tess
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Hello Robyn and thanks for fielding the difficult questions. It is a very tough issue to get our heads arounds & I’ve asked many of the same questions… as I wanted desperately at the time of Dad’s diagnosis (Nov. 08) to know how this was all going to unfold. I too simply couldn’t reconcile how a strong healthy person could be handed such a sentence. CC felt like an unwanted intruder in our lives, that with enough research, experts & support, we could push back out the door. I’ve learned from the countless hours on this board that each case is different. I asked a best friend how cancer kills & she said that in her experience, the pain meds slowly take such a toll on the heart, that it eventually stops. With Dad, he did wake one eve with chills/fever & an infection that had spread through his blood stream. They caught it in time & he was ok, but it was very serious. The chemo has made him very weak & his immune system is down, this compromises his health & makes him susceptible to other germs. The radiation, which he will begin next week will destroy one kidney & part of his lung… at best, per the docs. However, if he doesn’t pursue it- in hopes of shrinking to size of resection, the cc will surely take him.
The tumor itself has been indirectly related to all the complications to date & those to come, but in and of itself- has served as a secondary source of all setbacks.
I also believe that the common threads that bind those with cc are yet to be understood. I worry about genetics, in that my son now has two grandfathers – on both sides of his genetic pool, with cc. His other Grampa passed in 98 from cc complications associated with resection.
You and your Mom are in our thoughts Robyn. I know it’s not easy, she’s lucky to have you!
Tess
Hello Tom, just a note to say that I’m thinking about you. You know you’re always safe to come back here & share what’s going on, as the emotions of it all can change from day to day, as you’ve said. You’re not alone & I”m sending millions of good wishes to you, for your fight. Keep us posted Tom, you’re in our thoughts.
Tess
Hello Erin, best of luck today. I sent you an attached list of contacts, offsite. To piggyback on Marion’s suggestions, per our quest in obtaining second opinions, various doc offices- pending the potential procedure we were seeking possible candidacy for, wanted to know some of the following: Dad’s bilirubin levels, views of upper & lower body CD scans, explanations for why the docs say they can’t resect or pursue radiation, size of tumor & precise location, blood work & tumor market info (CA19 numbers), insurance we carry, etc.. It also helps to have an idea of exactly what your oncologist’s treatment plan is (including anticipated meds/chemo/radiation/mix), such that you can relay that to the other offices as you seek second opinions- to determine if their strategies would vary. Per our experiences, the notepad is a great idea. Also, you can always call the office back later for additional clarification & you are always in the right to ask any and all questions you have.
Wishing you and your Mom & aunts the best today…. keep us posted!
-Tess
Hi Hollie, please tell Sophie that she’s one of our favorites too & that we are sending her a million hugs!
-Tess
Very interesting Raye, thanks for sharing. The docs & nurses here have never heard of leaking bile. Moreover, the oncologist & radiologist can’t understand why Dad is so jaundice & why his bilirubin levels are so elevated, as the scans appear to suggest that the biliary cath is in perfect position to divert the bile. Yes, Dad too has lost an alarming amount of weight & has next to no appetite. He started 5FU in exchange for gemzar last week & is scheduled to being radiation next week. Thanks for the note, there’s comfort in knowing Dad is not alone on this one.
Best to you,
TessDear Ehebeler, I am sorry to hear about your Mom’s sudden diagnosis, I know how hard it is. I am near your age & Dad was diagnosed in Nov., with the same prognosis. We too were told that radiation & resection were not options, only chemo…. in fact the original prognosis was not even for chemo- Dad was told to go seek out experimental treatment as the chemo would likely not work either. From there, we located a half dozen leading cc docs. from across the country for second opinions. We called the offices & spoke with either the docs or their secretaries & they agreed to look at Dad’s scans & paperwork. We had the hospital put this stuff together and FedEx it out for overnight delivery (this way there is a tracking number). Because the imagery can’t be sent in digitial format online, due to resolution issues, it must be uploaded by the hospital to a CD- hence the need for FedEx. After a day or 2, I’d call the offices to ensure that the packages arrived OK & to find out the Doc’s opinions. The institutions were very amicable to this. 95% of the docs said that chemo was the only option due to the size & proximity of the tumor to a major vessel. However, Dad secured a team at the Robert Packer in Sayre PA that said they’d attempt resection if they could shrink it via radiation & the radiation is due to start next week. He’s been on chemo since Nov.
I can provide you with contact information for specific principals at Duke, Sloan Kettering, Fox Chase, the National Institute of Health (NIH), Roswell, the Mayo Clinic, Roswell, Wake Oncology, & the Guthrie- if you should want to follow up with any of these. If you’re interested, click on my name & drop me a note offline, so that I can respond to the e-mail with an attachment of contact documentation.
You and your Mom are in our thoughts.
Best,
TessGood morning Amy. I am sorry to hear about your Mom’s fever & stomach upset. We’ve been there several times with Dad, and every time is very frightning. At times Dad’s fevers are accompanied by extreme chills & this typically happens a day or two after chemo, but also surfaces at random moments during the day and night. (Dad was diagnosed back in Nov.). While often it passes after an hour or two under his heated blanket, we have to keep a very close eye because the fever in Dec. revealed an infection in the blood. It took them nearly a week of testing to determine it was an infection which they believe started near the biliary cath. He immediately takes a fever reducer once the temp starts going up, as the docs have said that its easier to get down when you nip it in the bud. The nausea is an issue too, and when it occurs, Dad takes the perscription strength anti-nausea meds.
You & your Mom are in our thoughts.
Tess
Hello Keith & welcome, I am sorry to hear about your Mom’s recurrent tumors. You have a great team here to field your questions to! While not directly related to SIR spheres, per research for my Dad, when we were looking into the microspheres – we were told it would work in conjunction with the gemzar. He just finished up 3.5 months of gemzar & started a new chemo, 5FU, last week. He will likely begin brachytherapy radiation next week (5 days week/5 weeks) & this will be in combination with his new chemo, which will be infused via a pump that he will wear 24/7. I have certainly found varying opinions on what docs will do & how they will do it. We went after about 10 different opinions, just to get comfortable with what our options really were. You are right to ask all the questions you have, at any time.
The “search forum” tab above should assist with locating additional insights into the combo of SIR with chemo ….. consider checking out this thread, for example…
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2294Wishing you and your family all the best Keith.
Tess
Hi, Just wanted to provide an update on how this strange disease reacts….. While the tumor has not increased in size, the CA19 numbers are back up to over 9,000 and the bilirubin level is back up to 18. There’s still no explanation for the extreme jaundice- as they say the cath is working fine. Additionally, the pic line in Dad’s arm continues to leak green/yellow. They’ve provided Dad with a new med to breakdown the bile in the system, but after reading the potential side effects, Mom’s not certain if she wants to add that to the mix.
Best,
THello to you Elizabethgenovese & welcome! I’m glad you’ve found the crew…. The members here are able to provide a wealth of information & support, for whatever the issue may be. My Dad was diagnosed with cc just a few weeks before yourself, and we are just 3.5 hrs. down the road in the Binghamton NY area. Best of luck to you as you start the new clinical trial at Penn next week — please keep us posted on how you’re doing. You and your family are in our thoughts.
Best,
TessHello Sophie, just wanted to tell you I’m thinking of you, as I’ve read many of your posts since I’ve been on the site. I will continue to keep praying for wisdom, courage, strength and hope for you ….. & I’m sending you many hugs.
In speaking with an insurance specialist earlier re: payments for ‘alternative’ procedure, she indicated that each hospital works differently when it comes to working with insurance providers. A doctor can put together a letter of necessity, arguing for why a patient should receive a certain service, substantiating the necessity for the procedure. This can be performed as an appeal if the patient is initially denied. Just a thought….
Best to you,
TessHello Judy & welcome to you! You are a lucky gal, incidental findings are nothing short of large miracles….. I wish you all the best on your continued journey to good health!
-Tess
Dear Magic, my thoughts and prayers are with you. 59 is so young, and after 30 years of knowing & loving someone & sharing so many parts of the day together, I simply can’t imagine. I’m sending many positive thoughts & hugs your way, for strength and energy…..
-Tess
