Father just diagnosed with colon and rectal cancers - some questions

[Mishmishfl]

My 75 year old father was diagnosed with probable stage 3 colon and rectal cancers last week. In the time that has passed he has flown to md Andersen for a second opinion, where they told him it was much more serious than his first diagnosis, since they strongly suspect lymph node involvement and floating cancer cells. They recommended neoadjuvant chemo and rad, then surgery. (First place recommended surgery first)

I am still trying to wrap my head around this. I am hoping you can help answer some questions. I have searched the forums and realize every situation is different, but I have not found a lot of specific info for the questions below. I am also overseas so my ability to speak to people or to show up is severely hampered.

First, he is on Medicare but without medigap or Medicare d coverage. What kind of copays are we looking at? He is of limited means. We are looking into getting him supplemental help -I found a great list of suggestions from another site that recommends drug companies, etc. But does anyone know - is it possible to get him medigap without underwriting and without the pre existing conditions clause?

Second, he is unmarried and lives in a different state than all of his children. What kind of caretaking is he going to need through this, and how involved will it be? We are all busy professionals, some with small children, and have no idea what he will need.
Related to this, I believe Medicare helps pay for some nursing aid -- is this needed for this kind of treatment? We have not had to deal with this kind of sickness, so we,are really clueless but hope,to get a better picture.

Thank you in advance for any information you can provide.

[MSJC]

If he follows the same diagnostic and treatment plan that I went through, he will most likely go for several diagnostic tests, possibly followed by radiation/chemo, surgery, more chemo, more surgery. Treatment depends on location and staging. If he does rad/chemo, there are a lot of appointments, many of which he will need a driver for. Surgeries are pretty serious ordeals that can turn into lengthy stays. I can only relate to my own experience that I needed help a lot over a twelve month time period... but everybody is different. I wish your family the best, I know this is an overwhelming time for you.

[cathy123]

I am going thru the radiation/surgery/chemo/reversal process similar to the one recommended by Mda. I am much younger, so if your dad has other health issues he may need extra help. I was pretty much ok during radiation, but experiences vary greatly. I would try to have someone with him at least for the final week when symptoms are at their worst. He will need help during and for at least 2 weeks after surgery. And then it would be best to arrange rides to chemo for him and gave someone to check in on him/provide meals for the next few days.

It is a long process. Hope your dad does well with it. Best of luck.

[canadiandaughter]

So sorry about your father. I can't help with any surgery questions, but my father is 80 now and has been on folfiri for almost a year. He would be very capable of going to chemo by himself. I am quite certain that he would also be able to manage on his own if he had to. If you would be able to get help for your father for the surgery, maybe he could manage with chemo if that is the route they go on his own. A housekeeper once a week or even once a month to do the big jobs would be a nice touch. My dad is capable of cooking for himself on chemo and also helps with tidying. His biggest thing is he is tired. He has a small lawn and manages that on his own, but if your father has a large yard that might be an issue.

[Mishmishfl]

Thank you for your kind thoughts and comments. It appears he will do the chemo in the city where my oldest sister lives, for 8 weeks. Then he will go to md Anderson for surgery. They hope the rectal tumor will have shrunk by then to facilitate the surgery.

My father was also discovered to have cataracts, and should not be driving, so he will need rides to all his appointments. I have found a few organizations that give rides to chemo, so that might be something we will need.

My sister seems to think the treatment will be "only" 2 hours every two weeks, (48 hour drip) but I think she doesn't quite understand the side effects and the toll that will take. But at least we can arrange help in her city much more easily than in his.

I would love to hear about the Medicare copays if anyone has any details.

A different question - mda is suggesting folfox 5--but I read a study from 2013 that suggested the side effects are much higher than a different treatment (capox) with similar results. Any comments on this?

Thank you again

[canadiandaughter]

My dad goes every two weeks and goes home with a bottle that needs to be disconnected 48 hours later. He either goes back to the cancer clinic, or my daughter who is a nurse and was shown what to do at the clinic does it for him at home. As far as side effects go, from what I have read it all depends on the person. THere are many on here that find folfiri horrid, yet my dad has had no issues. If and when they switch him to folfox, that might change, even though some on here had no problems. They have so many drugs now to deal with the side effects. At chemo class the pharmacist told us with all chemos the biggest complaint is being tired. But again, everyone is different and every doctor prescribes differently.

[MSJC]

Ditto what Canadiandaughter said. Folfox gave me some pretty nasty nausea and fatigue, etc. and I had to have help many days, but he may well handle it with few problems... almost a try it and see approach.

[sadysue]

You father will more than likely need considerable help through all that is ahead of him. I was lucky to be able to retire when I was diagnosed and also have my partner living with me. He was my rock. I was diagnosed right after my 60th birthday and was exhausted most of the time. Some days to the point that I could not get out of bed without help. I was an active, healthy person prior to my dx. I had horses and rode and cared for them; I rode a Harley back and forth to work every day; my job was strenuous (I climbed water towers for samples and did all the chemincal treatment at a large water treatment plant) and worked rotating shift for almost 20 years and never even got a cold! I was is good physical shape prior to my dx but found almost everything difficult afterwards. I had folfox (via a pump) and daily radiation for two months. Then surgery (all of my rectum was removed.) Then folfox after surgery. The chemo after surgery for me normally lasted 4-5 hours. They administered it to me slowly because I had a low tolerance. I think the younger you are, the easier for the person going through cancer treatment. Not that it's easy at ANY age but I think a younger body is more adaptable to different situations. Best of luck to your father.

[justin case]

I had stage 2 colon and rectal cancer. I cannot help you with the medicare problems, although I can tell you I worked during all the radiation and chemo. I went through the same treatments your father will probably be recommended. Surgery on the other hand kicked my butt, and help was needed for the first time in my life. Chemo, although very taxing on the body, can be managed by oneself most of the time. Limited income can be a gruesome worry, at a time like this, and just adds to the stress, already encumbered by the diagnosis. Feel free to PM me, when you are allowed to do so, and perhaps I can be of more hands on help. M D Anderson is top notch!
Michael