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Chelsea71
Posts: 1170
Joined: Sep 2012

My husband, Steve, and I live in Ontario. He was diagnosed with ulcerative colitis in 1999. He was quite sick off and on throughout the years. Despite regular scopes, he was diagnosed with stage 4 colorectal in June 2011. Even though the cancer was in the sigmoid colon, the entire colon was removed because of the UC. He has a permanent ileostomy. Mets to the peritoneal cavity. Lungs and liver appeared fine. He adjusted well to the ileostomy (no choice but to accept it) and did 13 rounds of folfiri with Avastin at Ottawa General. His oncologist reluctantly referred him to Maisonneuve Rosemont Hospital in Montreal to be assessed for Hipec. The oncologist knew very little of the surgery, just that it was dangerous. She advised against it. The surgeon in Montreal was Dr. Lucas Sideris and we love him. Very positive. Said approximately 50% chance of a cure, depending on the lymph node status. Even though Steve's cancer was contained to the abdominal cavity, we first learned of Hipec from the evening news. Isn't that interesting?! Steve had surgery on April 13, 2012. Surgery took 8 hrs. Dr Sideris said he treated him very aggressively. Music to our ears. They removed the spleen, tail of the pancreas, 10 cm of small intestine, some abdominal wall and many lymph nodes. They also burned the outer layer of the liver and removed a small part of disease on the stoma. He was in the hospital for two weeks. No complications. Very tired for 8 weeks then back to normal. Lost 25 lbs. The pathology report sounded really positive. No lymph node involvement, only surface cancer. Life seemed great. It was as though a dark cloud had been lifted. We took a nice trip to Boston and got on with our lives. Sept 13, 2012 we met with the surgeon to discuss the result of the fort scan since the surgery (taken two weeks prior to this app). The dark cloud returned. Abdominal cavity looked fine, however, there appeared to be 6 or 7 small lesions in the liver. Dr Sideris seemed as disappointed as we were. I suspect that there had been "seedlings" in the liver prior to surgery but were likely too small to show up on the pet or ct scan. The doctor recommended we skip the biopsy and start asap back on chemo. He says the biopsy will lose us valuable time. He says that depending on how the chemo goes, Steve should be assessed by a liver surgeon to see if resection is a possibility. He will send these recommendations to the regular onc in Ottawa. He tried to be very positive. Told us of the many successes people have had with managing the cancer as a chronic disease etc.. He also pointed out that during the surgery he could tell by the appearance of the tumors that the systemic chemo had been working on them (despite the peritoneal blood barrier). For this reason, he feels that the new round of systemic chemo has an 80% chance of being affective with the tumors in the liver (they love to use percentages!). I must be in denial because I keep focusing on what elso these tiny specs could be besides cancer. He has been in the business a long time and I'm sure he would't be recommending chemo if he wasn't quite certain. Anyways, we meet with the Ottawa oncologist Wed the 26. I'm expecting to hear, "I told you so." It would have been nice to get more of a break before starting round two. Oh well, we'll take what we get.

Right from the beginning, my husband has coped exceptionally well with this diagnosis. He lives one day at a time and does give cancer a great deal of thought. He has many hobbies and interests that keep him busy. It is much more of a struggle for me. The disease is on my mind almost constantly. I'm distracted while at work. I'm constantly doing research to look for ways to fix this problem. I feel consumed by this situation. I realize that I need to find a way to start enjoying life again. I guess it's easier said than done.

Anyhow, that is our story thus far. The one thing that brings me strength is reading these posts from all you guys and learning about all your challenges. You are exceptionally brave people and I find your stories to be very inspiring.

My husband began taking MCP two days ago. The research I've done suggests it is safe to take it while on chemo. If we mention this to the onc she will likely say to stop. Would it be stupid to just stay quiet about the MCP?

Bye for now.

herdizziness's picture
herdizziness
Posts: 3476
Joined: Apr 2010

It sounds like you and Steve have been through the wringer.
Welcome to posting in the site.
As for the MCP, I see nothing wrong with taking it (although colon cancer doesn't appear to benefit from it, prostate and melanoma maybe), but hiding it from your oncologist doesn't seem the right thing to do, you have to be able to trust the oncologist, they can't treat you right if they don't know what you are doing on the side and if you're keeping secrets from them, whether you think it interferes with their treatment or not. Can you possibly find another oncologist, one that you might have more faith and trust in? And if she says to stop, ask her exactly why, what is the harm? You can always question her and expect her to answer a perfectly legitimate question.
Winter Marie

maglets's picture
maglets
Posts: 2427
Joined: Jun 2006

hello Chelsea and Steve and welcome to the forum. sometimes these first postings are the hardest...but you have made a wonderful start. thank you for your fine detailed post. Winter Marie is right. You two have been through the wringer....really through the wringer

I am the patient and my hubby has been my supporter through 8 long years of fighting and survival. Someone on this forum said recently they do not know if it is harder to be the patient or harder to be the loved on of the cancer patient. i think that is true Chelsea and I sure do not have the answer. I too wish you could let some responsibility go...and realize that you cannot cure Steve by yourself. I am very happy you found us....

I am in Owen Sound and have had my liver resections in London Ontario....

welcome both of you
I hope that you will find this a friendly, helpful supportive place

very best regards....

maggie

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

Hi Chelsea

Wishing you the best in your journey - its devastating to see a loved one go thru this fight - but Steve is lucky to have such a fighter partner -

Keep a lot of faith and trust your onc ... I would run everything by my onc just to make sure its not conflicting with my treatment.

Hugs

jr2012's picture
jr2012
Posts: 67
Joined: Aug 2012

Hi Chelsea

Wishing you the best in your journey - its devastating to see a loved one go thru this fight - but Steve is lucky to have such a fighter partner -

Keep a lot of faith and trust your onc ... I would run everything by my onc just to make sure its not conflicting with my treatment.

Hugs

hippiechicks's picture
hippiechicks
Posts: 363
Joined: Sep 2012

Hi Chelsea

I am also new to the site and so far have found the advise and stories helpful. I was diagnosed stage 3c one year ago today. It was a devistating blow, expecially to my husband. He supported me through all the treatments, came to every one. But, I did find they were harder on him in many ways.

Enjoy every day you have together, truely enjoy it, it is not worth the constant dwelling...it won't change the situation. I struggle with that same advise every day...but it is the only way to survive this journey.

Good luck to you both....

roalice
Posts: 3
Joined: Sep 2012

My name is Rochanah and I am mother of Alice. My 42 year old developmentally disabled daughter--my sweetheart and best friend. I have a million questions and I still have not found how to navigate the site, but will learn, I am sure.

Some of you sound like you have more than one oncologist. this sounds great: we have already seen one, who was willing to give us 1/2 hours and no more. I am going to try to see a second one. Alice get Medicare thank God. Who pays for the second oncologist? I have a hundred questions and need an onc. who can give us a bit more time. I asked him about questions through e-mail, he said : I don't do e-mail. I mentioned turmeric AND he had never heard of turmeric ( I guess he does not cook?).

Oh yes, what is MCP?

thxmiker's picture
thxmiker
Posts: 1252
Joined: Oct 2010

Welcome Roalice! Yes, you have the right to a second and third opinion for Cancer treatment. It is a such a serious disease and many Oncologists do not have the experience or answers for every type of cancer.

The First Oncologist we saw did knew exceptionally little about my Cancer. It is sad that my wife and I in two weeks knew more about current treatments then she did! If we had listened to her I would not be here now.

We found a team of Doctors that have seen my cancer several times and had treated it successfully. Even with their experience, I have had two recurrences.

Best Always, mike

PS MCP - Monocyte Chemoattractant Protein

Chelsea71
Posts: 1170
Joined: Sep 2012

When I mentioned MCP, I was actually referring to modified citrus pectin. I should have been more specific. There seems to be some evidence that it may prevent further tumor formation of metastasis from colon cancer (and other cancers, as well. Prostate, melanoma).

Thank you to all for responding. My husband has an app. With his onc. tomorrow. It is likely to be a difficult day. At least we will get some direction and hopefully develop a good plan.

Roalice, I am a support worker who works with developmentally challenged adults. I can only imagine what a difficult time this is for you and Alice. As for my husbands doctors, he has his regular oncologist who oversees his chemo treatments and his surgical onc who performed the hipec surgery. They sort of work together. (although I am sure the regular onc. would prefer to work alone). However, I am from Canada, therefore, I'm not a good judge as to how the system works in the states. It is crucial to find an onc. that you're comfortable with. Who the heck doesn't know what turmeric is ?????

thxmiker's picture
thxmiker
Posts: 1252
Joined: Oct 2010

Welcome and we are sending thoughts and prayers to you and your husband!

The Big C is a journey we all share and we share information.

I would tell My Oncologist everything I took. Then he could adjust his treatment to me. The Oncologist may ask one to stop a particular mineral or supplement because it interferes with the Chemo, or the Onc may change the Chemo. Just a thought.

Best Always, mike

annalexandria's picture
annalexandria
Posts: 2291
Joined: Oct 2011

Sounds like you and your husband have been through an awful lot. I hope this next round of chemo (and hopefully surgery) will see him back on the road to better health. It can be a long process...it took me 5 surgeries to get to NED (and as you know from my post, that's a little iffier now, but still better than the alternative). I understand your hesitation to ask your oncologist about the MCP. I don't have a great relationship with my doctor, and he never seems to know about any of the alternative options that might be useful. I wonder if your doc would have known what you were referring to if you said curcumin? Tumeric is the more common of the two terms, I think, but you never know...seems weird he wouldn't have ever heard of it, at least in the culinary sense. Keep us posted and tell your husband we're rooting for him! Ann Alexandria

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I have Stage 4 mCRC with mets to liver, lungs, peritoneum, LN, etc... I think it is much harder on my wife than me, as I have no choice but to deal with the cancer, and little time to worry about what's next. We have 6 kids (4-14), so she has a lot to worry about and plan for. To be perfectly honest, I don't really know how long I will be here. My entire focus is on fighting the cancer, keeping my job (so we have health insurance and life insurance) and enjoying every day with friends and family. I've done about all I can at this point wrt life insurance, cause nobody will sell me more now. Best of luck to you and your husband. BTW, I am 46 and was diagnosed in June 2012, but first CT scan (after 5 tx of FOLFOX + Avastin) showed no new tumors, no growth, and significant shrinkage of some tumors).

Tedd

Chelsea71
Posts: 1170
Joined: Sep 2012

Thanks for the response Teddy. Congratulations on your scan. For those who respond well, Avatin keeps many people going for many years. Your attitude sounds a lot like my husbands. He too feels that the cancer is harder on me than him. He says that dealing with it gives him something to do, meanwhile I watch helplessly from the sidelines. I used to think it was elderly people who got colon cancer. 46 seems awfully young to be dealing with all this.

Good luck,
Chelsea

smokeyjoe
Posts: 1428
Joined: Feb 2011

Chelse....sorry I deleted my question as to where your hubby went for the HIPEC...I see it was in Que. Now I have another question .... was the HIPEC covered by O.H.I.P., or did you pay out of pocket for this proceedure.....was it difficult to get in to see this surgeon??

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi

It was all very simple. We learned about hipec from the CTV news. They showed it being done at a hospital in Calgary. They made it sound very promising. At our next app with our oncologist at the Ottawa Hospital, we inquired about the surgery. We asked if she would refer us to this hospital in Calgary. She explained that they also performed hipec in Montreal and she made the referral to Maisonneuve Rosemont Hospital. Apparently they do it at The Jewish Hospital in Montreal, as well. Approximately six weeks after this conversation, a receptionist from Maissonneuve called and we had an app to meet the doctor. This was around Christmas 20011. The surgeon explained that he liked to do the surgery 4 weeks after the patient has finished 13 session of folfox or folfuri. Steve had his surgery in April. It was a very positive experience for us. We really liked the surgeon (he has done this surgery over 250 times. His partner, Dr Pierre Dube was at about 400 surgeries). I stayed at a cancer lodge right beside the hospital. The nursing staff was great. The onc from Ottawa was very hesitant at first but she recognized our desire to pursue every option. She was concerned about the high risk of complications. Steve was her first patient to have this surgery. Now that it is over and It well, she is very pleased that he went ahead with it. Because it is a surgery that it is not offered in Ontario, OHIP covers the cost. They pay for all the tests with the exception of a pet scan. Montreal Hospital did not insist on the pet as they knew we'd have to pay, but we felt better going ahead with it. Quebec, Calgary and Nova Scotia are the only provinces to offer hipec. OHIP will cover the cost in any of these provinces as long as you are referred by you Ontario Onc. Just recently (several months ago), they began doing hipec at a hospital in Toronto, Ontario. They are just getting stated and do only 20 per year. They focus on simple cases and send the more difficult ones to one of the other provinces.

This is likely more info than you bargained for. Hope it helps

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