lourdesalicia
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Dr. Sonnenday – thank you for the link from you interview. I was reading through the criteria, and am wondering since you mentioned that a transplant candidate doesn’t have evidence of cancer anywhere else, does that mean that if it looks like other areas have mets, then the individual automatically doesn’t qualify to be a candidate?
Sorry if this seems redundant to what you already answered via your link…
Lourdes
I just wanted to follow-up on things that have happened…dad was released from hospital on Monday and is currently on Lasix and 1200ml fluid restricted diet. He’s still exhausted which I know is common with CC, but we continue to go forward with everything that the doctors say (he has now started Xeloda, and still gets Cisplatin).
We had another consult with Liver Specialist, and he says that a transplant is not an option due to my dad having mets in the lung, and 2 tumors in the liver (along w/other nodules)… But I’m wondering if a transplant is ever an option for others? because he says he’d only seen 1 transplant w/CC patient – and that with the liver having only 1 tumor and no mets…
I’m just trying to gain more insight into options, possibilities, etc.
As always, grateful for any insight.
LourdesMarion – No…my dad sees an Oncologist at Kaiser
Thanks everyone for your insight…it had been on my mind and was wondering if that was a standard…good to know that there are other onc’s out there that do more than just the questions…
So we went to the Oncologist and my dad had an ultrasound to determine if there was any blockage, and they told us there was not. He is scheduled for a CT scan on Monday more so to see what changes have occurred since the last scan a month ago.
No mention of an external drain, and that is very helpful as I will make sure to ask about that possibility.
Our concern is the dramatic jump (4 to 9) in the past two weeks. Trying to stay positive but frustrated because there is nothing that we can do.
Thanks again for your thoughts, and as always wishing everyone the best.
Lourdes
Hi Cindy,
There’s a thread on the boards about Vietnam Vets and CC (I know you mentioned Korea, but this thread has some info). Sheila Harrison is an advocate for awareness with regards to veterans who served in southeast Asia and now have CC. My dad, who served in Vietnam, contacted her and she was really great with sharing information. Here’s the website with her story: http://www.engineersvietnam.com/network/prasite/warning.htm
Lourdes
Sorry for not responding sooner…just wanted to let you know that according to ENT there was no vocal cord paralysis, just overuse, which was great news. Thanks for the information on possibiilty of neurotoxicity, always helpful to have just in case.
Lourdes
He is currently on the Gem/Cis combo, and had 2 TACE treatments using Adriamycin (Doxorubicin). He has an appointment with an ENT MD but I just wondered if anyone else had this experience due to CC or trxt, or maybe it’s not connected at all?
Thanks for the link for the picture, I am trying to understand what lymph nodes are affected and having the visual helps.
Lourdes
Hi mn…I just saw your post and would be interested in participating…I should be in the high desert at the time (30 mins north of you), and if not can always drive there. Let me know if you need any help with researching/fundraising I would be glad to try and help if I can.
Lourdes
Thanks. It’s interesting how doctor’s react…when my dad and mom went to an appointment this last time, I gave them the tape recorder, but Dr. was not okay with it…
Hi Katie,
My dad started with systemic chemo and then had chemoembolization. His first CE side effects was pretty rough. A lot of fatigue, lost some weight, and muscle weakness, along with the fever for the first week after the procedure. He was scheduled to go to his regular chemo the week after his first CE and when he talked to his oncologist, they postponed due to the extreme fatigue he experienced. I also did a search on CE on this site and found out from another post that the fatigue is normal, and I shared this with my dad and it helped emotionally to know that someone else had been through the same thing. We basically just let him sleep most of the day, and because of the weight loss, I gave him fruit shakes with whey protein because we thought it would at least help supplement his diet.
He recently had his 2nd CE and it went better in comparison to the first one. He didn’t have any nausea but again had a lot of fatigue and light headedness. With the first round of CE and then the regular chemo, my dad also felt he was getting worse and this of course brought him down emotionally and I just kept trying to find information on what the side effects were and process of how CE actually releases medication into the body.
Before she starts her systemic chemo make sure to talk to her oncologist and let them know what your mom is feeling.
If it helps, I found this information and it has a mini-video: http://www.hopkinsmedicine.org/liver_tumor_center/treatments/intraarterial_therapies/tace.html
I watched it with my dad and it gave us both a great visual on what was going on with the CE.
Lots of thoughts & prayers your way,
LourdesI tried smoothies with a combo of veggies and fruit…following the Crazy Sexy Diet idea from Kris Carr. The one that I really liked was cucumber, spinach, romaine lettuce, apple and a little bit of stevia to sweeten; all blended with water.
Hi Jason ~
I was reading through your post as you indicated your mom was diagnosed with intra-hepatic CC (my dad was diagnosed w/the same not too long ago) and I was surprised to see how the doctor’s were able to diagnose early. I say surprised, because blood in the urine was the reason my dad went to the doctor and basically how it all started. I haven’t seen it as a symptom or possible symptom for CC in the different things I have read… makes me wonder how many other individuals have this initial symptom before getting diagnosed.Wishing your mom and your family all the best during this time.
Lourdes
Hi Milesaway,
I’m so sorry about your grandfather. I will keep him and your family in my thoughts and prayers. My dad was diagnosed not long ago and he is in the Southern California area. After reading through this wonderful sight, and receiving such great advice, we went for a second opinion at UCLA in Santa Monica and were told basically the same thing that he was told through his doctors at Kaiser Permanente. When contacting for other opinions they will ask for all medical records information and based on my not so good experience in faxing from one hospital to the other, I suggest hand-carrying them with you.
We didn’t go to USC but have heard only great things. Based on some research I did, and have stored for future reference if necessary is UCSF. They seem to have ongoing research specifically to CC (http://www.ucsfhealth.org/conditions/cholangiocarcinoma/)
Lourdes
