The Colon Club

WarriorSpouse wrote:I think you have a good plan... Keep Dana Farber in the mix. MGH v. DF, I'd take DF, and we have when having to chose a plan. You live in a great area with excellent options.

After your tumor shrinks with radiation, you may be ale to seek more comfortable treatments. As for a $2K copay, even better than $6K!.. All chemo, even pills, should be covered by HC because they simulate oncology outpatient care. Have them mailed to you via Oncologist prescription. The costs are less expensive. Always call your insurance to verify and/or use an oncology nurse navigator to assist you. Most hospitals in the area have one on staff to help you as a cancer care advocate.

Good luck... Keep us posted!
WS

I've read from another poster that MGH is easier to work with than DFCI - I really struggled with getting appointments at DFCI. Once I went through the intake process, though, it was a lot easier. My sister had brain surgery recently to get a stent installed and that went well so I'm overall really impressed with MGH but DFCI is a specialist place. My oncologist recommended going with MGH for the surgeon if I had a choice but it was easier scheduling my second opinions with everything at DFCI/B&W.

Yes, we are really fortunate to have a lot of great hospitals in the area. I have read several stories where patients have had to travel long distances to get consults, second opinions, etc., and where patients didn't have good options locally.

I am hoping that the tumor starts shrinking after a week. I would be very happy with even a 10% reduction. Things have improved in that area in that I'm going daily. There is some soreness afterwards but the mental stress was actually a lot worse than the physical stress.

I got the first batch of pills yesterday. I was greatly relieved when they arrived as I had never done mail-order prescriptions before. I much prefer in-store pharmacies but that's mainly because our phone connection was really awful. Xeloda is a class 3 drug on my healthcare plan so the copays are $90. I got the 500 mg and 150 mg pills so a total of $180 in copays. That covers only four weeks as that's the maximum that my insurance will cover at one time. In the third week, I'll have to get the rest of the prescription filled for another $180. The oncology nurse set them up for me with the prescription but I thought that she was going to order them but it turned out that I had to do that - so a bit of a communications problem.

Regarding the house stuff - we bought a starter back in the 1980s and planned to upgrade in the late 1990s. Unfortunately, I looked at prices and felt that they were getting to bubble levels. Little did I know that prices would keep going up into 2007 when the real bubble popped. So we could use a bigger place and I've been thinking about it for a while. Until cancer hit. Talk about putting your life on hold.

I'm fortunate that there are folks that have gone through this successfully with similar circumstances and people going through it now though a little ahead of me so that I can learn what to expect. No two cases are the same but there are similarities.

You are well informed Mike, and should feel good about the treatment and the path forward.

MGH and DFCI are both winners, and you can always go back and forth for consults if things change. As for your copays, I think you should have a maximum per person on your insurance, so when you hit that number the insurance will take the costs 100%.

Make sure you are within network and do your due diligence along the way to ensure you are covered. Example, sometimes the hospital is in plan and the doctor, but the anesthesiologist may not be. Check with pre-surgery people. It is crazy to keep up with itall. Your Zeloda will bump you to your deductible ceiling and the rest should be covered. Check and ask. After you begin to feel better, set-up your own escrow account for the new yearly expense.

The market is hot again in Metro Boston and that includes Nashua. You have many housing options and areas to look at if you want close care and convenience. Family being close by is always a big help too.

Good luck Mike and check in as things move forward.
WS

The report was that the tumor was blocking 75% and this was five weeks ago

My mom had the same problem. She did the milk of magnesium and the Myralax and she said that def. helped..
Also, I had the dr. give her exam last week. She had a hemmorhoid develop so she said it was okay to put a little hemmy cream on there. There is so much opposite things that go on . Before you have to do the high fiber to avoid consitipation then you have to do the BRAT diet with Diarhea. It's going by fast.. the radiation that is. My mom said that she made some friends at the center, and they all have different types of cancer, they are kind to her. My mom has 2 more weeks left. She is doing better than I thought. She has ZERO hand, foot redness or rashes. She has been using the Utterly smooth, Aquaphor, Cetaphil, and fragrance free Aveeno. So far, she has gained a pound and she says that she is going BM every morning more easier, sometimes diarrhea. Best of luck. I have my 1st colonoscopy next week..

ocstacy wrote:

The report was that the tumor was blocking 75% and this was five weeks ago

My mom had the same problem. She did the milk of magnesium and the Myralax and she said that def. helped..
Also, I had the dr. give her exam last week. She had a hemmorhoid develop so she said it was okay to put a little hemmy cream on there. There is so much opposite things that go on . Before you have to do the high fiber to avoid consitipation then you have to do the BRAT diet with Diarhea. It's going by fast.. the radiation that is. My mom said that she made some friends at the center, and they all have different types of cancer, they are kind to her. My mom has 2 more weeks left. She is doing better than I thought. She has ZERO hand, foot redness or rashes. She has been using the Utterly smooth, Aquaphor, Cetaphil, and fragrance free Aveeno. So far, she has gained a pound and she says that she is going BM every morning more easier, sometimes diarrhea. Best of luck. I have my 1st colonoscopy next week..

I am very glad to hear that your mom is doing well. I'm behind on buying products that have been recommended:

- Eucerin
- The ones in this post
- Cotton shorts. My shorts are all polyester (I'm a runner) and the radiology place recommends cotton
- Depends for diarrhea
- Maybe some hospital bed pads to place on my home office chair or bed

BTW, feel free to tell me if I'm all wet here and you really don't need some of this stuff like the last two. I really don't want to generate more work in messing up bedding or other stuff around the house.

WarriorSpouse wrote:You are well informed Mike, and should feel good about the treatment and the path forward.

MGH and DFCI are both winners, and you can always go back and forth for consults if things change. As for your copays, I think you should have a maximum per person on your insurance, so when you hit that number the insurance will take the costs 100%.

Make sure you are within network and do your due diligence along the way to ensure you are covered. Example, sometimes the hospital is in plan and the doctor, but the anesthesiologist may not be. Check with pre-surgery people. It is crazy to keep up with itall. Your Zeloda will bump you to your deductible ceiling and the rest should be covered. Check and ask. After you begin to feel better, set-up your own escrow account for the new yearly expense.

The market is hot again in Metro Boston and that includes Nashua. You have many housing options and areas to look at if you want close care and convenience. Family being close by is always a big help too.

Good luck Mike and check in as things move forward.
WS

I'm well-informed because of the threads here and the willingness of folks to answer questions and make suggestions. Some of it was from talking to the doctors and nurses of course.

My health insurance covers out-of-network costs at 70% and I think that those costs are included in the out-of-pocket max. I also think that everything east of Worcester is covered along with NH. I don't know about the other New England states. This is the cheapest plan at the office too so I have pretty good coverage which means that I need to keep my job to maintain that coverage. Which is why I'm trying to work through the treatment as best I can. I looked at the public exchanges and they are all HMOs for NH and MA and they don't cover out-of-network costs at all. I do try to think in advance as there are a lot of calls for a recession in 2018 or 2019.

Housing markets are better but the delta between Nashua and Boston is huge. I think that we would get something around the size of a tiny studio if we sold our place up here for something in Boston. I can live in one of the Boston suburbs if need be as my mother lives down there by herself and she'd love the company.

Just took the first dose. I had about 500 calories between 15 and 30 minutes prior, got out a metal bowl (in case I need to throw up), took out a glove and a piece of paper and dispensed the pills onto the paper. The dose is 1 500 and 8 150s and I asked my wife to check what I put out. I have an errand to run in about 40 minutes and we'll see if there's any effects in that time (I hope not).

I went to the Radiology appointment and it was delayed for about an hour as an earlier patient had problems and needed a lot more time.

The radiation process goes like this: you drink 24 ounces of water an hour before the appointment and then you go in there and lie on your stomach for about 15 minutes while they align you and then do the treatment. Adding an extra hour in there means you feel like bursting. So I drained myself a few times and told them about it. It was uncomfortable because one of the edges of where you put your bladder over generates pressure but I got through it and it's not the toughest thing in the world.

I spent the waiting room time doing bodyweight exercises as I've been neglecting those the past month.

NHMike wrote:... The radiation process goes like this....

My radiation process was not like yours. I was always on my back.

Do you know why you are on your stomach? Could it have to do with the location of the tumor, or is it because of the design of this particular machine?

All of my sessions were the same length and delivered radiation doses in the same order and same intensity. For some patients it is different.Do you know your pattern of dosing over the 5 weeks? Has your radiation oncologist discussed this with you?

JJH wrote:

NHMike wrote:... The radiation process goes like this....

My radiation process was not like yours. I was always on my back.

Do you know why you are on your stomach? Could it have to do with the location of the tumor, or is it because of the design of this particular machine?

All of my sessions were the same length and delivered radiation doses in the same order and same intensity. For some patients it is different.Do you know your pattern of dosing over the 5 weeks? Has your radiation oncologist discussed this with you?

I suspect that it was the design of the machine and the location of the tumor. The dosage is the same every day (just checked the schedule sheet).

My radiation was done with me on my stomach, as well. I was laid out on a special pad that allowed my belly to hang down. It was so that my small intestine would be out of the radiation field. My radiation oncologist treated my entire pelvic region, including the front of my tailbone and my ovaries, to prevent recurrence in the most common areas. The last few sessions were called "boosts," and lasted almost 3 times as long as the rest.

Hi Mike,

I just caught up on all of your posts and learned even more from them, especially the genetic tests. I didn't know tha tthe staging for Rectal cancer is different than for Colon.

I can only imagine your discomfort, I was lucky in that respect and really had very little pain until my blockage. The colostomy definitely relieved that and while it's taken time to get used to it I try to look at the positive side like... sleeping through diarrhea from my new chemo cocktail because it just goes into the bag! I am trying to keep positive and encourage you to do the same. i know how difficult it is when first diagnosed and how you want to start treatment immediately because of the ticking time bomb feeling. I was told repeatedly that CRC is very slow growing but it still worried me. I started chemo about 5 weeks after diagnosis but wasn't able to tolerate it so there were months that I had no treatment while I recovered my general health. i hope that the radiation and Xeloda work fast to give you relief!

Keep the faith and fight the fight!

Shana

Shana wrote:Hi Mike,

I just caught up on all of your posts and learned even more from them, especially the genetic tests. I didn't know tha tthe staging for Rectal cancer is different than for Colon.

I can only imagine your discomfort, I was lucky in that respect and really had very little pain until my blockage. The colostomy definitely relieved that and while it's taken time to get used to it I try to look at the positive side like... sleeping through diarrhea from my new chemo cocktail because it just goes into the bag! I am trying to keep positive and encourage you to do the same. i know how difficult it is when first diagnosed and how you want to start treatment immediately because of the ticking time bomb feeling. I was told repeatedly that CRC is very slow growing but it still worried me. I started chemo about 5 weeks after diagnosis but wasn't able to tolerate it so there were months that I had no treatment while I recovered my general health. i hope that the radiation and Xeloda work fast to give you relief!

Keep the faith and fight the fight!

Shana

I've learned a lot here too as I've seen different treatments for different things. If the cancer is in the Colon, then they can remove part or all of the Colon. If it's in the rectum, then they usually want chemo and/or radiation to reduce the size of the tumor before surgery so that they can save as much function as possible.

I've had some major progress after two days of chemorad in that I can pass gas now without having to go to the bathroom. This might seem like a very small thing but it's actually significant. Before, I'd let the pressure build up until uncomfortable and then head to the toilet and it still resulted in a lot of trips. I would guess that the tumor only had to shrink a small amount, maybe 5% to allow that but it's progress and I look forward to more in the future. I had been taking Miralax daily but I didn't take it on Monday and Tuesday as I had been able to go with effort. I also didn't want any interaction issues between Miralax and the Xeloda. I'll see how things go today to determine whether or not I resume the Miralax.

The effects of the Xeloda hit me harder late last night (I take it around 7:30). It was that same feeling that something is there and that it's dulling my senses but it was a lot stronger than it was on Monday. It also made me feel tired which wasn't a bad thing as it helps me sleep. I increased my water consumption as I'd read that it was good to do that to make sure to flush the stuff out of the body regularly. This morning, the feeling was mostly gone, so it looks like the stuff peaks in effect, then drops off after about 10 hours.

It's somewhat difficult to describe the feeling of Xeloda. I wouldn't say that I have any sharply negative adverse effects at this time but it certainly makes itself known to me. I understand that most don't feel anything the first week which is why this seems a little odd to me. Anyone with similar experiences?

One other thing is that my caloric intake has increased and I generally feel more hungry. Yesterday was 2,200 calories which is about 200 over what I target for. I suspect that I'm going to have to increase my activity levels if I want to eat more.

I also realized that I can reset my schedule on the weekends because I'm not taking the Xeloda. I set up with taking it at the same time daily, 12 hours apart. So I have to plan food, then the pills 30 minutes later. And I can't let other things interfere with this schedule. But I can change the schedule on the weekends because the weekends are little chemo-breaks.

The Radiology Doc called me in to ask how things were going and I said that they were going well. I described the effects of the Xeloda and asked about shrinkage. He said that 20% of patients get complete shrinkage of the tumor but it otherwise varies widely.

Awesome news, Mike! Hope things keep improving quickly, that is very positive