October 1, 2014 at 6:52 pm #80118anrena18Participant
I just discovered this thread after posting a question about adjuvant chemo in another post!
My mom is 11 weeks post-op after liver resection and bile duct reconstruction. We finally met with oncologist yesterday and doctor wants my mom to do 6 months of Gemzar with weekly infusions. They still want to give my mom a few more weeks of recovery because she had multiple complications since her surgery. I see that many do a regimen of both Gem and Cis or Gem/ox – has anyone every only done Gemzar alone and for 6 months straight every week? The oncologist didn’t make a real compelling argument for my mom to do chemo – she just said it decreases chance of it coming back by maybe 5%. Hmm.. as soon as she said that I knew my mom would lean towards no chemo. I don’t want my mom to have any “what if’s” and I want my mom to do everything she can to prevent this from recurring, but I know the decision is ultimately up to her.. sigh. I”m hoping a second opinion will convince my mom. She’s very hesitant to start, not only because of the side effects, but because she’s just starting to feel “normal” again and get her energy back and slowly start to eat more and doesn’t want to ruin her progression with the start of chemo.
This site has answered so many of my questions already and I am appreciative of any feedback that I can get. I’m glad I found such a great place to voice my concerns and not feel so alone.
SerenaApril 11, 2014 at 6:16 am #80117iowagirlMember
Oh my gosh….someone censor me. I started that post with I have a “little” to add and wrote another epic book. Fortunately, or unfortunately, I’m known for writing long emails….even if I try to be brief. Sorry if anyone is upset by the long post. Julie T.April 11, 2014 at 6:14 am #80116iowagirlMember
Porter, I have a little to add to the collective pile of info or thoughts on this. As of tomorrow, I am at 6 weeks post op from a left node resection of two of the segments due to a 5 + cm intrahepatic tumor and a smaller quarter of an inch size one. My surgical margin with no cancer cells was 2.2 cm, really rather large, but I think the surgeon measured the distance from the small tumor to the edge of the big one and tacked on another margin to boot in an attempt to aggressively eliminate any cancer cells that couldn’t be seen but might be growing in the same orbit around the bigger tumor. The pathologist found NO other tumors than the two and no microscopic cancer cells either in the surgical margin. I had 6 hilar lymph nodes removed and they were normal. So, I’m left with the only really adverse risk being the multifocal aspect of my cancer…that is….two tumors. Stage T2b . The question in my mind, is, did the big tumor seed…but only one tumor grew because of it (that seems relatively unlikely)..or, is the smaller tumor a product of whatever process caused the first/bigger one. I believe my surgeon felt that the latter is the case, because she didn’t want to use the term, “satellite tumor,” but instead wanted to call it a “sister tumor”. In that case, whatever caused those two to form, may well cause more to form. When I discussed chemo with the Mayo oncologist on Tuesday, he realized that I was pretty informed on treatments , etc about this cancer, so we got into some deeper discussions. He agreed that there is no study shows that the current standard chemo used as first line against bile duct cancer has an effect one way or another to keep new tumors from growing. However, they do know that it has an effect in at least shrinking tumors that can be seen and thus, they speculate that the chemo could potentially kill off microscopic cancer cells left after surgery. He was very much advising I do chemo, but said it was my choice. However, when I went to my surgical followup, the surgeon asked at the end whether anyone had discussed chemo with me. I said yes, and that my husband and I would be discussing it when we got home. Her reply was, “You ARE doing chemo….we don’t do the surgery without the chemo.” She was that adamant about it. Now, I had already decided I was doing chemo…but I meant that we were going to decide if I’d have a port put in up there or here at home….and if the first treatment would be at Mayo when the port was installed or if it would be here at home, but she didn’t know that. She really felt very strongly that to give me the best chance, I should do chemo. I know I have to decide and do this for myself, but this woman took me on as a patient, knowing that I had diabetes and am obese and as such, not the greatest surgical risk for a procedure like a liver resection, but she did it…and I sailed through it and went home in a short 3 days…better than the best she expected…no complications, at least not there (until two weeks ago when I popped stitches on two of the incisions and now am trying to get them to close up). So, I feel like maybe she might take on another patient like me in the future again, based on how well I did….not assuming all diabetic and obese patients will do badly…..and I’d like to be her poster child for her doing this surgery….and then doing the followup chemo and then NOT having any recurrence. I know that it still could come back even with the chemo, …as my GP said today, cancer is fickle…and esp this one…..but I have as good a chance as any for that curative resection to end this with a cure. I was in tears all day today…..trying to deal with the percentage of this that come back after resection despite chemo, but my mind is made up….I’m (we’re) doing chemo. I agree with Mark. I never want to be in the piace where I found myself saying , “What if”, if the cancer came back and I hadn’t done chemo. I’ll be thinking about you as you go through chemo…and will be right behind you several weeks on the same journey. Julie T.March 13, 2014 at 12:34 am #80115pfox2100Member
HI all. It has been a few days since I have been on. Met with the surgeon last Friday and meet with my Onc this Friday. All I know at this point is I will have a scan before I start treatment and it will the same regimen of gem/cis for 3 months. The reasoning: Microscopic cells. As Dr. O put it if there are any cells in there “we want to nip in the bud.” I believe they want the scan soon and start treatment right away. I would imagine within the next 2-3 weeks since I am at my 6 week post op!!! Yay. Hugs and blessings to you all.
PorterMarch 6, 2014 at 3:03 am #80114wallsm1Participant
I had a resection with negative margins though one was close.
3 major medical centers all recommended chemo to me.
1 recommended radiation, 1 was against radiation and 1 said although they are not currently recommending adjuvant radiation to their R0 patients, they understand why it was recommended in my case and were not against it.
The reasoning I was given for adjuvant therapy is to go after any microscopic cancer cells that may still exist.
Good luck with your decision.
SusieMarch 6, 2014 at 12:57 am #80113mattreidyParticipant
I’d love to hear more after your meeting on Friday as I’m struggling myself to decide if I should proceed with chemo post-resection. The more detail, the better! I’m 6 weeks post op and just beginning to feel like life can get back to normal.
Good luck on Friday. I hope you get clear answers that help you decide what to do next.
-MattMarch 5, 2014 at 6:24 pm #80112marionsModerator
Porter….in addition to what has already mentioned I thought to point out that at this point, there are no large scale studies showing the benefit of adjuvant therapy. We do know however; that the majority of physicians (7 of 10) are recommending chemotherapy post surgery and that is based either, on their experiences or that of small case studies. Several larger case studies (Phase II/III) are near completion and we expect to see the data of such by the end of September.
I realize that the above information is of little value to you at this point however; it is good to know for anyone having to make a decision such as the one you are about to make. Other factor are taking in consideration as well such as the patient’s age (you are very young in comparison to the average age group with this cancer) as well as patient’s response to prior treatments, and the overall health of the patient.
Those reading our site (members and non-members) are able to assimilate the vast amount of information shared by others, hence physicians expect this patient group to be well informed and educated. I expect you to have a lively discussion coming your way.
Hoping much for others to chime in on this important subject as well.
MarionMarch 5, 2014 at 4:28 pm #80111kvollandParticipant
It is a tough decision and one we have faced. Now I do not profess to have the answer for you but I can give you some thoughts. Our oncologist said he looks at four things in regards to doing chemo or chemoradiation: 1) the size of the tumor (the bigger it is the more likely he wants to do it) 2) any mets regional or locally (meaning had it started to spread which increased the likelihood of recurrence) 3) the differentiation of the cancer (were the tumor cells more or less like the original cells) 4) if there were negative wound margins during surgery.
In Mark’s case he had he had a good sized tumor with tracking along a nerve and a lymph chain (that was for chemo), regional mets (one node so that was for chemo), it was moderately differentiated (so middle of the road), he had negative margins (so not chemo). He had two negatives, a middle of the road and a positive. He strongly recommended both chemo and chemoradiation as a greater chance of no recurrence.
Mark opted to do both since he felt like he wanted to give it the best chance to not come back since it is so virulent when it comes back. He never wanted to wonder “What if?” later down the road.
Now as far as side effects from the chemo after resection I don’t think it’s really an issues. My understanding is the liver takes about 6 weeks to regrow after surgery so by the time you are ready to start chemo it should be ready to go. He tolerated it well other than cold tolerance and some fatigue and we did it for 6 months.
I would say ask lots of questions but most especially what drugs and do you think you could tolerate possible side effects like the fatigue. Nausea can be managed with meds for the most part.
Good luck with your decision.
KrisVMarch 5, 2014 at 3:23 pm #80110lainyParticipant
Porter, I never comment on chemo since Teddy never had it. I do know that it is a tough decision. Like I like to say, make a list of pros and cons and see which side is longer. Grade school but it works. Also ask the ONC what ‘could’ happen in 3 months if you took the break. Wishing you the best on your appointment and sending you a ton of hugs.March 5, 2014 at 6:18 am #9630pfox2100Member
Hi all. I got a call this week from my surgeon’s coordinator. I have another post op follow op this Friday. I was informed that my case was presented at OHSU tumor board as well as a national conference that my surgeon attended last week. It has all been confirmed unanimously that they recommend 3 months of adjuvant chemotherapy. I go back and fourth about this and now I am facing the thought of to chemo or not to chemo. I guess my biggest concern and question is (and I will be asking this on Friday), if there is nothing cancerous or negative for the chemo to attack what’s the point. At this point from what I gather, there is possibility that there could be things that are not seen or show up on scans and therefore chemo is recommended? Is this used as a preventative measure? I am also curious how chemo effects patients who have had resection. I was already appointed to meet with my onc next week and they want to start treatment soon. And I am about 5 weeks post op and was left with 2 segments of my liver and am quite curious how treatment would effect me (specifically the liver and such) I know a lot of these will be answered on Friday as well but would love to hear ya’lls thoughts and input. As always, thinking about this group of people and sending everyone blessings, strength, and hugs.
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