Meeting with oncologist tomorrow and exhausted-Updated

[JudeD59]

First of all, I have my appointment with the oncologist tomorrow to discuss whether I should have the surgeon take out my port during the reversal surgery. I only have a couple of questions for him, but if I get answers, it will help me with my decisions. First of all, I'd like to know what the stats are in studies for how beneficial it is to have Folfox 10 months after a LAR. My surgeon pointed out that studies show there isn't a lot of benefit found by the studies that have been done and my research has found the same. So why does he want to put me though chemo that clearly had a detrimental effect on my health if there isn't a clear and proven improvement in a lower recurrence rate? If he can point me to studies I have missed that have found that even 10 months after LAR, Folfox increases the odds of not having a recurrence, then I will be more supportive of his plan.

I have also been very curious about the fact that when I went in to see him in the end of December, he told me in no uncertain terms that he felt continuing the Folfox was not an option for me, even at a reduced dosage, and could land me in the hospital with kidney or heart problems, possibly for weeks or months. Yet when I went in for my appointment in the first week of January, he acted as though we'd never had the conversation and even though my blood test results were either only slightly better in some areas or not better at all in others, he was convinced I should try Folfox again at a reduced dosage. I want to ask him why he changed his mind and what his thought process was. He posts the summary of our visits online and I've read his notes on both visits several times and it's a complete about-face within two weeks time. I could understand if my kidney values had vastly improved or my WBC had shot way up, but there wasn't anything on the blood tests that had changed in a major way. My CEA remained the same as it had been the month before--1.6. Perhaps he has a logical and convincing reason, but he hasn't expressed it at this point and if he has one, I'd like to know exactly what it is.

I'm also going to get my port flushed out since I haven't had any IV fluids or chemo put through it since late December and I have some tenderness in my shoulder and arm the surgeon thinks might be caused by it.

As for the exhaustion, the effects of the chemo have finally worn off some and I've gotten a little bit more of my strength back, but all in all, it's been a brutal month. First, my youngest daughter had a tonsillectomy while she was home for winter break in mid-January and of course she needed her mom to take care of her. Watching her in such pain and not being able to make it go away was heart-wrenching. She was violently ill the first 24 hours and couldn't keep anything down, including her pain medication, so not only did the vomiting burn and tear at her throat, but she had nothing in her system to ease the pain even a little bit. After 24 hours, she was finally able to swallow the Percocets, but as anyone whose gone through a tonsillectomy and adenoid removal as an adult can tell you, it's brutal. I was running day and night trying to make her as comfortable as possible and got very little rest or sleep.

She headed back to NYU the middle of last week and I started to prepare for the barrage of tests and exams I need to complete before my reversal surgery on the 17th. Then, yesterday, completely out of the blue, my husband called me to tell me he was going in to see his doctor because he was having pain near his belly button. He called me after the appointment to say that his doctor had made appointments for him with a cardiologist at 3 and the surgeon who has done four of my surgeries at 5. At 5:30, he called to say that they found an umbilical hernia and he was scheduled for surgery this morning at 11:30. I couldn't believe they got him in that quick. I spent all of today at the hospital with him and then brought him home late this afternoon. The hernia was larger than they originally thought and had strangulated to a point that some of the tissue that was trapped between the muscles was necrotic. So now he has a good sized bandage by his belly button, a drain hanging out, and staples that need to be removed in two weeks. He also had problems with nausea in the recovery room, so they kept him there several extra hours. Because the tissue was necrotic, it can cause infection, so the surgeon didn't dare put in any mesh and complicate the situation further. He simply cut away the dead tissue and shoved the rest back in and then sewed the muscles back together. He said my husband has to go back in to see him on Thursday because we have to keep a close eye out for infection. He also said he might have to open him up again once the threat of infection passes and add some mesh to prevent the hernia from forming again.

So now I'm running around taking care of him, which I have always done throughout our marriage and which he has done so admirably for me since my diagnosis. I'm not complaining about needing to take care of him; I'm just so tired and worn out. I feel like I could sleep for a month straight. And I'm worried about tackling all these appointments, the leak test, and the reversal without him. Plus, I won't be able to take care of him as well when I'm recovering from surgery myself.

Okay, vent over. I feel better now that I've gotten it off my chest. He's finally been able to fall asleep and I'm going to try for some rest myself. As the day of surgery is generally the worst day, I'm sure tomorrow will be easier. At least I hope so, for his sake and for mine.

Thanks for listening to me whine, if you've gotten this far. It's four in the morning, there is no one else to complain to, so you guys are stuck listening to my ramblings.

Judy

[Sams wife]

Hope you are getting some rest before your appointment. You have been running, haven't you! And I hope he gives you an answer about changing his mind within the 2 weeks.

I was thinking ( i guess hoping) a hernia surgery might be a "little" surgery. hope he gets to feeling better soon. So many different out comes of the same surgery. It would be nice if they were cut, paste & done.
Good luck today & I hope you get some sensible answers!

[Sams wife]

Hope everything went ok & you got a plan now.

[daughterseekinginfo]

I don't why when it rains, it must pour. That really is a lot to handle on top of everything you and your body are going through. I don't have any advice; I just wanted to say I admire how you take care of your family and that I hope you get the chance to rest a little (and some reasonable answers from your doctor).

[JudeD59]

Thanks, Sam's wife and Daughter. I appreciate the replies and the concern.

Things are better today. Hubby is up and walking around. Not in too much pain and able to eat. Since I did the night shift, my daughter took the day shift looking after him and once I came home from the oncologist, I slept for about four hours. Haven't slept that well for a long time.

Got some answers from the onc, but nothing definitive. He said he forgot that my surgery was in June since I didn't come to him for first chemo treatment until November. He forgot I had to wait all that time for incision that came open to close before starting. He said 10 months was a long time after LAR to give chemo and with the way my body has such problems processing it, he didn't see any way I would be able to handle the full eight treatments. He also said the only reason he was being so aggressive with the chemo was because of my high CEA. If my CEA hadn't been so high, he would have just said absolutely no more treatments after the problems with the first one. So now he says he highly doubts I will be able to have anymore Folfox, even without the ileostomy. BUT, he doesn't want the surgeon to remove the port just in case. He wants to meet with me four weeks after the reversal and discuss it again then. He is going to research the studies on effectiveness of chemo this far out after LAR in the meantime. Even though he said repeatedly that he was almost positive I couldn't tolerate another treatment.

I will say I felt like he really listened to me today and respected my questions. He didn't brush anything off and tried to answer them completely. I asked him if I didn't do any more chemo, would he test my CEA every three months and schedule a CT scan for six months and he said he would like to test my CEA more often than that, preferably once a month for awhile. I liked that he was being aggressive in his follow-up care. Usually, my husband or my husband and my daughter are with me and he is very social, gabbing about cars, vacations, movie theaters, and stuff. Today, I was by myself and he was all business and took me seriously. It was a good experience.

Then I was supposed to have my port flushed and blood drawn from it for testing. They worked on it for over an hour and could not draw blood from it. They tried several different drugs that are supposed to break up any sludge in there, but nothing worked. Finally, she left the medicine in the port and drew blood for testing from my arm. I asked if I should come in next week and let them try again since I won't be having anything flushed through it for about six weeks at least and she said no. She also said if the pain in my arm and shoulder gets worse, call them and they will set up an ultrasound to check for clots.

That's all for now. Onward to the leak test, full speed ahead.

Judy

[DarknessEmbraced]

I'm glad that your oncologist answered your questions and being aggressive in your follow up care. I hope the pain in your arm and shoulder get better!*hugs*

[Lydia666]

I would take the port out since it's giving you trouble. I am glad you had a productive meeting.

[JudeD59]

Thanks Darkness and Lydia. Took hubby in for his appointment with surgeon today, who just happens to be same surgeon who put in my port. He took a look at it and said it looked fine and said not being able to draw blood from it wasn't anything to worry about.

Oncologist called with my CEA results and he was very excited to tell me it's holding steady at 1.7. I also read his online notes from our appointment and they said-

"She is scheduled for reversal of her ileostomy in the near future with Dr. --------.
We have discussed adjuvant treatment at length again today. There is at least a theoretical possibility that she would tolerate treatment better from hydration standpoint after reversal of her ileostomy. If adjuvant treatment was resumed, this would be at a prolonged distance from her original rectal tumor resection due to prolonged recovery from that surgery. This interval would decrease the effectiveness of adjuvant chemotherapy. There also is a high likelihood that she would not tolerate further adjuvant chemotherapy even at moderate dose reduction.
I will see her again following her ileostomy reversal. We will again discuss whether to pursue adjuvant treatment at that time. We are concerned about the level of her CEA prior to resection of her rectal cancer and the resultant risk for distant metastatic disease in the future."

That pretty much sums it up. My WBC and RBC are still too low and my creatine is too high and it's been two months. The only reason he is even considering more chemo is because of my stupid high CEA before surgery.

Judy

[Dana123]

I would consider seeking a second opinion to get another view of your history and future treatment. They're commonly sought and it may provide some comfort about current plan or some other ideas.