CSN Login
Members Online: 9

Other then Cancer You would be considered healthy. lol

thxmiker's picture
thxmiker
Posts: 1220
Joined: Oct 2010

So, I meet with my Oncologist again today. We talk about the sugested treatment from Dr. JH Lenz USC.  My Oncologist is on board for the treatment. We schdule the tests needed, Port inserted on the 10th,  and schedule Chemo for the 15th. 

 

He told me as many other Docs have, "Other then Cancer, you are extremely healthy."  My wife and I laughed at the ironic statement. By the way, my B6 is low, my BMI is 18.2 so I can lose a little weight, and I just got my third cavity at 49.   My CEA is under 2, my Octreotides, H5IAA are both within normal ranges.  My Onc told me you do not have any obvious cancer markers, other then the 30 mets in my peritoneal cavity, the tumor in my Colon, and a skin cancer at the surgical site.  Yes, telling me helps that I have no obvious markers.

 

Obviously, there must be a blood marker that has been overlooked.  Would it not be smart to see what markers are low or high compared to others, so, in the future one could do a second test for future patients?  Or, is it to much to expect for a Doc to learn or make conclusions?

 

I go in to another journey of Chemo amazed that Doctors really do not know as much as they think they know.  We are using a lot of faith and trust in the few Doctors that seem to know what they are doing.

 

Best Always, mike

 

PS This was meant as irony as much as a rant. Thanks all for letting me vent!

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Sorry to Billy Crystal for stealing his old gag.  Several months ago my onc told me that if he ran into me on the street, he'd never know I had cancer.  I told him if he ran into me on the street, he'd better have his auto insurance paid up.  It took him a few moments to get it.

richls
Posts: 54
Joined: Nov 2012

I hear you mike. The dr told my wife that if it wasnt for the cancer she would have no health issues. I told him that is a pretty big if. I am starting to get the impression that the docs dont know as much about cancer as we think. It seems I get better advice from here than I get from any doctor. It feels like treating cancer is a lot like an assembly line. Fill you up with chemo and move along. It is very disheartning.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

you know we have way to much in common, those peky peritoneal mets. i think you are far more alternative then you let on, but thats a guess.

i am so glad your onc supports lenz ideas suggestions. 

the irony is clear, i love irony.

my mental tip for me and for you if you wish.

just read " you are healthy" say it out loud, don't say about those few troublesome cells. we are both definitely going to beat this. did you see manwithnoname post about faith boosting your immune system. 

so many spontaneous remissions, but they never say its the immune system, well what else eats tumours in our body.

I say have faith and trust in the person you love the most on the planet. for me thats me. i can give faith and trust to doctors when its earnt, but to be honest the more i learn, the more i see my fate rests so clearly in my hands and not my doctors. the mistakes from all my doctors, its amazing, I am pleased to be alive to find all the mistakes or the room for lets say clinical improvement.

keep the faith and trust first and foremost in your self and then dish it out wisely. even lenz is only part of the puzzle, he is not god, he may think so. i have met some great doctors, but not one of them knows my biology like me, none of them order the tests, that i order. then we find some key results that need tweaking. ie my dhea is low and i am researching its role in boosting our immune system.

the doctors pretend to understand, i am confident i have had more consults with more alternative doctors and possibly oncologists and I have not been asleep during the discussions. what they know thats relevant to me, i know after the consult.

functional and integrative medicine is so complex, lenz is a beginner, most of the us alternative doctors are beginners. The german wholeist movement has serious historical and clinical advantage over the usa. they also have a more friendly legal environment, look at the experimental therapies I am trying, you just cannot do them in the usa or most western countries. i think i am ranting and venting as well.

I am reading "the hobbit"by tolkein each day to my kids, its my favourite book. on page 24 The wizard Gandalf says of the hobbit to the doubting dwarves "There is alot more in him than you guess, and a deal more than he has any idea of himself" I am a positive thinking junkie, I read this sentence to my 7 year old son and few times. If he gets no other message in life from me this one will be enough. he explained it in his words, and said turn the light off. The other night he had a nightmare about me dieing. Its nice to be loved, we talked about how important dreams are, he was even scared to talk about it in the daytime, but we did gently.

If a hobbit can steal a gold ring, maybe its possible for a few friends to find a way to beat a challenging illness, and in the very least have fun living while we try.

their are so many markers the west don't test for, google tktl1  and coy or nagalase as a start. you cannot do the tests in the usa, only germany.

not one doctor has really impressed me with learning with an open mind yet and i have seen alot. so in their absence we have to step in. sorry but thats my experience, its my life, its my job to save it. even lots of money and fancy clinics does not stop the fact that doctors are human and they miss the details of the results, all the bloody time.

hugs,

Pete

thxmiker's picture
thxmiker
Posts: 1220
Joined: Oct 2010

I agree with you Pete!   The battle aagainst Cancer is fought on many levels, diet, exercise, faith, etc...

 

I do Juice fresh vegetables, mainly carrot, leafey greens(Kale, Swiss Chard, what ever I can get fresh), Celery, Cilantro & garlic.  It tastes good and it helps up my vegetable micronutrients. I take water soluable High grade vitamins D, Fish Oil, B6, Milk Thistle and Probiotics. Those whom have Trade Joes available, TJs has high quality affordable vitamins. We added Oatmeal to the start of our day, and eat the Zone Diet. (We are switching over to the Med Diet, it is very similar to the zone. A little less protein.)  

We got off of White Sugar and use Honey, Mollases, and Maple.  It took a little bit of playing to make cookies and cakes, but really not much. I got it perfected by the third try.  (Whip the eggs, Sour Cream(instead of milk) and sugar(Honey, Mollases, or maple ) mixture until it starts to have air in it.  Then add the flour(Whole Wheat) 50% by folding it, then a little at a time to keep the fluffy mixture.  I add about double the spices that a normal recipe says.

 

The more Homeopathic Books I read the more some of it makes a lot of sense.  I think the Micronutrients are missing from a lot of our diets.  I think if people actually read the ingredient list of products that they purchased, they would be more conscious about what they consume. Even Butter and Milk now contain chemicals if you are not aware.  I also believe that we can get most of our nutrition from natural plants versus a lot of supplements, because the supplements are missing the key micro nutrients that would have made them a great food choice.

 

We moved out of the Big City(Los Angeles adjacent) to Small Mountain Town in Arizona.   The Air and Water Quality certainly are better. It is a slower pace life style. Everyone is not in a hurry. We do not have as many retail options, but we also have the internet or can drive to the big city to get stuff.  We truely learned, we do not really need stuff.

So Pete, Yes I am a convert to Diet and Homeopathic Foods to add to our battle.  I am like an Ex-Smoker, and tell everyone to convert.  lol  

I also agree that in the USA we have to many Legal battles.  One can not sue over every thing. At the same time, one can not endanger everyone else and not expect to have ramifications.  There needs to be a balance.  One can not sue their employer because they hit their finger with a hammer. An employer must also provide safe work conditions. As a previous employer, I provided safety equipment, and safe tools. It would drive me crazy to see an idiot not using the safety equipment, or removing the safety equipment because they knew better. The latter always was their last minute on the job. I told every employee that I can not teach them to be polite, on time, or have common sense, that was their parent's job.

 

Best Always,  mike

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

nice answer, thanks, not needing stuff, i love it. 

maybe we could just keep the healthy stuff. 

hugs,

Pete

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

No colds, flus or other viruses that winter.  I skipped my annual bronchitis that year (first time in years.)  If I hadn't been in the midst of cancer treatment, I would have been the healthiest person around!  Ah, yes, the irony of it all!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

but the immune specialists i chat to say thats an example of immune dysfunction, becuase the body has been unable to mount an effective immune response. just saying what i was told that sounded reasonable.

hugs,

Pete

smokeyjoe
Posts: 1428
Joined: Feb 2011

I was at my family Doc.'s office the other day as I have a UTI .... he's checking me over and says  "You are so strong"      I didn't know what to say.     

Lovekitties's picture
Lovekitties
Posts: 2937
Joined: Jan 2010

Pete, I am not sure that makes sense to me.  The lack of immune system response to a virus does not mean lack of symptoms of an illness does it?  Granted, a fever or some of the other usual symptoms may be immune responses, but that would not preclude the disease being present.  With that logic, all viral and bacterial issues would then have to be considered CAUSED by the immune response.

It would seem to me that if a virus or bacterial infection was present and went unchecked by immune system or meds, said virus or bacterial infection would take over the body. 

There is a difference between the body not mounting a significant defense against a virus or bacterial infection and not having it at all.

That is just my opinion on their's.

Marie who loves kitties

 

manwithnoname
Posts: 390
Joined: Jun 2012

"It would seem to me that if a virus or bacterial infection was present and went unchecked by immune system or meds, said virus or bacterial infection would take over the body."

We have viruses and bacteria that are dormant (latent) then at times they can flare up, if the immune system couldn't mount a descent response you are right in saying they will take over.

With cancer the immune system regards it as 'self' but everyone has cancer cells but not everyone develops full blown cancer, seems a balance has been broken to me.

The immune system's own T-reg cells in the tumor micro enviroment suppress the immune system response, depleting T-reg cells seems crucial, all cancer patients have elevated T-reg in the blood. 

We are about to do a cancer vaccine using semi-allogenic DC cells, that means a relative donors immune system which will (hopefully) 'see' the cancer cells and kill them.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

last postl/reply for a while, on holidays having fun in the sun and relaxing with more sleep anf yoga and less research. anyone can google immune system and  start reading, i have to study the hobbit, my kids orders. they out rank the oncologist. 

marie, i dont have detailed references re immune dysfunction and symptoms, i will ask immune doctors february when back germany. i know this is very touchy subject matter as the primary colorectal chemo kills our immune system alas, my own experience and many others. i have faith i will stimulate my and find a healthy way. sorry but no point holding any opinions back anymore, as challenging as my opinions and conclusions and the implications are for my own survival. I will leave others survival to their doctors, but its fun to have friends to exchange thoughful ideas and share research and experience. We will find a way to survive well I pray. I will be able to give the virus and symptom discssion a proper answer one day, but not today. I have to drive away and play with the kids.

tony, thanks for the good details so our friends don't have to search to far. the tregs are bad news re dr nesselhuts consult and my dc vaccine, as soon as my white bloods get a serious boost, i can tune it by knocking out tregs using 50mg cylophasosmscide, until that time its mushrooms, thymus, exercise, relaxation . so have fun with your son and goodluck with his immune system, i am still making maf314 gcmaf and having it daily. it seems to be the treg immune suppressor issue is where the challenge is at right now. time will tell with me, with us all. our biology is fascinating, day by day we learn more, we have more faith. how cool that boosts my immune system, or so i believe based on the hardcore research that i accept.

if the immune system discussion causes emotional upset or confusion, just hit the back key right now and forget it. if it gives hope, like me, then read, research and meditate on the immune system healing you.

hugs,

Pete

 

KathiM's picture
KathiM
Posts: 7879
Joined: Aug 2005

Wierd, huh?

 

I just said 'Thank you'.  And shook my head slightly, and lowered my eyes.

 

Hugs, Kathi

LivinginNH's picture
LivinginNH
Posts: 1295
Joined: Apr 2010

Oh yeah, every doctor we met told us with a smile, "You're extremely healthy, except that you have cancer.".  Seriously??  He had no markers either, it was just his biology.  I also don't have as much faith in doctors as I used to.  For instance, I had a colonoscopy this mornng with a doctor I never met.  After he finished telling me the odds of this or that possibly happening during the procedure, I told him that the stats don't matter, but his skill level did.  I don't think he liked that, but I just don't care anymore. 

Take care,

Cyn

tootsie1's picture
tootsie1
Posts: 5006
Joined: Feb 2008

Hoping the new doctors will have some wonderful answers for you!

 

*hugs*

Gail

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Recent neuro doctors aid I have taken very good care of myself....well that's relative but good to hear since I just had a brain met removed.
I totally believe our diet is so important and all the alternative therapy we can do as Pete posts for our benefit!
We have to push ourselves and find if Reiki works, a walk, supplements!
I think it helps more than we realize. The doctors are not in tune with the next level, at least not mine.
I have so appreciated everyones postings on their diet and exercise capabilities. I find it inspiring and it helps motivate me to try something new or another level of wellness.
Mentally, cancer is so difficult to deal with!
I struggle with friends who think its chemo and a prayer shawl and mostly empathy. They don't realize the depth of fears we can encounter and constant hope we seek with different consultations or a medical problem arises that we didn't expect....future in general
Thank you for reading my post....
Barb

luvinlife2
Posts: 172
Joined: Jul 2012

Good post!!   I think it can be very beneficial to be open to other treatments besides the standard chemo.   My nat Dr. looks at these other treatments not as cures, but as treatments that help to keep cancer cells in a weakened state so that they continue to be susceptable to chemo.  So far that method has worked for me.  Good healthy diet is common sense when trying to heal.  Sometimes it's good to look outside the box and I have grown to appreciate those Dr.'s who are gutsy enough to do that whether it's something that isn't standard within westeren medicine or otherwise.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network