mparsons
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Dear Bob and Nancy,
I am truly sorry to hear this latest report, but am grateful to you for sharing it with us. Having now met Jeff personally, I can attest to his positive spirit. He is a remarkable young man, and you obviously are wonderful parents. We continue to lift you up in our prayers.
Mark and Jeannemarie
Thank you all very much for your encouragement. I truly appreciate it. And Bob, we were so glad that Dr. Lenz took the time to bring you and Jeff over to meet us. It made our day!
Mark
Lainy,
So glad to hear your positive report. Now I just continue to pray they can get your UC symptoms under control. Thanks for the update.
Mark
Heather,
I think you should be happy about that 90% estimate! I know these things are relative, but I’d take your surgeon’s statement as something like, “I’m very confident about this, but one can never say with 100% certainty.” I had multiple good-sized lesions in both lobes and multiple lymph nodes. My surgeon said 65% chance of complete success. It took two surgeries, and the first was long and “dicey” as he put it. So I tend to think his aggressiveness, persistence, and skill made up that other 35%. (-:
Mark
Hi Heather,
There seems to be two parts to your question, the first about aborted resections and the second about recurrence post resection. My experience regarding the first was that Dr. Selby warned that if he opened me up, and say my liver was “peppered” with sub-1 centimeter lesions (not caught by CT), or my larger lesions had grown markedly since the last CT (which already indicated it was going to be hard to get clean margins), he’d have to close me up. My surgery started at 8:00 am. I woke up in ICU at 12 o’clock…but was it noon (meaning aborted surgery) or midnight? I coudn’t ask on a ventilator! Then, from somewhere I heard a nurse say, “We’ll be with you all night.” It was midnight. With a huge sense of relief, I went back to sleep. So, I suppose that question remains until the surgeon gets eyes on it. That’s why often they will do a laproscopic exploration before committing to that long incision for the “open” surgery.
I appreciated that my surgeon was direct with us. His goal was to render me free of visible cancer, which he did with two separate resections. He also said that because of my staging – especially lymph node involvement, recurrence was very likely, and we needed a plan to address it. I did recur one year later, and have undergone multiple treatments to slow progression of the disease as much as possible.
The bottom line though is that 21 months ago I was given 3-6 months to live, and today I am still living with the disease because of surgery. The fact that your physicians think surgery is possible is the best possible news!
Best wishes to you and Gordon. We will be holding you both in our thoughts and prayers on surgery day.
Mark
Hi Lainy,
I’m sorry that you continue to suffer from UC. From my early years with the disease, before treatment, I know how debilitating it can be. I’m lucky that it has been fairly effectively controlled for about 35 years now with Sulfasalazine. I have rarely required prednisone. I was screened regularly for colon cancer with never a hint of dysplasia. The CC was the rare surprise complication I didn’t even know about.
I hope you find relief.
Mark
A tad off Julie’s topic, but one more risk factor for Maion’s list – ulcerative colitis. It used to to be seen as a risk factor if it presented with PSC. Now it is considered an independent risk factor. I have UC without PSC, and my onc. considers that to be the source of my cc. Kind of comforting to know my risk factor…I guess.
Best, Mark
Dear Clawler,
Welcome from the other side of the country. I’m glad you’ve introduced yourself. I think you will find wonderful support here. As Lainy said, this cancer is rare enough that it can be difficult to find local support, even in a place like southern California. That said, I have developed relationships and communicate personally with several cc patients in the area, but I met them all here.
I agree with Lainy that the best way to become informed about your treatment is by getting other opinions. Also, if you say more about the particularities of your disease, others here can share their experiences under similar circumstances. Beyond support there is a wealth of knowledge here.
Good to have you here!
Best wishes, Mark
Hi:
When I first was diagnosed, I too was told that this cancer is slow growing, and that I’d probably had it for as long as two years. My liver numbers had been bouncing around that long, but was blamed on fatty liver and other non-specific diagnoses that turned out to be wrong. My main tumor was 9.5 x 6.5 x 5 cm with multiple other lesions, the largest being 2.3 cm. These were in both lobes, and resected in two surgeries along with cancerous lymph nodes.
When the cancer recurred, it grew and metastasized quickly. I have heard from my oncologist that this cancer can come back very aggressively.
At the same time, there always seem to be exceptions to these assumptions, which I guess is what makes prognosis so difficult. So, for me as a patient, part of the challenge has been to let go of the sense that I can predict the future, and just keep taking the next indicated step.
Best, Mark
Hi Michelle,
I’m so sorry to hear about your mother, but glad you are seeking expert opinions. Affirming Marion’s post, I would explore the surgical option to the fullest. I am not a physician, but from my own experience and that of others, I disagree with your first surgeon. If resection (and lymphadenectomy) is technically possible, it will positively affect outcome. It will at the very least significantly extend time and quality of life, and provide a healthier foundation for fighting this chronic disease in the future.
Best wishes, Mark
I’m glad that was ruled out and there seems to be improvement. My oncologist has me on a daily probiotic, and even Creon, a pancretic enzyme, although I have my whole pancreas. Anyway, both seem to have benefit for me.
Continued best wishes.
Mark
Hi Heather,
Since no one else has responded, I will, while hoping that others may come along with better insights. While in the hospital, did anyone mention the possibility of pacreatitis? It’s a common complication with ERCP procedures. Usually, this would be acute pancreatitis, which would require immediate medical attention (which no one avoids because of the terrible pain…which I know from experience). A mild case, though, can linger, cause bloating and discomfort, and often recitifies itself. I assume that if pancreatitis was involved you would have been informed, and if needed, it would have been treated before release. Of course bloating can also be caused by problems with liver function, etc. If your husband is continuing to suffer, I would call your physician. After this many days of discomfort, I think you deserve some answers.
By the way, you might get more responses if you start a thread like this under General Discussion rather than Introductions.
I hope your husband improves soon.
Best, Mark
Hi Erica and welcome. I truly appreciate your attitude, and think it is inspirational. You are realistic, which does not mean you have given up on your life! Realism is not the same as pessimism and I think most people on this site understand that. I say go work on that doctorate! The very week I was named dean, I was diagnosed, and knew I would not be able to fully realize my dream. All too quickly I am having to transition out of that role, but I will stay involved in the academy as much as I can because it is part of who I am. Keep working on those dreams.
I’m glad that you seem to be responding to treatment. I wish you the very best.
Mark
Hi,
So good to see you on the board. Welcome. The support here is wonderful. Both of you continue to be in our thoughts and prayers.
Mark and Jeannemarie
Dear Bob and Nancy,
I am so sorry to hear about the blockage. That is serious and it must have been a frantic and frightening time. What a relief that the endoscopic procedure was successful. It sounds like Jeff continues on with his tremendous strength of character. He so much deserves a better week than the last, and I will keep him in my prayers.
I’m glad you will be following up with Dr.Sadeghi. I wonder if he will want to change treatments. Anyway, there are great GI docs at UCLA, and maybe they can be involved in monitoring Jeff’s progress.
You and Jeff are an inspiration to me.
Mark
