Oncologist visit

[JudeD59]

Brief recap for those who don't know my story--rectal cancer, radiation/chemo, LAR with incision that came open and delayed first chemo infusion for a couple of months, did first Folfox infusion in November and it knocked me for a loop, oncologist kept delaying second infusion as he waited for my blood counts and kidney values to recover but they didn't, onc recommended going in for my ileostomy reversal thinking that I would handle chemo better if I could stay hydrated and get more nutrition, so I had reversal February 17th.

Today I met with onc to discuss my two options--try Folfox again at a lower dose with the risk of ending up in hospital with kidney failure or worse or stop chemo and risk recurrence or spread if microscopic cancer cells are still floating around my body. Onc told me today he doesn't recommend more chemo for me unless my CEA goes up or something shows up on my CT scan scheduled for two weeks from now. He said it did too much damage to my healthy cells, in Europe they don't even do adjuvant chemo for Stage II rectal cancer, it's controversial here in the USA with some doctors still doing it and other feeling it's not worth it, and so much time has passed since my surgery that it probably would do more harm than good. I have read studies that found no difference in the rate of recurrence between Stage II's who did no adjuvant chemo and those who did it more than four months after LAR. I would feel better if I had done the full eight treatments, but I had no control over the situation--I couldn't stop my incision from coming open and delaying things and I couldn't help the fact that my body reacted so badly to the first infusion. It's been four months and of the sixteen things they test in the blood count, nine of mine are still out of whack. My hemoglobin is still only 9.4, which is why I feel so tired and lousy most of the time.

So I'll have my CEA results either tomorrow or Friday and CT results in two weeks. If something shows up, I'm not sure if he'll try giving me the Folfox again even though he's sure it will put me in the hospital or he'll try another chemo cocktail. If all is clear, I'll have CEA tested every three months and a CT scan every six months with a colonoscopy in June. I had hoped to get my port out this week if I was finished with chemo because I've had a bad ache in my bicep for two months which they tell me is because my port moved and is pressing on a nerve, but he wants me to wait until after the CT scan just in case. I can see how that makes sense.

I haven't been around the board much because honestly, 2016 started off pretty badly for me. My fur baby was diagnosed with a chronic illness, my youngest daughter had to have a tonsillectomy and had problems with it, my husband had to have emergency hernia surgery, I had my reversal, and then my father-in-law passed away, all within a time period of less than a month. Dealing with all of that plus the natural issues of recovering from the reversal has made me pretty depressed and exhausted and I just needed to step back for a bit. I've been reading the threads every couple of days to keep up with how everyone is doing, but not commenting. I've been keeping you all in my thoughts and prayers though.

I hope you are all doing well. Maybe my funny bone will heal as my sore butt heals and I'll feel better about things and have more to offer in the next few weeks.

Judy

[vilca11]

If all clear on your next testings, I would not consider doing Folfox, I agree with your onc.
Hugs, Vilca

[cmewrrie]

Hope your scans are clear and cea is normal. I too would skip the chemo unless necessary. This month is scan/colonoscopy time for DH and I pray his are clear as well. I fear he would refuse anymore chemo after his awful reaction.
Sorry 2016 started rough for you. Hope the remainder is great!

[weisssoccermom]

Just curious....has your onc given you an opinion as to whether he feels it is the oxi or the 5FU (or both?) that is leading you to these problems? If he feels it is the oxi, just drop it and either take the 5FU or Xeloda.
Your signature indicates that you had Xeloda during radiation and I'm assuming you had no issues then, correct? If so, that might indicate that the culprit is the oxi. If so, I don't understand why the doc isn't at least offering you the opportunity of just doing Xeloda. Have you asked about that possibility?

[Cowgirl918]

I have already discussed those options with my Onc and I would refuse chemo. You need to take the steps that you and your physician determine are best for you. Chemo is a tough road under the best circumstances. I am so sorry for you and your family during this very difficult time. Hugs and prayers to you.

[testing765]

Hi. I agree with Weisssoccermom. Ask the oncologist if he can predict whether it was the oxy or the 5fu that caused your bad reaction. 5fu is responsible for more of a survival benefit than is oxy. And if the oncologist thinks the reaction was due to one chemo agent than another, and not due to a combination of both, I bet he will say that oxy is the likely cause. If so, then you could try at least one session with 5fu alone and see if there is any strong reaction to it. If you do not have a strong reaction, then you can continue with the 5fu.

[JudeD59]

My CEA today came back at 1.3, down from 1.7, so fantastic news there.

I did have some problems with Xeloda during radiation, but not as bad as the Folfox. I did ask him about doing just 5FU or Xeloda and he said the tumor board didn't recommend that for me (this was back in January). Now, it's been nine months since my LAR and the studies that have been done show that patients who did no adjuvant chemo at all and patients who did the eight infusions of Folfox but did it more than four months after surgery to remove the tumor had no significant difference in recurrence rates. So considering how badly my body reacted to the chemo and the fact that it probably won't give me a better chance of avoiding a recurrence if I did it at this point, the tumor board thinks more chemo is the wrong way to go in my case. Although I would have liked to have done all eight sessions of Folfox to mop up any cells still floating around, it just didn't work out that way for me. And I'm kind of at peace with that because I don't really have any other option. I'll just have to be on top of my blood tests, CT scans, and colonoscopies and hope for the best. Someone on here theorized that the one infusion did such a number on my healthy cells that it probably destroyed any stray cancer cells, too. I hope that is true and so far, my CEA, which has been a strong indicator for me, is on track.

Judy

[mainelyj]

Have you had a DPD deficiency test. If not you need one. I googled the FOLFOX drugs and had to ask my doc to test me. I was stage IIIn1a- a got so sick after 1st chemo local doc did not want to continue chemo. I wish I had. Local oncologist often don't know much about DPD deficiency. They just know people get sick. I had a recurrence a few months ago and now I am chemo for life. I am DPD deficient and doing fine at 50% dose of 5FU now which is what my local doc should have given after I recovered for adjuvant therapy/ You are stage II so maybe you can get by without adjuvant, but this cancer is serious stuff. Your life hangs on what you do now. Make sure you have no regrets and know you fully explored all avenues. I would go to a NCCN center if you haven't and get a 2nd opinion on the need for chemo. Quest Labs does the DPD deficiency test.
http://www.medscape.com/viewarticle/702737_2
http://jco.ascopubs.org/content/34/3/205.full
http://www.questdiagnostics.com/testcen ... abCode=PHP

If you are totally DPD deficient you SHOULD NOT do FOLFOX adjuvant therapy.
If you are not DPD deficient then it's probably something else and probably not worth the risk.
If you are herterzygous for the major DPD allele you are partially deficient and it probably explains your severe toxicity and might want to consider continuing Adjuvant starting with a test 25% dose of 5 FU via 46 hour infusion no bolus and alone no other drugs and see how you do and if Ok with that up to 50% alone no other drugs and then if ok with that add the Oxaliplatin on the next but no Leuvoricin. This is of course that a oncologist that has treated DPD patients before agrees chemo is necessary for you and if I had it to do over again I would have gone straight to an NCCN center to get a 2nd opinion again if you haven't already.

Best wishes

[JudeD59]

Thanks and yes I was tested for DPD and it came back negative. They don't know why I had such a severe reaction to the chemo, but it's been four months and my kidney values have just gotten back to normal.

I understand why so many of you are saying do this chemo drug or try this one at a reduced dose, but what you don't understand is the window for any of them to be effective has passed for me. They have done studies on this very issue and if you are Stage II and do any form of adjuvant chemo more than four months after your tumor removal surgery, your chances of recurrence are the same as someone who didn't do any adjuvant chemo at all. So 25%, 50%, Xeloda, 5FU, it doesn't matter, it won't give me a better chance at this point. I was prepared to do it at a reduced dose, my oncologist was prepared to give it to me at a reduced dose, but when the tumor board at the cancer center discussed how long it had been since my LAR, they all agreed that, given the studies, it would be of no benefit and could cause me great harm.

Thanks for your replies,

Judy

[Sams wife]

Exciting news with the CEA! It will be ok as long as everything else calms down. I know you have said it but Jeeze, Everything happening in a month. Hopefully everything will calm down now. Maybe everything's back on track.

Sorry about your bloodwork. Maybe if you can relax for a minute they will straighten out. I know that wont help. Just wishful thinking. Butt,
I don't think it is a requirement to have a funny bone here I hope you get to feeling better.

[JudeD59]

Exciting news with the CEA! It will be ok as long as everything else calms down. I know you have said it but Jeeze, Everything happening in a month. Hopefully everything will calm down now. Maybe everything's back on track.

Sorry about your bloodwork. Maybe if you can relax for a minute they will straighten out. I know that wont help. Just wishful thinking. Butt,
I don't think it is a requirement to have a funny bone here I hope you get to feeling better.

Thanks, sweetie. I actually do think things calming down so I can concentrate on eating nutritious meals and drinking Ensure and taking iron supplements will help some. I know I don't have to be funny to post but I just have been in a bit of a funk dealing with reversal issues and didn't want to spread the funk around. It wasn't just here on the board; I didn't feel like talking to family or friends either. I don't have much to share right now except how many times I went to the bathroom in the last 24 hours. But that will get better, I hope.

Thanks again!

[mainelyj]

Sorry Judy I didn't see you had passed 4 months before I went thru the spiel. I am sorry you had such a hard time. I hope your scans all go well. Jane

[SurvivorsSpouse]

Just a data point for you....

My wife was originally thought to be Stage 1 but pathology after surgery sowed stage 2a. We did not do any chemoradiation because we went in with a Stage 1 diagnosis based on scans. Doc said he might still not have done neoadjuvant therapy if he could see the microscopic aspects making this a T3 prior to surgery. Anyway, even with the path in hand and the fact that we didn't do neoadjuvant therapy, he recommended no chemo (major cancer center with a GI Oncology dept).

So far we are 3.5 years NED.

My wife was high rectal/sigmoid well differentiated T3. CEA before surgery was 2.9.

[BeansMama]

Judy,

Sorry things have been so rough lately! I hope everything calming down helps you heal and get better faster. Honestly in your shoes I would skip the chemo as well. If there is no difference in the odds of recurrence why put yourself through it.

Keep up with the scans and the tests and worry about chemo if you need to in the future.

[cathy123]

Judy,

So glad to see your great cea number. Since it seems to be a strong marker for you I would not consider chemo. As far as the bloodwork, I had mine done a few weeks ago and platelets (and white cells I think) are still bad and my last chemo was early August. Onc said the radiation really affects bone marrow and can be slow to recover.

Sorry you are having such an awful year. I really hope it gets better. As far as the bathroom issues I will tell you that while still not great mine have improved greatly in the last two months or so So probably at about 4 months after reversal. You will get there.

Cathy