esamolytz
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I have CT and MRI scans today and will repeat in January and March. For the next year after that, scans will be done every three months. Hopefully none of these will show recurrence and we will just be able to continue monitoring. I know this joy might be short lived, but it’s pretty sweet for now!
Hi all. It’s been a long time since my last post. I did one cycle of 5FU after surgery, but it was toxic so we discontinued treatment. I had slight thickening of the peritoneum, so my onc ordered a PET scan for 10/29. I got the results on 11/4 … everything is normal and I am doing great. My labs were mostly normal too, even the tumor markers. Hemoglobin and platelets are still recovering but looking better. Best news ever came in the form of two simple words: complete remission! My onc said we need to remain careful but that everything looks great. Here’s hoping for this to last a long time!
ElaineKris, I live in the Twin Cities. Prior to my resection, I participated in a clinical trial using gemzar and cisplatin in standard doses, with low dose radiation added with the intent of amplifying the effects of the gemzar. It may be worth looking into – the surgeon is Srinevas Reddy at the Virginia Piper Cancer Institute (part of Abbott Northwestern Hospital). Oncology is provided by the Minneapolis office of Minnesota Oncology (located across the street from the hospital).
I can look for a link if you’d like.
I wish you the best of luck.
Elaine
Thank you! I apologize for not responding sooner. I had a successful resection on June 9 and am oh-so-slowly regaining my strength from that 8-hour procedure. Clean margins and no lymph node involvement! My hemoglobin is low, so I am going against character and actually napping now and then! This is definitely a long road to recovery but I am so thankful to have the surgery behind me!
Thank you for your kind words and advice. I am grateful for this online community.
ElaineMy successful resection was June 9. Clean margins and no diseased nodes! I haven’t had a follow-up with my oncologist yet, but from what the surgeon has told me, they are not sure whether to do chemo. When you wrote that 7 of 10 docs do use chemo after a curative resection, I started wondering even more whether I should fight for chemo if my onc says no. Not that chemo is fun, but I obviously want the best chance of no recurrence for as long as possible. Are there resources you could recommend so I can learn more?
Thanks!
ElaineThanks Marion. I will check with the doc on Thursday at my next follow up. The PA just recommended I keep moving/walking to keep things moving in my gut but I am hoping there is a simple way to reduce the bloating as I continue healing. Overall though, I am feeling pretty good, so I am happy about that.
ElaineAny advice in dealing with gas pain and bloating post resection? I look pregnant! It’s very uncomfortable and seems to just be gurgling around without, um, an outlet. My doctor’s PA says to just keep moving. I am having bowel movements but not quite back to normal. Any advice would be appreciated.
I neglected to mention that my surgeon now says my disease was stage ii because nodes he thought would be diseased came back clear!
I had a successful resection on June 9. The surgeon removed the whole tumor (roughly 12x10x9 centimeters) with a minimum half-centimeter clean margin all around. I came home from the hospital on June 16 and am happy to report that my recovery is going well so far. Nodes that the entire team thought would be diseased came back clean. Other nodes he looked at were soft and normal. Woo hoo! It sounds like the surgeon and oncologist agree that chemo is warranted after I recover from the resection. They also told me that gem/cis had little impact on the tumor. It’s too soon for them to be able to decide what drugs to use next. I am curious about what some of you have used…
I will share what i learn at my post-op follow-up tomorrow with the surgeon.
Tuesday is the big day. My resection is set for 7:30 a.m. We are to arrive at the hospital (Abbott Northwestern in Minneapolis) at 5:30 a.m. I can hardly believe the day is almost here. I will post an update as soon as I am able. I would appreciate any positive thoughts, good wishes, and prayers you could muster. Thank you!
Yippee! I just got a call from my surgeon’s office. My left liver (the future remnant) has increased from 26% to 34%. The report says that they are seeing significant interval growth and a robust growth rate of significantly greater than 2% per week. This is the best news I could have received today. The nurse also told me that the liver growth could explain why I’ve been so tired over the past two weeks … I need to eat another cheeseburger tonight to keep feeding those growing cells with the protein they need.
I am anxiously awaiting the results of the scan that should be happening on or around May 11. I’ll let you all know what I find out at that time.
It’s been just over two weeks since my right portal vein embolization. I had a CT scan yesterday and met with the liver surgeon. While he couldn’t tell me yet about the growth of the left liver (the volumetric calculations are being done by others), he did tell me that there was no progression of disease – either in the main tumor or in any of the lymph nodes he’s watching. Stability is a good thing now that we’re not actively treating the cancer!
I will have another CT scan on May 11 and meet with the surgeon again. He reassured me that if the embolization doesn’t get us the growth we need, there are other interventions he can use. He didn’t get into it, instead stating that we’d cross that bridge when we get to it. (Hopefully we won’t need those other interventions.)
We are still on track for surgery on June 9. Hope nothing happens to postpone or cancel that! I hope to have the results of the volumetric calculations later today or sometime tomorrow. The surgeon will be looking at both amount and rate of growth in the left liver between this week’s scan and the next one in two weeks. Fingers and toes are crossed for adequate growth!
Hi all. I had a successful four-hour surgery yesterday to embolize the right portal vein. The surgeon said everything went really well and that I have nice anatomy that will make the liver surgeon’s job easier. Something about a nice big vein he can clamp off, or something like that. I think I was foggy when he talked about that!
I am scheduled to have a CT scan on April 27 to check growth of the left liver. We will meet with the surgeon right after the scan to find out how things are progressing. Hopefully there’s good news on that front. Another scan will probably happen a couple of weeks after that.
Surgery is tentatively scheduled for June 9. We asked if we could wait a couple of weeks beyond when the liver surgeon said he could operate, so I wouldn’t be in the hospital the last week or two of my twins’ Kindergarten year. That would be even more stressful for them than what they’ve been dealing with thus far, I think. Of course if he wants to proceed faster for whatever reason, we’ll do what he thinks is best. The bottom line is that I want to get this monster out!
I’ll let you all know what I find out on the 27th. Keep your fingers and toes crossed for good news!
I have suspicious nodes near the liver, as well as enlarged nodes in the mediastinum that were biopsied in December (no cancer found at that time). The are still enlarged – one grew a bit, one shrunk a bit. My oncologist says he doesn’t know if there’s lymphoma but that he’s going to assume the best regarding those nodes so I can proceed with surgery. Not sure what to think about the nodes near the liver. I would hate to wake up from surgery and find out that the resection was aborted. That scares the you-know-what out of me.
I am hoping all those nodes turn out to be benign!! Thanks for all the good wishes. I am very glad to have been told about this group. I’ll update again on Friday after the embolization.
