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Guess I will never know :(


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#1 Dina

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Posted 17 December 2011 - 06:18 PM

http://gaia-health.c...with-leukeumia/

I gotta stop reading and posting stuff like this, but I still haven't set my mind at rest and never probably will

what has caused me to get CML. About 18 months ago when I was running I fell and injured my right knee,

so I went to an urgent care where I have received Tetanus vaccine( they say we need one every 10 years) as they offered it and highly recommended,

I remember at that time I wasn't really sure if I that's what I need since my injury wasn't that bad.

I always hated vaccination and never really trusted them if they are completely safe.

Anybody vaccinated before their diagnosis???

Thanks Dina



#2 Marnie

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Posted 17 December 2011 - 07:14 PM

HI, Dina. . .

There are many sources of information out there.  It's important to check the source to determine if it is scientific and legitimate.



#3 Sneezy12

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Posted 17 December 2011 - 10:04 PM

There is no scientific evidence that any vaccination has anything to do with CML.Frank



#4 Trey

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Posted 17 December 2011 - 10:11 PM

Only about 1% of people with CML think they probably know why they got it.  For the other 99% it is a complete waste of time. 



#5 scuba

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Posted 18 December 2011 - 09:19 AM

Dina,

Actually - the article you cite is very important.  But not for CML.  It applies to B-cell Leukemia / Lymphoma.  It is important to note that the blood system is really two main systems (simply stated).  The myeloid and the lymphoid.  CML is largely a myeloid disease affecting the cell line that is involved with fighting bacteria - which is why our disease is called Chronic MYELOID Leukemia.  The lymphoid line produces largely virus fighting cells such as T-cells and NK (natural killer) cells among others.  Vaccinations are largely for virus protection. Vaccinations stimulate the Lymphoid system into producing T-cells that can fight virus'.  It is here that the article describes the issues involved with vaccination.

It has nothing to do with CML; But everything to do with Lymphoma which is a B (or T) lymphocyte leukemic disease: " Researchers at the University of Pennsylvania's Perelman School of Medicine have found how B lymphocytes ... ".

I just lost a wonderful dog to Lymphoma a few weeks ago.  Horrible disease to watch a loved pet go through.  The Oncology vet told me that vaccinations are coming under scrutiny. (at least in weaker more susceptible animals).  They are seeing more and more lymphoma in dogs corresponding to enhanced vaccination protocols.  It is incredible how the Lymphoma rates in dogs have exploded since the 1960's and how it is becoming a real problem.  Before that it was unheard of in dogs.  During my dogs treatment - we were told she was never to have additional vaccinations.  She was gone in two months.  We even had Dr. Carl June at Univ. of Pa. involved who helped us culture her T-cells at M.D. Anderson through Texas A&M university to fight the B-cell Lymphoma - but the disease was too fast and unresponsive.

As a result - my wife and I will no longer vaccinate our other dogs on a repeated basis (we have four Dobermans - I mean we have three).  We will only vaccinate in the first year.  Repeated vaccination hits are hard on the lymphoid system.

The article you cite was very timely to read.  But in the case of my dogs Lymphoma - not human CML.  You and I have CML because of radiation exposure somewhere in our life not vaccination.  (So...I'm in the one percent according to Trey).


Diagnosed 11 May 2011 (100% FiSH, 155% PCR)

with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein

 

Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate

6-8 grams Curcumin C3 complex.

 

2015 PCR: < 0.01% (M.D. Anderson scale)

2016 PCR: < 0.01% (M.D. Anderson scale) 

March        2017 PCR:     0.01% (M.D. Anderson scale)

June          2017 PCR:     "undetected"

September 2017 PCR:     "undetected"


#6 valiantchong

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Posted 18 December 2011 - 10:43 AM

I had anti tetanus jab 2 weeks before diagnose, is this the cause ??



#7 Fixitlater

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Posted 18 December 2011 - 12:10 PM

Hi Dina, Scuba,

This is my first post on this forum, but Dina's thoughts about causes of CML and Scuba's answer stimulated my own thoughts on causes.

I had squamous cells migrate from my temple to my silva gland. The tumor was removed, followed by radiation for 33 days. Nine months from my last day of radiation I had CML. Yet the Radiation ONC's say no relation, that Leukemia requires years to develop. So, Trey's response is probably correct, though I can't ignore the correlation when I think about radiation and Leukemia.



#8 ritan/

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Posted 18 December 2011 - 12:33 PM

i spent some time early on worrying about whether i had DONE something to cause this. i deal with commercial dye on a regular basis, and i've never worn a mask, altho some indi yarn dyers do; was it that trailer that we lived in? the plumbing has all been recalled years before, etc. etc. etc. i gave up. it's irrelevant how i got CML. it's not like if i knew how i got it, that they could fix it. i'm won a really lousy lottery. it's not even like i could sue someone for causing it.

you can worry yourself into being more sick trying to figure out how you got it. i suggest that instead you move on. unless you have a massive dose of radiation at some point in your life, you probably won't ever know..... and the end is the same anyway.



#9 ritan/

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Posted 18 December 2011 - 12:39 PM

CML takes years to get to a point where it can be diagnosed. a shot two weeks before had nothing to do with it at all. even in cases where you get diagnosed super early, you'd still probably been developing it for years.

i was diagnosed with 320,000 WBC. i have had various persistent minor infections for probably about 3 years. so, i'm guessing that had i gone to a doc 3 years ago, they might have caught it then. but i treated the infections and moved on. (they were mostly skin infections--they pop up and then go away pretty regularly, i'm just starting to deal with some now 3 months past dx) but even then, most likely my CML has probably been developing for years. like close to a decade. it takes time for a slow moving cancer like CML to get to a detectable level.



#10 CallMeLucky

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Posted 18 December 2011 - 02:15 PM

Millions of people get Tetanus shots every year, only a few thousand get CML each year.

If you believe in the multi-hit theory, you might say it was a contributing factor at the time that played into your "perfect storm".  But any given day things could have gone a different way.  In the end it just comes down to bad luck (or as my first oncologist said - good luck, it could have been AML).

I believe Epstein Barr virus played a significant role in compromising my immune system during the time frame when I likely developed CML.  No proof and it does't really make a difference.  Millions of people get EB and only a few will get CML.


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%
 

 


#11 pamsouth

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Posted 18 December 2011 - 03:45 PM

Castlefiber

Regarding your post "you can worry yourself into being more sick trying to figure out how you got it. i suggest that instead you move on"

I think most of us would like to know how we got CML or whatever disease one may have. I have heard others say I don't care how just want a cure.

I really, really, would like to know so that we could stop others from getting CML and other cancer and diseases. I don't think any of us want our children and grand children to suffer these horrible diseases.

i have my own theory where i got it from.  I do believe that thru out my life I had a disposittion or a compromised immune system, either born with it, or developed it thru a virus or live virus vaccine, as a child.

A few years before I was diagnosed we had sold a home, and I was sprucing up the landing scape to make it look nice for resale.  We had a bad case of bag worms in the neighborhood, mainly across the street that was killing the trees and shrubs,  Many of the neighbors including myself were using a lot of chemical bug sprays. When spraying I did where long sleeves and a mask.  Also I often lit candles in the house and sprayed lysol and used a lot of cleaners. 

We sold the house and moved. A few years later I was diagnosed with CML.  The odd thing was one of my old neighbors from the house we sold,  called me and said my lady neighbor caddy corner from us had also been diagnosed with Leukemia, she did not know what kind it was.  This neighbor lady with the leukemia  had sold her home and moved back in with her x husband as he was helping to take care of her.  That was all anyone knew and I never did find her, to call and ask exactly when she was diagnosed, and what kind of Leukemia.  What I find interesting is that only 4 to 5 thousand a year are diagnosed with CML and me and my neighbor lady about the same age as me were both diagnosed within a short time frame of each other.  Also I found out many others in the neighbor hood were being diagnosed with some sort of cancer, so was it because we were all spraying these chemicals, or was in the soil as well.  


After DX I went to a simaianar with a speaker on blood cancer and he said if you saw what I see you would never handle another chemical without plastic gloves. 

Remember much of our landscaping and soil and stuff are also sprayed with chemicals and mold. 

One time we went to the fire department yard where they were giving out free mulch.  Got a bunch of it and a little latter I noticed all the white mold that was on it.

At another seminar, the speakers were expert on blood cancers.  There was a young guy who had CML, a farmer, and he often sprayed his crops and his family thought he got it from the chemicals spraying his crops.  Also there was a lady who had 4 different  kinds of cancer.  The doctor said when you took this medicine treatment for this cancer it caused the next cancer, then that treatment cause the next cancer so on and so forth.  So medicine and cancer treatment, also causes cancer. It is also a known fact that much of the  radiation for cancers like breast, lung cancer, etc,, when they use radiation it casuses blood cancers because it kills & damages your stem cells or immune system.  That is one of the reasons why a friend of mine who is now in her eighties, she is a retired nurse, years ago she had breast cancer and had a masectomy and refused the infusion and radiation afterwards and nothing more ever became of the cancer.  As she knew the treatment often caused other cancers.

In fact my old onc said at least you only have one cancer most of my patients have multiple cancers, most of her patients are breast cancer patients.


So my lesson here; is I use house hold cleaners that are echo friendly.  I do not handle soil or mulch or chemicals in less I have on plastic gloves. It is rare that I use sprays in the house.  Probably the chemicals in our hair color and perfumes we breath are also chemicals.  Use soy candles and natural things, like our grand parents did.  My mom who passed in 2003 (born in 1920) said they used coffee grounds to die their hair.  Made their own soap.  Their chicken and hens, and beef were free roaming, no antibiotics and no harmon and the beef was much older then the beef we slaughter to today.  Their water was probably much cleaner to.  They swam in the ponds.  Grew their own gardens and canned and ate fresh food, not tv dinners and canned good from the store.

I think even though my mom worked hard in the garden and milking cows, they got lots of fresh air and sunshine, and exercise, not sitting front of the TV.

So even though we had a lot of medical break throughs i sometimes wonder if in our environment and are new technology, we cause are own cancer.

Just thoughts to ponder for those who care. 


PamSouth


#12 ChrisC

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Posted 18 December 2011 - 05:11 PM

Hi Dina,

Yes, it is a shock to get CML. You are of course going to freak out a little, and ask all these questions. Meanwhile, you will be taking your medication, having blood work done, showing up in life each day and staring down your CML with your best laser vision: you are a superwoman and can do this!

You will form your own answers that work for you, and in time you will be a CML veteran who aids and answers newcomers here on this board, until such time that CML can be obliterated before it starts, or that everyone can be resistant to it.

It is my preferred scenario that EVERYONE in the world has breaks in their chromosomes from time to time (for whatever reason, take your pick: environment, vaccines, pesticides, parasites, heredity, stress, etc.), and these are usually fixed quickly by our properly functioning immune system.

However — for whatever reason — sometimes it happens that a broken chromosome is missed and allowed to replicate. In our cases it is the Ph+ chromosome that was produced and then not removed by our immune system, and thus CML was diagnosed over a period of time (undetermined).

What is to be hoped for, in my opinion, is that with CMLers, beyond the basic speedy normalization of all our blood counts, is that we ALL can regain proper functioning of our immune system's intelligence so that, with the help of the correct TKI for our own physiology, we can all achieve PCRu.

While it is still true that the majority of CMLers have not yet achieved PCRu, we still live a nice long life, though likely developing other medical conditions that eventually bring an end to things: we don't expect to go from CML anymore: Hallelujah! http://youtu.be/ZCFCeJTEzNU

Know that much CML research continues and often we'll be reading about more breakthroughs, and participating in more trials, and helping to prevent/heal/cure CML. Returning to the BIG picture-viewing helps free us from suffering when we are feeling overwhelmed and caught up in a small area of the whole tapestry of life.

All the best to you,

ChrisC


Be alert, but not overly concerned.

 

• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week

• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)

• Oct. 28, 2008: CML confirmed, start Gleevec 400mg

• Oct. 31, 2008: sent home when WBC reached 121k

• On/off, reduced dose Gleevec for 7 months

• April 2009: Started Sprycel 100mg

• Sept. 2009: PCRU 0.000

• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)

• Currently: still steady PCRU, testing every 6 months 🤗

— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!

 

 


#13 Judy2

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Posted 18 December 2011 - 05:44 PM

Hi Pamsouth. I often have discussions with my brother about how both are grandmothers lived into their 90's, one was 93, the other was 97. My 93 year old grandmother never had anything wrong until 9 days before she passed when she had a stroke. She never had cancer,arthritis,broken bones, diabetes, nothing at all. My 97 year old grandmother basically died of old age, her organs just started to give out. I'm 53 and have two serious medical conditions. Both my grandmothers lived chemical free, got plenty of exercise and also had all the freshest foods, not at all how we live nowadays. I, personally, don't use chemicals. I never really have, although just living in the world we live in you can't help but being exposed to all sorts of pollutants (remember Erin Brockovich?). Does the world we live in compromise our immune system? I think it probably does. So we get cancer and other illnesses and then have to take strong medicines to keep us alive. Will these strong medicines cause other conditions down the road? Maybe. What can we do about it? It's a lousy way to live but we have to play the hand we've been dealt. We can try to live as chemical free as we can but unless we want to live in some ultra remote place we will be exposed to chemicals. It is amazing how pollutants travel. I live in the Northeast, many years ago there was a large forest fire in Canada. For a few days there was no sun where I live, not because of clouds but because the smoke from the fire traveled all the way from Canada to my town- and that's just the pollution we can see. Who knows what''s traveling around that we can't see. I guess the bottom line is, we don't know what causes CML but we have medicine that we can take for it. Hopefully, one day there will be an answer to our questions but for now I guess we go on living every day, doing the best we can in the world in which we live. (NOT THAT I'M HAPPY ABOUT IT!!!).

Judy



#14 ritan/

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Posted 18 December 2011 - 06:48 PM

i actually think that there is no way to know mostly. i've been incredibly healthy my whole life other than the raynaud's (which quit being a big problem as soon as i started being careful). i had a c-section with my first child, but had two vbacs after with no problems. i've never been exposed to particularly many chemicals. the "sickest" i've been relates to digestive issues i've had for years (ever since my c-section actually). if i'm careful tho, and avoid food that kick it in, i've just never had problems. i'm a generally very healthy person, active, somewhat overweight as an adult.

while it is possible occasionally to guess what causes someone's CML, i suspect that it is all much more involved than single thing, or even multiple things. it is unlikely that we can figure out what causes CML enough to stop exposing people to it. i suspect actually, that while we perceive there to be an upswing in these types of cancer, more likely, actually, in the past people died too early to get sick. and if they got sick with something like CML, they just died. it's possible that the ecological issues might contribute to CML, but impossible to know.

for me, i guess, i'm trying hard not to "worry" about things like how i got it. i have it, and there is good evidence that stress makes it move more quickly toward blastic phase,so i just don't go there. i'm not saying you shouldn't, of course, but for me, i just won't. i can't fix what's happened, and worrying about it was seriously stressing me out.



#15 pamsouth

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Posted 18 December 2011 - 07:08 PM

Scuba,

Regarding your post: "As a result - my wife and I will no longer vaccinate our other dogs on a repeated basis"

We just had our 6 year old 20 lb Poodle vaccinated.  It will be his last vaccination.  Although I understand by law you have to have an annual rabies.  I really had thought about not vaccinating this year. In 2005 we had put down our 13 year old Rottweiler, I so hated to do it, but that last day she had become ill from all the med's and vomited and could not walk at all on any 4 legs, I spent the night on the floor sleeping with her as I was afraid she wasn't going to make it, it really took her down and the next day I had her put down.  I kept praying Lord please take her so I don't have to do this!!   She had been on deramax for a few years as her hind legs were bad, she did good for awhile pulling herself up with her strong muscular chest.  But the dermax caused her to have a bleed. Took her off the deramax  for awhile but then she got worse again, so put her back on, but then she lost all her muscles and could barely eat anything.  I think in the end we had her on rice and something else.  I so did not want to put her down, she was limited in what she could do, but we had low windows and trees and she would lay there and watch the sun rise and the squirrels, birds and other critters. But the med's that kept her walking for a couple of more years finished her off.  She had once been a beautiful giant of a dog, to sagging belly with no muscle down her spin.  She would flinch just to touch her. 

Sorry did intend to go there. But point being i had taken Heidi the Rott to another Vet and he had said after she got a few years old I should have stopped vaccinations.  I took her back to the regular vet and mentioned that to him, but he said remember she is still strong enough to bite and the law requires the rabies.  Strange though he never mentioned to stop the vaccines, that would probably put a dent in his pocket book.

Anyhow I really appreciate your post, as I couldn't make up my mind about continuing to vaccinate our little poodle.  I really don't know if I need the rabies as we only take him on short walks and he really doesn't bite except the vet.  If we go on vacation we have someone come in our home.

Thanks for the post, PamSouth


PamSouth


#16 Judy2

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Posted 18 December 2011 - 07:40 PM

Hi Castlefibers. Regarding your post- Is there evidence that stress makes CML move more quickly to blastic phase? Is there evidence that stress can trigger CML? There was a lot going on in my life when I developed both Wegeners and CML, my mother had passed and my step-father was dx with lymphoma. I continue to be very stressed and often think about speaking to a therapist but haven't followed through on it. It's interesting.

Judy



#17 pamsouth

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Posted 18 December 2011 - 07:48 PM

Castlefiber,

Your Post "worrying about it was seriously stressing me out."

     Ditto here, worry/stress tenses the hole bbody, probably with all kinds of havoc.

I have been frequently getting a 1 hour chinese massage only $25.00 plus tips.  They really do a good job, Although it is in an open room, dark and soothing music, very quiet.  with your clothes all on.  They soak your feet while they massage your arms, head and neck.  Then they massage the feet and up to the knees, then you turn over and they massage from the neck down to the waist. You can tell them whatever depth you want as I can't take a lot of pressure, and these young china folks are very strong, even the tiny ladies.  Interesting most china ladies & men are petite, but don't underestimate their strength.

Then I go to my regular massage therapist every now and then and I give her my precious oils, I love lilac.

Last Friday I tried a complimentary 15 minute with a Certified Healing Touch practitioner.  I believe some refer to this as an energy force or even Chinese Acupuncture without the needles.  I could not believe how beneficial the effects were.  I had a few tears when I left, maybe it was an emotional release, I don't know.   I first I thought no way this can relate to my wonderful hands on oil massage.  But it was truly amazing.  I don't know if I can explain it. I closed my eyes and she said go somewhere peaceful now.   Sometimes she would say is it ok to touch you? She would touch my forehead and a light massage on the neck, feet and ankles.  But what really shocked me, was I could feel this soft gentle warm like breeze go over my body and about the middle of my stomach it was like something was leaving my body, maybe stress, I don't know what other word to use.  There was no fan in the room or anything to cause a soft warm gentle breeze and then feel like something was being extracted from my  belly area, was amazing. Sort of felt like I was floating on a cloud.

Could this be a placebo effect or mind over matter.  I don't really think so as I have had many massage and never have experience this. No I really think their is something to this energy force.  Now why does this particular person have this gift?

She said she did not feel negative energy coming from me.  She did say drink lots of water and eat more greens and fruit.  She did talk to me a little about what things I tell myself.  Like for example,  she said don't say things like I have cancer.  Right as I can feel the stress and sinking feeling go thru me.  But when I meditate and breath deeply and I say to myself the cancer (CML)  is leaving me, the effect on my body/spirit is much different, peace.

Well I have a 1 hour session with her tomorrow say I will see how it goes.  Then I do my physical therapy and chiropractor so should be feeling pretty good!  That is my Christmas Present to myself!

PamSouth


PamSouth


#18 ritan/

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Posted 18 December 2011 - 10:22 PM

well, i thought i knew exactly where the article was that i read about CML patients and stress. but my gleevec filled brain can't remember wherei  found it. i will continue to look and when i find it i'll post a link.



#19 Dina

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Posted 18 December 2011 - 11:44 PM

When I was talking to my oncologist about the possible causes for me to get my CML,

he leaned closer toward me and whispered to my ear" Dina when you find that out, don't tell anybody, except me, we are going to

be millionaires"

Over the weekend I had a little getaway and unfortunately that was to the hospital, luckily everything is fine now, and I'm home,

but that's another thread for tomorrow since I'm really tired now.

Dina



#20 Susan61

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Posted 19 December 2011 - 08:07 PM

Dina:  The best help I can give you is to stop reading everything.  IT will make you nuts.  I think we all did that when we were first diagnosed.  If you have CML already, then does it matter how you got it.  Your concern has to be how to stop it, and your doing that with your treatment.  Think about the people who were diagnosed years ago, and there was nothing to offer them like what we have now.  They did not make it beyond 5 or 10 years.

Not just CML, but so much is being learned with all the latest research on all types of cancers.  Just Thank God Each Day For Where You Are Now, and Not where you used to be.

I hope that helps you to relax, and enjoy your holidays.

God Bless You

Susan






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