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Hubby w/ Stage IV. HELP

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

I am new to this site and very happy that I found it. My husband was found with colon cancer after being taken to the hospital bleeding. They did the colonoscopy (I don't spell very well) and found the cancer. A couple days later did the surgery and took out about 12 inches of the colon. Cancer had spread to the liver and the surgeon said if he could remove 3/4 or less he would have but his is so bad that he didn't do anything to it. They removed 16 lymph nodes and cancer was in 7. They see a spot in his lung but are not sure if it is cancer or not. After a week in hospital recovering from surgery he went home and in two weeks we began chemo (oxiplatin and xloda ,4000 mg per day for 14 days) no radiation. our oncologist is VERY difficult to understand and doesn't talk much at all to us. I learn more from the internet than from him. The surgeon was very negative about the possible outcome and the oncologist says "we wait and pray and put it in Gods hands". Well that is all well and good but damn it I want to KNOW what I need to expect. This is a wonderful place to vent and i find myself going on and on. Hubby is doing ok on chemo. Very tired and frustrated and afraid that it is not working. We are on cycle 3 Dec 2. After that (around the 16th) Dr. wants to do a CAT and see if things are working. Hubby says no not till after Christmas!. Thanks for listening. Just wanted some support and guidance. God Bless and have a Wonderful Thanksgiving. We DO really have a lot to be Thankful for..

pattieb
Posts: 176
Joined: Mar 2003

Welcome to the semicolon discussion board, there are alot of very nice people here who will listen to your venting and they may be able to give you some insight. Have you thought about changing drs you need to have someone who you can understand and who understands you and your husband and his needs I to have stage IV and had about 12+ inches removed in June 2002, I had gone back to work in Dec 2002, but right now I'm laid off, he can't just stop in the middle of his treatment because they will only start it up all over again. Keep us all informed about everything that happens it will help you to help him.
Good luck and my prayers are with you.
Pattie

novatocabruce
Posts: 19
Joined: May 2002

Just read your posting, and it looks like you've got a lot to deal with. Yes, it's in God's hands, but you have some choices in this too. Try and surround yourself with people who can communicate with you. Be frank with them, insist that they explain it and ask them "what would they do."

If the doctors won't keep you informed, talk with the nurses. They may have some thoughts on it.

It sounds like they didn't attempt to remove the cancer, right? It sounds like it's at a pretty advanced stage. (I was at stage III).

Feel free to write again. Cancer affects everyone in the family, and your husband needs his rest. Play it by ear.

I wish the best for you all.
Bruce

pjenks57's picture
pjenks57
Posts: 112
Joined: Nov 2003

Thank you for your inspiration and support. Hubby did round 3 yesterday and is very tired today but doing ok. He has a CAT scan on the 16th to see how we are doing. The surgeon is now afraid that the surgery,( which by the way they did take out the cancer tumor), was not succussful and want to do a colonoscopy (never could spell!) and possibly install a stint in the colon?!?!? We are trying to cope. My Mom has given up but keeps hanging on instead of going on home. I am at peace with her but VERY concerned and upset about hubby and anxious about our 8 year old daughter and how she is coping as she won't talk about it.

KrisS
Posts: 232
Joined: Apr 2003

Hi there- I am sorry to hear about your husband.

I am a bit puzzled. In your post you had mentioned that other than feeling tired he was doing OK on chemo. Why does your surgeon think that he might not have gotten all the tumor out? Pathologists usually evaluate the ends of the removed segment of colon and give a report as to how close the tumor is from the end. Usually they like to have removed several centimeters of normal tissue beyond the tumor to be safe. Is he concerned because margins of the tumor extended close to the edges of the removed tissue? My impression is that stints are placed only if there are clinical signs of obstruction. Apparently they can be very helpful at relieving clinical signs, but are not without problems.

The CT scan may shed some light on whether there is tumor at the site of previous colon surgery, but not always. Occasionally things like adhesions and other post-op changes can mimic a recurrance. CT is better for evaluation of the liver and lymph nodes.

You had mentioned in your previous post that your oncologist was difficult to communicate with. You will be dealing with your medical oncologist for a long time so you should be certain that you are comfortable with him. If not it may be worth hunting around or getting a second opinion preferably from a major cancer center. In fact a second opinion from a major cancer center is not a bad idea anyway. Often they participate in clinical trials which might offer new treatments that may not be available through any other avenue. Some trials exclude patients who have had multiple types of treatments with several different types of chemotherapeutic drugs, or other treatments, so sometimes it is helpful to find out about them earlier on.

I am stage 4 rectal CA, diagnosed 5/02. I did lots of research myself, and felt comfortable discussing options with my oncologist- sometimes lobbying for things he did not immediately agree with but he was willing to listen and referred me to others when appropriate. Currently, by the way, I am in at least partial remission on oxaliplatin/Xeloda. I am feeling pretty well other than a bit tired. The cold sensitivity gets old, especially this time of the year, but it is tolerable. I get infusions of calcium/ magnesium before and after my chemo infusion because there is some preliminary report from Europe that this might reduce the risk of more severe neuropathies with long term treatment.

As for your daughter, you may want to talk with her teachers to let them know what is up. Often oncologists have social workers that they work with who may offer suggestions, literature, and other support. The oncology nurses, or PAs may also be able to offer similar information.

Here is hoping that the chemo is working and that things go well.

Kris

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