47 replies to this topic

[tazdad08]

great response to the tki froggiegirl. 25mg is the lowest dose of imitrex. I am on 100mg now . If it is a real migraine you will get nauseated by a lot of smells and flashing lights will drive you insane . and I have found that if I take one when I have a migraine the meds will cause the back of my neck to burn like sh@*. If it is just a "regular" headache, I dont get that burning feeling. I guess that I look at my cml wrong, or different,  at times. I cant ever remember what all the abbreviations stand for, and I don't even bother researching them anymore. I was told that I had a complete molecular response and that that was the docs goal. I basically look at it like this---- I have to take the same meds and go through the same tests no matter what my numbers say. I lean more towards talking to people on here to see how it is affecting their everyday life. I have also learned to focus more on what is really important to ME. and that is God and my family.

[tazdad08]

I am in East Tennessee, My doc is labeled as one of the best in the area for CML. I am not sure where you live, but I would hate to feel like a burden to my dr. that would piss me off. My dr is not the most sociable person that I see, but he is very knowledgeable. I love seeing a certain practitioner there..., and I have started requested seeing her. They never have a problem with that. Maybe you could check into changing or seeing a practitioner if that's an option.

[Frogiegirl]

I am in Utah. I go to huntsman cancer institute. I really like my doctor but it's his head nurse I have issues with.  I finally spoke up about how I was feeling and she called me right away after hearing about my complaint and said "just so you know, I was not ignoring you". No apology or anything. Just cold. I really think a lot has to do with my age, people even professionals think they can speak to me any way they like. I say nay nay. I have a big mouth, I do not mind going over peoples heads or even going to the better business bureau. I just didn't think a situation as delicate as this would ever need that kind of attention. enough rant LOL!  l read some of trey's earlier blogs and saw that being CCR after only three months is pretty fabulous! Also I do think they are migraines that I'm getting because I have to close the blinds and pull covers over my head, and I get nauseous over smells even my BF's deodorant LOL!

[tazdad08]

yep.... definately sounds like migraines. Some deodorants, and most perfumes are instant hell for me. Good luck. with the migraines. I have been thru studies and numerous meds to live with them.

[thomaskk]

Hi

When did you get Dx. I am on Nov 19th. I am on 400 mg Gleevec. Just got my 3 months PCR . It is .876 % on IS .FISH came back with 0.

So I am riding along with you

Thomas

[winespritzer]

Hi,

Am on fish oil; vit D (2,000 IU/day; B12; multi vit; AREDS for macular degen; calcium for osteo.

Include turmeric 1/day, thistle tea; loads of veg/fruits of all colors; eating less meat and fish now.

At 1 month- test results were: BCR-ABL, CML/ALL, PCR,Quant

.127% - b2a2; 20.264% - b3a2; <0.001%- e1a2 .

Definitely still trying to learn about the terminology, the  tests and what remission means.

Thanks,

Winespritzer

[scuba]

1,000mg Vitamin C (long ago Trey recommendation - haven't had a cold since).

400mg Magnesium Citrate

(prevent heart/cramping irregularities due to Sprycel) - haven't had a cramp since.

10,000 IU Vitamin D3 (winter) - 5,000 IU Vitamin D3 (summer)

100mcg Vitamin K2 (Mk-7/Menanquinone) + 45 grams Japanese Natto per day

These two always taken together to prevent calcified arteries and strengthen bones.

Discovered my vitamin D level was very very low - dose prescribed by doctor during routine physical.

Level is now high normal.

8 grams Curcumin C3 (from Sabinsa 4 in the morning/ 4 in the evening)

Helps augment Sprycel effectiveness and anti-arthritis.

4 grams Ethyl eicosapentaenoic acid (Omega-3 prescription) 2 grams morning/ 2 grams evening with food)

anti-inflammatory, lower triglycerides minimize diabetes type 2 chances.

4 grams Cinammon w/Chromium (2 grams morning/ 2 grams evening with food)

metabolize sugar effeciently, anti-diabetes type2, anti-inflammatory

B6/B12/Folic acid combo to help red blood as much as possible

lower homocysteine levels.

Occasionally Zinc / Selenium

In anticipation, wishful thinking, of sex.

[Trey]

Winespritzer,

You have 2 types of BCR-ABL, as do some others of us.  You have b2a2 and b3a2, so the PCR values must be added together to get your total PCR result, which is .127 + 20.264 = 20.391%

[winespritzer]

Hi,

Thanks for the milk thistle warning; am on Sprycel but what you wrote makes sense and I will no longer drink 2 strong cups/day - maybe less frequently; but looking for a way to protect the liver.

Winespritzer

[winespritzer]

Dear Trey,

Thank you for your response. I am so in the dark with all these terms. I just understood that the goals were to get the blood counts back to a close normal; eliminate the blast cells in the blood stream and get the cancer cells down to <1%. I thought my onc had said over the phone that it was down to 10%.  I see that I am totally confused.

Are the b2a2+b3a2 transcripts with a total value of 20.391%, the Philadelphia chromosome ?

Is the e1a2 transcript the immature cells?

Thanks much for your translating. Thank God, I didn't have to have this knowledge to get better!

Winespritzer

[Trey]

The e1a2 is another type of BCR-ABL, but you do not have it.  The terminology surrounding this issue is discussed in this post:

http://community.lls.org/docs/DOC-1272

If you are really bored and want to learn more useless info:

http://community.lls...atus[published]

[thomaskk]

Trey,

What is your opinion about eradication of cml stem cells. Are you aware of any trails which may be sucess ?

What are the chances of CML stem cells having a natural death over a period of time while the patient on TKI ?

Thomas

[Trey]

Years ago I put forward a theory about leukemic stem cells dying off if we kept them under control with TKI drugs over many years.  This is because, unlike normal stem cells, leukemic stem cells divide far more often and could possibly burn themselves out.  This was never true before TKI drugs since the leukemia could not be kept in check long enough.  In recent years this theory has been discussed by researchers and has become known as leukemic stem cell exhaustion.  It is also why I do not stop taking TKI drugs after many years PCRU.  There is no way to know for certain if this theory is valid. 

Look at my inputs on page two of the following:

http://community.lls...tart=0&tstart=0

[GerryL]

Just a quick note of my experience with Magnesium - I was taking the recommended dose of the bottle for Magnesium, but started to get some neck issues around a month or two before stopping the Gleevec. My doc said he didn't think it was Gleevec related. The issue continued on after stopping, so I started to agree with the doc. But just to be sure I increased my Magnesium to the higher level dosage recommended on the bottle and the issues with my neck have abated somewhat. My neck had been making cracking noises when I moved my head and I also felt that the tendons were sliding across the bone and I would get a "twanging" sensation.

[Pin]

Just for the record - my phosphate levels have continued to drop over the last 9 months or so (last test was 0.69, 0.67, and then this one was 0.40), so I'm now taking a phosphate supplement...I've been feeling really off lately, heart palpitations, fatigue and just general crappy feeling, so I am hopeful that this might help somewhat.

[TeddyB]

Sorry to hear, hope you feel better soon Pin.

Teddy

[LivingWellWithCML]

Hi all,

Just got my three-year PCR result back and it went up a bit (although still technically within the margin of error for the test, so no reason to panic I guess).  However, I just restarted this supplement today and will continue with it at least until my next blood draw.  I dropped 1/2 log in 3 months while taking this, then my result went back up about 1/2 log after *not* taking it.  Related maybe??

- Genistein 125mg w/ my breakfast Gleevec 400mg dose

I did this for 3 months because of the "potential" benefit of a natural TKI to complement Gleevec.  PCR dropped from 3.5 to 4.0 log reduction over this 3 month period (Oct 2013 - Jan 2014).

[Pin]

Hey all, just wondering if anyone else has had trouble with low phosphate? I mangaged to get mine up just into the normal level (just above 0.8) with a few weeks of oral supplementation of phosphate. But at last test they were dropping a bit again.

 

I've got a theory that the dose of daily calcium I take may be interfering with my phosphate absorption, as I only started getting low levels more recently, after probably at least a year and a half of taking calcium, maybe longer. The calcium helps a lot with muscle fatigue, more than just magnesium alone. But I can't help feeling like I'm making a trade-off here.

 

Anyone out there taking calcium long-term finding a similar effect?

 

Trey - do you have any knowledge about this type of thing?

 

It may just be a balancing act - I'm having trouble keeping my cola beverage intake high (not keen on cola!!) but I have been making an effor to eat a lot of parmesan cheese...

[gerry]

Pin,

How are your vitamin D levels?

Another thing to include in your diet are seeds, pumpkin seeds appear to have the highest amount of phosphate.

[Vietnam67]

Just found this site.  I am a Vietnam Vet recently found out I am a victim of Agent Orange and have  NHL or  CLL not sure of the correct term.  Not sure what this all means but I am learning.  I feel OK, not sleeping real well, tired and just not myself.  I am doing a lot of reading on the subject and I know everything will be what it is and for me just keep on with my life and enjoy every moment.

Just felt compelled to write something, I think it is good to just hear myself day it.

Thanks for listening, and should I move to another forum?