More confused after MD Anderson eval than before....

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Kzinti

Re: More confused after MD Anderson eval than before....

Postby Kzinti » Tue May 21, 2013 10:30 pm

Christy,

I've been getting treatment at MD Anderson for Stage IV colon cancer a little over a year, and my experience is definitely different than yours. My oncologist answers all of my questions and, if I think of any afterward, I send an e-mail. I've had only great care there so far.

One thing you might want to do is sign your hubby up for an account at mymdanderson.org. I'm assuming you got a Medical Record Number during your visit (I know mine at least as well as I know my driver's license and social security numbers now). With that Medical Record Number, you can set up an account on mymdanderson.org. This allows you to have access to your medical records, your financial information, your appointment schedule, and, more importantly for your purposes, secure messaging that allows you to e-mail about clinical, appointment or other information, and the e-mail goes to the correct person for the subject.

Regards,

Kzinti

Christylyn
Posts: 18
Joined: Fri Apr 26, 2013 3:29 am

Re: More confused after MD Anderson eval than before....

Postby Christylyn » Sat May 25, 2013 1:22 am

Well, even after seeing the new, local medical oncologist AND meeting with the radiation oncologist AND reading everything on here, I am still confused about staging. The local oncologist (who we have decided to go with instead of MD Anderson) says that all of the results thus far indicate this is T3 and then stage 2 and they think there is no lymph node involvement. What I THINK I'm getting from everyone is that chemo and radiation are needed prior to surgery when they feel like there is lymph node involvement. However, they have set my hubby up for radiation--they mapped him the same day we had the appointment since we live a few hours from the city and they were trying to save us another drive in. We were at Rocky Mtn Cancer Center for about 9 hours total with seeing both docs and then the CT and mapping stuff. They also got us set up at that appt. (on Wed.) for his chemo. He'll be taking Xeloda twice a day. They told us it would be 1-2 weeks before we receive it because it has to be shipped to us from the company--I guess you can't just go get it at the pharmacy. They also explained that we would likely have to pay a good chunk out of pocket for it since we don't have any supplemental insurance and just have Medicare. On Thursday I got a call from a pharmacy tech. telling me they'd received the order and just needed to get some info and a payment and they'd be shipping the Xeloda overnight via Fed Ex. I was thrilled to find out that Medicare covered 80%. What we had to pay was still a chunk, but not nearly what I feared it might be. They said he'd start radiation and chemo at the same time and asked me to call our nurse navigator as soon as I knew the chemo was on it's way. He'll do 5.5 weeks of chemo/radiation and then have 6 weeks off before surgery. This doctor says he see's no reason why any ostomy would be necessary and can't figure out why the surgeon at Anderson said it would be. He's referred us to a surgeon here who he says is pretty much the only colo-rectal surgeon in southern Colorado. He said the others are really general surgeons and while many are great surgeons, this guy does only colo-rectal surgery and that's why he prefers him. I haven't done any research on that, but the referral is to a Dr. Delano in Colorado Springs. There was much discussion about chemo and radiation prior to surgery reducing tumor size, but it seemed what he was mainly saying was that the patient tolerates the surgery and has a far better outcome when radiation is done before rather than after. He also said they'd do some chemo after, but it would be infusion, not the pills like he's going to take now. I'm not even going to pretend I understand most of it. My brain just feels overloaded. I bought a 3 ring binder with dividers as several people recommended and have been slowly putting all of the records we have so far into it. I've quit researching and looking for info online because it just confuses me more. I'm trying to just go one day at a time and learn what I need to know right then and I'm hoping that by the time we get thru the chemo and radiation parts of this I will have absorbed enough that I won't feel like a raving idiot like I do right now! Thank you once again to everyone for all of the info and knowledge you're sharing!!!!!!!

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: More confused after MD Anderson eval than before....

Postby weisssoccermom » Sat May 25, 2013 9:52 am

Christy,
I had a nice post but it just went poof and disappeard so will try again. First of all, I want to reassure you that with your husband being staged at a T3N0M0 -or a stage IIA - YES neoadjuvant (presurgery) chemoradiation IS generally recommended. This treatment is not necessarily tied to lymph node involvement. Generally speaking, stage I patients are the only group that doesn't routinely get neoadjvuant chemoradiation so feel comfortable that what you are being told is the gold standard of treatment.

As for the Xeloda, that also is routinely given to patients during chemoradiation. Although it is in pill form, it doesn't fall under the pharmacy benefit for Medicare but rather under Part B which is why Medicare is paying for it. Because it is under Part B, I believe that Medicare requires you to receive this drug from their 'preferred' sources rather than obtaining it at your local pharmacy. Just an FYI though....those of us not on Medicare though do receive it from our local pharmacy. The manufacturer has a wonderful program to help with copays but not sure Medicare is included in that. I will try to post the link for that program.

Moving on to the surgeon. I checked the name that you provided (it is, I assume a Dr. Benjamin Delano). Yes, he did a fellowship in colon and rectal surgery BUT.....as far as I can tell, NO he is not board certified yet in that area. Now, that doesn't mean that he isn't in the process of obtaining that certification but as of yet, no he has not. If you look back at my previous post, you will see that I supplied you with a link to verify a surgeon's credentials. You can also supply a city, etc. to find a doc who IS certified.

You are hearing most of this information apparently from the onc and NOT the surgeon. The fact that the onc stated only 6 weeks off before surgery concerns me. That is the 'old' rule of thumb and not the newer thinking. Generally speaking, surgeons prefer to wait 8-10 weeks after the completion of chemoradiation before doing surgery. You need to understand that chemorad treatments continue to work long after the patient is done going for those treatments and research has proven that waiting a few weeks past the 6 week window actually benefits the patient. As for the onc telling a patient that he/she doesn't need an ostomy....leave that to the surgeon. I get so angry when surgeons start doing the onc's job (actually telling patients whether or not they need chemo) and onc's doing the surgeon's job. The onc is NOT in the surgical suite....he/she doesn't do surgery so go with what the surgeon says regarding timeframe, ostomy, etc.

I am going to send you a PM because it seems that there are things you are still confused about. Perhaps I can help as I have been down the same road you have many years ago. Like your husband, I was also diagnosed originally as a stage IIA but much later, my surgeon said that really, in her opinion, I should have been a late stage I. Who knows really what my clinical staging was and it is a mute point because I received treatments as though I was a stage IIA.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

Christylyn
Posts: 18
Joined: Fri Apr 26, 2013 3:29 am

Re: More confused after MD Anderson eval than before....

Postby Christylyn » Sat May 25, 2013 12:27 pm

Jaynee.

Thank you so much for taking the time to give me a better explanation. I swear...I have always considered myself (and my hubby) to be intelligent, capable and on the ball. Right now we're both feeling like two ding dongs floating without a raft. There's just so much to try to comprehend and remember! If I didn't have this board to come to for help I think I really might lose my mind! We're both at the point of exhaustion and things really haven't even gotten started!!!

Yes, we are hearing ALL of our info from the medical oncologist and the radiation oncologist. We have not yet seen the surgeon (Delano) that they've referred us to. Question regarding the surgeon....Since he is not currently board certified, am I out of line asking his office if he is in the process of certification? I don't want to ruffle feathers, but I also want to be sure my husband is receiving the best care we can obtain. It concerns me a bit that we've been referred to someone who isn't board certified.I'm going to refer back to the link you shared and see who else is in our area. The med. oncologist did say 6 weeks off before surgery and that's the same window the surgeon at MD Anderson gave us. The Anderson surgeon did say that it also depends on where he's at as far as recovering from the radiation before they actually schedule the surgery. She then flip flopped and said no radiation or chemo prior and she wanted to go straight to surgery. I am much more comfortable with the chemo and radiation prior as everything I read and have been told tells us that this will give hi the best possible outcome.

Since you have been down this road, too I wonder if you can tell us what to expect once he starts the Xeloda and the radiation? All the oncologists have told us is that he may have some diarrhea, which he should take Immodium for and that he will probably see increased fatigue and possibly some low level nausea. He is already experiencing pretty significant fatigue, so worsening would really knock him off his feet. How long does that last after you've completed the therapies? The doc's office recommended that he make major dietary changes to include the most nutrients he can in every bit of food he eats. (He has pretty intense loss of appetite and has lost a good amount of weight already.) They also want him to pack in the protein however he can so I am now including a protein powder in his smoothies every morning and evening. I'm worrying about him losing his appetite more as well as taste changes and how to get the right things into him to keep him as healthy as possible thru this. They also mentioned using lotion on his hands and feet several times each day whether he thinks he needs it or not because of skin changes that take place. Not sure if that's from the radiation or the pills, tho. I'm reading from other posts that people experience a lot of discomfort from burns from the radiation and would like to be prepared to make sure he's comfortable in that respect. I'm thinking how miserable a sunburn on my shoulders and legs is in the summer time and then imagining how much worse that must be if it's in the rear end area. I just can't even imagine.

On the prescription help from the Xeloda manufacturer....The pharm tech who called did go over that. Unfortunately, they go by your last income tax return and I was still working full time as well as getting commissions then and hubby part time, so we don't meet the income requirement. Of course, our CURRENT income in nowhere near that. We are fortunate that we have some money saved for retirement and can tap into that, but judging by the bills that are already rolling in....well, that money isn't going to last long and then we're looking at the remainder of our retirement years with little or no savings. I was hopeful that we could make monthly payments on much of this but am finding that every time they schedule a test or anything the hospital is calling in advance to obtain his 20% copay. While they've been relatively small co-pays thus far-----yesterday's ultrasound was $37.00---it adds up fast! Xeloda does have another program, too but you aren't eligible of you have Medicare. I'm just thankful that we had the money to pay for it and he will have it now and hopefully the infusion chemo after surgery will be covered, too. I'm really worrying about that.

I know I keep saying this over and over to everyone, but I just can't express how much I appreciate the time you're taking to help walk us thru this. I feel at times like we have no real support at all even tho we do have friends and family who are doing their best to help us. They don't understand and I'm careful how much I say about everything with most of them. While they are all well meaning, we have been starting each day fielding 15 phone calls from the assorted family members or friends who want to know what's going on and what we've found out. The constant talking abut it and answering questions just feels like a burden right now. I know I should not feel that way and should be grateful we have people who love us and want to be there for us, but it feels like one more overwhelming task right now to talk to everyone and keep everyone filled in constantly. There's no "down time" for us where we can just NOT think about cancer, if that makes sense? I've always been "The Strong One" on my side of the family and he is the same for his side. People expect us to handle this the same way we do everything else. I'm not feeling at all strong, tho. I'm feeling instead like I just want to curl up and cry most of the time. I'm holding back tears every time people start questioning me and yet no one seems to see that and know I need a break from talking about it non stop. Yesterday I was at the pharmacy picking up an antibiotic for my 8 year old and the pharmacist gave it to me, then reached his hand over and placed it on top of mine. He said, "I just want you to know that we're keeping you all in our prayers and if I can help in any way, just ask." Just that simple act of compassion from someone who I really only know because he doles out our medicine now and then was enough to send me into a burst of tears right there. What I'm wishing is that one of those friends or family would call my husband and forget he is now a "Cancer Patient" and instead would just say, "Hey, wanna go fishing?" I'm wishing they would call me and just say, "Hey, let's go shopping and have lunch today." I wish they'd call and offer to take our little girl to do something fun for the day instead of trekking along with mom and dad to this doctor or that doctor or to the hospital for this test or that test. Instead, they're calling and keeping us both continually focused on cancer and sickness and all of the what if's and I hope not's and all of that. How do you refocus that? How do you let them all know that although you appreciate their concern and you know they're all trying to help, what they're really doing is making it harder??? Is it way out of line to just say, "Hey, you know what would really help us out? If we could just talk about anything on earth EXCEPT living wills and chemo side effects and whether or not my hubby is going to be able to walk down the stairs every morning and out the door to feed horses or shovel manure and what we're going to do if he can't? Can we not talk about how you read that radiation may cause him to lose sexual function? Can we forget that you heard from a friend that his diarrhea will be so bad he won't be able to leave the house? Can we just stop sending him the emails about some 'Miracle Cure' that you found on the internet and how he should try it before he decides to do what his doctors are advising?" I'm sorry for the little rant. This has just all been building inside me and I'm reaching my breaking point, I guess. I don't want to offend family or friends and so I feel like I can't say what I want to say. Everyone here has been there and I know you all understand and am hoping you can give me some advice on that, too. I just want life to be as normal for us as it can be, especially for our little one and for my hubby. I will continue to stand int he shower and cry or go for a walk in the woods and throw rocks at tree's and cuss at twigs and sticks but I know I am fast reaching the point where I am going to lose it when someone says something to my husband or kids that cause them to be more worried. There has to be a "good" way to handle that!

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kellywin
Posts: 492
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Location: Northern CA

Re: More confused after MD Anderson eval than before....

Postby kellywin » Sat May 25, 2013 1:14 pm

Christy,

I can give you some insight as to what I experienced with chemo/radiation prior to surgery. I did 5.5 weeks of Xeloda & radiation. Honestly, the anxiety over waiting for the side effects was worse than then side effects. Now everyone is different, some experience a harder time than others, but to me chemo/rad was the easiest part of the whole process. Xeloda did nothing to me, no rash or issues on my hands or feet, nothing. Radiation isn't fun and toward the end there is some definite issues when going to the bathroom, can be pretty painful. And there is some burning/peeling in areas that you wouldn't expect to peel. But through all of that I worked every day, went snow skiing 3 times and generally did what I wanted.

My surgeon said that he could do surgery as soon as 4 weeks after radiation, he is a very great colo-rectal surgeon and keeps up to date on all the latest techniques. He said generally the best window for surgery is 4 - 6 weeks. There are differing opinions on this I've seen on this board, but this is the general practice around here. I had surgery 4 weeks on the nose after radiation, it was laparoscopic and I didnt need and ileostomy. My surgery was very successful.

This process is very overwhelming, but try and stay focused on getting your arms wrapped around the treatment plan and then take each phase in steps. Focus on chemo/rad first, get that under your belt and then you and your husband will have time to recover and focus on surgery and so on. There is a lot to absorb and everyones experience is different, different doctors have different methods, but it sounds like the plan they have laid out is generally the norm.

Just my 2 cents.

Good luck to you and your husband. Feel free to PM me if you want.
Kelly, mom 14 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only

weisssoccermom
Posts: 5988
Joined: Thu May 10, 2007 2:32 pm
Location: Pacific NW

Re: More confused after MD Anderson eval than before....

Postby weisssoccermom » Sat May 25, 2013 2:37 pm

Christy,
As I said....I've been down the exact same road that you are now travelling and YES, it is overwhelming and oftentimes scarey. I only wish that I had found this board to be able to get some help while I was going through my treatments. I did find another board and learned a whole lot about radiation and its side effects.....something which I am PASSIONATE about and have actually worked with my local rad onc to help them to better inform patients of the side effects.
YES, there are things you should/shouldn't be doing & eating while on chemoradiation. I don't know if you saw my PM or not but I would really like to try and give you the info that you need to help you get through all of this one step at a time. One bright spot.....at least your husband is a male! (Now, doesn't that sound stupid???) I say that because females and pelvic radiation have their own unique set of issues.....ones, frankly, that just be glad your hubby doesn't have to experience.

Can you tell us exactly where you are located? It might help since another member may have a recommendation for a surgeon in or near your area.

One thing to remember is there is absolutely NOTHING wrong with getting a second opinion....whether it be from a surgeon, an oncologist or your GP. Your husband needs to trust and feel comfortable with the surgeon and the onc so don't feel that it is absolutely necessary to go with a surgeon that your onc recommended. Not saying you shouldn't ....just that this isn't about the onc....it's about your family and what you feel comfortable with.

Again, don't let the onc's recommendation or opinions sway you and your husband. Talk to the surgeon....it can't hurt and YES, by all means ask WHY he isn't certified. If I remember correctly, he graduated medical school 10 years ago. He is board certified in general surgery and yes, he completed his fellowship in colon and rectal surgery so perhaps he is in the process of getting his board certification?? I would ask and if he is not, I would ask WHY? Colorado Springs is not that far from Denver....have you considered going there for a surgical consult? It's not at all uncommon for a patient to have his/her surgery in one location and the onc/rad onc closer to home. For example, I kept my local onc as well as the local rad onc practice but had my surgery done in Seattle. I did go to Fred Hutchinson Cancer Center but honestly, for a 'garden variety' early stage cancer....there wasn't any difference in the treatment options with their onc/rad onc versus my local ones. Do what you feel most comfortable with....but no, it's not at all uncommon to get one's surgery somewhere else.

With respect to the timing of surgery....don't worry about that right now. There IS time for you to find a surgeon....it doesn't have to be done now by any means. There is no rule that says you must have your surgeon all lined up when you begin your chemoradiation. As for the timing....it is now considered the gold standard and the standard of care to wait the 8-10 weeks to allow the patient to not only heal but to allow the radiation to have time to continue doing the job it was intended to do. Of course, there will be exceptions but my point is this. Your husband will have to have more testing done before he actually starts chemoradiation. Then there are the actual treatments themselves. So far, you're looking at at LEAST six weeks, if not more, until the actual treatments would be ending. Nothing about this process is necessarily quick! After the treatments are done....then there's more time before surgery. My point is you're most likely looking at about 14 weeks before any surgery......and that's at the very earliest. It's great to start looking for a surgeon but it isn't absolutely necessary that you find just the right one before he starts his chemorad treatments.

I might also suggest that you not worry about what his treatments will/won't be down the road. Take all of this one step at a time. Right now, just concentrate on getting through the chemorad treatments and don't worry about anything else. It won't do you any good to stress about all the what ifs down the road. There's really nothing you can do about them anyway.

One last thing to consider. What type of patient is your husband? Is he the kind that gives total control to the doctor? Perhaps he is the kind who wants some input/information but ultimately allows the doctor to make all the decisions? Is he maybe more of the kind that really wants to be a part of his health care decision team? I ask this because depending on the type of patient he is (and you as well factor into this), your choice of doctors is important in working with them long term. There is no right or wrong as to which type of patient is better...it's totally dependent upon the personality of the patient. Having the right type of doctor who will work with you and your husband's personality will make this process be much easier for all concerned if you have this 'figured out' from the very beginning. For example, I am a patient who wants to be a total member of my health care team. I don't need a doctor who isn't willing to work with me.

I don't know if you got the PM I sent you. If not, you might want to find it and read it. I know it's easy to want to find out all the information you can but I might suggest you be careful of Dr. Google. You'll find some frightening information there...stuff that really can scare the heck out of a newbie. Just be aware of that.
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness


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