Hi. I 'm new
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.
Comments
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Chelsea
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 Marie0 -
hello and welcomeherdizziness said:Chelsea
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
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....
maggie0 -
Hi Chelseamaglets said:hello and welcome
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
Wishing you the
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.
Hugs0 -
Hi Chelseamaglets said:hello and welcome
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
Wishing you the
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.
Hugs0 -
Chelsea71
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....0 -
this is my first posthippiechicks said:Chelsea71
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....
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?0 -
Welcome and we are sending
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, mike0 -
Welcome Roalice! Yes, youroalice said:this is my first post
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?
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 Protein0 -
MCProalice said:this is my first post
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?
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 ?????0 -
Welcome to the forum, Chelsea!
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 Alexandria0 -
I have Stage 4 mCRC with
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).
Tedd0 -
Thanks for the responsetachilders said:I have Stage 4 mCRC with
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
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,
Chelsea0 -
Chelsea I was wondering wasChelsea71 said:Thanks for the response
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
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??0 -
Hipecsmokeyjoe said:Chelsea I was wondering was
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??
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 helps0
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