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So tired of hearning all of the different cancer remedies

remedies for cancer

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#1 carrie

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Posted 11 January 2018 - 03:38 PM

11 years now with CML. If I had a dollar for every remedy suggested to me, I would be rich. It gets old trying to explain to people that all of the remedies listed below won't work for my leukemia.

 

I am tired of hearing people ask me... HAVE YOU TRIED......

 

Have you tried the baking soda diet: This theory claims that because cancer cells thrive in an acidic environment, alkaline substances like baking soda will prevent cancerous tumors from growing in your body. Unfortunately, baking soda won't prevent cancer, and neither will an alkaline diet.

 

I am so tired of hearing cancer feeds on sugar, you should stop eating sugar. Have you tried blueberries, beetroot, broccoli, garlic, green tea... the list goes on. Despite thousands of websites claiming otherwise, there's no such thing as a 'superfood'. It's a marketing term used to sell products and has no scientific basis.

 

 

Cancer is a fungus so you should do the sodium bicarbonate diet.

 

Have you tried cannabis oil? That will cure your cancer. You can smoke pot or take the oil.

 

Of course people with cancer want to beat their disease by any means possible. And it's completely understandable to be searching high and low for potential cures. But I am so wary of people telling me about a "miracle cure".

 

So when each person tries to tell me what they have read, or what some aunt tried, or whatever... I have to explain that I think I am on the right path or course of action for dealing with my cancer.  

 

This can be scary for the newly diagnosed person who starts to think, hey I should stop taking Gleevec and smoke pot, use baking soda, and eat alkaline foods...

 

I just needed to vent about this. 

Carrie


Diagnosed   2007

On Gleevec for 10 years

Results from 2007-2012 not shown below

International Scale from 2012 until now

Never went to 0

0.166

0.038

1.155

0.789

0.104

0.099

0.701

1.986

1.063

1.799

2.817

1.832

3.449

1.050

1.438

3.376

3.370

3.370

2.580

8.990

4.250

6.176

14.109   Changing to Tasigna 7/7/17

 

7/28/17  800 mgs Tasigna

10/5/17  600 mgs Tasigna (Lots of bad side effects)

10/16/2017    PCR down to 0.141  

1/15/18          PCR down to  0.066   Dose reduction again. Now 400 mgs daily.


#2 Buzzm1

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Posted 11 January 2018 - 04:10 PM

Carrie, wishing you good luck on your upcoming PCR.


For the benefit of yourself and others please add your CML history into your Signature

 

02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive

2012 PCRU, PCRU, PCRU, PCRU

2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17

 

At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  

 

In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  

 

longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.

 

Cumulative Gleevec dosage estimated at 830 grams

 

Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  

 

Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt


#3 kat73

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Posted 11 January 2018 - 06:20 PM

Carrie - Amen.


Dx July 2009 on routine physical.  WBC 94.  Started Gleevec 400 mg Sept 2009.  MMR at 2yrs.  Side effects (malaise, depression/anxiety, fatigue, nausea, periorbital edema) never improved.  Kidney issues developed because of Gleevec.  Switched to Sprycel 70 mg in Aug 2011.  Above side effects disappeared or improved.  Have been MR3.5 - 4.5 ever since.  Two untreated pleural effusions followed by one treated by stopping Sprycel Jan 2017.  After 9 weeks, PCR showed loss of MMR; re-started Sprycel at 50 mg and in 3 months was back to <0.01% IS.  Pleural effusion returned within a couple of months, same as before (moderate, left side only).  Stopped Sprycel 50 mg for 12 weeks; pleural effusion resolved.  At about a monthoff the drug, PCR was 0.03; at 11 weeks it was 2.06 - lost CCyR? Have returned to 50 mg Sprycel for 3 weeks, intending to reduce to 20 mg going forward.


#4 hannibellemo

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Posted 11 January 2018 - 07:03 PM

carrie, I liken it to pregnancy! You get all the old wives tales and the horror stories. I did get one excellent piece of advice though. When I was convinced I was going to die of terminal constipation during my first pregnancy a woman told me about psyllium seeds. I got them at our co-op and was immediately a convert. Of course, now I just use Metamucil, but I swear, those seeds in warm apple juice saved my life.  ;)

 

Think of it as a very irritating indication that they care for you. My philosophy is take what I can use and throw out the rest! 


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#5 chriskuo

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Posted 12 January 2018 - 03:05 AM

There are reasons why it might be advisable for new patients to limit the circle of people they discuss their CML with to people they can trust to be reasonable.



#6 beno

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Posted 15 January 2018 - 11:22 AM

The one that always got me was when people would pull you aside and whisper "How are you doing?"  I just want to yell, getting cancer didn't give me super hearing so speak up.


DX 3/30/2016 WBC 484.2 FISH 95.3

took Hydrea 3/30-4/11

taking Sprycel 100 mg since 4/5

10 day break from Sprycel for platelet count of 12 4/26-5/8

7/07/2016 1.47% (IS)

9/30/16 BMB PCR .1259 switched to new onc

12/30/16 PCR .1569

4/7/17 PCR .0904 MMR

7/14/17 PCR .0520

12/1/17 PCR .0148





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