CSN Login
Members Online: 7

You are here

Many questions

Douggie
Posts: 29
Joined: Dec 2006

My father was diagnosed with colon cancer 2 weeks ago. It is stage IV. It has spread to his liver, stomach and all arround in the lymph nodes.
He had surgery to remove it from his colon. There have been a few complications since. The plan was to get him out in 3-6 days and once healed to start chemo. They are planning to keep him there now and start chemo tomorrow he had surgury 9 days ago.
I have been spending every evening with him. I usually missed the doctors the next morning/afternoon and his oncologist was nice enough to stop in and tell me his prognosis. He told me if things go well he has 6-12 months. My questions are this:
1) I have read some good articles about c225. The oncologist said (more or less) anything I can find on the internet that is positive about anything. HE can show me 10 times more information about the same thing that would be negative. Does anyone know anything specific about c225? Does anyone on here have access to any statistical information about c225? Can I review some clinicals online about it?
2) My father is in a privately owned hospital. My concerns for my father are that they will do anything to keep him there because he is facing what could be a long/expensive treatment. Am I being paranoid?
3) While talking with his oncologist this morning. I asked if we can send his medical records to be looked over at a different facility. His reply was no. The place we would send them to wouldnt do anything with them without the patient being there. Because they would not be getting paid for there services. He also mentioned that If they did look them over and advised him of what should be done he wouldnt accept there advise. Is that standard?

Im not the type to talk about religion, raise my hands and say "praise the lord" and stuff like that (Im actually kinda angry at him right now). But I do believe in GOD. This next question is about sprituality and several things that I think were signs....either that or I should seek a prescription for valume.
A)Thanksgiving day was the first mention of my father losing weight. It was the day that he decided to go to his family doctor and get a cat scan. That evening I had an interview with a customer. It was brought up that his previous wife passed away from brain cancer. She was being treated at the same hospital that my father is at now. They released her telling her husband (the guy I was interviewing) that she was fine there was nothing wrong with her. Over the next 2 days she started acting real weird. He took her to a different hospital. Where she passed away in 24 hours from brain cancer.
B) I am a mortgage broker by trade. I refinanced a relative. While we were at the title company for closing. A scar on the forehead of the title company's rep was brought up. It was a scar from the removal of brain cancer. He was diagnosed at the same hospital my father is at. They were to do an exploritory. After which the doctor told him there is nothing they can do and he had months. HE didnt accept this and went to a different facility. They also did an exploritory. They found out they can operate. They also mentioned that (the place my father is at now...and did the first exploritory) Left no signs of ever doing an exploritory. In short they never really did one. The guy (at the time we were in his office) was 2 years past the date he was given by the hospital my father is at now.
Although I know my father needs family. I also feel that the need for him to have more specialized care is just as great. The problem is with what was mentioned in #3 and the fact I have a sibling that works at the hospital (she was actually the one at the title company). Although we are a tight family. I feel her need to have him there (and defend the hospital) is so she can be close to him. Its ultimately going to be my father decision. But my sibling has a pretty strong bond with him and he will listen to her.
The complications that have appeared already were mainly errors in the nursing staff (stupid misteaks) that my sibling defended. Well here are a few maybe Im just being too concerned:
1) the first night they tried to remove his NG tube. The respatory Therapist gave him his treatment. Then forgot to turn his oxygen back on. (this was 2 days after the surgury) The fluids were not being removed like they should and he got congestive heart failure. His oxygen was off for over 4 hours. I turned the oxygen back on and asked for the nurse to look at him because he was very agitated. It took another 1.5 hours before anything was done for him.
2) After she called the doctor. She was to put the NG tube back in and she didnt know how.
3) The next day a different nurse asked me If he got certain medications the night before.
4) My sibling witnessed a similar fluke in one of the following days. She made an issue of it. They threatened to fire her.

I could never figure out how they came to this conclusion. My father is up and walking regularly. But they said if we try to move him it could kill him.
The 2 places were thinking about sending him to are either the mayo clinic in mineapolis or the clevland hospital. They are both about 8 hours drive away.

After talking with his oncologist. I felt let down by the medical community. Where are all the big strives theyre always boasting about? how can a treatment for such a common disease be so miss and hit....to have no answers but if this doesnt work we will try this.
Any advise or guidance would be greatly appreciated.

NWmom
Posts: 80
Joined: Nov 2006

Hi Doug,
So sorry you had to be indoctrinated to this site. My husband is stage IV with liver mets and lymph node involvement just diagnosed in October. You will see there are many stage IV survivors on this site who are now NED (no evidence of disease). I would be very concerned with a doctor/facility that was not willing to confer with other specialists. That is a HUGE warning sign to me. Not sure what others will think, but I believe that many will agree- GET A SECOND OPINION! OR A THIRD! Our oncologist was more than happy for us to get a second opinion at a different facility. The whole thing with them saying if you move him it would kill him is also a huge warning sign to me. Unless he has multiple serious issues and he is unstable, I don't see how moving him (done properly with attendant medical care) could kill him. That sounds very dramatic to me.
There are many different treatments thay can try, though I have no info about c225, sorry.
If you are unhappy with the treatment he is getting, get outta there. If you are unhappy with the oncologist, find another one. If you are looking at Mayo, they may have oncologists that deal specifically with gastrointestinal cancers (we found one in our area that did).
I feel that if you are uncomfortable with the way things are going, that is God's way of telling you to make a change. Good luck!
Peace,
Heather

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

I don't know where you live, but I would seek out a cancer facility. I go to MD Anderson in Houston and it is known to be one of the best for colorectal cancers. Also Sloan Kettering in the east and of course Mayo.

Best of luck.

Kerry

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

Douggie,

Your father must be very blessed to have you looking out for his best interests!

Knowledge is power. It can't hurt anything to have a second or even third opinion.

It made me cringe to read your story. I am so sorry that you and your family have had to face the diagnosis let alone the terrible "mistakes" that you have since faced.

I would start calling some of the major cancer centers. Cancer Center of America, MD Anderson, Mayo Clinics, universities, etc and just ask them if they would offer a second opinion and what they would require. Inform them that his current care team is advising that moving him could kill him and see if they will just look at his chart. The worst they could say is no. Ask for a copy of his records yourself. That way, you will have them on hand to study and to send to where you want to send them to. The doctor sounds overly arrogant in that he wouldn't even consider the opinion of another doctor/facility. I'm not sure I would want to be treated by somebody like that.

It is important that you and your family are comfortable with the treatment plan. Personally, I wouldn't want to be treated by someone who doesn't seem to want to put up a fight (i.e., he has 6-12 months if things go well). My oncologist insisted that we fight as hard as my body would allow because he was going to make me well.

I can understand your sister's need to defend her place of employment. On the other hand, this is life and death we are talking about. There are some pretty amazing people, doctors and patients alike, who have beaten the odds.

I pray you find the answers you are looking for and that your dad finds a speedy recovery and strength to face treatment and NED.

Patricia

CAMaura
Posts: 719
Joined: Feb 2005

Hi There,
I am so sorry that you are experiencing such dramatic problems...having cancer is hard enough without the road being paved with mess-up after mess-up.
I might suggest doing things right now in a two-pronged manner. I agree with the others about contacting a cancer facility and that is a good idea, but you might also look around your own area for another group of doctors and hospital. I would also contact the administrative dept of the hospital where your father is and voice some concern about the level of care.
My primary thought is that you find a group of doctors who you can trust. You and your father are in control - not them. Patients routinely meet with other docs for second opinions.
If your dad is willing to see another doc, I would go for it. It seems as if you do not trust the staff where you are and that is not a pleasant thing...
Take care and all the best to you. If your dad does begin chemo where he is, I would be by his side as much as possible and I would call the nursing staff (the charge nurse as well as the nurse assigned to your dad) on EVERY shift (I have done this with my parents and it really helped). Ask updates regularly and make sure they know that you are very present and that they need to be very accountable; I would extend that thought for the docs as well.
Take care, and I am so sorry that your have to be experiencing any of this. Wishing you the best - Maura

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi

I certainly concur with my fellow friends in the importance of getting another opinion. Your father is very fortunate that you are serving as his advocate and watching out for his best interests. Please keep us abreast of your father’s situation.

Hugs to you and your dad.

Kay

alta29's picture
alta29
Posts: 435
Joined: Mar 2005

Please go back and read some of the great stories that we have here about stage IV survivors....Many of those with mets to liver and lungs...Dont give up....there are very good treatments out there....get a second opinion !!

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Douggie: The very first thing I learned when I was dx with Stage IV crc with mets to the liver is that I had to become my own advocate when it came to my health. I have great doctors but I have had to go after them for several things. This is not a disease you want to be waiting to get an opinion. Time is of the essence.

Secondly, any doctor that discourages a second opinion is a 'HUGE' problem in my estimation. I have asked my doctors if I could send my records to the States (I'm in Canada) for a second opinion and they had absolutely no problem with it.

Third, why is your dad still in hospital? What are the complications? It seems odd to me that they give him 12 months and feel he needs to remain in the hospital. Also, a piece of advice on the timeline, throw it out the window, and please tell your father to do the same thing. They told someone I know he had six months, in 2000. He is alive and kicking and looking very healthy.

Fourth, this is a time to make sure your father gets the best care, and this clinic does not sound like the best bet to me. I heard the Mayo clinic is terrific, but is there nowhere closer that you can go? Sometimes the best doctors are in our backyards through our area hospitals (at least this is the case in Canada, I'm afraid I don't know too much about how things work in the States).

And lastly, spiritually speaking, I have learned that absolutely NOTHING is a coincidence. Use the information that has been given to you appropriately.

I wish you and your dad the very best. Don't give up hope. Cancer does not have to be a death sentence. There are people on this board that are NED (no evidence of disease) who have battled Stage IV cancer. I hope to be one of them too. So can your dad. Monica

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Douggie -

I am so sorry you have to be here and it certainly sounds to me like you and your father have had the worst possible experience starting out on this disease path.

You and your Dad have been through a lot, and it seems much of this was hugely unnecessary.

As far as his immediate condition is concerned, I would seriously question the doctors regarding 1) why he has to stay in the hospital, and 2) why - since you say he is up and around - moving him might kill him? You need specific answers to these questions.

I worry about any doctor that wouldn't want you to get a second opinion. I mean this is a life threatening disease and most good oncologists would see the desire for a second opinion as perfectly normal. Please be aware that while major cancer centers are an option, there are usually many good oncologists who practice at less fancy places, but who are current and who will refer you at the drop of a hat to a more specialized place. Traveling 8 hours is daunting, but you can probably find a good second opinion much closer to home. Most importantly, you and your Dad need to be comfortable with your docs and with the experience you have had so far, I can understand not being comfortable. So, if nothing else, pick up that phone book and find a couple of others to consult with.

Please know that there is hope for Stage IV patients. I was diagnosed 19 months ago with Stage IV and have been NED for 16 months. I really question an oncologist who gives you an expiration date - instead they should be forming a battle plan and rolling up their sleeves, ready to help battle your Dad's cancer. This alone would be another reason for a second opinion.

Your father is so lucky to have you as an advocate. Find another oncologist (and suck the most of of your current one - for example, what specific chemo drugs are they starting with, what scans are they going to do and how frequently, what is the overall plan?)

There is hope and your father is lucky to have you in his corner. Keep coming back here and keep us posted. And let you father know that there are living examples of "hope" on this board. Shame on the oncologist for telling you 6-12 months based upon initial diagnosis.

Take care,
Betsy

lynn1222
Posts: 105
Joined: Nov 2006

my dearest Doug,

i am so sorry you are going through all this, i am very concerned about the doc. not wanting you to get a second opinion. i am a stage 4 rectal cancer survivor, i was given 2 years to live and no shot at remission, today i am cancer free and have been for 9 months. me and my nurse prationer had decided to fight and fight as long as i am breathing. i suggest you do the same. a positive attitude is the way to beat this thing. if your dad gives up on himself then the fight is over. i strongly suggest you go to mayo. i understand your sisters defense for her place of employment, i too am a nurse and i defend my place as well but never have i heard that a second opionon would not benefit anyone!!!that is alarming, also the mistakes that have been made should not be occuring. i cant understand all that is going on because i am not there and do not have all the facts. but i can tell you this. god is going to play a huge role in this battle. you have to beileve that the lord will heal your father and your father has to beileve this as well. please try not to be angry with the lord, it is not his wish for us to suffer, but sometimes he does give us a wake up call. i got mine and now i am closer to god then ever before in my life. if you truly bieleve the lord can save your soul then surely you must beileve he can heal our bodies.the lord loves us and does not want us to suffer. he is a patinet god and will wait as long as it takes on us to come to him. pray, pray, pray, talk to the lord tell him what you want and really mean it.your prayers will be answered but you must bieleve. please follow your gut instincts when it comes to your dad. if you dont feel something is right then it probably isnt it. please keep us informed on your dads progress we at this site really do care what happens to you and your dad. know that i will be praying for you as well, may god bless you with the miracle he has blessed me with . hang in there and never give up.

sending you and your dad a hug right now. lynn

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Douggie:

Welcome to our on-line family, although I wish we didn't have to meet under this set of circumstances. But hey, this is the best place to come for information from people who have been through it, from patients' pov and from that of the caregivers. So, welcome!

And I might add your father is so lucky to have you as a clear-headed, tough-minded advocate! You go!!!

It's nonsense that the oncologist cannot release your father's records. They are technically his records and they MUST release by your request. And the onc said he wouldn't take anybody's advice or consultation? I think it's time you look into another doctor. The very first thing my onc did for me was offering 3 colleagues, tops docs at 2 other cancer centers for 2nd opinion. Doctors who are not willing to help you with 2nd opinions should be avoided at all cost. What is he hiding?

If the Mayo clinic is an option for you, I'd say go for it. Your current Onc sounds scary.

Best of luck to you and your Dad!

Cheers,
Ying

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Hi Doug,

I am a physician and am appalled at what you and your family have been going through. Your father certainly needs another opinion. The doctor is probably right in that they will want to see your father to give an opinion rather than just the records. First of all, what city are you in and how old is your father? Did he have any other medical conditions before the surgery? I am wondering the latter because of him needing the oxygen. Does he still need it. I live in the Twin Cities area and do recommend the Mayo Clinic but there may be other major facilities closer to your home.

Dick

Douggie
Posts: 29
Joined: Dec 2006

Thank you for your responses.
He was moved to the oncology ward today but they decided to wait until tomorrow to start chemo.

We are located in south West Michigan. It was suggested we try the university of chicago. When I got home from the hospital this morning I called the cleveland clinic. I spoke with a nurse there that wasnt very helpful. It kinda hit me in the face that my father is terminal.

The reason he hasnt been released yet is because he hasnt been able to produce a major void. He does have bowel movements but they are very small. He also has (what they are calling a lung infection) I personally feel he aspirated some vomit the night he had CHF. But they are insiting its a lung infection. But then he has no temperature, he does cough but not uncontrollably.
The fluids mainly stay in his stomach. They feel that the lymph nodes are pushing on the stomach and causing a blockage.

My fathers previous medical history. None, he would never go to the doctor. He was a truck driver and had to get a physical but I think it was like once every 8 years or so. He never took any medications. The closest thing he would ever do (and this was every night). He would take 2 aspirins before he went to sleep.
My personal opionion is most of his problems are from him lying on his back. Lastnight when I got there they told me he vomited again. He was laying down in bed. I talked with him and told him to get up and try sitting in the chair for a while. They are trying to trick his bowels into working so they are clamping the ng for 4 hours then truning it on for 4. I noticed when he is laying down is when he get nausiated. We went for a walk lastnight and I sat him in a chair until he started dozing off from the sleeping pill. He didnt mention being nausiated once while the NG was clamped.
Well this is my theory, the infection in his lungs are a combination of aspiration from vomit and the anestisia during the surgury.
He has never layed on his back. He would always sleep on his side if he were in bed. But he liked sleeping on the sofa more, always sitting up with his legs on the sofa.

He is 66, just retired in August. Never any medical derogitories. A little overweight but not obiese, big framed. He has smoked off and on all his life. For the last 20 years he smoked about a pack every 2 weeks or less. No copd or any respratory problems.
Well, If you would take the time to read it. Im going to post what to me are important issues from his surgury to present.
After surugry (in post op) the nurse informed me he was having a real hard time with his catheter. They had to give him extra pain medication because of this. I felt it was best to let him rest that evening and returned the next day. He seemed to be doing fine. He had moments of confusion but I felt that was contributed from the morphine. He mentioned several times that he needed to leave, they removed his NG earlier that afternoon. (I made a misteak in my first post. It was the 3rd day after surugry that he had CHF). The next night (3rd evening after surgury) He was extremely distressed. Arguing for hours that he needed to leave and taking it personal that I wouldnt let him. He vomited green several times. I could see his breathing was getting shallow and saw his eyes roll back several times. But still pretty coherant. I called the nurse and noticed his oxygen was off and knew the RT was the last to mess with it,,,4 hours ago. I turned the oxygen on. A different nurse came in and checked his lungs. They were very full and she told his nurse to call his doctor. A hour later the put the NG back in. A hour and a half later they had RT back in, (they gave him a test where they place the sticky tabs on different parts of the body and measure the heart voltage...forgot what its called). It came back as CHF (theyre denighing it now).
Then later that morning. A doctor came in and told me his kidneys look good. That he had renal failure right after surgury but its cleared up now.
Since then, the NG was pulling up a green colored substance (appraently from the gall bladder?), It has cleared over the last 3 days and looks like its pulling out yellow bile.
As stated above. Theyre keeping him there because he is still unable to digest and have a bowel movement. Theyre thinking that the lymph nodes arround the stomach are pushing on his stomach and causing a blockage. Thats why they are going to start chemo earlier then originally planned

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Wow Douggie,
That is pretty heavy stuff, to say the least. I don't know whether your father is "terminal" or not although I have to say, it does not sound all that promising. However, the thing that strikes me, which no one else has really mentioned is the fact that they want to start chemo on him so early after surgery. The norm is to wait about 6 weeks, till the patient has time to fully recover from the surgery before starting chemo. If he is so far along that they cannot wait, then I would have to ask myself, what is the quality of his life going to be vs. the quantity? If it were me, I would go for quality. Of course, I have no idea if your father is in pain or what, but clearly he is not comfortable. I would ask the doctors if it would not be better to wait until he is more recovered to begin chemo.
ALSO, is chemo going to help him? What is the goal of the chemo? I know that these are very tough decisions that you and your father are going to face.
I assume c225 is some type of immunotherapy and it is in clinical trial, which is the reason that it does not have a name. If so, then the goal is to boos his immune response and hopefullly stop the progression of the cancer.
It sounds to me like you need to ask the doctor specific questions about this therapy and what the goals are. If your father is indeed "terminal" then you might want to shift the focus to keeping him comfortable and preserving his quality of life and possibly taking him home.
JMHO,
Susan H. (Stage IV survivor)

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

You know, I wish there were a way to edit these posts once they are up because I certainly don't mean to sound all doom and gloom. I sincerely hope that your fathers bowels get moving and the treatment that they recommend allows him to keep his food down and recover from all of this. However, you really could get a second opinion and if he pulls through all of this I would seriously consider moving him to another facility in light of all your concerns posted here.
Best of luck to you both,
Susan

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Doug,

I think you are right about the aspiration. That does then cause an infection in the lungs. I would be very skeptical of the lymph nodes as a cause of obstruction for his stomach. If they thought something like that they could do a CT scan. He may have an ileus or paralysis of the bowel due to any of a number of causes. I would advise having him transferred, by ambulance if necessary to a major hospital center. Chicago would be one place or even Detroit, such as Henry Ford Hospital. I would not let them start chemo on him in his present condition, it just doesn't add up. I would recommend moving him as soon as possible. If the doctors at the new hospital are questioning why you want him to go there fax these posts to them or copy and send via email.

Your father is very lucky to have you as his advocate. Keep fighting for him. I am very concerned about the care he is getting at that hospital. By the way, do you know how many beds it has, and how many doctors it has on its staff?

Dick

Douggie
Posts: 29
Joined: Dec 2006

Thanks so much for your help. I just got off the phone with my sister. Its hard for me to catch the doctors when Im there all night and have to work during the day. She suggested a CT scan earlier. There response was that with the past renal failure that the dies would make it that much worse.

CAMaura
Posts: 719
Joined: Feb 2005

Hey there -
I am sure you are exhausted. Ya know, it is okay to say STOP. This has been a snow ball rolling strong and maybe you and your dad need to catch your breath (and his strength) and decide on a plan - one which includss docs you relaly like and trsut and a plan in which you and you dad have confidence. It might be worth a breather of a day or so to get a handle on things. You can postpone chemo until is it right for YOU and HIM - if only for a few days to a week.
Say a prayer for clear thinking...It is already coming to you in bits and pieces.
Take care - Maura

Douggie
Posts: 29
Joined: Dec 2006

I agree susan. I think I just needed some sleep this morning. I didnt mean to make it sound so gloomy either. This forum is kinda set up for ease I would say. I have seen more user friendly forums made by 12 year olds for online gaming.

Dick,
I dont know there numbers but will definately get them to you. Its a small privately owned hospital. I appreciate your concern.
The whole thing feels to me like a sales tactic from the start. From the initial consultation with the oncologists rep saying that its all very treatable to where were at now.

Im not a doctor but the renal failure excuse seems kinda out of place also. He did apparently have renal failure after the surgury but has been urinating well since. Unless Im thinking of the term wrong.

As I said I just spoke with my sister and she has the biggest hand in keeping him local. I have 2 numbers to call tomorrow for the hospitals in Chicago. I will be on the phone first thing in the morning with them.

Thanks again,
Doug

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

I agree with the others. You dad sounds very sick. Get a second opinion at a major cancer center. You need to continue to be his advocate. Make sure he has filled out the paperwork for someone to be his health care proxy. They would be able to make his health care decisions when he is unable to. And make sure to ask your dad what he would want done. This is very important and the time to discuss his future health care decisions is now. You keep the original health care proxy paperwork and a copy goes in his chart. Make more copies and show them to any doctor he sees.

Good luck and keep us posted.

Maureen

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

After reading your story I was SHOCKED. I could not believe that the doctor had the nerve to tell you NOT get another opinion and it would not be in the best interest of your father.

It is YOUR father at the hospital and YOUR father that is going through this right now. Someone needs to take CONTROL of his treatment and doctors. Sometimes doctors DON'T always know best. When I was DX in 7/06 with colon cancer, I took control right away and stayed in control until I finished chemo. My ONC Doc was more than happy for me to get a second opinion, but I trusted him and his resolution. I was VERY lucky to have the surgeon and team I got.

Don't let doctors and hospitals intimidate you. Do what is best for YOUR father.

Huges and kisses your way.

Douggie
Posts: 29
Joined: Dec 2006

Ok I have some more info. There were 2 reasons why they operated at the begining.
1) he had 80% blockage
2) the dieing cancer tissue could have left a hole in his intestine.
I kinda ruled out the first one. I would always ask him if he was going to the bathroom ok and he would always tell me daily. He had no problem going before the surgury.
The loss of apetite. They said it could be from the lymph nodes swelling and pushing on his stomach and making his stomach seem full.

Well the sergon said that he would remove a couple of the lymph nodes arround his stomach to see if that would help. He ended up not doing it.
My father had a sigmoid coleclomy and gastrojejunostomy.
I asked the doctor about them removing the lymph nodes. He said the sergion maynot have had time.
Anyway, they are giving him chemo today.
He's schedualed to get:
oxaliplatin 170 mg
Leucovorin 400 mg
Then 200 mg
5FU 800 mg
2nd 1200 mg

Patrusha
Posts: 488
Joined: Jun 2006

Douggie,

You're right here in Michigan. Have you thought of contacting the comprehensive cancer center at University of Michigan here in Ann Arbor? Give them a call. I'd recommend my oncologist, Dr. Zalupski, for a second opinion. Try this link:

http://www.cancer.med.umich.edu/

Let us know how it goes.....

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

Patrusha I seen Dr Zalupski for my second opinion. He was very straight forward and we talked about me going there for treatment instead of my town Bay City, Mi. He said it would be the same so instead of driving all the way to Ann Arbor that he stated to stay and get the treatments in my town. He said not that I wouldn't want you here but it would be easier for you. I thought he was a very nice guy. Just wanted to let you know this. Not even sure you'll read this post again. Sue

onein10000
Posts: 6
Joined: Jun 2004

Douggie,

C225 is another name for Cetuximab, aka Erbitux. You might try a Google search on "C225" (be sure to use the " "). Other good resources for information are Medscape.com (it requires a sinple registration, but you don't get any spam) which gave me 45 hits or cancer.org (the American Cancer Society website) which returned 10 hits.

Let me know if you have any other questions or need any additional information.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

The more that you tell us the more disturbing this whole scenario becomes in my mind. I guess it does not matter though because all you can do is get a second opinion or try to trust that your fathers doctors know what they are doing. The thing that seems really strange to me though is that they are not even willing to give your father a CT scan due to concerns about his liver, yet they are willing to give him highly toxic chemo drugs! That does not make sense to me at all.
I will keep you in my thoughts and I certainly hope the best for your father and yourself.
God bless,
Susan H.

Douggie
Posts: 29
Joined: Dec 2006

Ok, I got more information this morning.
The reason they did chemo so early is because theyre thinking that the METs in his liver are making the liver do somethng to the protiens that are making all the fluid dranage. They are hoping that the chemo will turn this arround for him.

Douggie
Posts: 29
Joined: Dec 2006

I spoke with the oncologist again this morning. I mentioned that the surgion he is working with was talking about schedualling a ct scan today.

My father seems to be tolerating the chemo rather well. It was still being administered when I left. When he told the oncologist that he feel good piece of cake he just made a remark that getting th IV is the easy part then went on about something else. I know there will be side effects.

I also asked the doctor about dosage. Where it fell...high medium or low. He said Im going to hit this head on (something I heard from him repeatedly). Whats the plan of action.....Same.

Man this is all really getting to me. I had to vent lastnight about them giving him chemo right away. I talked with the charge nurse...Shes only been there for 3 weeks (atleast thats what I recall) she referred me to his nurse. She was very nice and knowledgeable. I told her my story about the signs and she said if it were her family member she would move him. As time got closer to his treatment I grew more disturbed. I pulled the PT lady over and vented on her a bit....explained that my sibling would like to see him stay there to be close to family. I dont recall saying it but I guess I said something about she must be getting a bonus if she gets him to stay. It was totally out of line. Anyway, They told her I said that. It was rude (to say the least) of me to say that. But I think its more rude and very unprofessional to repeat it.

AnnieM939's picture
AnnieM939
Posts: 38
Joined: Aug 2006

Douggie:

First, let me say that you are a saint and your father is lucky to have you. I am so sorry that both you and your dad are going through this. I was diagnosed on August 17, 2006 with my Stage IV Colon Cancer. I told my local Oncologist (I'm in Connecticut) that I was going to get a second and possibly a third opinion. He was fine with that. During the week of August 21st-25th, I traveled to Dana Farber in Boston and Yale-New Haven Hosptial for additonal opinions. All doctors agreed with my course of action
(5-FU/Leucovorin/ Avastin/Oxaliplatin)so I stayed with my local Oncologist and am having treatment close to home. BUT, I have no idea as to why your dad's doctors would recommend AGAINST a second opinion.

Have you thought about doing a check on the AMA website and research this doctor's (hospital) reputation (any disciplinary action, etc)? How much experience the doctor/hospital has had with stage iv cancer patients and statistics of those that have been treated? I can tell you that I researched all of that information prior to treatment and felt very comfortable with what I found. You could also check, if you would like or haven't already done so, www.cancer.gov site for trials that your dad may be eligible for. There is also another site, http://www.emergingmed.com/ with trial information.

I would just feel very uncomfortable with a doctor not wanting a second opinion. And who knows, in the long run, the second opinion may be the same as the first.

Forgive me if I am being forward, it's just that I feel so bad for you. I believe that I have been receiving the best care possible and it breaks my heart that you are going through this.

I wish you and your dad the best. You are in my prayers. Good Luck and I agree, that the Lord will help you through this.

Annie

AnnieM939's picture
AnnieM939
Posts: 38
Joined: Aug 2006

Douggie:

Sorry, I did forget to mention that I had surgery for the tumor (sigmoid colon?) first. The surgery was August 31st and I didn't start chemo until October 2nd. The doctors did say that I had to heal from surgery first because the chemo could cause a peforation in the colon, bowels, etc.

Again, God Bless and Best Wishes

Annie

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

You must be overwhelmed with the amount of information you are attempting to process..does the hospital have a social worker or patient advocate? Someone who can sort out some of the conflicting information you are receiving?
There are just too many seemingly contradictory questions/answers. this is what a medical social worker does-often they can reach doctors, administrators, etc. easier than you can, and get some straight forward answers. You need someone who is right there, and can advocate for your father. bud

Douggie
Posts: 29
Joined: Dec 2006

Thank you.
Thing are seemingly getting better. Although I still have a lot of concern for my father. I spoke to him the other day and hes content with his doctor. They are planning to drain the fluid buildup this morning.

I remember seeing an article about a new (I think it was a shot) that was developed in the UK. I was surfing and looking for something specific. I just glanced over it. But Im almost certain that it said something about a 77% survival. Would anyone happend to know what Im talking about?

AnnieM939's picture
AnnieM939
Posts: 38
Joined: Aug 2006

Hi Douggie

I actually have an article "bookmarked" about colon cancer vaccines. Try this:

http://www.sciencedaily.com/upi/index.php?feed=Science&article=UPI-1-20061117-17575700-bc-britain-cancervaccine.xml

It was in Science Daily, I believe back in November. Happy to keep looking if this is not what you are looking for.

I'm glad your dad seems happier and I hope that makes you more comfortable.

I continue to pray for you and your dad.

Annie

AnnieM939's picture
AnnieM939
Posts: 38
Joined: Aug 2006

I actually just found something that someone else had posted on this site (you people are the BEST). I hope you don't mind me re-posting your comment.

Annie

November 15, 2006, 4:31 AM CT

Vaccine Against Colorectal Cancer

British scientists have developed a vaccine that stimulates colorectal cancer patients' immune systems to fight malignant cells.

In a clinical trial of 67 patients, scientists at the University of Nottingham found that when the vaccines were administered before and after surgery to remove malignant tumors, they helped stimulated immune cell production in up to 70 percent of patients. These results are reported in the November 15 issue of Clinical Cancer Research.

"This is the first vaccine shown to stimulate TNF-alpha an immune-system protein that is very effective at killing cancer cells," said Lindy Durrant, senior author of the study and professor of cancer immunotherapy at the university.

The vaccine works by stimulating the patients' immune response to generate infection-fighting white blood cells called T cells, which in turn produce immune system proteins called cytokines that destroy cancer cells. The antibody contained in the vaccine, called 105AD7, was cloned from a patient who survived seven years with liver metastases from colorectal cancer, Durrant explained.

Douggie
Posts: 29
Joined: Dec 2006

thats the one annie.....thanks and good job!

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

Hi Douggie,

first of all let me say I am appalled!! You are NOT paranoid at all!!

I highly recomment the Mayo Clinic in Rochester, MN. I have years of experience there (I live in MN) and as my father says, Mayo runs like a Swiss Watch. It's true.

I had my surgery there and go there for my follow-up. I love my oncologist and his background is research. He is very supportive of my choices and is a wonderful caring doctor. He even suggested that I meet with another oncologist for a second opinion. Eventually that was a moot point because I opted to not do any chemo and pursued Eastern Medicine for healing. But that's another story......

I surely hope that your sibling can put her personal needs aside and realize this is about her father's life and not hers. How open is he to going to a world-renowned facility like the Mayo?

A hospital is like any business. We should never fool ourselves into thinking otherwise. They want our dollars to survive. They provide us with a service but they are not a prison and cannot keep us, though they will try to convince you otherwise and apparently they are already trying with their fear tactics....."he will die if he leaves" kind of BS. None of us gets out of this life gig alive anyway. HE gets to make the choice where he will be treated--NOT the hospital.

Be highly suspicious of any doctor who is not open to second opinions. RUN!

I am also very surprised at the decision to start your father on chemo right away. Surgery depletes one's immune system and to dump toxic chemicals into an already compromised immune system seems dangerous. My Mayo Clinic surgeon told me to go home and heal before I was even to consult with my oncologist.

Some things that you can do for your father right away:

Diet changes. Colon cancer is 80% dietary related so it makes inteliigent sense to start there. Cancer cannot live in an alkaline environment so eating an alkalizing diet is key. An easy way to do this is to eat raw veggies and fruits, whole grains etc. Animal products, SUGAR, white flours and grains, alcohol are ALL acid producing. Cancer loves acid.

The easiest way to get optimal nutrients into your bloodstream is by juicing organic fresh veggies.

GREEN = LIFE

Live enzymes are key to restoring health and healing disease. Raw veggies are FULL of live enzymes.

I have not read all 34 other posts so I apologize if I have repeated anything anyone else has said.

Best wishes to you and your family.

peace, emily

Douggie
Posts: 29
Joined: Dec 2006

Thank you, I talked with my father the other night and hes content with his current doctor. They never really said in detail what is going on with my father.
Since his surgury. HE has not produced a bowel movement, hes still on a NG tube that is pulling bile from his stomach. The oncologist suggested that its the mets in his liver. They are making the protiens go haywire and making excess fluid buildup. But to be honest I dont think he even knows. The protiens are one thing, Then there are tumors that are pushing against the stomach to not let it digest. Im going to talk with my sister this afternoon. I wish there were a way to research the oncologist himself. It makes me wonder how many people hes pulled through this.
My father went from good - pretty bad awfully fast.
The plan of action was standard....remove the tumor in the colon...go home...heal up then chemo.
My brothers flew in from out of town over christmas. One of them seems to think that the oncologist is a brainiac and just doesnt have social skills.

Douggie
Posts: 29
Joined: Dec 2006

Well this is pretty far down the link. Im not certain anyone is reading it anymore. But I just have something to say. I hope its not too negative.

I really have to wonder. Why they think they can lie to your face and not know the difference. The morning my father was going to start chemo. I questioned the doctor questioning if this was a good course of action to take. My father just had surugry 11 days prior. His explination was the reason his bowels arent working is because of:
1) all the fluid build up because the tumor is making the protien in his body freak out and making him retain fluid.
2) that there is a mass that is pushing against his stomach and not letting the fluids digest properly.
I asked about doing a cat scan. He said I already have pictures (these were taken about a week prior to his surgury). So my father went through chemo. The regiment the doctor used is posted in a previous post in this link.
Well were several days after the chemo and hes still not having bowel movements. So they did what they said they didnt need.....they did a CT scan and found out that his bowel collapsed at the previous surgery point. They are going to operate again tonight.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Jesus Douggie!
That is just horrible. I can't believe it. I guess your father has been operated on by now. I hope he is doing well, but for God's sake. I am floored. Once he is healed up from this operation I would get him to a new doctor if I were you. I am not sure what else to say. If it were me I would not start on any chemo right now. Personally I would wait until your dad is all better and in the meanwhile get that SECOND or THIRD opinion on where to proceed from here.
Please start a new thread and let us know how he is doing.
Take care,
Susan H.

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Douggie - I hope your father is doing better. I agree with Susan, start a new thread as this thread is pretty far down and I know I wouldn't think of going this far back. Hoping we'll hear from you. Monica

Subscribe to Comments for "Many questions"