mparsons
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mparsonsSpectator
Hi Lisa,
Let me add my welcome along with the others. I am 53 with three stepsons, 11, 15, and 20, and have been fighting this disease for 20 months. The support we have received here has been very important. A second opinion was also important and extended my life. If your husband is already being treated in Pittsburgh, the University of Pittsburgh Medical Center is a power house for treating liver cancers, and they have broad experience with cc. In particular, you might get a consultation with Dr. Wallis Marsh. He is exceptionally skilled and a very caring human being.
Best wishes to you and your family.
Mark
mparsonsSpectatorHi Bob and Nancy,
Jeannemarie and I were so happy to see your post. We thought of you every day, but after not hearing from you for a while, we grew increasingly anxious. How wonderful to hear how well Jeff is doing after all this time. Of course, we know the disease takes its course, but through it all Jeff continues to be an inspiration to all of us. His attitude reflects his strong faith, as well as a strength of character instilled in him by you. I’m glad you continue to build important memories together…something I want to emphasize with my own family.
Please keep us posted, and we will continue to lift you up in our thoughts and prayers.
Mark and Jeannemarie
mparsonsSpectatorPam,
I continue to hold you, Lauren, and family in the light.
Mark
mparsonsSpectatorThank you Randi, Lainy, and Marion. Indeed, Lainy, how can I keep from winning. With all of the love and support I receive each day, I’ve already won. No matter the ultimate outcome, the cancer can’t beat me. And yes, I believe Taline when she says they will get me through this, wherever it leads. From the beginning, I’ve asked people to pray, not for a cure, but for the miracle of wisdom and strength in the face of adversity. My greatest hope is that I can live in this stage of life with dignity and integrity. I still need those prayers!
Oh, and yes Marion, RFA in no way excludes radiation, so I may receive radiation on the spine and sternum to control pain in those areas. They want to assess bone integrity with the MRI first.
Blessings, Mark
mparsonsSpectatorDear Rin:
Welcome to the site! I was overjoyed to hear that information on this board led to such a wonderful outcome. As I have expressed on this board, I truly do think Dr. Selby truly is a gift to those is us fighting this disease. Much like your husband, I was diagnosed at 51. When UCLA would do nothing for me, other than palliative radiation, Dr. Selby performed two extensive surgeries to render me free of visible disease. His team continues to fight for me, and I am an 18 month survivor, still active and working.
Congratulations on the gift you have received and we will look forward to more positive reports!
Mark
mparsonsSpectatorHi Bob and Nancy,
I’m sorry about my delayed response, but you and Jeff are always in my thoughts and prayers. Of course, I continue to be amazed by Jeff’s positive spirit through all of this. He is certainly dealing with a myriad of uncomfortable symptoms right now, so his strength and patience are remarkable. I hope that the port placement and biopsy went well, and that he responds well to the new treatment.
Mark
mparsonsSpectatorHi Julie,
I’m responding late, but I hope you got this resolved to your satisfaction. I know waiting a whole month for this kind of thing is stressful, very stressful. In my case, they bumped someone to get me in for RFA in a week, but that was because one of my tumors was right at 3 cm, so they didn’t want to wait. Hopefully in your dad’s case, it means that because of size and location, they feel a delay is not problematic. I would ask the radiologist about that directly for your own peace of mind.
Best wishes, Mark
mparsonsSpectatorHi Mark:
I’m sorry to hear that your dad is suffering from jaundice, and especially the pruritis (itching). I know from my own experience that there is nothing much worse than the generalized itching that comes with jaundice. It is absolutely intolerable!
Obviously, the itching and yellowness indicate high bilirubin levels. Chemotherapy cannot be safely administered with elevated bilirubin. So, I think part of the purpose of stenting in your father’s case would be to reduce bilirubin so that treatment might be continued. Obviously, the oncologist will make that determination.
I hope your father finds relief.
All the best, Mark
mparsonsSpectatorDear Jackson:
Your post made my day…or week…or month! Not only is your post uplifting for those of us fighting this cancer, but it is gratifying to know that what you learned here has been so important in helping you give your friend the support he needed. In 2011, my wife and I also learned about Dr. Selby through this site, and he changed our lives.
As Randi said, you’re now part of the family and we’ll look forward to hearing more from you as his recovery progresses. You’re a remarkable friend!!
Mark
mparsonsSpectatorLet us know how your consultation goes. Everyone here believes in second opinions with this complicated disease. In 2011, after I was put on palliative care and told they would not do surgery, folks on this board urged my wife to get a second opinion at USC. Within days I was in surgery.
Best wishes, Mark
mparsonsSpectatorHi,
I think Dr. El-Khoueiry will be a good consult for you. He specializes in biliary cancers and has done significant research in the area. I recall that several people on this board have been treated by him.
I know that your mom is trying to recover from a cholesyctectomy, but the big initial question is whether she might qualify for surgery. With this cancwr, that offers the best chance for more time with good health.
I hope you get the answers you need.
Take care, Mark
mparsonsSpectatorHi Bnanagirl,
I’m truly sorry to hear about your mother. I too have had ulcerative colitis since age 16, now 53, and I now know that it is a risk factor for cc.
I live in SoCal, and as this has evolved, have been seen at a number of community hospitals, UCLA, and USC. As a patient, my opinion (and that of my primary care doctor) is that USC is currently the best place in the the LA area for treatment of this disease. I have been in treatment there for 16 months. If I may ask, who are you seeing initially? Do they have your mother’s previous records? Yes, it sounds like you need many questions answered. There are a number of good people at Keck who are very familiar with cc, and should be able to give you more thorough answers.
I know my way around USC. If I can be helpful, please let me know.
Best wishes, Mark
mparsonsSpectatorHi Bob and Nancy:
It’s great to get an update on Jeff. I know I’ve said it before, but I am simply amazed by his strength and positive attitude. He is certainly an inspiration to all of us fighting this disease.
Having had my share of stints, and transhepatic drains, I’m going to agree with everyone else here that the thin clay colored stools are a decrease of bile in the bowel. Most of the color in our stools comes from bile, and it also is critical to good digestion (which could also explain the thin stools). I assume a new stint will take care of everything. Although I’m currently stint and drain free, my bilirubin numbers still fluctuate. Dr. Lenz put me on Creon (enzyme) and probiotic, which has really helped my digestion.
I’m glad you’re getting a second opinion. Even if he simply agrees with current treatment, the consultation can bring peace of mind. By the way, a bonus with Dr. Lenz is you also get his nurse practitioner, Taline. She is fantastic. Jeff will love her…and so will you.
Mark
mparsonsSpectatorI read about this in a couple of articles online, and I’m like, “Hey, I know her!” Great video…thanks for sharing and for all you do on our behalf.
Mark
mparsonsSpectatorJulie,
I completely understand your feelings. In my case, I feel more confident in going forward with RFA because the recommendation comes from my surgeon and there seems to be a consistent rationale for the decision. My tumors are on the back of the liver and the caudate lobe. That means a more invasive open surgery, rather than laproscopic. Given that, and the relatively small size of each tumor, he wanted to try RFA first. If at any point that doesn’t work, he stands ready to do surgery.
I hope you can get the information you need, from Busittil or someone else, so you feel good about the decision. That’s what’s important.
Mark
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