Imatinib and tetanic cramps

Sd, what is your Imatinib dosage and your CML level?

Sd, I did a search and found a post of yours from Mon, 05/04/2021 - 2:04pm
In the past few months I have developed an increase in abdominal gas and discomfort. I also awake once or twice at night suddenly with hot flashes and my heart pounding. I have been taking imatinib 400 mg for 18months. My ABL/BCR shows nearly undetectable disease. Any thoughts?

Since you were almost at undetected at that time, you certainly should be able to reduce your Imatinib dosage if you haven't already done so. Please post your testing history.

Thanks in advance,
Buzz

I have been on 200 mg imatinib daily since June 2021. The cramps just started developing a few months ago.

Do you take magnesium supplements? (not oxide version)

Thanks for expanding my vocabulary. :)

I've been using magnesium citrate for a long time at 250 mg per day. I still get a cramp occasionally, but they're usually not too bad.
The worst cramping appears frequently when reclining after a day when I've been out hiking for several miles. The other correlation to cramping is when I'm vigorously exercising in the pool and one of my leg muscles becomes tetanized.

Thank you, Scuba. I do take 500 mg daily , plus the additional 100mg in a multi vitamin. So I think I am getting enough. I just wondered what others are doing.

Hi Sd

If you have been on 200mg imatinib since Jun 2021, and take 500mg of magnesium a day, and the cramps only started a few months ago, I wonder if the normaL assumption that your TKI is the cause might not be right, and that there may be a different root cause?

I should have written this down along the way a long time ago. I get asked this question a lot (in private messages) and reply without saving.
My approach to CML started out learning all I could at the biochemistry level and then using a bit of common sense that doctors could never recommend because of their liability risk when it concerns nutrition and the immune system. All doctors can do is follow clinical trial protocols. By the time a "discovery" becomes practice it can take years. This is why I researched at the University graduate level. For example, imatinib was first synthesized in the early 1990's by Dr. Lydon based on the idea that inhibiting bcr-abl would treat CML. It took 10 years before imatinib was approved. This delay is typical in biomedicine (especially in cancer drug development). Early testers had access to imatinib long before the general patient. And more recently discovery that full dose 100mg dasatinib is not necessary (and the associated toxicity) for effective CML treatment and that 50 mg is fast becoming the starting dose (or lower, 20mg). I was started on 20 mg due to research my research oncologist discovered long before publications and trials on the benefits of low dose for people with myelosupression/ pleural effusions.

Knowing this, I sought out non-clinical data that led me to stumble upon natural methods which would never see a clinical trial and that I could apply on my own. While not a cure, these natural approaches could very well augment the performance of TKI's which could lead to a better outcome.

Cancer occurs due to mutated cells dividing uncontrollably. Anything (natural) which inhibits the genetic pathways favoring this uncontrolled growth is worth considering as part of diet to stack the odds in your favor. In fact, we create mutated cells all of the time. They do not turn into disease because of our bodies natural immune defenses to fight cancer. There are many nutraceuticals which help:

For example:

1. Curcumin: Found in turmeric, curcumin has shown anti-inflammatory and anti-cancer properties. It may help regulate multiple pathways involved in cancer cell growth, including cell cycle progression, apoptosis, and angiogenesis.

2. Green tea: Rich in polyphenols, particularly epigallocatechin gallate (EGCG), green tea has been studied for its potential anti-cancer effects. It may inhibit cancer cell proliferation, promote apoptosis, and inhibit angiogenesis.

3. Resveratrol: Found in grapes, berries, and red wine, resveratrol has been investigated for its anti-cancer properties. It may influence various signaling pathways involved in cancer cell growth and survival.

4. Vitamin D: Emerging evidence suggests that vitamin D may play a role in cancer prevention and treatment. It may modulate cell proliferation, apoptosis, and angiogenesis pathways.

5. Medicinal mushrooms: Certain mushrooms, such as reishi, maitake, and turkey tail, contain bioactive compounds that have demonstrated potential anti-cancer effects. These compounds may boost immune function and exhibit direct cytotoxic effects on cancer cells.

6. Garlic: Garlic and its bioactive compounds, including allicin, have been studied for their potential anti-cancer properties. They may interfere with cancer cell proliferation and induce apoptosis.

7. Omega-3 fatty acids: Found in fatty fish, flaxseeds, and chia seeds, omega-3 fatty acids have been investigated for their potential in cancer prevention and treatment. They may affect inflammation, cell signaling, and tumor growth.

8. Selenium - cancer stem stell pathway interference and apoptosis.

Doses depend on individual circumstances, and not all need to be ingested every day. However, what I do daily is:

1. Curcumin - 2 or more grams per day C3 complex
2. vitamin C - 500 mg once or twice a day
3. magnesium - 200 mg twice a day (200 at night particularly)
4. selenium - 200 mcg OR a couple of Brazil nuts (one or the other not both at the same time)
5. Omega -3 - 2 grams per day (typical fish oil high in EPA)
6. Vitamin D3 - 5,000 - 10,000 IU's daily unless in the sun (i.e. at a beach) and season.
7. Vitamin K2 - 200 - 600 mcg per day (works with vitamin D)
8. green tea - I drink it throughout the day while working.
9. resveratrol - wine! (not enough resveratrol in wine, but every little bit helps)
10. Quercetin - 800 mg per day. (not quite every day, when I think about it)

Of everything listed above, the most important from all of my reading is vitamin D and Curcumin. Low vitamin D status does more to expose the body to the rampages of cancer and disease, in general, than just about anything else. Vitamin D should be checked twice a year and dose adjusted to make sure you are in the sweet spot for anti-cancer benefits.

I also use "fasting" as a way to reset the body's immune system and also to prime anti-cancer hormones. Research is suggesting that putting the body into a state of ketosis (ketogenic diet) is strongly anti-cancer. Most cancer cells (CML included) require glucose for rapid cell division. Putting the body into a state of ketosis robs these cells of the glucose they crave. But Fasting is tough to do. I would recommend proceeding carefully here, but a lower carb, higher good fats diet is likely helpful (olives, avacados ....the so-called mediterranean diet).

Taken together, the above puts CML (and other cancers) into a hellish position. The cancer cells are robbed of glucose to feed them, have their critical pathways for cell division down regulated (e.g. mTor, nfKb, etc. by Curcumin), ATP blocked in bcr-abl by a TKI, apoptosis (cell death) enhanced and the T-cells from the immune system activated to destroy them (via Vitamin D) and cancer stem cells which created the disease are also attacked (selenium).

I suggest you do an online search for each item listed above for references on their impact in cancer (CML). Additional information may point you in other directions as well. What is a key take-away, however, is that "doctors" are not going to recommend them because there is no defining "drug" to prescribe and lack of clinical trial data. But there is Ph.D. data generated from University research which is compelling. This is where I learned much.

To your health!

(and finally - I just simply feel better after having changed how/what I eat and take. I often say CML saved my life - because it forced me to think about what I was putting into my body which affects everything else)

THANK YOU, Scuba. I dont have words to express how much hope you add to our lives.

Thanks

Indeed!