My spouse and I had the second appointment at the cancer clinic yesterday. I seems to me that we didn't get alot of answers.
They told us a couple of things. One that it is carcinoma of unknown primary. Two, that his CEA levels are high. They had decided that they are willing to try chemo but tells us that it only has an effect on about 50-60% of patients. They also tell us that the only benefit would be that it may shrink the tumour enought that he might be able eat some food. I have searched on the internet and it sounds to me like they are just trying to make him comfortable. I would like more answers but I don't know where to start. Would it be okay for me to contact the doctor separately from my spouse to ask the questions that I need answered.
Can anyone explain a little more about the CEA levels?
Also the Chemo drugs he will be taking is Irinotecan, leucovorin and Fluorouracil and Fluorouracil pump. Any information on these drugs would be helpful. He has lost another 10lbs in just a little over a week.

leucovorin and Fluorouracil are what I had. As chemo drugs go they have fewer side effects than others. I did have bouts of diarreha and problems with electrolytes. I also had blood cell counts go too low a few times.


That's about all I can offer though.

Hi Jelz.

I've been wondering how you were doing.

His doc may or may not talk to you. Might depend on whether your hubby signed certain papers authorizing him to discuss things with you. Those papers are standard in some docs' intake paperwork.

It couldn't hurt to give it a try. The worst he could say is 'sorry." I imagine this happens frequently in oncology practice.

If it was a "palliative care only" situation, seems to me like they wouldn't be trying an aggresive regimen of chemo. So, while they're trying to prepare you that things don't look terribly promising, at least they're willing to give it their best shot.

I suppose his CEA is still high because didn't you mention that he had cancer in his small intestine which could not be removed? Are they now saying it ISN'T colon cancer after all but an 'unknown primary' -- ?

Keep reading all you can. Hope your hubby can soon enjoy a bite of something to eat - that's a pretty awful deprivation to have to deal with, on top of everything else. :-(

Michelle

Also the Chemo drugs he will be taking is Irinotecan, leucovorin and Fluorouracil and Fluorouracil pump. Any information on these drugs would be helpful. He has lost another 10lbs in just a little over a week.

jelz,

My husband has been on the same chemo. He has completed one cycle and has just commenced his second cycle.

He has 6 fortnightly treaments to compelte a cycle.

My husband has his treatment every fortnight and it takes approximtely 3 hours at the cancer clinic, he then has a 5fu pump for 48 hours after which they remove the pump at the cancer clinic.

Your oncologist should provide you with brouchers relating to side effects and things to look out for ie fever etc.

He has been very lucky as he has not suffered many side effects, aside from extremely painful heartburn which seems to be a side effect of the fluorouracil pump and slight thining of his hair.

Having said that every person reacts differently to chemo treatment and there is a myriad of information on the web as to the possible side effects of this chemo combination if you google iriniotecan (campostar) and 5fu you will
find heaps of info. Your oncologist should provide medication to ease any side effects your husband may encounter.

I hope the above info is helpful and I wish you and your husband all the best with his treatment

maria_z :wave:

Jelz,

How are you doing? You have been through so much I am sure your head is spinning.

I was wondering if you ever went for a second opinion? Not sure what part of the country you are in, but might be good to get someone else's eyes and ears on the situation. (Greater Boston area has some great resources - Lahey Clinic, Dana Farber/Brigham and Women's - I'm sure there are others out there.)

Are they giving your husband any supplemental nutrition? I know that after my surgery I could not eat for a month so I was on TPN - IV nutrition - that I could do myself from home (with the help of a visiting nurse). I lost about 15 pounds but once I got on the TPN my weight stabilized. I'm not sure if that would work for his case or not...

My heart goes out to you and your husband. Good luck to you...

Cats

He had a good day today. This week we are told that it is considered "carcinoma of the Unknown Primary" but they are almost certian it started in the colon. Some medical reports state "Unknown" while others state it is "colon".
It is though the small and large bowels as well as the lining.
I am located in Ontario. (if anyone can refer me to someone in that area)
He starts the Chemo on Monday, I am anxious but scared for him as well. The side effects have been explained. If only he can eat something. That to us, especially him, would make all the difference. He is now down to a little over 130 lbs and I am afraid that he won't have the energy to fight the side effects from the Chemo.
The nurse come in today to explain what is and what will be happening. Looking through the charts that she brought, I clearly see the "pallitive care" box checked. I am getting upset with this, it does nothing but tell me that they have given up and that there is nothing they are willing to try.
I have now had some time to deal with all of this but yet my mind doesn't stop spinning, It seems we are getting less and less sleep. I have now taken a leave from work to be here with him. I watch him as he is sitting there and I can see his mind going, he is staring off into space. I don't want to overstep, he needs time for himself as well.
Sometimes I know that he is so aware of what's going on and he is trying to deal with it, other times he talks like there is not a thing wrong with him.
He had a talk with our 14 year old and gave him a pair of work boots, telling him that he will need them to help his mom around the house. It broke my heart. I wish that I knew what I could do in order to help him through this.
Sorry this is so long, needed to vent a little. Thanks for listening.

Hi, Jelz. Been wondering about you and hubby. It sounds as if he is grimly trying to come to terms with this. Will he agree to go have a second opinion? I hope so, for your peace of mind.

I live in California but used to be a "goofy Newfie" -- my mother is from Fogo Island, off the coast of Newfoundland. Lived there as a small girl. Very beautiful but COLD!

Hopefully some fellow Canadians will have some good personal recommendations. However, below is a catch-all listing of the cancer care centers in Canada, by province. Maybe that is a start. Be sure and have in hand hubby's pre- and post-op biopsies and surgical reports as some places might want to review them prior to making an appointment.

Canadian cancer centers: \

http://www.cancerindex.org/clinks5c.htm#canadaC

Normally this site doesn't permit links but hopefully this one will pass muster.

Glad you've taken off work to be there with your husband. Don't forget to go recharge your batteries yourself from time to time.

Hugs to you...

Michelle

Hope is a really good thing to have when a family is given a Stage IV diagnosis of Cancer. There is ALWAYS hope.
And I agree with everyone here who discussed having a second opinion with another oncologist if the Canadian health system is set us for them...

That said, palliative care is NOT a bad thing. My father had both chemo AND radiation as palliative care. Both could shrink the tumors in his colon and lung and bone and relieve pain. Blockage in the intestine is NOT a good thing under any circumstances.

It was the much higher chance that we would not have my Dad around for as long as we thought he should be that caused us, his family, the most pain. I'm sure those are the thoughts that are difficult to deal with as you search for medical treatment.

Please don't discount palliative care - aiming for my father's comfort made us all feel better...
Ruth
:angel:

Ruth,
One of the reasons is I just joined is because I was introduced to a product called ********** that is a natural liquid health supplement that addresses cancer. Actually the ********** addresses every system in the body, the bones, skin, organs, blood, tissue. There are 2 sites I would like you to view. Go to www.pubmed.com and type in the word **********. They have done studies with this for hundreds of years and it has been a difference in peoples lives with cancer cause it has been shown to retard or kill cells. Cancer runs in our family too and doing something preventative is worth it for us. Also check out www.**********.md.com you may find some beneficial info there too. Any luck write back. Blessings, Sue

I am a firm believer in FDA approved medication for something as life-threatening as cancer. There are many alternative supplements out there and I understand anyone who wants to try anything and everything in the face of a potentially terminal illness.
I personally would not. I believe that there is a separate board for non-FDA type products though -
:angel: