Newly Diagnosed, Colon, Liver Lungs
We are new to the forum. Here is a little history.
My wife is 61 and pretty healthy. She is a type 2 diabetic but has her diabetes mostly controlled with metformin and diet. Her A1C was 6.0 during her last blood work. She is physically very active.
She began having some pain in her right side which grew in intensity over a month or so. After several doctor visits she had an ultrasound of her right side. They found five lesions on her liver. Her PCP ordered an MRI which resulted in the discover of about ten lesions. Everything else in the scan area appeared clear.
She was referred to an oncologist who ordered a CT scan with dye as well as a biopsy. The biopsy revealed Adenocarcinoma. The scan showed thickening of the colon wall and some lesions in her lungs. Although it was never stated it sounds like stage 4.
Our treatment will be Chemotherapy with Folfox. We anticipate getting a port next week and Chemo to begin the following week. There will be six rounds of treatments every other week with blood work and a CT scan after the six treatments to determine how things are going.
The Oncologist is pretty matter of fact, no nonsense, and is on top of everything. He has assured us that this is a tried-and-true treatment for this type of cancer and that they have a great deal of experience with it. We trust him and have a great deal of confidence in him.
I’m on the learning curve here and reading as much as I can to learn about this. I read his after-meeting report and saw “palliative” and my heart sank. From what I gather they are treating all of the areas at once with the intent to reduce the tumors and improve life rather than “cure” the cancer.
I want to get another opinion, not because I lack confidence in our Oncologist, but to see what other opinions are out there. We want to treat and defeat this cancer!
We are in Central Massachusetts and in the center of some great hospitals, including the one that will be treating my wife.
In doing some networking we learned of some very highly recommended oncologist at Boston General Hospital. The terms “world class” and “best in the world” were used in connection with them and from a highly respected and reliable source.
Lehey Hospital and University of Massachusetts Hospital is in our insurance network.
Dana-Faber Cancer Institute, is nearby. There are actually quite a number of well-respected hospitals.
We are looking at Cancer Centers of America and got a tip for Block Center in Chicago from a thread on this forum. My wife’s passion is healing with herbs and such and she is really tuned in to a holistic approach in conjunction with traditional medicine.
If anyone has any advice or experience about any of these treatment centers, any others in the greater Boston area, or any other national cancer centers please let me know here or by message. We want to make sure that we are taking the best approach to not only treat the symptoms but cure this cancer.
We are as shocked, scared, and overwhelmed as all of you were when you got your baptism by fire in this world of cancer. We are all ears and eager to learn.
Thank you everyone in advance for your time, attention, interest, and responses.
Dan
Comments
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Hello Dan, and welcome
We are always sorry to gain another member of the forum.
I cannot help you with info on Cancer care out east, as I am on the other side of the states. We do have several members who are 'your way' and I know they will be on board to help in any way they can.
It sounds like your wife jumped into the Cancer world with both feet; and yes, Stage IV will be her diagnoisis, seeing that the Cancer has spread.
While it is good to research online, sometimes it can get overwhelming, and often there is conflicting information. Don't put much store in everything you read. Balance it out with what you are hearing at appointments and of course, our wonderful, wise and friendly family here on the forum.
Also, don't be scared by palative care. We have several members who are on palative care, and have been for years. While it is no fun to be on the old chemo for life, you can actually live a fullfilling life. I can think of a few here who are doing really well, considering their prognosis. I won't name names, but hope they chime in themselves.
The port, when place right, is a wonderful thing. Saves those veins from allot of harsh treatment. Just an idea here. Maybe before your wife goes in - if they don't offer - talk about where the port will be placed. Mine was right under my bra strap, and it was terribly uncomfortable. Once I went braless, I barely knew it was there - it is a bit like a little alien under the skin, a very interesting little thing.
FOLFOX can be hard on the body. Some folks breeze through it, but be prepared for some rough days ahead. I kept a notebook with every single side effect I experienced, and talked about each one when I went in for my infusions. Notebooks are great!
I don't know how much you know about FOLFOX, but there are some standard side effects that are usually experienced right off the bat, one being sensitivity to cold. Cold drink. Cold knife and fork. Cold refrigerator. Cold anything. I kept a pair of gloves by the fridge after too many dropped yogurt cartons - what a mess to clean up.
I do think a second opinon is always good, no matter how much you love your Oncologist.
I wish your wife all the best as she moves forward into treatment. I wish you all the best, as Cancer is a family diagnosis. It sounds like she has a wonderful husband by her side and that will serve her well.
Tru
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You are on the right track!
You are on the right track!
Don't take surgery advice from an oncologist and visa versa. Have you had a surgery consult yet for the colon/liver/lungs? If not, find the ones within the specialty of CRC, board certified, to get their take about the possiblilties down the road. What do they need to see in bloodwork and on scans to be a condidate is one big question.
Go after the cancer with everything available, western and eastern. I researched Block also but went a different route. They have a great reputation so Yes pursue the option.
LifeExtension.org is a fantastic start for information also on cancer. The Moss Report is also informative.
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Welcome
Welcome to you and your wife and sorry that you have to join our group. There is nothing wrong with getting a second opinion, and it is often encouraged for you to do so. This will also confirm what the doctor has diagnosed so far and give you peace of mind that you aren't going to second guess your current doctor. I'm not able to give you any information on the hospitals you have listed, but I've heard of most of them.
Each doctor will approach a patient differently based on how treatment is going and their circumstances. While there are people on this board that has had similar situations with your wife, I'm not able to help you with the treatment that she might be going through.
Please stay off the internet for any information regarding cures, and treatments. A lot of the information on the internet is outdated and shouldn't be used for medical advice.
Please don't hesitate to come back on the board after your wife has started her treatment to ask any questions. We are a caring group that can help you both in this rollercoaster of life you will soon experience.
Wishing your wife the best going forward.
Kim
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Tumor board
Hello,
I am sorry for the diagnosis of your wife. Cancer is harsh. My dad is the one with stage 4 colon cancer so I know how terrifying it is.
It was mentioned already and even after a year I still have this problem: google is not your friend. You will find 20 bad studies until you find one you like. So dont do that. Your wife is not a study.
What I would recommend is a tumor board. My dad is treated in one and it works fine. A tumor board consists of radiologist, internal doctors, surgeons, oncologist, etc. They meet once a week and update and discuss the treatment. My dads oncologist was up to date after he had not seen my dad for 3 months. He knew how the surgeries were, bloodwork, recent scans. Yes they are at a specified colon cancer in Germany, so they are under one roof but cancer is a disease with many faces and it is good if all doctors are up to date, knew what happened etc. I only have good experience with it, my dad feels in good hands there.
It is good to have doctors letters etc for your own if you want a 2nd opinion.
Tueffel
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Current Plan
Our current plan is just Chemo. I asked about other options and he mentioned other chemo options. Maybe he thought that we weren't ready for the raw reality... The tumor board sounds like a good plan. I think I might get that other than where we are currently, unless he hasn't shared that with us yet. Maybe one step at a time...
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Dana-Faber, MSK, YaleDanNH said:Cancer Centers of America
I messaged Cancer Centers of America. They were very nice but my insurance was not contracted with them so it was a no go. They gave me Colon Cancer Alliance and Cancer.gov as references.
Dana-Faber is highly regard. Yale and Memorial Sloan Kettering are also relatviely close, if you are looking at some of the cancer specialists that are highly rated and relatively close.
Also if you go to grandrounds.com you can get remote second opinions. They handle everything, gathering documents and getting reports.
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So sorry you are here. You
So sorry you are here. You can read my short story but stage 4 guy here dx almost 15 yers ago now. I had liver and lung mets. I agree with all written so far. I wanted to be as aggressive as possible. I always took surgery when possible. I have had 4 thoracic surgeries along with liver and colon. In between chemo. But I am here today and doing well with 6 years clean so far.I went to Stanford on the west coast. I always felt better when I felt bad as it seemed to me that the chemo was working. That might not make sense but I had a discussion one day with my onc and the possible unknown side effects of vitamin or herbal interactions with chemo. If ginger tea made me feel better maybe it was interfering with the chemo? The disease is so unfair and unpredictable. For what its worth here's what I thought and did, It is a marathon not a sprint, the internet is not always your friend, confidence matters, eat healthy, walk, took a baby aspirin when I was allowed, scheduled surgery, take care of yourself and people around you - caregivers matter, eliminate as much stress as possible ( for me social media),if you are religious that helped me, There are many more people out there than you think who have gone through all of this and are doing great. All my best.
Chip
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I'm sorry, as well that you
I'm sorry, as well that you and your wife are on this path we share here, but here is good place to share it with, and many of these folks has learned so much. They've brought you more than I could tell you, as another ''west coaster'', but I noted you mentioning your wife taking Metformin regularly, as a diabetic. We had some folks, years back, swearing that Metformin was useful in preventing CRC or it's recurrence, and I never heard a definitive answer to that ''magic bullet'', until reading your story. Even with all the well-read and science-based folks here, some of us still get excited at the idea of some new or old rediscovered, repurposed compound that will kill or stop cancer in it's tracks. Hope can be unbridled and contagious at times. Keeping it all in context, I hope your wife has an excellent response to the Folfox, and minimal discomfort, as I did during my chemo. Cold was annoying, cold water felt like an electric shock on my hands, but hotter weather took the energy right out of me, while working as a contractor. Still I got through it better than most, and I hope she will too. Getting to a ''new normal'' takes time, but as is said, this is a marathon your on, try to stay in the now, the moment and get what you can out of each ''now''. We took scenic drives after appts., found new places to eat, did things on a lark, as we could. You plan your moves, lay out the path you'll take, but live in the present, the biggest thing I learned here. **** luck to you both...............................................Dave
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First time I've seen the wordbeaumontdave said:I'm sorry, as well that you
I'm sorry, as well that you and your wife are on this path we share here, but here is good place to share it with, and many of these folks has learned so much. They've brought you more than I could tell you, as another ''west coaster'', but I noted you mentioning your wife taking Metformin regularly, as a diabetic. We had some folks, years back, swearing that Metformin was useful in preventing CRC or it's recurrence, and I never heard a definitive answer to that ''magic bullet'', until reading your story. Even with all the well-read and science-based folks here, some of us still get excited at the idea of some new or old rediscovered, repurposed compound that will kill or stop cancer in it's tracks. Hope can be unbridled and contagious at times. Keeping it all in context, I hope your wife has an excellent response to the Folfox, and minimal discomfort, as I did during my chemo. Cold was annoying, cold water felt like an electric shock on my hands, but hotter weather took the energy right out of me, while working as a contractor. Still I got through it better than most, and I hope she will too. Getting to a ''new normal'' takes time, but as is said, this is a marathon your on, try to stay in the now, the moment and get what you can out of each ''now''. We took scenic drives after appts., found new places to eat, did things on a lark, as we could. You plan your moves, lay out the path you'll take, but live in the present, the biggest thing I learned here. **** luck to you both...............................................Dave
First time I've seen the word ''good'' deleted here. I'll try to watch my language more closely, lol!
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Goodbeaumontdave said:First time I've seen the word
First time I've seen the word ''good'' deleted here. I'll try to watch my language more closely, lol!
Why did good get deleted? I wonder if I type a "bad" word, if that will stay visible.
How funny!
Tru
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Current Appointments
We have had two weeks of delays due to scheduling. The CT scan was delayed. It didn't get scheduled until my wife called the office and told the receptionist that the scan was for a possible cancer diagnosis and and time was of the essence. The woman solved the problem and got the issue through to the insurance office. I don't' know if the holdup was in the Oncologist office or the insurance company. I SUSPECT that the e-mail got lost in someones in box for a week. My head was ready to explode!
Following the appointment with the Oncologis, he ordered a port and chemo. Well, the chemo office called to schedule the treatment and the port had not been done yet. The woman became very upset and made a few calls. We got a call from a cold scheduler who scheduled it for next Wednesday. The Chemo is now scheduled for the following Tuesday. By right, she should have had her first treatement this week! And on top of it, the nurses are supposed to go on strike the day preceding her first treatment!
In the mean time, she is getting tired, loosing weight, and has a limited appetite. It is all very frightening to me. I am trying to manage her meals and will start on supporting her full time tomorrow. I am on a leave of absence from work, essentially. I don't know what to expect so I have put my work on hold until I figure it out and can either go back to finish my career or retire earlier.
Tomorrow we have an appointment with her PCP and I am going to ask for a referal to another hospital for a second opinion.
We made an appointmet with a Doc who practices Intergrated Oncology Support. We have the first appointment the day after her pump is removed following her first treatement. There is another holistic Doc who lives in our town and supports cancer patients as well. We have a call in to her for an appointment.
A friend set us up with a little organic pasture raised poultry and beef. I am trying to move away from feed lot food to pastured or silage fed from here in New England.
The outpouring of support from friends, family, my co-workers, employer, and the community is astounding! We spent our lives as people who help and support others in their time of need. It is a difficult thing to suddenly be on the other side of that equation.
All of the input from everyone is more helpful than I can express. The past few weeks I have spent every day on the edge of anguish. Distractions help for a little while but then the reality that seems like a bad dream come ripping back into focus.
Thank-you for letting me vent!
Dan
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Tumor BoardTueffel said:Tumor board
Hello,
I am sorry for the diagnosis of your wife. Cancer is harsh. My dad is the one with stage 4 colon cancer so I know how terrifying it is.
It was mentioned already and even after a year I still have this problem: google is not your friend. You will find 20 bad studies until you find one you like. So dont do that. Your wife is not a study.
What I would recommend is a tumor board. My dad is treated in one and it works fine. A tumor board consists of radiologist, internal doctors, surgeons, oncologist, etc. They meet once a week and update and discuss the treatment. My dads oncologist was up to date after he had not seen my dad for 3 months. He knew how the surgeries were, bloodwork, recent scans. Yes they are at a specified colon cancer in Germany, so they are under one roof but cancer is a disease with many faces and it is good if all doctors are up to date, knew what happened etc. I only have good experience with it, my dad feels in good hands there.
It is good to have doctors letters etc for your own if you want a 2nd opinion.
Tueffel
Tueffel:
We met with my wife's PCP last week and this came up as part of the discussion. She explained that each case was an individual one which the Oncologist brought up to a board made up of others who practiced Oncology in different disciplines - surgery, radiology, etc. They discuss the case from their prospective and come up with a treatment plan. So, unknow to me, there was in place the very board you spoke of. That really brought me some peace of mind and thank-you for mentioning it.
Dan
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First Chemo Hiccup...
Today is first chemo day. The next time she has chemo will also be first chemo day. The port they put in last week isn't working. We left the infusion center and I brought her over to see the surgeon who is sending her for an MRI with dye to see what the issue is. If they do enough of these it must happen from time to time. We have appointments every day this week and two next week. It is going to throw everything off schedule and she still hasn't had any treatments. Did I mention that there is also a nurses strike and today is the first day? It seems like a commedy of errors today...
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How frustrating!
And I know that you think that is an understatement.
I remember the first time my chemo was postponed. I thought I was going to die, literally.
Every little set-back hurts the phyche. I think we have all been there, and feel the pain you are both feeling now.
Yes, sometimes those ports do not do what they should. Others on the forum have experienced port troubles, and an share. I was blessed to have a working port all the way through treatment.
I'm also sorry to hear of the nurse's strike. While I am sympatetic to there needs, it is hard to be on the wrong end of the dispute.
Thank you for the update. May the next one be on a more positive note. We are all here for you.
Tru
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Follow on appointmentsyy
We have a second opinion at Mass General tomorrow and a holistic Oncologist Friday... provided we don't have surgery on Thursday instead... Our current Oncologist is very competent and I have great confidence in him. The nursing staff is wonderful. It's just a huge let down and very stressful!
Speaking of stress, our Chiropractor turned us on to a stress reducation technique called EFT Tapping. I found a short video on YouTube and we tried it. As ridiculous as it sounds it brought our stress level from a 7 to a 3 in just a few minutes. My wife got pretty worked up today. She is very stoic but it took its toll on her. I found the YouTube video, plugged in her ear phones and handed her her smartphone. Within a few minutes she went from an 8 to a 3! Just a for what it's worth tip.
Still waiting on her MRI. I think no chemo today. It's 3:15 pm...
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Agree with the tumor boardTueffel said:Tumor board
Hello,
I am sorry for the diagnosis of your wife. Cancer is harsh. My dad is the one with stage 4 colon cancer so I know how terrifying it is.
It was mentioned already and even after a year I still have this problem: google is not your friend. You will find 20 bad studies until you find one you like. So dont do that. Your wife is not a study.
What I would recommend is a tumor board. My dad is treated in one and it works fine. A tumor board consists of radiologist, internal doctors, surgeons, oncologist, etc. They meet once a week and update and discuss the treatment. My dads oncologist was up to date after he had not seen my dad for 3 months. He knew how the surgeries were, bloodwork, recent scans. Yes they are at a specified colon cancer in Germany, so they are under one roof but cancer is a disease with many faces and it is good if all doctors are up to date, knew what happened etc. I only have good experience with it, my dad feels in good hands there.
It is good to have doctors letters etc for your own if you want a 2nd opinion.
Tueffel
Knowing that there was a TEAM of specialists that would review my scans, etc and agree on the best course of treatment for my particular situation helped me feel so much more confident of the road I was getting ready to go on.
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Hi Dan, welcome to the group.DanNH said:Follow on appointmentsyy
We have a second opinion at Mass General tomorrow and a holistic Oncologist Friday... provided we don't have surgery on Thursday instead... Our current Oncologist is very competent and I have great confidence in him. The nursing staff is wonderful. It's just a huge let down and very stressful!
Speaking of stress, our Chiropractor turned us on to a stress reducation technique called EFT Tapping. I found a short video on YouTube and we tried it. As ridiculous as it sounds it brought our stress level from a 7 to a 3 in just a few minutes. My wife got pretty worked up today. She is very stoic but it took its toll on her. I found the YouTube video, plugged in her ear phones and handed her her smartphone. Within a few minutes she went from an 8 to a 3! Just a for what it's worth tip.
Still waiting on her MRI. I think no chemo today. It's 3:15 pm...
Hi Dan, welcome to the group. I have a friend in the Boston area that has, unfortunately, battled cancer more than once. She highly recommends the Dana Faber institute as well as Sloan Kettering.
As it relates to your prior post regarding food sources, my oncologist was very clear with me on what should/should not be a part of my diet after I was diagnosed in August 2020 with stage 4 rectal cancer at age 49. His guidance was to limit (or avoid) red meat. Basically eat poultry or fish for the most part. And - news to me - anything with four legs is considered red meat. Go with two legs or no legs ?. He also said to eat "clean", avoiding highly processed foods. At the time, I was a Diet Coke junkie and he told me not to drink it - quit cold turkey the day before I started my chemo. Also, try to get your wife her nutrients and vitamins from foods and not supplements whenever possible.
I did 8 rounds of FOLFOX with Leucovorin and then six weeks of radiation with oral chemotherapy. Finished that up mid-February and am now on hiatus while my body recovers from the chemo and radiation before I head to surgery in mid-May. It's been a long road, but I keep telling myself it will all be worth it.
Prayers for your wife's healing.
Jenn0 -
Thanks JennKaleidoscope49 said:Hi Dan, welcome to the group.
Hi Dan, welcome to the group. I have a friend in the Boston area that has, unfortunately, battled cancer more than once. She highly recommends the Dana Faber institute as well as Sloan Kettering.
As it relates to your prior post regarding food sources, my oncologist was very clear with me on what should/should not be a part of my diet after I was diagnosed in August 2020 with stage 4 rectal cancer at age 49. His guidance was to limit (or avoid) red meat. Basically eat poultry or fish for the most part. And - news to me - anything with four legs is considered red meat. Go with two legs or no legs ?. He also said to eat "clean", avoiding highly processed foods. At the time, I was a Diet Coke junkie and he told me not to drink it - quit cold turkey the day before I started my chemo. Also, try to get your wife her nutrients and vitamins from foods and not supplements whenever possible.
I did 8 rounds of FOLFOX with Leucovorin and then six weeks of radiation with oral chemotherapy. Finished that up mid-February and am now on hiatus while my body recovers from the chemo and radiation before I head to surgery in mid-May. It's been a long road, but I keep telling myself it will all be worth it.
Prayers for your wife's healing.
JennI appreciate your response. We will be getting a diet from our holsitic oncologist hopefully Friday, provided there isn't some other problem that rises up out of nowhere. Waiting for a COVID test appointment that won't interfere with our second opinion appointment this afternoon. The Doctor is affiliated with Dana-Farber. Just got the call and heading out now.
Dan
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