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My 19 yr old sister dx with CML, need some suggestions

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#1 Nili_7783


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Posted 27 August 2012 - 02:32 PM

Hello All,

My sister (19 yrs young) just diagnosed with CML, It was really heartbreaking when i found out but then i found this discussion board which was really supportive for me. You guys are great!

Only regret that i have is she is in India right now and i am here but her paper work for immigration is in progress so i know she will be here in states soon (next year).

I have few questions on drugs and treatment and what do the reports results mean?

when she was diagnosed her WBCs were 178,000. her Oncologist had put her on Hydroxyurea and Allopurinol  for about 10 days until her BCR/ABL Quantitative real time PCR came 100% positive,

Her report result says Major Cytogenetic Response, 35%>Ph+>0%, i would like to know what does it mean in terms of CML?

I spoke with her oncologist and he said that this disease is curable with treatment available today and after 10 days also when my sister went again after 10 days on Hydroxyurea for a blood work, at that time her WBCs came out to 22,000 and he put her on to Tasigna 300mg twice a day, i asked him why Tasigna as a first line of treatment and he said it has a better effectiveness with fewer side effects. when she started Tasigna she was good for two days then she had complain of pain of muscle around her eyes and Muscle pain of lower feet, she went to ophthalmologist and he gave her some eye drops and in two days her pain around eyes went away. she is eating healthy, going to school and doing all the normal activity but her complain about muscle pain in lower feet is still there, she is occasionally taking acetaminophen (pain reliever)  but is there any better way to fight that muscle pain of lower feet? also she is taking multivitamin, calcium, vitamin D, Vitamin B complex, should she take any more supplements? can she certain food that can help with this muscle pain?

also another question i have is How long treatment will last for Tasigna? she has another appointment on 31st which will be her 3rd appointment with this oncologist and first time after Tasigna, also i don't know why doctor didn't perform BMB, however he said he is going to do that after couple of months.

Your Knowledge would be greatly appreciated

Thank you

#2 TeddyB


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Posted 27 August 2012 - 02:51 PM

Hello Nili.

Tasigna treatment is unfortunately for some time, until a cure is found, or if she has been "CML-Undetectable" for a few years, then she can maybe try stopping treatment which some people already have done in the STIM trials (http://www.ncbi.nlm....pubmed/20965785)

I think participants must be CML-Undetectable (PCRU) for at least 2 years to join those trials, and it will usually take some time (Months, years) for the drug to work well enough until one reaches PCRU.

Im guessing this was not the answer you were hoping for, but the good news is that the side effects usually lessen over time, and i hope they will do so in your sisters case as well.

As for the other questions, im sure someone on this forum can help your sister with those, i am on Gleevec, which is a similar drug, but with different side effects.

I hope your sister feels well soon.


#3 Nili_7783


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Posted 27 August 2012 - 03:37 PM

Thank you Teddy, You reply is much appreciated!

#4 CallMeLucky


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Posted 27 August 2012 - 04:49 PM

Your sister's doctor is not entirely correct in saying this disease is "curable" at least not based on what we know today.  A better description would be to say that this disease is highly treatable with generally good outcomes.  CML is a stem cell disease caused by a genetic mutation.  The mutation known as the Philadelphia Chromosome creates an oncogene known as BCR-ABL.  BCR-ABL causes the body to over produce white blood cells.  Drugs like Tasigna, known as Tyrosine Kinase Inhibitors (TKI) can block BCR-ABL, but they cannot kill the CML stem cell.  Some doctors are exploring the idea that if a patient stays on treatment long enough, will the CML stem cell extinguish.  This remains to be seen.

For today the disease your sister has is highly treatable with a few different drugs available.  Most patients do well with the drugs working to supress the disease and only having to deal with some side effects.  For some the side effects are tougher, but for many they do not severely impact quality of life.  The muscle aches your sister has are an example of a common side effect.  For some people the side effect will go away, for others they will have to deal with it.  If it gets to be too much, she can try another drug.  To try and improve the muscle issues she can try to do exercise and stretching.  Some people find magnesium supplements help.  She should discuss with her doctor to see if there are any other suggestions.

Sorry she got this disease, but as we say in the CML community, we are lucky to have gotten CML and not something worse (none of us like saying it, but its pretty much true).

Best of luck

Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%


#5 Happycat


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Posted 27 August 2012 - 08:06 PM

I will echo Lucky on the magnesium. I have to take both calcium supplements and magnesium oxide to keep the muscle spasms under control.

As far as muscle PAIN, that came early in treatment, after about 2 wks for me, then hung around for 4-6 wks, then diminished over time. Probably by 4 mo., it rarely bothered me. I had bone pain, joint pain, and muscle pain the first few months. Doctor put me on prednisone to bring down the inflammation in my bones. Worked wonderfully well for that. I also took Vicodin to manage the pain. Most people can get away with ibuprofen, but I couldn't take it or any other NSAID, so opiates was all I had for pain relief.

Well, that's not quite true. Here I the US, we have a product called Icy Hot. It's a gel stick that you smear on the painful area, like a deodorant stick. It has menthol and methyl salicylate (an aspirin prodrug).  When I was in pain, I would slather that on me and just let it soak in. That often helped a good bit. I just had to smell like menthol, which made me feel like my old arthritic grandma, because she always used Absorbine Jr., pretty much the same drug, just in liquid form. Ben-gay is another brand name for the same cream/gel stick.



#6 Nili_7783


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Posted 20 March 2014 - 03:23 PM

Hello All,

I LOVE this forum!! as i get so much positive information out of it. My sister now is 21 yr old and she just immigrated to USA. I am so happy to see her, she is doing good with 300mg Tasigna twice a day.

I do have couple of questions. your knowledge and answers will be greatly appreciate. I live in San Jose, CA and she will be staying with me for 2 weeks and flying back to india to complete her BS in Nursing. which she will complete in next 5-7 months. i am proud of her and happy to see her growth. she will come back to USA in December 2014-January 2015. right now Oncologist in India is treating her and seeing her every 3 months. however once she come back i would like to know what would be best for her medical insurance until she finds a job as a RN.

1. what would be best option for her as far as insurance which will direct her for best oncologist and best treatment in CA? Our dad works in NY and he will qualify for low income insurance in NY. my sister is 21 now so would be good to go under my dad's insurance (different states?) or buy a individual coverage for her in CA?

2 She is on Tasigna 30mg twice a day and i know that dosage intake does matter with this drug. it should be taken 12 hours apart and on empty stomach. for the morning dose she does take on empty stomach but for pm dose i would like to know how strict is to be on not to eat 2 hours before taking drug and not to eat 1 hour after taking the drug. sometime she drink tea in between or may be try some snacks, which worries me, is light snacks and tea ok or is it strictly empty stomach? also how important it is to be 12 hrs apart? would 10-11 hrs be ok?

3. what supplements be ok with Tasigna? would you recommend Vitamin C, Calcium, Vitamin D3 and multivitamin? what other natural remedy/supplements would you recommend?

I HIGHLY appreciate all your answers and knowledge.

Thank you thank you Thank you so much!!!

#7 tadly


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Posted 23 March 2014 - 09:21 PM

I have some thoughts on your insurance question. I've also done a little research on this. I live in the SF Bay Area and was treated for AML at Stanford.  I don't know what to say about who or where she'd get the best treatment for CML in this region.  U.C.S.F. and Stanford are the two most highly regarded blood cancer centers in the area.

As an immigrant, your sister is entitled to health insurance under Obamacare.

I've tended to pick or stick with individual doctors I've wanted first, then see if how they are covered by different insurance companies.  Not the other way around, then seeing whom I'm directed to.    Several of my doctors are out-of-network, so I've had to spend more.  But medical choice has been my priority over insurance restrictions.   In-network compare to out-of-network care has lower deductibles, lower per visit costs and often lower maximum out-of-pocket costs. 

If your sister will be living in California and treated there, and covered by your father's New York plans, she'll run into this out-of-network issue for maybe all the doctors in California.  Students who go out-of-state for college and who remain covered under their parents plans have this out-of-network problem.  But college students also often enroll in their college's health plan.  Health insurance is very much state by state with very few cross-state plans. One New York plan, that's become popular under Obamacare, is really restricted to NYC hospitals.

It's possible also pharmacies in California, might be considered out-of-network, for NY plans.  You should have this looked into.    You've got time, but your sister would really want to have figured out how drug insurance will work for her Tasigna.   Oral cancer drugs have a pretty big range of out-of-pocket costs for patients, depending on their state and the plans.   Even if drug costs are high, the maximum out-of-pocket costs, puts a helpful limit on total medical and drug expenses. 

If your sister applies for coverage in California for herself, her income level, if it remains low (or lack of) will determine her premium costs.  If she's considered a tax dependent of her father in NY, her father's plus her income will be combined to determine the Obamacare premium level, based on family income. 

Good luck.

#8 Nili_7783


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Posted 05 December 2014 - 04:49 PM

Hi Thank you all for being so helpful on this forum. My sister was dignosed with CML in august 2012 an since then she is on 300mg Tasigna twice a day, now she is 21 yr old. she and my mom are immigrating to USA for good from india this december:) i am so happy for her, she studied RN in india and is going for higher studies here in nursing field so finding a job in her field will take time and for her to have employer health insurance, Our dad works here in state of Georgia but she is going to stay with me in california, San Jose. she is not depedent on my dad's tax returns. Since my om and she will not be earning any income for a while, I m planning to apply for Medi-cal for her (as a individual insurance) and my mom (individual health insurance), Does anyone knows process of apply for Medi-cal in california? also if she get approved for medi-cal? also does anyone knows if Tasigna is covered by medi-cal? also i amplanning on having her choose oncologist from stanford, i am not sure if stanford accept medi-cal?


if anyone knows about these, could you please let me know? i appreciate a lot


Thank you!

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