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A very awkward subject

SimplyMe
Posts: 7
Joined: May 2009

I am so upset, not sure how to handle this. My husband was recently diagnosed with crc with "multiple" liver mets. After tests and the like, he was told that he only has about 2 years to live, and the only thing that can be done is to have chemo every other week until he dies. I of course insisted on a 2nd opinion and got virtually the same answer. I have been reading the wonderful posts on this website, and it has really given me a lot of hope that something can be done, and that this is not necessarily a death sentence for my husband. I have read a lot that says that crc can become a chronic disease versus a fatal disease, but is finding it very difficult to find anyone willing to go the extra mile. We have very good health insurance, and I know that that is one of the first things doctors and hospitals want to know about, but I'm starting to worry that our race may play a part in the quality of care he receives. We are African American and I have read that there is a huge disparity in the quality of health care we receive, but I never thought it was true until now. We live in the south, but in a very progressive state. I am researching other doctors now, and will ask about the different treatments outside of chemo, but including surgery (after mets have shrunk) and possible radiofrequency ablation.

My question is, how do I get the doctors to go the extra mile, and try whatever it takes to help my husband? Is it just a matter of finding the right doctors & facilities, or is racism too ingrained to make a difference?

Needing some honest answers,

Rose

jillpls's picture
jillpls
Posts: 241
Joined: Mar 2008

HI
I've heard that MD Anderson is a wonderful facility and I would have a hard time beliving that they would exclude you because of race. They are a top notch hospital. I'm fortunate to go to UCSF. Stick with the top notch professional people. Good luck and God be with you both. My dr's tell me it's a chronic disease and I've had mets to the lung and liver.

mom_2_3
Posts: 964
Joined: Nov 2008

Rose,

I am not sure of why the DRs have given you only a chemo option. I also had multiple liver mets when I was diagnosed in November 2008. 4 rounds of FOLFOX shrunk my mets between 40% and 50% and I was able to have my liver surgery in February. I am currently NED and doing adjuvant chemo. At my first oncology appointment I was told I was inoperable but I got myself over to Memorial Sloan Kettering for a second opinion and found a DR that was willing to treat me for a cure as opposed to palliation.

So, it's hard to say whether your husband will be resectable. A doctor cannot be 100% what will happen when he starts chemo as he may have a wonderful response. Where the mets are in the liver is important but I have met numerous people in the office where I go who have battled their liver mets into submission, many using something called an HAI pump which directs chemo right to the liver. I had one of these put in during my liver surgery. Google "HAI pump" or "hepatic arterial pump" and let me know if you have any questions.

So my advice is to get yourself to a comprehensive cancer clinic. Can you get to NYC to go to Memorial Sloan? Was your opinion about the liver mets from an oncologist or a surgical oncologist that deals primarily with the liver. You would be surprised at the difference in opinions between the two that you may find.

As an answer to your question about doctors going the second mile....

My opinion is that some doctors will and some won't go that extra mile as I personally had that experience. Whether your doctor is or isn't, who knows. Whether it has to do with race I would have no idea. But I do know that where I am treated there are folks of every nationality and ethnic group in the waiting room and I am quite certain that all receive the same standard of care. If you need/want any more information about MSK post here as a number of us have been treated at MSK.

All the best to you Rose...

Amy
(someone that loves the name Rose so much that she named her daughter Elizabeth Rose...)

SimplyMe
Posts: 7
Joined: May 2009

for the information. I have been doing research on MD Anderson & Sloan Kettering. Neither are close to us, but both are in network for our insurance. My questions are: do you have a onc dr that you work with near your home, or just Sloan-kettering? I'm trying to figure out how you work out the need to fly to NY, finding a place to stay etc. I believe I read that they do have partnerships with hotels around the area where the patient & loved ones can stay while having tests & procedures. How did it work for you?

Rose

PS. It was years before I came to appreciate my name. Now, I love it!!

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Rose,

After re-reading Amy's response I think I'd like to add one more thing to mine. (Amy is wonderful and gives great advice,huh?) She asked about what kind of oncologist you've spoken with. That is key. The 'team' needs to be (at least) a medical onclologist, a radiation (or interventional) oncologist, and a surgical oncologist that specializes in liver mets. They need to be used to working together. They get much more done, can advocate with tumor boards more effectively and respect each others opinions in a whole new way.

Kimby

mom_2_3
Posts: 964
Joined: Nov 2008

Rose,

I am fortunate enough to be 25 miles from NYC so getting into Sloan only takes about an hour (2 hours if I leave at rush hour). But, we do have a smaller cancer facility in our local hospital that is only 5 miles away. That is where I went for my first consult.

When I started at Sloan my oncologist said I could take treatments at the local facility but I had such a horrible association to that place (it's where the oncologist was that told me I was inoperable) that I had no desire to go back there. I would rather drive into the city and be in a place that has such a positive feeling. I have met others at my center, however, that have our Sloan oncologist call the shots with respect to treatment but the treatments are done at their local facility. So they only fly in for CT scans and perhaps some specialized treatments. But the bi-weekly chemo treatments can be local.

One thing that Sloan does that isn't done in many other places is the HAI pump which is a chemo pump inserted into the abdomen and it directs chemo right to the liver. It can be used prior to surgery to bring liver mets under control and allow for resection. It can also be used after surgery as adjuvant treatment to kill microscopic cancer cells in the liver after surgery (which is what I am doing). I have met and know of a number of people whose livers were virtually covered in tumor that have either become resectable through this treatment or have had their tumors shrunken and go down from numerous to 1 or 2 left. If you can get a referral to Sloan I would take it that opportunity to at least have them review your husband's case.

If you do go for consults/treatment at centers that are not close to you there are wonderful groups that can help you with travel (like Corporate Angels) and accommodations (most cancer centers will have a list of places that offer free or reduced housing). If you came up here you would be welcome to stay with us in NJ.

One other thing I do love about where I am treated is that the floor I go to is primarily colon cancer. So when I sit down I know I can pretty much strike up a conversation with someone that is going through the same treatments as I have. Many I meet are years out for their diagnosis and simply coming in for follow-up bloodwork or CT scans. It is amazing how meeting people that are doing great with a Stage IV diagnosis can have a tremendous impact on your psyche. Our best friend's father is now 5 years out and NED after a Stage IV diagnosis and seeing him and talking with him gives me great hope for my own future. I feel like if he can do it, I can too. Also, the people that treat me do nothing but colon/liver cancer. So they see people making it through everyday. When I think back to that original oncologist who so cavalierly told me I had a timeline I give him some slack as I know he treats every kind of cancer. If he is treating colon, liver, lung, breast, lymphoma, prostate, etc. then he won't tend to see as many colon patients and therefore not see as many do well. Additionally, there is no way he can have the expertise in colon treatments as my oncologist has.

When I first met my oncologist I asked her my prognosis. She said (and I paraphrase) that she didn't know, how could she know. Everyone is different in how they respond to treatment. All she could do was bring to bear her experience in treating me but that I could do my own part by exercising as that has been shown to help prevent recurrence.

This is my oncologist (http://www.mskcc.org/prg/prg/bios/123.cfm). If you google her name you will see she is well-known in the colon cancer world. This was my liver surgeon (http://www.mskcc.org/prg/prg/bios/708.cfm). Don't let his youthful (and really good looks) fool you. He is top of his game. This was my colon surgeon (http://www.mskcc.org/prg/prg/bios/12.cfm). Top-notch guy and straight shooter. In addition to them I have had phenomenal care from the moment I started there. Everyone, from reception to scheduling to chemo nurses to radiologists is great. Let me know if you have any additional questions about MSK.

Rose, it seems like you are taking steps to research other treatment locations which is much in your favor. I read a study that showed that people that go greater than 10 miles from their home have more favorable outcomes. The postulated reason is that those people get out of their comfort zone and will look for the best and not the most convenient treatment. Don't ever lose sight of the fact you need to advocate (as Kimby so eloquently stated) for your husband and your family.

Amy

PS I dont' know if you find strength in prayer but I will keep you in my own prayers. The night before I started my first chemo treatment I went to a healing session and the word of God as spoken by the leader of that meeting was that God wanted to heal "neck pain, puppies and cancer of the lower body and liver." I was amazed as there were only a few people there and I certainly fit the last ailment. When the pastor laid his hands on my abdomen I felt a burning sensation that I had never felt before or since. 4 treatments of FOLFOX and my liver mets shrunk 40-50%. 1 more treatment of FOLFOX and then had my liver surgery. The pathology from surgery indicated the largest liver met was 80% smaller and 90% necrotic or dead. Some might say that the chemo did that but I believe there was another Power at work.

SimplyMe
Posts: 7
Joined: May 2009

Thanks Amy,

I am almost speechless. I can't wait for my husband to read your post! I believe we are in a good spot right. He is currently receiving Foxfiri with Avastin. He will have his 5th treatment next Wednesday, and the plan is to do CT scans after the 6 treatment to see how much has shrunk. My plan is to have an appointment set up right after the 6 treatment with Sloan-Kettering. I have been the website alot today, and I already feel comfortable with them. I'm going to look for affordable lodging up there, and speak with ACS about financial assistance if neceesary. I've spoken with my employer, and they tell me to take whatever time I need. Luckily, I have plenty of vacation time, so I will continue to get paid! I will google your team tonight (along with my husband), and keep you posted.

Thanks,

Rose

PS. I so appreciate the prayers, and we will include you and the others in ours.

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kimby
Posts: 804
Joined: Oct 2007

Rose,

Keep getting opinions until you find hope. It's out there. If the goal your husband's doctor has is 2 years, how will he ever get more? That's like plotting a map for Dallas and expecting to end up in LA. I have had to advocate and convince many very progressive doctors that I was a good candidate for more procedures. I now have a very aggressive team that has the tumor board of a major comprehensive canzer center cheering me on and allowing treatments that they would only consider if it was curative. For me, it will buy me time but is not likely to offer a true cure. I've spoken at length to two very experienced onc about the importance of patient self-advocacy. They both agreed that few patients understand how important that is or know how to go about it. The facility, tumor board and doctors have to hit certain success numbers to continue cutting-edge treatment. Without that, even more of us lose the battle. They are looking for the best candidate, show them that is your husband.

I'm not sure if your race is playing a part or not. I can only tell you my experience as a white woman in middle America. I'm 45 years old and willing to try just about any treatment that is reasonable for me. I don't like stats because they don't apply to me at all, but I do look at 'odds' when choosing treatment plans. My onc team members are each part of MY team - I am the coach. They are all aware of this. I negotiate tests, treatment plans and how I get results. I set the pace. I do a LOT of research before doctor appointments so I can ask intelligent questions and understand what they are telling me. I take someone with me to take notes (that would be you, for your husband) and I take notes myself. I get hard copies of every test, scan and all bloodwork prior to meeting with the doctor. (This part can be tricky as doctors don't like to fax a CT scan to you with bad news. If you need help with that, PM me and I'll give more details)

Here is the link to the NCI Comprehensive canzer Centers in the US. This doesn't mean that every great facility is listed but this is a wonderful place to start and you know you'll be at a top center. When I go for opinions I am really interviewing the doctors, their staff and the facility. Their opinion is important but I won't go to them unless they fit with my philosophy and attitude. I don't care AT ALL about bedside manner, but I've found that to be unusual for most people. My team is full of geeky,science nerds with very odd humor if any. I am usually the only patient in the waiting room that sees any personality traits in them because I have 2 brothers that way. I guess I speak 'geek' even though my oncs don't speak 'human'. LOL

http://cancercenters.cancer.gov/cancer_centers/cancer-centers-list.html

Good luck. This is an overwhelming time, I know. I hope we can be of help to you and your husband.

Hugs,

Kimby

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2bhealed
Posts: 2085
Joined: Dec 2001

YOU TOTALLY ROCK!

peace, emily

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PhillieG
Posts: 4888
Joined: May 2005

I agree with the bedside manner. I don't pay for that. I pay for smarts. The nurses provide the warm and fuzzy. I used to get copies of CT scans, on CD yet so I could watch the movies, then they got boring. Always the same ending. But you do have to either be your own advocate or have someone who does this for you. Also, I know why they call some plans Managed Health Care, you have to manage it yourself. The squeaky wheel gets the oil as they say but it's true. I also like how you have the attitude that they work for you (damn it!)

I agree with Emily, you rock Kimby

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tootsie1
Posts: 5056
Joined: Feb 2008

Rose, I wish you and your husband the best, and I sincerely hope race is not playing any part in this.

If you do decide to go to a cancer center that's far from home, check with the American Cancer Society and see if they can help you with a place to stay.

*hugs*
Gail

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Rose,

if you can swing it, I would highly recommend trying the Mayo Clinic up here in Minnesota. It's in Rochester and people of ALL races come from ALL over the world to get their care here. It runs like a Swiss Watch. You have your tests done in the morning and you meet with your doctors in the afternoon of the same day--NO WAITING!!! It's fabulous.

I LOVE my oncologist there and if you PM me I can give you his name. My surgeon too was fabulous.

Mayo is so international that all the colors of the rainbow are represented on both sides--doctors and patients. The town is so sympathetic to ill people too. It's all comforting when you're so sick. The facility is beautiful.

I wish you the best and I am sorry about your husband, but welcome to the boards.

peace, emily 7 1/2 year stage III colon cancer survivor (who didnt do any chemo) (I did CHEMIA instead which is "juice of the plant")

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

If you live near spartanburg sc, we have an excellent cancer center. It is affiliated with md anderson. I too was given little chance. Just 2-3 months. I'm now approaching NED.

kmygil
Posts: 881
Joined: Feb 2007

Hi Rose,

I am so sorry to learn of your husband's diagnosis. I live in Georgia and am of mixed race, and I am convinced I got the very best care available. I don't think race plays a part in it if you educate yourself and find the right places to go. Emory has just been named a major cancer center, if you live in Georgia. From what I hear, though, MD Anderson is cutting edge, although I don't know if you will be able to travel.

I don't know where you are, but there are OPTIONS. I am sure that a lot of people will have good suggestions for you depending on your geographic location. Just bear in mind as you and your husband travel this road that numbers are just that--numbers. Statistics that you read are usually old, because new treatments become available all the time. Each of us is different, and each of us are qualified for and/or able to do different treatments.

Please keep coming to this board. It kept me going when nothing else could during my travels with cancer. You and your husband are on my prayer list, as is everyone else on this board.

Hugs,
Kirsten

kmygil
Posts: 881
Joined: Feb 2007

By the way, I just want to tell you that you are a hero already. Loving caregivers are AWESOME!

Kirsten

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PhillieG
Posts: 4888
Joined: May 2005

I would hope that it is about finding the right care. If doctors are discriminating against you and your husband I would hope that they get what is coming to them. And it wouldn't be good.
I would get a 3rd and 4th and 5th because from what you said here there is no way he should be looking at this than anything other than a treatable disease. I had extensive liver mets and they were chemo'd then removed. Also, no professional doctor (in MY opinion) should tell anyone anything about when they are going to die. They don't know. Period.
Good luck, keep us posted
-phil

jenben59
Posts: 144
Joined: Jan 2009

Dear Rose, Pardon my language, but "don't stand for that crap". I go to MD Anderson, they are top of the line and it is such an amazing, kind and caring place...they don't care about race...they care about the patient, family and cure. You will be treated with care and respect. My neurosurgeon is from India, my proctologist is from India, my oncologist has an Egyptian background, some of the nurse are oriental/Philipino(SP), many of the social workers, office ladies, insurance people are African-American. If you don't mind me asking, where do you live? If you can, Google and find the closest MD Anderson cancer center/hopital/clinic near you. If you need some help, Tuesday, I'm due for my chemo treatment I'll give you their contact number, if you want and you can call them or I can give them your contact information and these people follow up! Please let me know if I can help.

lmliess's picture
lmliess
Posts: 331
Joined: Dec 2008

I just had liver resection surgery at MD Anderson in Houston for 2 liver mets. My Dr, Steven Curley was incrediable and never once made me feel like this was the end for me. In fact he has patients 10 - 15 years out from this stuff. And he is great...he is incredibly smart (google Steven Curley and 60 minutes and see what he is working on. It is amazing) and has a fun bedside manner. We live in Kansas and drove the 13 hours to an from for him. He is now working with my Oncologist here for follow up chemo.

Just my 2 cents from my experience....

steve g
Posts: 58
Joined: Dec 2008

Mayo also has a new hospital in Jacksonville Florida which is where I was operated on and as said before it runs like clock-work. You can go on-line and find out about them. Best of luck to you and your husband. Steve

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Others have already given great advice on seeking hope in finding a comprehensive cancer center, so I'm not sure I can add much... but,

MD Anderson has worked with travel airlines and hotels and apartments to reduce rates to cancer patients. Also, if you (or anyone) must travel for medical treatment, keep track of mileage and expenses. If you itemize on your taxes, you may be able to use this as a deduction (every little bit helps).

Also, many oncologists specialize, which means that some are more geared towards specific cancers. Make sure you are seeing an oncologist who specializes in Colorectal cancer. I have also heard stories where one surgeon turned away a person where a more specialized surgeon was able to complete the surgery.

I may be naive, but I really hope that your race is not the reason for a lack of care. I know this world is a long way from perfect, but I would like to think that you wouldn't get less care than someone else would.

I pray you find that doctor to go the extra mile for you.

I'm not sure if you feel comfortable posting where you live near, but someone living in that area may be able to suggest a team of doctors to you.

Patricia

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

I'm convinced that cancer drs and centers only see the color green. if you have decent insurance you'll find someone to treat you

SimplyMe
Posts: 7
Joined: May 2009

You all probably don't realize how much you have helped my husband and me! You have enabled us to focus on what we need to do to get him the best help available. Someone asked where we live. We live in Georgia, and the 2nd opinion was actually done at Emory. However, this dr was a medical oncologist, and I think that you are right, we need to find a surgical oncologist specializing in liver mets. Also, I got online this morning, and I'm looking at H Moffitt Cancer Center in Florida, but really want to take him to Sloan-Kettering in NY. I am going to figure out how to make this happen!

A note on the race issue. Although I am from the south, there have been very few occasions in my life where I felt that my race played a part in a service or treatment that I did or did not receive, and I hope it isn't the case now. What I think it really is is that everyone that has responded to me on this board has really shown bravery and acted as their own advocate, and I think that's what we have to get used to doing. Noone tells you that you need to do this, that or the other when you or someone you love has cancer, but through your posts, I now see that we have to ensure that we are getting the right treatment for my husband.

Once again, thank you and I will keep you all posted on what is going on, or if I we just need encouragement. You all have been wonderful! I hope we can return the favor soon.

Have a good day!

Rose

Wenchie
Posts: 88
Joined: Apr 2009

Personally, I was VERY disappointed with MDAnderson. I traveled there for a "second opinion". Although it's all about the diagnosis and treatment plan, which happened to be exactly the same as the diagnosis and treatment plan in my hometown, their fees were astronomical! They had nothing more to offer than I could get at home, they charged 2 to 3 times more for a CTScan than I pay at home AND they charged $125.00 for 2 bottles of barium prior to my CTScan! I feel that since they received their rating as a top cancer center, they have become very arrogant and over-priced. They were unresponsive to even returning my call after I registered with them online until...I emailed their Board of Directors to discuss their unresponsiveness. I was MUCH more impressed with the service I received at home (FL) and in conversations with Johns Hopkins.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

Dr. Gnuyen, 864-560-1900, tell him John Nimmons sent you. Maybe I can get a discount on my next surgery. Perhaps you can fax or email your packet to him. He's a very accomplished young Dr. I haven't asked his age, but I think he's around my age 35. His training is second to none. I think it's important to have a Dr whose initial training has been in the last ten years. Many of the first surgeons I spoke with didn't give me much hope because they have been accustomed to the old cancer philosophy. Newer Drs are on the cutting edge of the technology and psychology necessary to beat this disease. Imagine how you would feel if you had been treating stage four cancer for the last 20 years. Chances are you probably wouldn't have much hope for your new patients that are diagnosed. These new Drs haven't had the same experience. Sure they've had patients pass but they've had great success other than the occasional medical miracle. Even if you choose another surgeon, it probably wouldn't hurt to have him look at your case.

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I just joined this club last week. My husband found out he has colon cancer stage 4 last November. He had surgery to remove it from his colon. He also has liver mets and some in his lungs and a small spot on his adrenal gland.
His Doctor said five years but not ten. This was only after my husband asked what he really thought. He really like his doctor and I like him also. I feel he will do everthing he can to give him a long life.
I would keep looking for a doctor that will help and do it fast. You have to fight. RACE should never play into it. I know it does in some cases. Don't give up. Paula G.

offutt9's picture
offutt9
Posts: 88
Joined: Jan 2004

Hi!! Rose... I normally write on the liver cancer discussion board but when I read your post, I had to write... All the hospitals mentioned are very good ones... I have been to MD Anderson. I now go to Cleveland Clinic in Cleveland, Ohio... I live in Kentucky, and just wanted to tell you to check with ACS to see if they have a Hope Lodge wherever you decide to go. The lodge is free to cancer patients and caregiver. My husband and I stayed at the HOPE LODGE in CLEVELAND for over a month.. I pray you get all the answers you need. And I pray you find the right doctor. There is no expiration date stamped on us any where, I will be praying for both of you...In Gods Love...Barbara

SimplyMe
Posts: 7
Joined: May 2009

Hi Barbara,

After all the positive feedback, my husband & I decided to give MSK a try. We are currently getting all the info about his my insurance stuff straight. Not sure if his insurance has MSK as in-network. Mine does, but is secondary insurance for him. Anyway. I was able to find a Hope Lodge in NYC, YaY!! So we are just getting our ducks in a row and plan on spending 3-4 weeks up there in June. I'll keep everyone posted.

mom_2_3
Posts: 964
Joined: Nov 2008

Rose,

Let me know once you have your schedule for MSK so I can plan on meeting you at the outpatient facility. I have treatment every other Monday so I am bound to be there one of the same days as you are.

Good luck and keep up posted on your progress!

Amy

punch_vj's picture
punch_vj
Posts: 88
Joined: May 2009

I found your "bio" so spiritually sound and Uplifting.

Thank You...With love In Christ.

tiny one
Posts: 467
Joined: Jan 2009

One thing that I've found out from my Cancer Support Group from two good people who were told they were terminal. They responded well to treatment despite what their Doctor told them. We all know that the Doctors don't know how much time anyone has. Find a good cancer center, there is some new treatment out there which may help you. God bless and don't give up.

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Hi Rose,
I don't have any answers for you about a hospital to go to in the south, or the race issue. But I did want to tell you that my husband was diagnosed in 8/15/08 with colorectal cancer with mets (40 - 50 mets) on his liver and a few on his lungs. After having the part of his colon removed that had the tumor, and 6 months of aggresive chemo, my husband is now cancer free, all the tumors shrank and cannot be seen on the CT Scan. He is however on maintenance chemo for the rest of his life, but you know that is a small price to pay to live. His maintenance chemo is every other week, he gets Avastin in his port for 48 hours, but goes to the oncologists office on Wednesday mornings for 3 hours and gets something there (i can't remember what it is, sorry) and then they hook him up to his pump and send him home, where the nurse comes Friday morning and unhooks him. He has virtually no side effects from the maintenance chemo, which is nice, just a little tired on Saturday but otherwise fine. I just wanted you to see that Stage 4 can be (dare I say cured???). There are alot of Stage 4 survivors on this board. Please be encouraged to keep looking for answers. You are in my thoughts and prayers.
Sandi

amcp
Posts: 251
Joined: Jan 2009

My husband was diagnosed with CRC Stage IV in 8/06..had colostomy followed by 2 plus years of chemo. Told from the beginning just pallative care being given..may live 2 yrs. Mets to liver and lung. In 12/08 told nothing more they could do so they were sending us to Vanderbilt in Nashville Tn. for possible clinical trial. We went the end of Dec and met with DR Laura Williams Goff...Medical Oncologist... she is located at 1301 Medical Center Drive..1903 The Vanderbilt Clinic...appt phone number is 615-322-6053. She is fantastic..to make a long story short..she said my husband was not a candidate for clinical trials but thought he was a candidate for liver resection. Sent to Dr Alexander Parikh ..Surgical Oncologist...he said he could do resection but lung met had to be taken care of first. Sent to Dr Eric S Lambright who did the lung cancer removal with only having to remove 4% of his right lung only after my husband had quit smoking. Then went back to Dr Parikh who did liver resection on 4/30/09..removed 75% of right lobe of liver...largest cancer he had seen and it had connected to the diaphram. Was able to get it all and now husband is NED. He said he has 1 in 3 change of never having cancer again, 1 in 3 chance of if it comes back will be treatable or removable..and 1 in 3 chance of nothing can be done. We went from no HOPE in Dec to now in May he is cancer free. There is a Hope Lodge you can stay at free if you ask for a referral from Dr Goff. Go or call immediately. We only wish we had gone there when we were first told he had cancer. you can pm me at amcp and I can give you my phone number or whatever help you need. There is HOPE. DO not give up.
Praying,
Anna

SimplyMe
Posts: 7
Joined: May 2009

to my husband. This has been a wonderful week! My husband had to have a MRI last week to determine whether the cancer had spread to his brain. I found out this Wednesday that everything was clear. He also had a very open & frank talk with his dr. and let him know that he wanted to fight this disease and would not accept a 2 year life/death sentence. His CEA number has dropped to below half of where it was when he started, and this is just his 4th treatment. We have decided to go the Memorial Sloan-Kettering in New York, and are waiting for the results of his 6th treatment CT scan (Called the decision scan). I think my husband is more hopeful now. His dr here says he will do whatever he can to help him and seems to have gone beyond just trying to keep him alive for 2 years. I think that the change has come about because of all of the encouragement from the folks on this board. It helped us both to become our own advocates, and to demand the best treatment possible, and I would like to thank everyone for the information, encouragement & prayers that my husband and myself have received.

God Bless,

Rose

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Buzzard
Posts: 3073
Joined: Aug 2008

These people in here are the greatest...........Good Luck to you and yours in your journey..

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Rose,

Where ever you end up, think about investing in a juicer and pump fresh organic greens into your hubby in a bit of carrot juice. Alkalizing your system helps to heal the cancer as well as ingesting as many live enzymes as you can through raw veggies.

Becoming your own advocates and demanding the best is so empowering as is taking control of your diet.

Beating Cancer With Nutrition by Patrick Quillin is a great reference point to start your cancer-healing journey.

Hope this helps.

peace, emily

SimplyMe
Posts: 7
Joined: May 2009

We have invested in a juicer, but are finding it hard to figure out what to juice. My husband had been alergic to most fruits & vegetables for over 25 years, but with everything else, he actually likes them and isn't alergic at all now! So, I'm trying, and I will definitely get the book & try the greens & carrots.

Thanks,

Rose

2bhealed's picture
2bhealed
Posts: 2085
Joined: Dec 2001

Hi Rose!

Here's my favorite colon cancer recipe:

4-5 carrots
handful parsley
couple kale leaves
handful spinach
celery stalk
sm. piece ginger
(granny smith apple--optional)

Everything I chose for this juice was either for colon health or digestive health (which are obviously connected). To this concoction I added protein powder and flax seeds (excellent fiber and cancer curing properties) and a green powder that helps to alkalize. There are plenty on the market and I have tried most of them.

I am currently using a vegan protein powder by NOW that I get at my vitamin shop. I LOVE IT! and it's full of fiber and greens. yea!

Start easy on the greens (they can upset the tummy) and build up your tolerance until you can do more green than carrot. You can also add romaine lettuce and cukes, cabbage, beets and their greens. You name it. If it's green, juice it! (except the lime jello). It's better to focus on juicing the veggies rather than the fruit.

Cheers!

peace, emily

gardengirl
Posts: 5
Joined: Jul 2009

Hi Rose, I would like to suggest Dr.Joe Stephenson (oncologist) and Dr.Trocha (surgeon) of the Greenville Memorial Hospital system of Greenville,SC. They are very knowledgeable and helped my husband a lot. He is stage four colon cancer with mets to the liver. He had a liver resection last Sept.08 and chemo afterwards. Hope this helps, Gardengirl

donnare
Posts: 266
Joined: Jun 2009

Hi Rose,

My husband was dx on 6/28/09 with colon cancer with over 11 mets to liver. In the first hospital he was told he had approx 2 years to live and that nothing could be done about his liver. We then went to Fox Chase in Philadelphia -- they have not given him an "expiration date" and have told us the goal is to shrink what is on his liver to get him to the point where he is a candidate for liver resection, and if that was not possible, that he could live well with this as a "chronic" condition. He had his colon resection surgery there and will start chemo in a few weeks when he is stronger. He has decided to be part of a clinical trial that helps oncoligists choose which regimin (folfox or folfiri) will work better for patients based on the level of TS protein in their tumors. He is comfortable with his docs and wants to see how things go, but he is also open to other opinions at any point in this journey. We are in NJ and MSK is about an hour or so from us and it is the place he will go next if he feels it is necessary for another opinion.

I am relatively new to this board, and nowhere near as knowledgable as most of the people here, but I can tell you you have come to the right place. I have gotten so much information in the short time I have been coming here - not to mention the wonderful support and compassion. I was a mess just a month ago and I have so much more hope now.

I would highly recommend the book Emily suggested - "Beating Cancer with Nutrition" - we picked it up and are both reading it and are going to supplement his chemo with good nutrition, exercise, meditation, and prayer. He is also juicing, and when he is ready we are going to take yoga classes. Another good book (on meditation) is "Full Catastrophe Living" by Jon Kabat-Zinn. Kabat-Zinn has a few books on mindfulness, as well as meditation CDs. My friend is a yoga teacher, meditates regularly and cannot say enough about the practice of meditation to control stress.

I will keep your family and your husband in my prayers Rose. Stay strong and positive, get rest and support when you can or when you need it so you stay healthy also, and never lose hope. Don't allow cancer to "define your family or steal your joy" (thank you Eric38!).

All the best,
Donna

eric38's picture
eric38
Posts: 588
Joined: May 2009

Donna - Thanks for the mention. I am glad that some things I say are making an impact and helping.

Eric (:.)

krystle singer's picture
krystle singer
Posts: 109
Joined: Feb 2009

I strongly recommend the Mayo clinic. It is one of the best, but it depends upon where you live. My husband is a born and bred Minnesota boy so we think Mayo's is top notch. I found all I needed right here at home, but I haven't had any complications so have not needed to go far. I have more tests to go soooo maybe I'llneed higher level care in the future and I would absolutely go to Mayo Clinic.

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Hi Rose, I am also in Ga. and was dx. on May 12th of colon cancer with mets to the liver. I had my colon resected at Gwinnett Medical Center by a wonderful dr. I am seeing an Onc. at Suburban Hemotology and Oncology. I understand that many people come from all over the South to see Drs. here. I am seeing Dr. Sakers and he did not give me a timeline. He is very optimistic and told me they are going to shrink the liver tumor and do an ablation once it has shrunk. I am on Folfox and Avastan for chemo treatment and I take that at Gwinnett Medical.I have been very pleased by my care. I actually have a friend that went to Dr. Sakers for her colon cancer and has now had her port removed and is cancer free! I hope your able to travel to NY like you want but know there are choices in Ga. Side note...I have a friend who works for the Emory system and she thought my care was great and did not recommend me to change to Emory. Something to think about. I wish you the best of luck, Lots of prayers and have an attitude that he will be healed. By the stripes on my back you are healed...I shall not die but live and proclaim what the lord has done. Patti (Ga. Girl)

SimplyMe1
Posts: 3
Joined: Jul 2009

Patti! Suburban Hemotology is exactly where my husband goes! He sees Dr. Sarma! I like him, but it worries me that he doesn't seem engaged enough with my husband's case. He is a very soft spoken dr, and I just feel like he is looking at every single answer to his beast. As far as MSK is concerned, the next set of scans/pet will be forwarded to them, and then they will come up with a treatment plan. I really can't wait. He is doing well right now, and we have had 2 opinions that say he is getting the correct treatment, but I would feel so much better after this visit. Rose.

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Rose, let us know what the rusults are from Kettering, I do my chemo on Tuesdays early, maybe I will meet you one day. Stay strong....Patti

eric38's picture
eric38
Posts: 588
Joined: May 2009

I am not sure why they are telling your husband he only has two years to live. I have multiple mets to the liver myself and recently told that my cancer was even more extensive than I thought. Even after my surgery I still have involvement all throughout my abdomen and pelvic area. My doctor told me I was incurable and that it was useless to operate on my liver with everything else that is going on and he still told me that it was possible to keep me alive for several years.

p.s.
Noone but God knows how long your husband has anyway. Doctors go by their medical guidelines and according to medical standards all stage 4 cancer patients are terminal but there are many cancer patients who have proven them wrong. They only know what they are taught and they are all taught the same.

Eric(:.)

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

I was given 6 months to live. In December 2004. The docs told my beau "Help your girlfriend get her affairs in order" and (his father died 2 weeks before I started treatment) "You may come home to another funeral".

I'm not saying that I could not have lost my battle, but I didn't. Part of that, I feel, is because I never accepted that I COULD die from this. Now, that said, I was only a stage III, so the local lymph nodes were the only ones involved. But, 6 months later, not only was I finished with the CRC, but I was starting treatment for my second, unrelated cancer, breast cancer.

I also found something to laugh about, every day. And, I treated my body like a comfortable old friend, pushing it as little as possible. I suffered many side effects, and had 9 bowel obstructions after my resection, but only the first one required surgery (I learned how to clear them, once I knew what it was).

That all said, I am NO hero. I did was I did because I had no other choice. I kept my hope alive, and focused on the future, a time BEYOND the cancer...

Hugs to you both....

Kathi

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

Hi Rose! This is a very interesting topic. There are so many different kinds of descrimination these days. Mine was two fold. 1. I had no health insurance. This causes a descrimination that is absolutely an epidemic in this country. 2. I'm young (at the time under 40) no doctor believed, or even suspected for a second it could be cancer. If these two factors hadn't existed, i would have received my diagnosis two years earlier, and wouldn't be in the predicament i'm in now. I have noticed in dealing with so many different doctors that there is a blanketed arrogance and complacency running amok in the profession. They're overworked, overwhelmed, and they do not like being wrong. Some would describe it as a "God" complex. I think it's a combination of things. They've been desensitized to compassion. There is very little empathy in them. I wish you two were in California. I have the most compassionate oncologist who would never put an expiration date on his patients, and he would NEVER give up. I think doctors like this are hard to find, but they're out there. If any one of the ones you see aren't like that, then keep looking for as long as it takes. You NEED that desperately. It's probably one of the most important things (besides a positive attitude) to survive this. If any doctor tells you again he's going to die, kick them to the curb!

Many hugs, and best wishes to you and your husband!
Krista

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