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Stage 4 colon cancer with mets to the liver and now new anal cancer diagnosis

Houdini71
Posts: 2
Joined: Sep 2016

Hello everyone,

I'm new to this forum and wanted to reach out to anyone with any words of encouragement or just to talk because I'm a mess right now.

Here is a quick rundown on my fight.

I was diagnosed with stage 4 colon cancer in august of 2013 and had a colon resection in October of 2013. In November of 2013 I started my chemo journey which has now been over 40 rounds of chemo all together. I started out on folfox, then switched to folfiri and in march of this year my oncologist wanted to switch me to Stivarga. I've heard and read some pretty bad things about Stivarga and was thankful that finally he mentioned about getting a second opinion. So we said yes we want second opinion and he set me up with the doctors at UCLA and went to meet with them. Keep in mind that this was in march of this year and I met with the drs at UCLA in the beginning of April. The doctors we met with there looked over all my scans to get an idea of how I've done on chemo and they were super impressed with how my liver tumors had responded to the chemo and felt that I could be a candidate for the Y90 procedure or also called therasphere. They first had to take my case to the tumor board for approval and it took about a week to get the news that I was a good candidate.  During this waiting period I started to experience a lot of pain in my anus and it felt like I had hemorrhoids and the last pet scan I had at the end of march when my oncologist suggested the 2nd opinin showed there was some uptake in the rectal/anus area.

So I took it as if it was indeed hemorrhoids and I figured that if it was something to be concerned about my oncologist would have done something to check it out and investigate. I have to add that since starting out with this oncologist I was never happy but my wife insisted we stay with him because she heard really good things about him. Anyhow, from april to june still on no chemo I was finally able to get the first part of the Y90 procedure which is the mapping and then the other 2 steps were done in mid june and at the end of july.

I had to wait about 3 weeks with still no chemo and to get a pet scan and ct scan to see if the Y90 procedure was effective or not. I finally was able to meet with my new oncologist because I didn't like the oncologist I had so it took a bit to get into see the new oncologist. I met with him this past Thursday and he said that there was good news and bad news and the good news is that the procedure did work but that the Y90 procedure is a targeted therapy and only targets the tumors that the procedure is administered to. The bad news is that there was 3 new small spots that showed up and he was going to talk with the doctor that di the Y90 procedure and see what the next step would be.

I mentioned to my new oncologist that I was having a lot of pain in the anal area and thought it could be hemorrhoids and that it was very very painful and also told him that I had an exam with a colorectal surgeon at UCLA the next day (Friday) to see what was going on. My oncologist said that he did see some uptake in that area again on the pet scan and that it was a good idea to have it checked out. So now we leave the cancer center and head down south to UCLA for my exam on Friday and I go to my exam and doctor feels around and says he doesn't like what he feels and is concerned so he wants to get a biopsy. So he sets me up for a biopsy for the following Tuesday after the holiday and I get that done and after the biopsy he said he suspects it's cancer but lets wait for the pathology report.

Now here we are a few days later on Friday and I get a call from his assistant to tell me that it came back positive for cancer and that it said on the report it was moderate differentiated adenocarcinoma which I have no clue what that means and pretty much ruined my weekend with worries and stress because I don't meet with my oncologist until Monday late afternoon. So early today Friday the 9th I had an ultra sound done on a lump that also showed up on the pet scan that my oncologist wanted to check on. I've had this lump right above the incision area where they go into the femoral artery during the Y90 procedure, the lump has been sore and caused some leg soreness but from what the dr at UCLA that did the Y90 procedure said it was normal and not to worry. Now with the bad news I got today about the anal cancer I'm sure that the lump in my groin is related to the anal cancer or cancer related to my colon cancer.

I don't understand how a doctors assistant would call a person on a Friday to give them devastating news to have to deal with over the weekend with no doctor to talk to about what we are going to do etc etc. Now I have to wait until Monday to get any information as to what the plan will be. Now every ache and pain I feel now I feel like the cancer is just spreading. I don't know if it's all in my head or not... Like I said, with the bad news today it's just made me a complete basket case.

Sorry for the long story but Im at a loss as to what to think or feel anymore. I've fought so hard to be strong and fight the cancer in my liver and now I get the news that I'm going to have to add a whole new fight to the one I'm already fighting already. I feel like Im going to lose and there is fight left in me to take on what I've been dealt with today.

I don't know what I'm looing for from this post but I guess if anything maybe someone with a similar story or words of encouragement or anything to help change the dark place I'm in right now.

Thank you all for taking the time to read my story and I hope to hear from anyone and also hope to give back to this forum with the experiences ive gone through dealing with stage 4 cancer.

God Bless you all!!!

Houdini71

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

Hi there, and welcome to the board.

I'm sorry you're having to deal with everything you've been going through. I agree they should've waited to give you the news, but who knows what they were thinking. I totally understand that strange feeling that the cancer is growing exponentially, and that burning anxiousness to JUST GET IT OUT ALREADY, but that really is just the knowledge you have beating you up.

It's very important to allow yourself to grieve as you need to, and feel what you need to. Then begin to formulate your own plan for kicking its ***. If nothing else, this could take a huge bite out of your stress that the cancer's going ballistic inside you. Do something for yourself that will reverse the thoughts in your head. Do some research on alternative healing and try something that sounds plausible to you. Spend the weekend juicing every organic veggie and fruit you can get your hands on and tell yourself the highly dense nutrition you're feeding your body is killing the cancer. It really does (I cured a small met in my lung by heavily juicing for a month).  Find a licensed Traditional Chinese Medicine (TCM) doctor in your area and consult with him/her. There's a very nice man on this board who's had wondrous success with it and is very knowledgable about how it works. I hope he chimes in. Actions like these will give you back some of the control you feel you've lost by having cancer. The thoughts in your head can be dangerous when you're trying to heal and can most definitely impact your health, good or bad.

These are just a few suggestions that I know have worked for me and others when dealing with cancer. I took my power back a long time ago, and though the cancer continues to pop up every now and again, I'm able to beat it back on my own terms. I hope you can do the same by whatever means you find works for you.

Sending you best wishes for a peaceful weekend,

Krista

Ms. Vic
Posts: 7
Joined: May 2016

Krista, since you don't use chemo at all, would you share what alternative treatments you use? I was diagnosed in May, stage IV colon cancer, spread to ovaries, had sugery and after recovery period have started chemo.  Oxipalitin and Xeloda.  I am nauseous most of the time even with nausea meds.   I would love to find alternative routes to this, but I want to fight the cancer too.    Some have also died while trying to use alternative methods and refusing chemo.  I would love to hear about the other options, I am open to tryin anything.  

 

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I tried everything in the beginning, but I don't know if any of the enzymes, supplements, teas, apricot kernels, or anything else helped. I was getting recurrences about every year, but I was in a highly stressful situation. I stopped doing chemo after the last six rounds of Folfox that was typically recommended back then, and refused to do anymore because the cancer came back anyway.

The only alternative treatments I did that I know worked was heavy juicing with homemade vegan meals (did it for a month religiously) and the lung met disappeared (that was during the stressful situation). Two subsequent recurrences were treated with surgery only, then I got out of the stressful situation and didn't get another recurrence for nearly three years. This last one was a met at the surgical site that disappeared after five weeks of a pretty strict raw food diet.

I have a friend who was diagnosed with stage IV colorectal seven or so years ago, and instead of doing any standard treatments at all (including surgery), he opted for a strict macrobiotic diet. It kept his cancer stable for five years until he stopped doing it and the cancer began to grow again. He chose to do chemo this time around, and died a year or so later.

I believe anyone can cure themselves of cancer with a purely clean diet that's loaded with natural organic nutrients. The longer a person does it, the less likely the cancer will return. The only hard part is resisting the temptation to 'cheat' and eat things that aren't healthy, and staying motivated.

I can recommend a lot of books and videos that helped keep me motivated in the beginning, but talking to other people who've had success is even more motivating. There are several on this board.  I really believe in TCM, what John23 is doing, as well. It's mostly drinking an herbal tea, but can include other things such as acupuncture.

Good luck in your journey, Ms. Vic, and I hope you're able to find what will work for you.

Hugs,

Krista

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

and I'm sorry you're here, but its a good place to be, now that you have joined the hoards of CRC patients. 

I can relate to several things you have mentioned in you post; especially thinking that the Cancer is spreading everywhere. Every ache, pain or even slight niggle, has to be Cancer. It is a truly horrible thought, that runs away with itself if its not brought under control. 

It is also the most natural thought for a Cancer patient.

I remember telling my GI Doc that I thought my Cancer had grown back after my resection - And I mean RIGHT after - He looked at me like I was a complete lunatic; but you know, I was a complete lunatic. Thats what Cancer does to your head. He practically laughed it off. I don't like being laughed at, so I'm going to a different GI Doctor now. 

There came I time when I HAD to do something about the games my head was playing with me, and that is when I found guided imagery and then meditation.  OH MY WORD! It was like a little miracle happening in my head. I can't even begin to tell you how it saved my sanity. I know it doesn't work for everyone, but it was truly a life-saver for me. 

My advice to you is that you find something that brings you peace. Something that helps you control those runaway thoughts. It could be music, meditation, cooking, walking. You will know when you've found it. 

I am sorry for the road you have been travelling. Its been a tough one, and no doubt won't be getting any easier for a while. 

I think there are allot of things out there that can help if not heal. I'm all for eating healthy (must look seriously into juicing), living healthy, thinking healthy. I've pretty much got the living and thinking down but need some more work on the eating. 

I pray you will get peace of mind at your Monday appointment. A plan, moving forward, really helps. Waiting is like sitting on the railway tracks watching the train barreling down on you. 

Again, I welcome you to the forum. We're a great bunch. 

SUE

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Oh? You expected to see a list? (there isn't one)

 

If you don't really know or understand what "cancer" is, please allow me to convey a really simple explanation.

(This explanation is echoed throughout the medical industry and scientific world in various forms, and at times in a very complex manner. It's biologically and scientifically correct and no argument has ever been provided against the basic principle of what a cancer cell is and/or why it exists).

When our body allows defective. dying, or dead cells to remain inside us, those defective cells can turn against us. They can't hear our body's instructions any longer and frequently turn to the fermentation process to survive. They take in glucose for food and energy and eject lactic acid as waste. (The liver converts lactic acid into glucose as one of its natural processes). 

Since these once good cells have been damaged and can no longer hear our body's instructions regarding how to live, and since they are now surviving by the fermentation process, they just grow aimlessly, displacing the area that our good cells need for survival..... This "rogue cell" has been given a name by the western medicine industry to identify it; it is called "cancer".

To kill anything.... human, plant, fish or foul, electronic or mechanical   .... to kill anything that is existing, that item must be damaged beyond its ability to exist. It must be damaged beyond it's ability to function.

Our body produces damaged cells during it's natural growing and healing process. Our body damages (attempts to kill) good cells to make room for new, healthy cells. Our immune system (T cells) are normally there to remove the damaged, dead or dying cells as they occur.

The "T" cell components are a powerful part of our immune system and one of its duties are to safely identify defective cells and remove them as quickly as possible. That is important, since our body is continually growing and healing and the naturally resultant damaged cells can be detrimental to us if they are not ejected from our body.

Outside problems, chemicals, radiation, etc can damage good cells also. In reality, the amount of items and conditions that can damage any living cell are endless and can be a contributing factor to the problem of "cancer", but the true, real problem is very simple:

The immune system is not doing the job it was intended to do. It has allowed a defective cell to continue to survive totally unrestricted, using the fermentation process.

Please note, that it is very important to have a very strong immune system even if it is not properly identifying a defective cell the way it was intended to. The immune system will fight the damage and side effects that rogue cells may produce.

If and when a physician notices that the cancer patient's immune system is weakening from toxic chemical or radiation treatments, they stop the treatments. The importance of having a strong immune system is truly acknowledged and respected by the entire western medical industry. Please keep that in mind. The importance of having a strong, healthy immune system is not some "alternative medicine hype".

Your immune system is built within your digestive tract. Please remember that simple fact. From birth to death, your digestive system plays the most important role for your survival. Anything that can damage the way food product is handled within your digestive tract can easily damage your entire body's balance necessary for survival.

Although we can survive and adapt to nearly any diet and our system can manage to take what it needs from almost anything we ingest, we can make life easier if we at least attempt to eat with some sensibility and moderation. A "well rounded diet" consisting of fruits, vegetables, meat, fish and foul, is best under most all circumstances, but we can do well eating whatever we like as long as the diet contains the variables that provide the vitamins, minerals, nutrients, enzymes and bacteria that we require. Eating a variation of things can be of great benefit! We don't have to subscribe to a strict diet of any sort to be healthy, if we just eat a lot of different things daily. It's when we limit our diet to include or exempt a few specific food products (just veggies, no meat, no fat, no dairy), that we can run into problems. "Well rounded", variation, and moderation is the key!

So finding out that there's a cell inside you, that after being damaged beyond repair and left unable to hear any instructions has decided to "go it alone", continuing it's life using a totally different support system has shaken your ground. It's disturbing to find out that there's a cell inside you, that unless stopped, can grow and take over your insides, perhaps eventually killing you. It's a scary concept, isn't it? Very scary.

Knowing that presently the only means to properly identify and isolate that specific defective cell can only be accomplished by your own immune system doesn't remove the "scary factor". If your system isn't doing what it should to protect you, and it's seriously the only thing that can protect you, what chance do you have for survival?

Ok..... now for the "upbeat" part....

The immune system can become sensitized; it can suddenly learn that something is good or bad. You develop an allergy after having become sensitized to a specific chemical. Your body recognizes the product and reacts to it. It's like when I see my neighbor and my hair follicles rise. Seriously, the sensitizing of the immune system is important. It can happen intentionally or simply through the course of life. You get the measles once, you don't get it a second time.

The industry is experimenting with the concept. It's called "immunotherapy". It's like the Salk Vaccine, where you teach the immune system about some of the properties of the target you want it to eliminate. "If they are carrying this flag, wearing this uniform, shoot at it". Simple concept that works.

When anything dies, it ejects most of the waste inside it. A human body will defecate, urinate, or otherwise expulse it's contents as the muscles expire. A cell will release it's waste as it expires. It has been well noted that there is a rapid rise in CEA numbers when a cancer tumor dies. And....... the immune system can become sensitized to the expulsion of the specific chemicals from the dead/dying cancer cell and often continue to seek out and destroy any cell with those properties. They often refer to that phenomena as spontaneous remission . And of course, it is the basis for "immunotherapy".

And again, the bottom line is that a healthy working immune system is a requirement if it is to be expected to use the immune system to do the battle.

Chemical therapy (chemo) and radiation treatments damage the immune system. There is no doubt or argument against that concept. The "industry" warns of the damage, but insists that the good benefits should be weighed against the bad. It's unfortunate that a 2% advantage of using chemotherapy is argued as being a good advantage, when the ramifications and long term side effects can be more debilitating than the cancer itself, and even causing cancer as a "side effect". But the industry has little else to offer....

The industry (of late) has recognized that the use of less chemicals (chemo) and for shorter durations can often be more beneficial, especially when setting off the "spontaneous remission" effects. With the immune system left healthy and now sensitized to what it should be sensitized to, it can continue to fight and remove those defective cells on it's own, they way it was originally intended to do.

So what to do when you find your have these stupid cells inside you?

First: Do not panic. It took time for the cancer to grow and you have some time to consider all the possibilities and options.

The surgical removal of any tumors are a must. Opting to use other than surgery to save oneself from having an ostomy is foolish. It is most important to surgically get rid of the tumor. Chemicals will not take out what the surgeon can take out. Radiation radiates and it destroys. Both cause cancer because both damages cells (see the beginning of this diatribe).

Listen carefully to your physicians. Your lead physician should be a reputable colorectal surgeon. Oncologists use chemicals and radiation; it's what they get paid for. You should have a reputable gastroenterologist also, and in contact with your colorectal  surgeon. Together, that team should be able to  recommend the best course for immediate action. How you decide to resolve cancer beyond the surgical removal of it, it entirely up to you. You have plenty of options. You are not confined to chemical or radiation therapy and you should not allow yourself to feel confined to that.

Someone here made a statement I see too often:
"I would love to find alternative routes to this, but I want to fight the cancer too.    Some have also died while trying to use alternative methods and refusing chemo."

More have died using chemo and radiation. It's a silly analogy. If you were to read at the Oncologist's Journals (on line) you would find that many oncologists are very unhappy with the present and ongoing lack of progress with treatments. There is little marked advantage using the present treatments. The statistics haven't changed. And as a fairly recent study (Scandinavian) indicated, cancer victims are not living longer,  they are just being diagnosed sooner. There is some progress using the "new" immunotherapy schemes, but it is slow coming. Quite surprising, is that the Asian community (TCM) had been using the ideology for thousands of years successfully....

You have options and ways to fight cancer. Your main objective should be to have any tumor surgically removed. There is new technology that allows ablation, radio frequency, and even sub-freezing compounds to be physically injected into a tumor to destroy it; this falls under the "surgical removal" category. Many oncologists defer to either chemical or radiation rather than "surgery", and my reasoning for you to have colorectal surgeons and gastroenterologists on your team as first choice references.

Do not fear your future. Do not allow fear to guide you. Do not allow any physician to attempt to use fear mongering tactics to convince you of the path you decide to follow. Rely on your instincts for survival, you have been gifted that at birth and they are very seldom wrong. You were intended to live and to remain alive; listen to your own directions, not someone else's.

You will do OK. Just take your time and learn as much as you can.

My best wishes for you,

John

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Well said John, as usual. Houdini, welcome, sorry you're here. All I can add to any of this is to try not to worry too much. Sounds like such a platitude but it's true. It gets easier but there are always bad days or bad periods of time. Come on the forum and tell us what's bothering you and we'll all know exactly how you're feeling and we understand when most other people can't.

Jan

 

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