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Tasigna and Supplements

Would all the Tasigna takers please share what supplements they are taking and why? I've had no education from my specialist's office regarding this.

600 mg/day magnesium taurate - to help with benign irregular heartbeat caused by Tasigna and to maintain magnesium levels

4,000 iu/day vitamin d3 - to keep D levels above 50 and due to less sun exposure due to Tasigna warnings to limit sun exposure

1,000 mg/day of Niacinamide - suggested by dermatologist to reduce/prevent future skin cancers (I had 9 confirmed squamous cell skin cancers within 5 months of starting Tasigna)

1,000 mcg/day B-12 to reduce future mouth sores caused by Tasigna

1.1 grams per day Curcumin - because many others with CML seem to think it helps

 

I don't know if any of these supplements are really helping me or not. All of my initial side effects have been greatly reduced but I am not sure if this is because I am now on 25% of original Tasigna dose, or because my body is adjusting to Tasigna or because of the supplements or maybe some combination of all three. All I know is that I am feeling much better now that I did during the first year on Tasigna and my PCR has been at <.003% for 15+ months now. If it ain't broke don't fix it.

Lol. Thank you! I do have irregular heart beat, dry mouth, painful muscle cramps and skin issues. This is a big help... Hoping for a reduction by 150mg this week and that it'll aid in reducing some of these side effects as well.

Specifically for dry mouth: 1 or more of the following depending upon severity

Baking soda, salt and water solution - gargle 2 - 3 times per day

Sugarless gum with Xylitol

Lemon drops

Small sips of water throughout the day and evening

Biotène Gentle Formula Gentle Mint Toothpaste

Stay away from soda pop, coffee, tea if you can. I drink only water now except for mango and juice with breakfast.

 

Magnesium should help muscle cramps; skin issues are very typical with Tasigna and other TKI's - could be anything from folliculitis to skin cancer like I had - see a dermatologist if concerned.  I tried beta blockers for irregular heartbeat but not only didn't it help, it gave me worse insomnia than I already had.  When mine gets bad, I take xanax and it seems to help.  Also, I have increased my cardiovascular workouts to 5 times a day for 30 minutes. My incidents are much fewer now than they were int he first year. If you don't already know, you should at least have an EKG to determine if yours is benign or not and perhaps a more extensive cardio workup. 

Good luck with the dose reduction.  As I said, my first 150 helped some, but real benefits in reduced side effects came after 2nd and 3rd reductions.

 

Jax,

Are you exercising 5 times a day for a total of 30 minutes/day or are you exercising for a total of 150 minutes per day spread out over 5 sessions?

I ordered MagEnhance, Vit D3, and the Biotene toothpaste. Thanks for these suggestions. You have no idea how much I appreciate it. Should I expect any side effects from the Magnesium?

If you take magnesium taurate - no side effects. if you take magnesium oxide (poor absorption) - it stays in the intestines and does what milk of magnesia does ("magnesia = magnesium").

 

Exercise for me is 30 minutes per day spread over 5 days a week.  A long time ago, I decided the only way I could establish a regular exercise routine was to give myself a couple of days off per week, a bonus of sorts to look forward to because who really likes to work out.

As Scuba said, magnesium taurate has the lowest likelihood of side effects - I have none that I am aware of.

Thanks, Jax, for the clarification...saw my doc today and discussed reducing my dose by 1 capsule (150mg) per day. He and his PA seemed pretty hesitant as the drug label does not guide one way or the other unless it's a med toxicity or TFR attempt (which ironically they seemed open to trying at my 3 year anniversary of MMR--Dec 2019). I told them both I am not interested in a TFR attempt and that my personal goal is to be at half dose in a year from now. I'm always very quiet but positive at my appointments. I think I, actually I know I blindsided them this afternoon. I truly hope the remission results continue in my favor so that I can (hopefully) convince them a year from now to allow me to reduce to half daily dose...I do wish they were more on board with my decision...I will offer up emailing him the clinical trials on Gleevac, as well as Tasigna, when he calls with my results next week.

My oncologist only agreed to my dose reductions because of side effects (medicine toxicity); I had numerous ones that made my QOL pretty low.  He resisted at first, but finally said ok partly because I was such a fast responder but mostly due to the side effects.  He also will not sponsor me in a TFR attempt until my 3 year treatment anniversary because that is the protocol. Unless you have some bad side effects, you might have to find another doc who is willing to let you try dose reduction before 3 years. The DESTINY study required 3 years of treatment and dose was first cut in half for a year then eliminated. 

So your angle is to argue side effects are affecting your QOL, or if you have been MMR or better for more than a year, or doc shop.  Keep pushing, show them the data - here's one specifically about Tasigna:

https://www.cancertherapyadvisor.com/chronic-myeloid-leukemia/chronic-le...

Good luck

That is exactly what I did--reiterated my diminished QOL and having to cut back on working...this is one you'll appreciate...my PA just called. My Vit D result is 13.9! So low that he suggested I follow up with my primary care physician immediately for management. On the flip side my Magnesium level is 2.3 so I guess there's a bright side...

That's a very low Vit D level - you may need more than 4,000 iu's per day. I know of some on this site that do as much as 10,000 per day, but too much is also not good. By the way, make sure you also mention to your doc that in all the reduction/stop studies that have been done to date, i think there has only been 1 person who has not regained MMR after resuming full dose, so the risk is very very small. 

Feel free to share my story, particularly that my oncologist at Mayo Clinic agreed to my dose reductions, so I didn't just do it on my own.  He made me test more often (PCR every 6 weeks after each dose reduction), but it was well worth it.

Thanks for the advice, Jax. I guess the 400IU gel tabs I purchased won't do the trick. Yikes. I made an appt to see my PCP in 2 weeks to redraw and see if it's increased any. I will be going back to the drug store to purchase a higher dose of Vit D...I can't help but wonder if my low level is contributing to my major lack of energy lately. Only one way to find out...

Maybe Scuba or someone with more vitamin D knowledge will chime in, but it seems that I remember vitamin D response is slow, kind of like CML.  I'm not sure but maybe a test in three months would be more informative?  If you time it right, maybe you can avoid getting any extra needle sticks by having it coincide with an already scheduled blood draw.

You're probably going to need a lot more than 400 IU per day.  You don't want to take too many gel tabs.  I read of a case where a guy took too many gel tabs and a bezoar formed.  It doesn't sound like a pleasant experience.no

I took 10,000 IU (two 5,000 IU tabs per day) for over a year and the highest level was 69.3 ng/mL.  When first tested, I was at 23 ng/mL.

Wow, thank you. I took 1 capsule tonight and 2 hours later started sweating for 15 minutes. Like what I hear women describe as hot flashes. That was crazy. My heart rate went up to 102 (couldve been anxiety related). I fanned myself until it all of a sudden stopped. If only 400IUs did that, I'm in for a real surprise at 4000.

Hi, best not to take Vitamin D at night ,it raises your Melatonin which is a sleep hormone.You will probably have a restless night .Best to take it in the morning .Denise.

Hi Alaina,

Your vitamin D level is dangerously low. Vitamin D is often thought of as the bone vitamin and that is true - but what vitamin D really does is activate our bone marrow - bone cells and blood cells have the same origin - and vitamin D is essential to activate them properly. Vitamin D is as important to our immune system working properly as it is to bone health overall. A low vitamin D (as is yours) is like telling your immune system to stay home.

Here is a recent thread on "vitamin D":

https://www.cmlsupport.org.uk/thread/12452/vitamin-d

My vitamin D at initial test in 2013 was 17 ng/ml - dangerously low as well. This is what I did to not only increase it, but to keep it in a zone which is ideal for anti-CML activity.

You need to start taking 10,000 IU's of vitamin D3 (which converts to vitamin D in the body active form) every day with food that has fat in it (vitamin D is fat soluble) for three weeks. This will raise your vitamin D level initially. After this period during winter (which is now), alternate days of 5,000 IU's and 10,000 IU's to slowly increase your vitamin D level into the 60-80 ng/ml range. I keep mine around 70 by following this program.

After six months have your vitamin D level checked. If it is not in the range above, add a few more days of 10,000 IU's and test again in two months.

I tend to test twice a year.

In March - (northern hemisphere), I switch to just 5,000 IU's every day and get more sun exposure. I find this keeps me in the 70 ng/ml range.

The half life of vitamin D in our bodies because it is fat soluble is about two months. This means it will take two months for your vitamin D level to fall by half if you take no vitamin D (and avoid the sun). This is why you need to take higher dose vitamin D to raise your level. It is a slow but necessary process.

Do NOT overdose on vitamin D - more is not better. Vitamin becomes toxic when blood levels climb above 100 ng/ml - but studies show you would have to be eating rat poison for that to happen. 10,000 IU's per day is a safe upper limit. In your case, as was mine, you need the upper limit for awhile.

One final note: I take vitamin D with vitamin K2 (aka menanquinone ; MK-7) 200 mcg - also fat soluble. The two vitamins work together. Vitamin K2 uses vitamin D to transport calcium out of soft tissue into bone. This combo can help prevent osteoporosis in women and artery calcification in men. Also - by taking vitamin K2, it is practically impossible to overdose on vitamin D.

I use to get colds and flu just about every year. Once I raised my vitamin D level in 2013 - I haven't had a cold or flu since. And I don't get flu shots. Everyone around me gets sick in the winter - I no longer do. I wonder why .... My PCR also plummeted once I started my vitamin D program and am now PCRU on 20 mg Sprycel - 1/5th the normal dose. I feel I am CML free, but won't know until I stop Sprycel completely. I feel my immune system has been restored so it can attack any new CML cells in the future like non-CML people do all of the time. A severe low vitamin D level is an invitation to cancer and disease. It's why the sun is so important in our lives.

https://medicalxpress.com/news/2018-07-higher-vitamin-d-breast-cancer.html

https://www.healthline.com/nutrition/vitamin-d-and-vitamin-k

Denise, Thank you for the advice! I did not know this!

Scuba,
You need to be a registered consulant or paid educator. My mind is blown with the amount of knowledge you (and others) have and give on these threads. THANK YOU! I'll admit I am freaking out a little especially after having a weird sweat attack 3 hours after taking a baby dose, but I will try again today and see if the same thing happens. My body may have been quite shocked and didn't know what to do being it's been so low for no telling how long. Hah! I don't even want to know if this is what caused my CML. It is what it is and I can only look forward. Thanks again!

Hi Cmljax,

Can you share with me the brand of Curcumin supplement you take? And is Curcumin the same thing as Tumeric spice used in Mediterranean food?