How do I choose the best oncologist?

[Lara239]

okay! Now I am really starting to understand it all! I am going to be an expert soon on all this soon I hope! a lot to take in...whew!
Is it possible for my husband to work during chemo. I hope he can. He is not protected my FMLA or short term disablity because he has not been with his company for one year yet (will be one year in November). He does have a desk job but has a lot of responsibility (director level). he is on an approved personal leave right now for one month to recover from surgery. I know that his company will work with him if he needs to work from home (he can already do that now even before cancer diagnosis if he wanted). I am just wondering how easy it is to work while going through all this but unfortunately if he does not work we will not have any benefits so it is necessary for his treatment...worried about it.

[janklo]

You know another question I would ask. . .what is the 24 hour coverage? If you have a problem at 2 am or on the weekend, who can you call? What ER would you go to? Many people during chemo will have a reaction or a fever or some other problem and you will need to call at 2 am or on the weekend and in my daughter's case, at two oncology offices, she had one person, a specific nurse, that she could call 24 hours a day. I think that's valuable.

Also I'd say your husband can count on being able to work pretty well during the majority of chemo. The effects are cumulative, so at the end, he may be too tired.

[tam]

How did I pick my oncologist? Location. I had breast cancer in 2002 and knew what it was like having 42 appointment for radiation. So I wanted somewhere I could drive myself the entire time I was in treatment, didn't have to get up real early to get there and some place in the Cleveland Clinic practice. My oncologist is close to home and parking is free. Cleveland Clinic is big enough if I didn't like her there are other doctors close. It was important to have all the doctors in Cleveland Clinic. I had a ct scan in the morning with two afternoon appointments. All the doctors had the scan the same day.



Tam
Breast cancer 2002
Colon Cancer CC3

[Surroundedbylove]

Bill wrote:


FOLFOX 6:
OXALIPLATIN........100 mg/m2 IV over 120 minutes Day 1
LEUCOVORIN........400 mg/m2 IV over 120 minutes Day 1 (concurrently with Oxaliplatin Day 1)
FLUOROURACIL.....400 mg/m2 IV bolus, after leucovorin Day 1
FLUOROURACIL....2400 mg/m2 CIV over 46 hours (pump) Days 1 & 2
FREQUENCY....... Repeat every 2 weeks for 12 cycles (24 weeks total)


Wondering about the bolus in this folfox 6, also folfox 4 has it.
So when the onc says folfox 6, is this what he is talking about?
What is bolus?

Thanks!!

Yes - this is the standard FOLFOX6 regimen. It is sometimes modified as well.

A bolus is when they give you an amount relatively quickly there at the office. Notice that it is a bolus of 400 mg/m@ on Day 1 (that amount I recall was infused over something like a 15 minutes - maybe even less) and then the remaining 2400 mg/m2 is infused by the pumo over 46 hours - so much more slowly.

[waw4]

So when the onc says folfox 6, is this what he is talking about?
Wondering about the bolus in this folfox 6, also folfox 4 has it. What is bolus?

Yes. There are also steroids and anti-emetics given via IV.

Bolus is a push of a fixed amount of the drug via hyperdermic into your port via the IV system. It's like getting a shot only using the IV tubing into the port instead of using a needle (as opposed to the drip infusion from the IV bags). The bolus only takes a minute or 2 and is done by hand.

So first a needle is inserted into your port and then your port is flushed with a saline solution. IV bags are set up and you get steroids and anti-emetics for 20 minutes. Then Oxaliplatin and Leucovorin bags attached and infused for 2 hours. Then your port is flushed again and your port is injected with the bolus, following which your pump is attached and you head home for 2 days before returning to have the pump disconnected.

With FOLFOX4 you go home for 1 day and return on day 2 for another 2 hour round of Leucovorin, another bolus, and then off you go again with your attached pump. For both FOLFOX4 & FOLFOX6 the pump is disconnected on day 3.

[WorriedWife]

Wow Bill, that sounds....like...ummm, scary? I don't know if I could sit there and watch them do this to my husband I know I should probably have the attitude like... Yes!! This is ok because it will kill any escaped cancer cells. I'll work on that if my hubby does chemo! Thanks so much for explaining that! You know, I would never, ever know all this very important information if I did not discover this place!!

We are meeting with our 2nd opinion oncologist tomorrow, so Lara, if you read this, I am glad you started this thread, I got a few more ideas to add to my 2 pages of questions I have for him!

[SkiFletch]

Lara, many of us are/were able to work nearly full-time through chemo, especially when desk-jobs are involved. I personally only took off from work on infusion day (wed). I also worked out with my employer to have nap time on lunch on disconnect day (friday) so I could work a mostly full morning/afternoon. Taking a little over an hour nap then allowed me to finish the day. They tried to convince me to go home (paid) after lunch but I was stubborn and wanted to stay . I did have to convince my oncologist to allow me to self-disconnect. It took a lot of convincing but I was able to do it. While I realize that the port represents a path directly to your heart and you have to respect that and be sure of what you're doing, the actual act itself of removing the port-access needle is a very simple procedure. Close some squeeze clamps, remove the pump, screw on a saline flush, open clamps, flush, re-clamp, change saline for heparin, open clamps, flush again, close clamps, and pull the needle out. Anyone with opposable thumbs can do it . I had to agree to always do it in the presence of someone else who was reading the instructions as I was doing anything and was ready to call paramedics if something went wrong, but it was painfully easy. It also removes that checkup and possibility for extra fluids from the doc in case he's feeling nasty on a disconnect day (which can happen) but the whole DIY thing ended up working for me.

I would reccomend a wed infusion. That way his worst times for fatigue will be Fri night, Saturday, and Sunday morning. Sucks that you "loose" a weekend but it makes it easier to not miss work this way. Hope that helps

[Lara239]

Wow Bill, that sounds....like...ummm, scary? I don't know if I could sit there and watch them do this to my husband I know I should probably have the attitude like... Yes!! This is ok because it will kill any escaped cancer cells. I'll work on that if my hubby does chemo! Thanks so much for explaining that! You know, I would never, ever know all this very important information if I did not discover this place!!

We are meeting with our 2nd opinion oncologist tomorrow, so Lara, if you read this, I am glad you started this thread, I got a few more ideas to add to my 2 pages of questions I have for him!

I dont think it is scary...it is life saving so you have to think of it that way. My in laws are here and said something very wise to me. They said when my husband is going through chemo and is looking/feeling sick that I should imagine that the chemo is killing cancer cells and not worry too much about his condition (but of course make sure he gets the proper rest/nutrition..etc...) at the moment. that made me feel better.

[Lara239]

Lara, many of us are/were able to work nearly full-time through chemo, especially when desk-jobs are involved. I personally only took off from work on infusion day (wed). I also worked out with my employer to have nap time on lunch on disconnect day (friday) so I could work a mostly full morning/afternoon. Taking a little over an hour nap then allowed me to finish the day. They tried to convince me to go home (paid) after lunch but I was stubborn and wanted to stay . I did have to convince my oncologist to allow me to self-disconnect. It took a lot of convincing but I was able to do it. While I realize that the port represents a path directly to your heart and you have to respect that and be sure of what you're doing, the actual act itself of removing the port-access needle is a very simple procedure. Close some squeeze clamps, remove the pump, screw on a saline flush, open clamps, flush, re-clamp, change saline for heparin, open clamps, flush again, close clamps, and pull the needle out. Anyone with opposable thumbs can do it . I had to agree to always do it in the presence of someone else who was reading the instructions as I was doing anything and was ready to call paramedics if something went wrong, but it was painfully easy. It also removes that checkup and possibility for extra fluids from the doc in case he's feeling nasty on a disconnect day (which can happen) but the whole DIY thing ended up working for me.

I would reccomend a wed infusion. That way his worst times for fatigue will be Fri night, Saturday, and Sunday morning. Sucks that you "loose" a weekend but it makes it easier to not miss work this way. Hope that helps

Ski. That DOES make me feel better! My husband is healthy and strong and I am going to make sure he gets the very best nutrition so he can handle chemo during this time. I work at home so I can help him. Like I said earlier...the main problem is that he is the main breadwinner and all our benefits are through his company so he cannot lose his job. His manager called me yesterday to find what his prognosis was which I thought was a little odd but I know he means well. he has been very supportive so far (sending a lot of gifts and things to us) and said he will always have a job there. When he was first hired his manager told him he could work from home sometimes if he liked it (this is before he knew he had cancer) so this seems like it would be a reasonalble accomodation during chemo. I guess the whole fact that we are not currently protected by FMLA or short term disablity just makes me super nervous.

[SkiFletch]

I am going to make sure he gets the very best nutrition so he can handle chemo during this time

This is admirable and wonderful of you Lara, but I need to prepare you for the fact that your husband will NOT be eating "healthy" 100% of the time on chemo. Folfox has a really nasty habit of ruining taste buds, especially for the first 5-7 days of each cycle. Everything tastes like frigging chalk. It's really annoying, going on the verge of miserable. Your husband is going to have cravings like a pregnant woman that may seem totally odd to you and even him. The important thing during these times is to let him have whatever he feels like he wants. All of a sudden a craving for a double cheeseburger? Go for it, grease and all. Bacon for dinner? Sure thing. Crazy sugary kids drinks, have at it. Calories are more important than "quality" of the nutrition.

Specifically what the cravings are vary a lot from person-to-person but one thing most of us agree on is that folfox really deadens your taste buds. I found I had to load things up with salt, pepper, sugar, whatever to make them taste good. I also had an almost constant craving for INSANELY HOT mexican/indian/thai foods. I would go to like an Indian restaurant and ask them to make it hot. They would give me that "does this white guy know what he's asking?" look and I'd just smile and say yes please, as hot as you can. My nose would run and I would get lots of phlegm from it so I knew it was hot, but I could barely taste the spice, it just tasted good to me. Regrettably I never ate a ghost chili while on chemo. I probably could have handled it and would have been able to say I ate one . I did eat a habanero whole, seeds and all. Tasty. I also found myself drinking concentrated hot chocolate, full sugar juicy juice and capri suns, as well as lukewarm ginger ale. Diet stuff tasted like stale water to me, yuck.

My point is, calories over quality when on chemo especially during that first week. In the off week, things will return to normal from an eating and taste level which is nice and he can eat "healthier" but it's beyond OK to eat what he wants to get calories in him.

[Lara239]

I am going to make sure he gets the very best nutrition so he can handle chemo during this time

This is admirable and wonderful of you Lara, but I need to prepare you for the fact that your husband will NOT be eating "healthy" 100% of the time on chemo. Folfox has a really nasty habit of ruining taste buds, especially for the first 5-7 days of each cycle. Everything tastes like frigging chalk. It's really annoying, going on the verge of miserable. Your husband is going to have cravings like a pregnant woman that may seem totally odd to you and even him. The important thing during these times is to let him have whatever he feels like he wants. All of a sudden a craving for a double cheeseburger? Go for it, grease and all. Bacon for dinner? Sure thing. Crazy sugary kids drinks, have at it. Calories are more important than "quality" of the nutrition.

Specifically what the cravings are vary a lot from person-to-person but one thing most of us agree on is that folfox really deadens your taste buds. I found I had to load things up with salt, pepper, sugar, whatever to make them taste good. I also had an almost constant craving for INSANELY HOT mexican/indian/thai foods. I would go to like an Indian restaurant and ask them to make it hot. They would give me that "does this white guy know what he's asking?" look and I'd just smile and say yes please, as hot as you can. My nose would run and I would get lots of phlegm from it so I knew it was hot, but I could barely taste the spice, it just tasted good to me. Regrettably I never ate a ghost chili while on chemo. I probably could have handled it and would have been able to say I ate one . I did eat a habanero whole, seeds and all. Tasty. I also found myself drinking concentrated hot chocolate, full sugar juicy juice and capri suns, as well as lukewarm ginger ale. Diet stuff tasted like stale water to me, yuck.

My point is, calories over quality when on chemo especially during that first week. In the off week, things will return to normal from an eating and taste level which is nice and he can eat "healthier" but it's beyond OK to eat what he wants to get calories in him.

I could not agree more. I will take note of this advice and let him eats what he wants during the chemo weeks as calories...i do believe are the most important! You give the greatest advice...much appreciated!

[justin case]

is that healthgrades.com website even reliable?

I posted on healthgrades some less than perfect comments about my previous onc. I was not derogatory, or even that critical, and they were never added to the comment section. I (think) it might be a paid entity. I would use their information with digression.
Regards,
Michael

[Lara239]

is that healthgrades.com website even reliable?

I posted on healthgrades some less than perfect comments about my previous onc. I was not derogatory, or even that critical, and they were never added to the comment section. I (think) it might be a paid entity. I would use their information with digression.
Regards,
Michael

really, wow....did not know that. How about Vitals.com?

[juliej]

My in laws are here and said something very wise to me. They said when my husband is going through chemo and is looking/feeling sick that I should imagine that the chemo is killing cancer cells and not worry too much about his condition (but of course make sure he gets the proper rest/nutrition..etc...) at the moment. that made me feel better.

I always thought about it this way -- "if I feel this bad, imagine what the cancer feels like!" It really helped me get through some rough times.

And about food -- Fletch is right. Your taste buds are completely zonkers on chemo. It's hard to find things that taste at all and some textures are revolting. Try different things and see what works for him.

[justin case]

is that healthgrades.com website even reliable?

I posted on healthgrades some less than perfect comments about my previous onc. I was not derogatory, or even that critical, and they were never added to the comment section. I (think) it might be a paid entity. I would use their information with digression.
Regards,
Michael

really, wow....did not know that. How about Vitals.com?

I use the various websites to get an idea about education and years of practice. It would be illegal to mislead anyone in this regard. As far as Vitlals.com, I have no idea. My original onc saved my life, and probably shortened my treatment time with his prowess. I did not like some the office staff, as they treated me like a child. A 56 year old man does not like to hear, oh lookey, we have new shoes Or sit in the office for 2 hours, and the nurse says, everyone can come in now, and when you stand up, they say, everyone but you. The place was run like an elementary school
Regards,
Michael