/patients/guidelines/cml/

This is what doctors who are not experts in the field rely on when treating patients who come to them and they discover it's CML. Dr. Cortes helped write these guidelines.

I was diagnosed in 2010 with 155% positive PCR. All that means is that compared to the standard (100%), I was 55% more than that! My CML was bad - I was also borderline accelerated and had chromosomal abnormalities. It was clear my initial doctor was over his head. Not by his assessment - but my assessment. I sought out an expert - Dr. Cortes at M.D. Anderson. And I sought out everything else. What a ride this has been.

Research Dr. Cortes was doing showed that full dose 100mg Sprycel should not be the starting dose. MORE DRUG IS NOT BETTER. I wish I could convey to patients that "hitting CML hard" does not happen simply by taking more drug. This is especially true of Sprycel. What scientists studying CML and TKI's have learned is that in the case of Sprycel (and other drugs), some patients develop myelosuppression and pleural effusions at 100 mg. Sprycel suppresses your normal immune system as well as attack CML. Research is showing that 50 mg is a sweet spot for maximum hit on CML with minimum hit on your immune system so that combined (immune system + Sprycel) they are more effective together AND, as your immune system improves even less dose of Sprycel is MORE effective. Sounds counter-intuitive, but not when you consider that you are defending against CML not just with Sprycel but with your immune working also. The more Sprycel you take the worse your immune system performs ultimately becoming toxic.

I was started on 70 mg and that lasted a week before I was dropped to 20 mg Sprycel. I am PCRU today. Dr. Cortes prescribed 20 mg as being correct for me given the severe myelosuppression I experienced (dangerous levels) when at 70. Notice he never even started me at 100mg - he had a hunch 100 is way too much. He told me I am very sensitive to Sprycel - lower drug dose is better for me. For some people, they do need full 100 mg of Sprycel - even 140 mg .... but those patients are outliers in the overall population taking Sprycel. The new protocol is 50 mg starting. If it doesn't work and a patient is not in blast phase, they can increase the dose slowly to find what gives maximum benefit. For some patients, they even lower the dose down from 50 mg. My next stop is no drug. Can't wait.

Hope this is useful information for you.

 

Scuba,

I'm very excited to hear your next stop is no drug! I really appreciate the information you provided. Thank you for telling your story, it does really help ease my anxiety. The waiting is the hardest part - I guess Tom Petty knew what he was talking about :)

Susan

 

Hi Susan - Thanks!

On Tom Petty and waiting:

“It was about waiting for your dreams and not knowing if they will come true,” Petty said. “I always felt it was an optimistic song.”

Like waiting for the CML cure. I do believe with all of my heart that we can cure ourselves. We're blessed to have TKI's that buy us the time to get our "immune system" restored.