What Other Options? Can't Give Up

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What Other Options? Can't Give Up

by Daughter28 on Thu Nov 20, 2008 12:00 AM

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My Dad was diagnosed with colon cancer in Jan 05.  Had part of colon removed at that time.  His CAT Scan showed a couple of small tumors in live, unfortunately in both lobes, and 1 outside the liver.  There was no medical necessity to treat at this point.

Aug 05 scan showed slight growth in tumors in liver and one small on lung. No treatment needed.

Jan 06 - new growth on right lobe of liver; some in ab and pelvis.  Started oxaliplatin infusion along with Xeloda.  He was on this treatment with good results thru Jun 06.  CEA went down; CAT scan showed reduction in tumors. Had a few months off.

Feb 07 showed some activity; reviewed again in May 07.  CEA level up.  Started Avastin.  Once again, Dad responded well; very little side effects, CEA marker went down; scan good showing reduction in tumors.  Last treatment Oct 07.  Had a few months off

Feb 08 scan showed some growth lungs, liver, some fluid in belly.  Started Camtazin; pump for 48 hrs. June 08 CEA level going down. CAT Scan looked good. Had a blip in CEA level in July.  Sept 08 added Vectibix.  CEA level 59.  Dad had his last treatment Oct 20.  When we returned 2 weeks later for his next treatment he was filled with fluid.  Doctor held off on chemo treatment to give his body a break.  Went back following week; still filled with fluid; having tough time breathing.  CEA marker up to 95. Kidney function good; liver enzyme fine. Gave him a fluid pill in hopes of removing the fluid, but it didn't work.  We ended up in the hospital to have the fluid drained.  He had ascites.  Did CAT Scan; cancer in ab, and more in liver. Doctor says there is nothing more that can be done and referred us to Hospice.  It has been 1 week; Hospice is managing his pain.  He is mobile; takes care of himself.  Wants to live.

I feel there has to be more we can do.  Any advice?  Can't give up.

RE: What Other Options? Can't Give Up

by wisconsincancerwife on Thu Nov 20, 2008 12:00 AM

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I'm so sorry about your dad. I do have a question. Why didn't they give him chemo right away for the tumors in his liver? My husband was diagnosed Stage IV in July of 2005 with 8 tumors on his liver. He had chemo, surgery on the colon and liver followed by more chemo.

Your family is in my prayers.

 

RE: What Other Options? Can't Give Up

by Daughter28 on Fri Nov 21, 2008 12:00 AM

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I appreciate your response and your prayers.  I think at the time of diagnosis, my Dad was in good health, had no affects from the cancer.  The philosophy was to let him live as long as possible without the treatment to keep his quality of life.  The tumors in his liver where in both lobes and were not resectable.  I can't complain, we took several wonderful trips with him.  I'm just finding hard to say there is no more that can be done.

You and your family are also in my prayers.

RE: What Other Options? Can't Give Up

by bamaboy on Fri Nov 21, 2008 12:00 AM

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Sorry to hear about your dad.  It sounds like they considered his age as a big factor in these treatments.     Not really knowing his age,  but it would make sense.    You can always get a second or 3rd opinion you know.   Never let one doctor rule everything if you don't like their opinion

RE: What Other Options? Can't Give Up

by Life_lived_long on Mon Nov 24, 2008 12:00 AM

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Hi-

I am so sorry about your Dad. I can sympathize with how you are feeling. My Mother was diagnosed with stage IV colon cancer when her colon burst. They also found large tumors in both lobes of her liver, and a spot on her lungs. She had 6 surgeries in three months (colostomy, historectomy, etc), received chemo for 24 weeks, was told that the tumors were still not resectable, and was told to get her affairs in order. 

We lived for six months under a dark cloud, feeling that there was nothing more that could be done for her. Then, last summer I received a newsletter from our local medical center, with an article about a new treatment for stage IV colon cancer that had spread to the liver. The treatment involves injecting radioactive beads directly into the tumor. We immediately booked an appointment at the best cancer care facility in the area. 

We are lucky and live in a  metropolitan area that is well known for cancer care and research at several local hospitals. The Dr. that we saw was really disappointed that she had not received treatment for so long, and showed us how much the cancer had grown. To make a long story short, the Dr. enrolled her in a clinical drug trial, and she has now had about six months of relatively pleasant life experience that she would not have had otherwise. 

I do understand that there is a time when the fight is over, but if your Dad still feels like he has fight left, I would strongly encourage you to seek out other opinions. While I know that we all have to rely on the advice and expertise of the Dr. during cancer treatment, there are some Dr's that are not willing to try new things, and some that are. It sounds like your Dad has been through so much and I know how emotionally exhausting the experience can be for everyone. I wish you the best, and will keep hoping for you. 

RE: What Other Options? Can't Give Up

by tarachand on Mon Nov 24, 2008 12:00 AM

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Hello,

 Can you please let me know where she is on clinical trial and what kind of drug she is taking? We are also end of ropes. The oncologist has informed us that he has nothin to offer any more. Thanks. Tarachand

RE: What Other Options? Can't Give Up

by Life_lived_long on Mon Nov 24, 2008 12:00 AM

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She is enrolled in a trial at the Seattle Cancer Care Alliance, but studies are run in hospitals nationwide. The drug she is taking doesn't have a name yet (that we know), only numbers which refer to the study. You can find info on drug trials at: "clinicaltrials.gov". The information there will tell you whether or not the study is open, what the patient criteria are and who to contact. 

RE: What Other Options? Can't Give Up

by tarachand on Mon Nov 24, 2008 12:00 AM

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Hello,

 

Thanks for such prompt response. Can you please let us know what is the drug number please? Thanks. Tarachand

RE: What Other Options? Can't Give Up

by Daughter28 on Wed Nov 26, 2008 12:00 AM

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I'm glad things have worked out for your Mom.  We never know when a cure will be find; it could be tomorrow.  I think my Dad, at 78, believes in his doctor and that no more can be done.  The cancer has spread to the liver, lung, and abdomen.  I would want to fight and get a 2nd opinion, but I can't force him.  We are trying to enjoy every day that we have with him; though things are getting more difficult for him.  It is difficult to make the decision between trying to fight and maintaining some quality of  life.

I will keep you and your family in my prayers.  Thank you.

RE: What Other Options? Can't Give Up

by Weadocm on Mon Dec 01, 2008 12:00 AM

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You are right..you cannot give up....here are two options:

Dr. David Geller at UPMC - amazing man/doc that will consult over email if you aren't close by:

Thomas E. Starzl Transplantation Institute
3459 Fifth Ave.
UPMC Montefiore, 7 South
Pittsburgh, PA 15213-2582
412-692-2001
Fax: 412-692-2002
E-mail: gellerda@upmc.edu

 

If that fails, there is great luck many have at the Ohio State University Integrative Medicine area through:

Dr Glen Frederick Aukerman

Northwood-High Building
Center For Integrative Medicine
Columbus, OH 43221

Phone: (614) 293-9777

Email: aukerman.1@osu.edu

 

My prayers are with you.

P.s. My dad had colon cancer with liver mets and then with lung mets....he is thriving, not just surviving after 4 years!

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