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Dark days. Need Hope

MissMigi
Posts: 8
Joined: Jun 2015

As the main caregiver to my long time partner, this disease and its horrors are starting to consume me. Seeing the man I have known  and loved for so long detiriorate so quickly is breaking my heart. My wonderful and corageous man was diagnosed 2 1/2 months ago with stage 4 colorectal cancer with spread to peritonneal cavity. After 4 rounds of folfox he had a bad episode of bleeding. Tests showed that it was a really bad chrons flare up and also that the chemo didnt work at all. The masses have gotten bigger and there are more now. Oncologist sent for another biopsy and will test for KRES AND BRAF mutations. He is currently on a chemo break and on high dose remicade and prednisone to control the chrons so he can start chemo again. Oncologist mentioned Folfiri and some other drugs whose names I cant remember. She said surgery right now is not an option as he is too weak from the cancer and she fears he would not survive a major colon resection and cytoreduction. I am scared. He says he will fight and win. He is sure cancer wont beat him. But he also cries at how weak he is and how shitty he feels on a daily basis. 

All this to say that I need some hope. Has anyone ever found themselves in such dire a situation and lived to tell the tale? All and any survivors please come out and share. Now more than ever I need a reason to hope that the love of my life and best friend still has a fighting chance.

Trubrit's picture
Trubrit
Posts: 5006
Joined: Jan 2013

Everyone has a fighting chance while they still have fight in them. 

We do have several here, who have fought hard over many years. They will post, but not always every day, so be patient and they will come and share thier story, and give you hope. 

It breaks my heart to read your pain in this post. It is not an easy task, being the caregiver to someone you love so dearly. Indeed, I think it is harder than the patient with the Cancer. Harder emotionally, especially. 

I send my soul with all the good vibes and prayers it can muster. 

Stay strong. 

Sue - Trubrit

 

skeets1961
Posts: 56
Joined: Dec 2014

I just wanted to let you know i'm pretty much in your position (except my DH doesn't have chrohns).  Sending hope and hugs your way and praying for strength.

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

A brief comment...

I took a totally different route. You can click on my name and read my profile and the "blog" section for more info.

There are no guarantees with any treatment, but what makes on sick isn't necessarily the best choice; there are other options.

Crohn's and Colitis are both immune system problems, and the immune system is built in the digestive tract. Harsh chemicals take a toll on our digestive tract and play hell with our immune system.

Your partner would do better by doing two things:
1. Get other opinions from colorectal surgeons that are not part of the same group or organization as your present physicians. You require other professional opinions regarding care and treatment. There can be an entire world of difference in what course life takes, depending on the physicians involved. Do that now, while there's still time.

2. Find "other ways" to build the immune system back up. My "blog" can provide some insight. There are other modalities to make use of that can be of great benefit,m in spite of the damage any harsh treatments may be doing.

I hate to see people suffer; it takes a chunk of my heart out just reading on the forum how much one can suffer. So many try to reason that one has to suffer and fight the treatments to get well.....

Please help your partner get other professional opinions as soon as you can. It really is that important!

My best to you both,

John

janderson1964
Posts: 2215
Joined: Oct 2011

Read my post above "Surprisingly good scan results". In two months I will be a 10 year stage IV survivor and have faced pretty dire situations several times. Especially in the past 1 1/2 years but seem to keep bounching back. Ive been to Hell and back several times and looked the grim reaper in the eyes and refused to let him take me.

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

I hope these two stories help.

Last December I had a blood clot that went to my lung. I had five cardiac arrests as well as some other crap such as a stroke, kidney failure and a coma. I was later told my odds of survival were one in a thousand. The main ICU doctor discussed not reviving me with my husband and daughter but they insisted. And I made it. Two doctors in the ICU later told me I'd had a miracle and one said there was no medical reason for my survival. And my stage III cancer so far has not returned. It's just over a year for me but I'm still happy with that.

I've told this before on here but I'll tell it again in case it helps. My grandmother had colon cancer in the 1950's when she was in her fifties. Surgery only, no chemo as it wasn't available at that time. She lived until her early eighties and did not die of cancer.

Always try to be positive. Miracles happen every day and every cancer patient's journey is different so you can't look up stats or hear about someone with the same cancer and expect the same results. It's so scary but there is plenty of technology to help us and sometimes not using it is just as good. Our bodies can do incredible things.

Keep looking up!

Jan

MissMigi
Posts: 8
Joined: Jun 2015

Amazing! Your story gives me so much hope and comfort, and I'm so glad you made it through all that and can now enjoy a cancer free life.  We know we pretty much need a miracle right now and like you said, miracles can and do happen. Maybe we will beat the odds. I stopped looking at statistics online because they sent me on a tailspin and freaked me out so much. 

MissMigi
Posts: 8
Joined: Jun 2015

Janderson,

I read your post and that is amazing news! It is also so amazing to hear that you are still here 10yrs out of original diagnosis. It gives me so much hope. I hope my love and I will one day be able to say that we beat fhe ofds as well.

MissMigi
Posts: 8
Joined: Jun 2015

Thank you so much for the support. We saw the onclogist today and she is mentioning starting Folfiri plus wither Erbitux or Vectibix if he shows to have the KRAS mutation. If he has the BRAF mutation then it will be very grimm and pretty much hopeless. All our thoughts and faith are on that he will not test positive for BRAF mutation. 

His Chrons is pretty under control and his bloodwork looks close to normal. The CT scan showed that the cancer has progressed to the liver where there are now a couple of small spots. 

Did I mention we live in Canada? We are being treated at the biggest cancer centre here and one of the top 5 cancer research places in the world. Yet, America seems to be more advanzed on their treatment options. We are seriously considering getting a second mortage and spending it all at one of the cancer centres in America. I asked about a drug that is currently being used in Europe and tried in America that reverses peritoneal ascites regardless of how advanced the disease is. And our oncologist had NO IDEA what I was talking about. Its disheartening to say the least. 

I guess we just have to keep going. My love is so completely adamant that he will beat this that it gives me strenght. I feel selfish for even allowing myself to feel like this. It is he who needs all the support and reassurance, and yet here I am crying and popping xanax to try and get through the day. 

Also, has anyone had any experience with cannabis oil, vitamic c and fermented wheat germ?? We started seeing a naturopath and have just started all of the above. We will add PSP and PSK mushrooms later to the convo. 

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

MissMigi, by any chance are you going to the Tom Baker? I'm in Canada as well and that's where I go.

MissMigi
Posts: 8
Joined: Jun 2015

No, we are being treated at Princess Margaret. Is Tom Baker out west?? 

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

Yes, we live near Calgary.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

There are people on here who have survived for close to two decades with stage IV.  As Phil said to me, cancer doesn't have to mean a death sentence.  I'm really surprised that the cancer was caught only 2 months ago.  How did it get missed all those years, with Chrons there must have been scans?  Sometimes life throws you a serious curve ball=(  You guys are in my thoughts.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

If you come to America I would say MSK in New York and MD Anderson in Texas are our 2 top cancer centers. Just my opinion. I'm stage 4 and beating it now, it can be done.

Easyflip/Richard

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