I ALMOST DIED today...

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Fede

I ALMOST DIED today...

Postby Fede » Sat Jun 16, 2012 2:26 pm

Hi, at all,

Today, I woke up very early, I had to go get the PT / SCAN of my father, went to the hospital running, and I withdraw the report and tomographic images. I almost died, I saw 3 images hypodense of 2 cm each in the segment VI. He received his last round of chemo the last week of April, less than one month and a half. This is your first cycle after your surgery of liver in mid-February. So I thought, the surgery did not work and the last 4 rounds of chemo either. I was thinking about a transplant, I would give my father half my liver. When I got home, urgent call to the oncologist, and I tell her if possible this situation. She responds, which may be spaces in the liver that have not been filled through the regeneration process and added that check where the transplant surgeon carried out resections. I check it, and coincided, with black spots where they were placed clips and resections were made. Someone had experienced this situation? On Monday we go to the hospital. Once again I think and confirm that we are prisoners of the laboratories, according to information I get from the last congress of cancer. Keep in mind not eating supermarket products have preservatives nitrates. Remember your grandmother and grandfather, they did not eat processed and packaged food industry. They take milk from the cow .... thought.

Fede. Stop laboratories We wish not colour papers (money) we only need health, and a mesage for the CEOs and CFOs, they will die too inclusive with colour papers over their bodies.... Colour Papers kill the human being. JUST TRY TO THINK, AND FIGHT.

so-scared
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Re: I ALMOST DIED today...

Postby so-scared » Sat Jun 16, 2012 2:57 pm

My husband had liver resection/rfa in Dec. He was scanned before starting chemo in Jan and there were multiple areas of hypodense blah blah blah... it freaked me out! I was assured by the onc that these were the areas that were rfa'd during surgery. So, yes I do know the feeling you had as I had thought ....What??? he just had surgery to remove those!!

Hang in there and I am glad that you didn't die! :wink:

So-s
DH 51 yo
dx 5/16/11 stg 4 RC
mets both lobes liver & lung
6/11 chem/rad
FOLFOX 9-12/11
12/11 TME/liver resect/rfa (15 tumors)
more Folfox w/Avastin
5/12 innumerable mets liver
Folfox/Avas FAIL
9/12 FOLFIRI/Erb FAIL
HAI pump 12/12
Had to leave 5/23/14

NedPlease
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Re: I ALMOST DIED today...

Postby NedPlease » Sat Jun 16, 2012 4:00 pm

Yes, I also have mysterious stuff around surgical clips. Consequently, I have MRI every four months for probably a year. Surgeon says it's not behaving like cancer. Good as it gets for now.
In agreement with limiting, or better yet, eliminating processed foods.
Very glad you're alive, Fede. Wouldn't be the same without you. :)
Sending prayers for your father.
F-54- St 4- Ascend Colon, 2 Liver mets, Poorly dif, Mutant
6/10- Folfox
9/10- R Liver Resect/Colon/Gall/Appendix
11/10-3/11- Folfox
11/11- R Lung, 1 met, VATS
3/12- 9/12- Xeloda
2/12- 6/18 Clear Scans
6/19- first time no scan
Today- NED

Fede

Re: I ALMOST DIED today...

Postby Fede » Sat Jun 16, 2012 10:03 pm

Hi, so-scared and NedPlease, both really descriptives nicks.

Really thankssss a lot, for tell me your experiences, I am happy to read your stories, I have felt as I m dying in the morning.

NedPlease thanks for your words :D , so - s I have read the same things you have descripted, "multiple areas of hypodense 2 cm... I could not believe it, we were looking for the best transplant liver surgeon, and the chemo has finished nearly two months ago.

Thanksssss for your time.

A huge hug for both.

Fede. at least I take a breath.

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Gaelen
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Re: I ALMOST DIED today...

Postby Gaelen » Sun Jun 17, 2012 6:59 am

Fede wrote:Today, I woke up very early, I had to go get the PT / SCAN of my father, went to the hospital running, and I withdraw the report and tomographic images. I almost died, I saw 3 images hypodense of 2 cm each in the segment VI. He received his last round of chemo the last week of April, less than one month and a half. This is your first cycle after your surgery of liver in mid-February. So I thought, the surgery did not work and the last 4 rounds of chemo either. I was thinking about a transplant, I would give my father half my liver. When I got home, urgent call to the oncologist, and I tell her if possible this situation. She responds, which may be spaces in the liver that have not been filled through the regeneration process and added that check where the transplant surgeon carried out resections. I check it, and coincided, with black spots where they were placed clips and resections were made. Someone had experienced this situation?


Let me make sure I understand, Fede - you went and picked up the latest scan for your father and then tried to interpret it (and diagnose what you saw) all by yourself without any professional medical input? And you basically scared yourself to death coming up with an interpretation that was completely incorrect? And then, when you talk to your dad's doctor, she was able to clear up your misunderstanding - but you're still blaming the labs and other modern medicine for your fears?

Several people on this board have experienced this, Fede - second-guessing their doctors and their diagnoses. It's a result of thinking that you can't wait for results, and that you have enough personal medical knowledge to successfully interpret scans and reports on your own without medical help. But when these people who also experienced this shock that "it didn't work" took the time to consult with their oncologists, surgeons and radiologists, they were able to avoid all the panic and fear that you went through yesterday when you pulled the scan results and tried to interpret them on your own. Aren't you glad that you took the time to speak with the oncologist, and get a professional medical opinion from someone who has more experience reading (and interpreting!) scan results, so that you could understand them more accurately?

Fede wrote: On Monday we go to the hospital. Once again I think and confirm that we are prisoners of the laboratories, according to information I get from the last congress of cancer.


I dunno, Fede. Once again, it seems to me that you are far more a "prisoner" of your own fears, perceptions about what it appropriate for your father's treatment, and complete lack of trust in your father's doctors. As I and others have posted to you before, it's fine to do your own research and ask questions. But there comes a point in treatment when you have to recognize that maybe, just maybe, his doctors DO know what they are doing.

I would hope, for instance, that this experience might show you that your dad's doc's skills in scan interpretation are stronger than your own. I would hope that this experience might show you that maybe, next time, you don't need to pull the scans, race to the hospital, and try to do your own interpretation of the scan results without medical help. I would hope that you could use this experience to recognize where you need to trust and rely on the labs, the doctors, and the reports. I realize that you spend a lot of time doing your own research. I've read countless times in your posts that you have all kinds of medical control experience. But as I and others have posted to you before, you are not a doctor. Your work experience clearly doesn't make you qualified to interpret your father's scans (as this incident should show you!)

Please, Fede - if you continue to try to out-think and second-guess your father's doctors, you're going to make yourself and your father even more concerned and nervous than you already are. Spend your time breathing, supporting your dad, and learning to understand this life with cancer - not trying to out-diagnose the professionals...I promise you'll be calmer and happier for that effort.

Be well.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment

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kimmercans
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Re: I ALMOST DIED today...

Postby kimmercans » Sun Jun 17, 2012 9:22 am

It is so hard to put trust into medicine when it's treatment causes so much suffering for such INADEQUATE results. Western medicine is notorious for putting a bandaid over gapping wounds....with the rationalization that if we can make the symptoms go away, if we can make it disappear on x-rays, if the lab values are normal then we SUCCEED.

When, when, when will we get to the BASE of illness and start treating the REASON we are sick?
I feel your frustration Fede. I understand and validate your panic. Wish I had a good answer for you. Hug your Dad...enjoy his presence....and take things one day at a time.

It is Father's Day here in the United States. I sent my best wishes to your father and many strong happy thoughts to you Fede. You are a treasure here.



Kim
Kimberly Age 54 Diagnosed at 44
Dx'd rectal ca 10/12/09
LAR,TME 10/14/2009 Stage 2a
Opted out of Folfox.
4/19/12 CT scan clear NED CEA<0.5
10/2019 still NED
Taking curcumin, Celebrex, vitamin d, digestive enzymes, bio identical hormone replacement.
2015 to present. Stopped all surveillance. Living life one glorious day at a time.

Laurettas
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Re: I ALMOST DIED today...

Postby Laurettas » Sun Jun 17, 2012 9:34 am

I know, Fede, how jarring some of these reports can be. Our onc said that there had been growth of my husband's tumors on the last scan but when I got the scan and read "extensive new growth" at least four times, it almost took my breath away for a minute. Same with hearing a CEA jump from 17 to 51 in three weeks. I am still holding out hope that one may be a good sign but only time will tell.

After reading the stories of some on here, I am kind of resigned to the fact that things can go terribly wrong very fast and so I keep that always stored away just in case. This cancer is a total walk in the dark and we have to be prepared to take whatever is thrown at us and run with it at any given moment. I wish we could control it and make it do what we want, but we can't. All we can do is be prepared. I guess I try to maintain cautious optimism, hoping for good results but knowing that we may not get them and ready to accept whatever comes to the best of my ability.

Have a Happy Father's day (American time) with your dad and enjoy the love that you share!
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Bev G
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Re: I ALMOST DIED today...

Postby Bev G » Sun Jun 17, 2012 9:37 am

Hello Fede,

I HAVE to ditto what Gaelen said. I love it that you are always trying to come up with new theories of cancer prevention and therapy. Who knows, maybe someday someone like you will come up with a novel approach that no one has actually thought of. But Fede (and I've mentioned this to you many times), for what it's worth, if you burn yourself out trying to "reinvent the wheel" (meaning endlessly agonizing over stuff that is "OK", but you just don't happen to know it yet) will you be around and functional to take care of Dad?

All these imaging things are really, really tricky! In the early 80s I was becoming certified to do fetal ultrasounds, it was a long process, and even when I was "certified" I wasn't all that good at it for many years. Early on, I was scanning a baby and was absolutely "positive" the baby's nose had "fallen off" of it's face. WELL, I had never heard of that happening! But there is was...."free floating" in the amniotic sac! This was earth-shaking medical news...poor baby...poor parents. I looked at this nose from every angle I could think of---for probably 1/2 hour. I was so, so certain that this was a catastrophe. Well, of course, IT WASN"T. I just had many, many things left to learn, and I continued to over the next decades. There are still many things I wouldn't trust myself to diagnose with 100% accuracy on a fetal ultrasound!

These docs spend: 4 years in college + 4 years in medical school + 4 years in residency + (usually) 3 years in a fellowship (ie 15 years post high-school) to learn what they learn. They know A LOT. And for those of us who get our care in any sort of academic facility, it is COMPETITIVE to get a job--they don't take "slackers" of the street. These people have to have peer-reviewed publications (sometimes lots of them), have participated in decent research (sometimes lots of it) and be respected by their peers. They DO know what they're doing (almost always). Stuff on TV is always dumbed down, perhaps contributing to us thinking it IS easy, or doctors ARE dumb, or doctors ONLY go to work to flirt with their colleagues or the nurses. NONE of that is true.Not all (or most) doctors are just in it for "the colored paper"! My husband took a 60% pay cut to move from LA to Georgia to take care of impoverished women. He's not a Saint---others do it to. Any doctor you EVER see in an academic facility is NOT there for the money!

My husband is currently spending about 35 hours a week in his practice (even with his stage IV lymphoma) then comes home and probably spends another 8 hours a week reading his journals, or about new stuff on line.. He still publishes papers and I believe has a couple in the works right now.

Do doctors screw up sometimes? of course they do! There is evidence of that on our board. I think it LOOKS like they screw up more than they actually do because of their communication problems. Countless board members are confused about "staging" because their docs just don't want to take the time to explain the complexities of it....how many dozens of times have we beaten it to death here? Imagine if they had that lengthy conversation every time a stage III developed a met? Far easier (though incorrect) to say: "Now you're a stage IV".

Anyway, Fede. Try to let the docs do what you're paying them to do: Make an intelligent plan for Dad, order the correct medication and monitoring to make sure the plan is working, review all the data they receive, and interpret it based upon all of their knowledge (including expertise that, no matter what you do, or how much you read, you, or me, or anyone on the board, will never ever have) and try to have some trust in them. I'm POSITIVE that your Dad has at least some doctors who DO care, and really DO want him to do well.

And as for you, dear Fede, take some breaths and be good to yourself! It sounds like he's doing well. Now, try to do well yourself! :) Please give dad a hug for me.

Much love to you,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

Fede

Re: I ALMOST DIED today...

Postby Fede » Sun Jun 17, 2012 6:52 pm

Hi Gaelen,

[quote="Gaelen"]Let me make sure I understand, Fede - you went and picked up the latest scan for your father and then tried to interpret it (and diagnose what you saw) all by yourself without any professional medical input? And you basically scared yourself to death coming up with an interpretation that was completely incorrect? And then, when you talk to your dad's doctor, she was able to clear up your misunderstanding - but you're still blaming the labs and other modern medicine for your fears?

I repeat again, I m CPA, and financial advisory in the U.S markets, if you need any advice, just only ask me, I love it, I love the markets, and my profession, I m not a doctor obviusly, but I am not stupid neither...., I have audited the largest labs around the world, if you need references I could give these (Glaxo, Roche, Sanofi Aventis and Warner Lambert), and I know how thay are acting against this disease. Respect to my interpretation, I have studied a lot of scans, but I have felt amazing this time, because of the clicks in his liver is a liver surgeon topics, so my bad interpretation, was solved in 30 minutes when I called our onc, (she is the best, Ddirector of the largest Public institution in Argentina), of course I arrived at home crying yesterday.

Respect to the confidence, I have a wide confidence in this onc we found and in our liver surgeon and his team, his is the transplant boss, but I have problems with some others oncs.
Respect to research, despite of my panick attacks and hard depression, I always try to help, and I m not feeling less than nobody in research stuff.
I m not sure if we could get the chronification of this f...cking disease at least, but I will fight for it, and my mind will work while god let me it.
I don t like to guessing, it s not my style, so as auditor I always cross information so as to check everything.
I am agree with you and thanks for your suggestion, that in this issue the medical analysis is the most important.

On Monday we go to the hospital. I think and confirm that we are prisoners of the laboratories, according to information I get from the last congress of cancer ASCO, sure, I m totally convinced in this f..cking business.. the worst business a group of beasts are capable of maintain.

Please, Fede - if you continue to try to out-think and second-guess your father's doctors, you're going to make yourself and your father even more concerned and nervous than you already are. I AM AGREE WITH YOU, I WILL TRY TO BE MORE ANALITICAL.
IT S GOOD GAELEN, I am trying it... "Spend your time breathing, supporting your dad, and learning to understand this life with cancer MY MANNER TO BE IS WORK FOR DISCOVER THE MORE STUPID THING TO HELP PEOPLE, NEVER IS MY INTEREST TO DO ANY DIAGNOSE. I promise you'll be calmer and happier for that effort.

Thanks Gaelen for your words.

A kiss for you, and I appreciate really your advices, all serves here.


Fede

Fede

Re: I ALMOST DIED today...

Postby Fede » Sun Jun 17, 2012 6:57 pm

Hi, Kim before all thanks for your words, and you are really beutiful.

kimmercans wrote:It is so hard to put trust into medicine when it's treatment causes so much suffering for such INADEQUATE results. Western medicine is notorious for putting a bandaid over gapping wounds....with the rationalization that if we can make the symptoms go away, if we can make it disappear on x-rays, if the lab values are normal then we SUCCEED.

When, when, when will we get to the BASE of illness and start treating the REASON we are sick?
I feel your frustration Fede. I understand and validate your panic. Wish I had a good answer for you. Hug your Dad...enjoy his presence....and take things one day at a time.

It is Father's Day here in the United States. HERE TOO, SO I THINK WE ARE ALL FIGHTING ... I sent my best wishes to your father and many strong happy thoughts to you Fede. You are a treasure here.

Kim


A kiss for you, and this is a GREAT PHRASE YOU WROTE "Western medicine is notorious for putting a bandaid over gapping wounds"...

Fede

Fede

Re: I ALMOST DIED today...

Postby Fede » Sun Jun 17, 2012 7:19 pm

Hi, Laurettas

As you told me " I guess I try to maintain cautious optimism, hoping for good results but knowing that we may not get them and ready to accept whatever comes to the best of my ability.

Have a Happy Father's day (American time) with your dad and enjoy the love that you share! "

We are trying to enjoy several moments working and talking about all, my father is my unique family, so I will fight always, and I will do all.

Please, I you are a good research too, I have read many articules and studies you posted, please keep doing it.


Hi Bev,

I have read slowly each line you wrote, before all, thanks for your time and for your love in your words. It serves me a lot, I always remember you... I would say everyday joint to my friend skyfletch and other mates whose help us since the first moment, I wish to visit you and Sky, and many friends any time.
But as I told you before, here in Argentina, things are differents, the majority of docs here have not the U.S experience and career, so if I had finished my passport, we would be in Italy, Spain, Japan or U.S. but not here. this is the key where I understand you imagine here is as same as U.S or Europe. Unfortunately noooo.... so we live looking for the quality and avoiding some docs some oncs, all time.
It s awful Bev, but it s the fact.

I love your words, thanksssssssss infinit thanksssssssss...

A hug for your husband, tell you at your husband about me, and take care yourself too. I will try to breath deeply I promise it.

A kiss for you and for Laurettas.

Fede

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Nickmark59
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Re: I ALMOST DIED today...

Postby Nickmark59 » Sun Jun 17, 2012 8:43 pm

I know during one of my scans My oncologist got an emergency call to come and look at it right away and the tech mis interpreted the divit as my surgeon calls it in my colon and it was filled with fluid . Not an emergency but yes You really need a pro to take a look at scans. I hope I get good news from my onc tomorrow on my latest CT and answers about this anemia maybe then again I do not want to know :roll:
CRC- IV 7-th yr Survivor -5 rectal tumors 1 bleeding with mets to liver
Rad. 36 treat.
with 6 Chemo 2-Ox.- 4 Fol.
surgery 15 hrs to resect colon and liver- Feb 08
follow up 6 chemo Folfox
www.darkinvestigations.blogspot.com

Fede

Re: I ALMOST DIED today...

Postby Fede » Sun Jun 17, 2012 9:57 pm

Hi, Nick

I understand you, we have to go to the hospital in the early morning too... so the it seems as you described we don t want to hear nothing...

I hope the best for you, and fight against your anemia, all is possible.

A hug for u

Fede


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