Newbie looking for some guidance and support

esk2poo said:

Sorry to hear about your dad

He is very similar to my diagnosis but I had a couple of more lymph nodes. Everyone is different but I am here now 2.5 years post chemo and adjusted to the new normal. Regular bloodwork and scans so far so good. Only side effects are some bowel issues and severe neuropothy from the oxiliplatin. Make sure your dad lets the onc know when it is getting worse so they can reduce the dosage. Mine was stopped at 8 but still got me. I am also here to be with my wife and 2 girls now 14 and 10.

hope dad can have someone with him at each appointment as your head is spinning. Get a binder and write down all od your questions and bring it to each visit. Also, get copies of very test and scan and keep them in there. Chemo is no walk in the park but it is very tolerable with all of the advancements that have come out to deal we the side effects. You will get great advice here and do not be afraid to ask more questions or to rant while going through the process.

Good luck,

Allen

Stage 4, going on 6 years, don't give up. Decide now to stay strong. 

So sorry, you had to come here, but we will journey with your Dad. Ask swat. 

What at chemo is your Dad on?

has he had a pet scan yet? 

whats hats his CEA blood level?  Cancer marker. 

Raquel

We hate the circumstances which made you search for a place like this, but very glad you found us.  Here we share pretty much everything about treatments and the disease and what it does to not only the patient but also the caregivers and the family.  We laugh, cry, shout and have pity parties...we do it all.  In other words, always feel free to come and share your feeling and Dad's.

Asking questions and sharing experiences is another thing you will find here.  No question is dumb.  Always feel free to ask.  Someone may have had the same or similar experience.

Can you give us a general location for Dad?  We have folks from around the world here, and someone may be able to recommend drs or facilities if you find you/he want other opinions or options. 

It is very importan that Dad feel comfortable and confident in his health care team.  They should be willing to listen to whatever he has to say and be willing to explain all to him.  My sister's onc (she had a different cancer) had a 1 hr "class" for those heading into chemo and/or radiation treatments.  It certainly helped to take some of the fear of the unknown out of it.

Make sure that Dad and his primary caregiver get an after hours phone number to contact the onc medical staff.  Also make sure he knows to report any out of the norm physical changes during chemo...including fever, nausea, dizziness, etc.  There are pre-meds which can be given chemo day, at home meds, or reduced dosages to help him tolerate the treatments easier.

New chemo patients are notrious about not wanting to say anything about these issues because they think they should just deal with it.  Not so.  It is very important for the onc to know all about how the body is handling the treatments.

A good outcome is always possible for the cancer patient.  It does change us though and those who love us.  Making the most of every day is the best we can all do.  Fear of what may happen comes to all.  Do not let that become the dominate emotion.  There is always hope to be had until the last breath.

One more important thing to remember, no one doctor knows everything.  We must be our own best advocate when it comes to our medical care.

Dad and those that love him are just now dealing with this situation.  Please come often and ask all the questions you want, and always feel free to express your feelings.  We are here for you.

Marie who loves kitties 

Daddy's girl said:

Thank you for your support

Thank you for your support and kind words.  

We reside in Henderson, NV and he will be seeing the cancer and blood specialist of Nv.  I wanted him to get treatment T the mayo in AZ, as the Las Vegas area isn't known for the be st healthcare and school system but the doctos assured us that treatment for his condition is stanard procedure and unless he was severely advanced or had a rare cancer it didn't matter where he went.  Him and my mother are comfortable with their team of doctors And they are walking distance from our house which is always nice (not like anyone is walking in this summer heat!!)

I believe he will be starting a regime if 5FU + Leucovorin combined with a third that starts with a O??  He will do 12 cycles, one every other week and wear a pump for 2 days following a cycle.  Is this routine?  We are all scared of the side effects as ive heard rumors and 5Fu is nicknamed five feet under.  

He will have a PET either next week or the week after, as soon as he gets the clear from the surgeron.  I'm not sure what u mean by cancer marker?  Is this something I should ask hiM or read the pathology about?  

The CEA cancer marker is one of the blood work tests that is done.  It may or may not be an accurate indication of cancer activity.  For some it can never rise above "normal" range and they still have active cancer.  For some it can be high and be caused by another medical condition such as infection.

Some doctors put no emphasis on it, some do it routinely and watch for trending up or down.  It wouldn't hurt to know how his doctor feels abou this test.

The treatment you describe does sound fairly standard for first line treatment.  I suspect that the "O" component is Oxi, which is the contributor of neuropathy in hand and feet.  For some it is a temporary side effect, for others it fades over time after treatment, for others it remains a life long issue.  If he does have this complaint it is important to let the onc know right away so they can consider reducing it or removing Oxi from the mix.

Wishing your dad best possible outcome.

Marie who loves kitties

I'm not as active as I could be -- I just swing in a couple of times a week.

Our situations are a bit different, but I know what those first few weeks are like. My husband has had 6 weeks of chemo/radiation. Now, it's the waiting period to find out if the surgeon wants more chemo before he removes the tumor and surrounding lymph nodes.

Waiting is the worst part. I like to be doing something (or holding his hand while he's doing something).

We're getting used to having our "normal" change frequently. We try to do our normal things and schedule treatments and appointments when they interfere the least.

Hugs to you and your family.

I am a stage 3. I had cancer in two sites spotted in a colonoscopy. They removed 4 feet of my colon. Afterwards, I started the Folfox regime. I'm supposed to do 12 cycles. I've done 4 so far. Every round has been a different side effect. Right now it's shingles!  I dont think I ever heard death sentence. I heard a battle ahead but you can kick cancers behind. This board has been a lifesaver!  All questions are relevant. Love and support is rampant. I keep a journal of the days experiences and questions for my doctor.  Ask ask ask. Don't be afraid to ask anything!  My children hit panic to begin with and then put their war paint on. It's all about feeling good about the choices you and your family make. Prayers for you and your family. 

    Just go with the flow and do what you have to do to beat it. I was dxed stage 3c into 6 nodes . I had surgery and a year of chemo in 1998. I have been ca free ever since. Best wishes for a quick recovery. Ron.

Hi, my mum is currently delaing with stage 4 colon cancer that has spread to her liver, so I know what you are going through, and I dont know how I am trying to hold on. Its like Im living in a dream, that I cant wake up from. Everyone around me is saying prepare your self for the worst, you know theres no cure, you know that it is not a good outcome, she might not have much time left. Well Im trying to stay positive and I know that the end will be when she decides to give up. 

She was diagnosed in April 2014, but had been suffering with pain for over a year. She went to hospital in 2013 and they could not identify what was wrong with her, they sent her home with some pain meds. Finally she went back to hospital in February '14 with the same pain and then they did some tests, couldnt find anything. So we went to see her general physician and she took up the investigation as to what was causing her so much pain. Sent her to a gastro doc, he asked for a CT, then it was that radiologist that suggested colon cancer. We never even had thought of the C word at the time. After a colonoscopy, they couldnt 100% positively identify whether is was cancer, so they did an ultrasound and saw the liver had a lot of growths. So then she had a liver biopsy, which confirmed it was colon cancer. They have said that she might have 5-10 years depending on how well her treatment goes.

She underwent first chemo in May, I think she tried xeloda and it made her really sick. The second one they gave her was irinotecan which wasnt as hard on her but then she got to a point where she ended up with colitis and suffering from bacterial infection and diahhrea, So now we are trying to get a second opinion and the insurance was holding it all up, but hopefully now she can go once she gets out of hospital. 

Try to stay hopeful. It is hard - but if your dad wants to fight then he has a chance same as anyone. 

maggieBruno said:

I was diagnosed(2012) Stage

I was diagnosed(2012) Stage IV with mets/to the liver.I am 61 years old. I had colon and liver surgery immediately and followed up with 6 months of chemo. I am now in "complete remission" and feel wonderful! I sailed through the chemo BUT watch out for the side effects as I have  permanent neuropathy in my feet and hands from too much Oxyplatin. They watch for it but if your Dad's hands start to peel-discuss with the MD the option of reducing or stopping the Oxy. My hair thinned out a bit but I didn't lose it all.  Other than that I feel great, no other side effects and have a great long-term prognosis. Good luck to you and your Dad!

Welcmoe to the forum. 

Your survival story is wonderful, a lift to all who are fighting the fight. 

It would be great if you could open up your own thread, so that we can all welcome you there.

For us close tracking of CEA and C19-9 with ESR turned out to be very important.  We at first were told it was a stage III by one dr, but it was a IV, so chemo and biomarker tracking were important.