Hi LadyLinden,

Yep. The bump is there to stay. I'm pretty thin these days, so mine really sticks out. When I get accessed, nurses often ask, "Where's your port?" I just unbotton the top of my shirt, and then there's often a little giggle, as if to say, "Well, never mind, no one could miss that!"

From the parts of the procedure I recall, there's a bit of pushing around to get things positioned the way they want. I could see that causing some initial swelling and bruising in some cases. Anyway, I assume the improvement with yours means all is well, and the area of the procedure is just settling down. 

Mark

Ceci,

If you're being given a choice, I see no reason to argue against a power port, since you will likely have a number of CTs with contrast injection. I have chemo and labs every two weeks, CTs every six weeks, and occasional MRIs, and I haven't been poked for months. In my case it was immediately ready for use. I had no significant soreness in the area.

Best wishes, Mark

3

(16 replies, posted in Introductions!)

Hi Beardme,

I'm sorry to hear about your husband's diagnosis. I too had a Klatskin tumor, and was first evaluated under the transplant protocol at UCLA. Because of lymph node involvement, I was also dropped from the protocol, which is not atypical. More surprising to us, they were unwilling to do a resection because of the lymph node, and elected to put me on palliative care. Before agreeing, we sought a second opinion at USC with Dr. Robert "Rick" Selby. He did two resections on me, including a lymphadenectomy.

So, if the lymph node involvement is the only reason they refuse to do a resection, I think you are exactly right - you need a second opinion from a more aggressive surgeon. I can only recommend two surgeons, one in Los Angeles (Selby) and one in Pittsburgh (Dr. Wallis Marsh, UPMC), with whom we had consultations and they agreed to surgery. Hopefully, others will chime in with recommendations closer to you.

Best wishes to you and your young family. You will be in our thoughts and prayers.

Mark

Hi,

I am also Stage IV now, and on Folfox, which after 8 rounds has become increasingly difficult for me. Although not the worst of my side effects, having a numb tongue and teeth is an odd sensation. I understand the strength required in this stage of the disease to put out each fire as it flares up, and then move on. Although I am still working (with reduced responsibilities), as the circles of my life have contracted with the progression of the disease, it becomes emotionally challenging. But you are expanding your circle to encompass the Mediterranean! Fantastic!  I'm so glad you didn't hesitate in accepting the bonus from your mother-in-law. You deserve it, and It's for her own good, what with the penance and all.

I remember when you first posted this summer. You continue to be an inspiration. Thank you for updating us.

All the best, Mark

5

(17 replies, posted in Introductions!)

Hi,

I live out in your area, and the hepatologist who diagnosed me two years ago is a USC doctor in Riverside, Zeid Kayali. I am glad that your husband was diagnosed early stage. Resection should be a real option for you, and surgery is the best possible treatment for this disease. I'm also glad you are hooked up with a surgeon experienced with cc. We will hope for a good report in November.

If UCI says no to surgery, get a second opinion! I'd recommend Dr. Selby, Chief of Hepatobiliary and Pancreatic Surgery, Abdominal Transplantation, at USC, if you can work out insurance. He did two resections on me with more advanced stage disease when others, including UCLA,  had said no.

Best wishes to you and your husband. Mark

Hi Lisa,

I am glad you are getting a second opinion from Dr. Chapman. In my own case, a second opinion made the difference between no surgery and a resection. I'm also glad to hear they have quickly ordered a PTC for you. That should really help to relieve your symptoms, and having your bilirubin lower will be important to any future treatment or surgery. Don't worry too much about the procedure itself. It is relatively quick and a nurse will be administering medictions to keep you comfortable. Admittedly, living with that external bag is a nuisance, but nothing more in the scheme of things.

Again, I wish you the very best.

Mark

Hi Lisa:

I am so sorry to hear about your diagnosis, but am pleased that your team of physicians seem to be moving so quickly with your case. I spent too much time with my community doctors at the beginning, which slowed my diagnosis. Once I got to an academic medical center with knowledge of the disease things moved very quickly. It sounds like you're in a good place.

The itching was my first symptom and, for me, the worst. They may do an ERCP on you and place a stent, which should give you good relief. For various reasons, that was only partially successful for me, and I've had somewhat elevated bilirubin during the entire two years I've been fighting this cancer. Two different physicians tried the usual treatments of cholestyramine and antihistamines with no real benefit. My hepatologist at USC put me on Rifampin. It is considered a second-line treatment for pruritis in these cases, but even so few physicians seem to know about it. He has a number of end-stage liver disease patients on it successfully, and it has been 100% effective for me. No itching! Anyway, if itching continues to be a problem, it's something you could ask about.

Best wishes to you as you proceed toward treatment. You will find great wisdom and support here.

Mark

Dear Bob and Nancy,

We were deeply saddened to hear of Jeff's passing. As someone who is fighting this disease myself, I was inspired by his faith and positive spirit. That was especially evident in person. A high point in my journey was when Dr. Lenz brought us together at USC. What an honor to meet you both and shake Jeff's hand (I now know it should have been a fist bump).

Reading the posts on the obituary website, it was remarkable to see the dozens of posts from his coworkers at Mattel. He obviously was loved by all who knew him. You raised a wonderful son who was such a positive influence in the world.

We know that Jeff is surrounded by God's light, and we will continue to hold you in our thoughts and prayers.

Mark and Jeannemarie

9

(6 replies, posted in Chemotherapy)

Hi Patti:

I'm sorry to hear about the bad side-effects of Xeloda for you. I did well on it for several months last year, but I know it has been hard for others. I am currently on Folfox. The Folfox protocol includes oxaliplatin and folinic acid infused, and then 5-fu on a pump for 46 hours. I have advanced-stage metastatic disease, and have done seven rounds of Folfox since mid-June. Happily, where I've had no response to other chemo agents like Gemzar, we have seen shrinkage and stabilization with Folfox.

That said, I have had side effects, including bilateral neuropathy (fingers) from the Oxaliplatin, and lately more fatigue and nausea from the cumulative effects of the chemo. I am currently skipping a round to recuperate (and get my platelets out of the basement).

That has been my experience, and from others I've talked to it's not atypical. The good news is that for some of us this cocktail seems to be effective where other agents have not, which has made some of the negative effects seem more tolerable. Of course, everyone is different, so we will hope you have very limited side effects.

Wishing you the best, Mark

10

(35 replies, posted in General Discussion)

Dear Lainy,

I'm so sorry to hear another bad report about your UC, especially knowing from personal experience how debilitating and miserable uncontrolled UC can be. Unfortunately, since in the end first line treatments were effective for me, I do not have experience with Remicade. UC is chronic, so I certainly hope the new treatment is effective, gives you relief, and lets you get back to your life. You continue to be in my thoughts and prayers.

Mark

11

(7 replies, posted in General Discussion)

Hi Stan,

A year ago, I went through 25 radiation treatments of the liver with Xeloda. I tolerated it remarkably well for the first few weeks. I had severe fatigue the last week or so, and for a couple weeks after treatment. Other than fatigue, I had no other significant issues. I hope you do well. Keep us posted.

Mark

12

(30 replies, posted in Good News / What's Working)

Hi Randi:

Congratulations on the great MRI results. This is not just good news, but the best possible news! It is truly a remarkable result after almost four years post-surgery and I am very happy for you.

Mark

13

(9 replies, posted in General Discussion)

Hi Cathy:

I am having the usual sensitivity to cold from the oxaliplatin. I had no problem on the first round, but have experienced  it with the four rounds since then. For me, that begins immediately during the infusion of the ox (don't accept that cold drink the volunteer brings around), but only lasts a few days and has been quite manageable. I know others can have more severe neuropathy, but that has not been my experience.

The 5-fu pump does not perhaps rise to the level of being a pain, but merely a bit of a nuisance. I am always glad when I get to disconnect. That said, I spent months last year with a PTC (percutaneous transhepatic catheter) and its attendant bag strapped to me. By comparison the pump is easy. Plus, at night the gentle whirring sound can be soothing!

Mark

14

(9 replies, posted in General Discussion)

Thanks Marion. Reading those threads reminded me that I'm also getting Zometa during my infusions.

Mark

15

(9 replies, posted in General Discussion)

Hi Cathy,

As you said in another thread, it doesn't seem like there are that many with bone Mets from cc, but I've been told it's common. Given how quickly my bone Mets developed, we took lack of growth on Folfox as a very positive result. Most positive of all, I had considerable bone pain in the spine and sternum, and that was greatly reduced after just two rounds of Folfox. I hope it works well for you. As far as toleration, one reason I am on Folfox is my liver numbers have been elevated for a year now following Gemzar and radiation. Folfox is cleared by the kidneys, and my liver functions have remained stable. Like you, my platelets are very low, but my platelets have also been stable in five rounds of Folfox. I've had mild neuropathy, some fatigue and nausea, but all quite tolerable.

That's been my experience...I hope that helps and that you do well.

Best wishes, Mark

16

(8 replies, posted in General Discussion)

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

18

(10 replies, posted in General Discussion)

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

Hi all,

As you may recall, a PET/CT in early June showed sudden, rapid,  and expansive metasasis of my cancer. Since then, I've received four rounds of FOLFOX and 10 days of radiation on my spine and sternum. It's too early to judge the effectiveness of the radiation, but a new CT showed bone lesions as stable, shrinkage of the three lesions in the liver and two in the peritoneum, and shrinkage of the multiple enlarged lymph nodes. I also have significantly decreased bone pain, and less abdominal swelling. Every part of the report  represented improvement. So we will continue with this treatment as long as it continues to have palliative effect.

My wife and stepsons, who bore the emotional burden of seeing my health decline so quickly just a few months ago, are very relieved to see me feeling better, and for that I am most grateful to the physicians who are fighting for me.

Thank you all for your continued thoughts and good wishes.

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

22

(13 replies, posted in General Discussion)

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

23

(13 replies, posted in General Discussion)

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