Patients’ Questionnaire (Summary)
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Thanks to all that responded so far!
Here is the information about my husband who recently passed away.
P.S. I added jaundice and second opinion and some other questions as well.Age: 65
Gender: Male
Age when diagnosed: 64
Diagnosis and Stage: CC (Klatskin) and Pancreatic cancer stage IV, metastasized – omentum mass size of a grapefruit, spots on liver and tail of pancreas
Jaundice: 2 weeks after diagnosis
Initial CA19.9: 12000
Lymph nodes involved? Not sure, nobody mentioned it
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? not Whipple, but appendix removal – that’s what prompted diagnosis
Liver transplant? n/a
Hospital:
Oncologist:
Second opinion: Went to Duke to gastro-oncologist; he confirmed diagnosis and recomended the same type of chemo
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): almost a year (minus 8 days)
Chemo 1: Gem/Cis
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: 24000 -> 2900 -> 3200
Side effects Chemo 1: Nausea, pain, appetite loss, weight loss, tiredness
Chemo 2: Xeloda
Length (and/or number of treatments) of chemo 2: 5 weeks
CA19.9 trend during Chemo 2: went up
Side effects Chemo 2: Nausea, stomach cramps, constipation, weight loss, tiredness
Chemo 3: folfirinox
Length (and/or number of treatments) of chemo 3: 3 months
CA19.9 trend during Chemo 3: up to 11000, then down to 7800, then up to 12000
Side effects Chemo 3: Nausea, vomiting, neuropathy, pain, constipation, appetite loss, weight loss, tiredness
Advice for chemo: schedule IV fluids a week or so after the chemo – to avoid dehydration; go out to dinner on the day of the chemo; prevent constipation before it starts
Cyber knife? No
Radiation? No
CA19.9 trend during radiation: N/a
Chemoembolization? No
Radioembolization? No
Experimental treatments? Didn’t qualify – initially because of jaundice, then later was tested for specific gene – didn’t have it
Any other conventional treatments? No
Blood transfusion? Yes – improved blood count, but not feeling of well-being
Alternative treatment? No
Use of supplements? Tried Essiac tea in capsules while on chemo break in May (actually CA19.9 went up just slightly when he was taking it), Milk thistle, Kidney and bladder formula; few others, but he barely took those
Special diet? Replaced coffee with hot green tea; Ensure, protein drinks
Complications during treatments? Had kidney stones with placing urethra stent, that resulted in blood infection; In october 2012 – bowel obstruction
What worked for nausea (best)? Emend with Ativan in IV form
Biggest regret: Having last chemo on Oct 1 and finding out day later that cancer marker went up to 12000 and having bowel obstruction on day 3 after last chemo. Wish they tested CA19.9 before giving him chemo – since he was feeling bad non-stop
Best advice given to me: scheduling IV fluids after having chemo instead of waiting until dehydration starts
Best tip/idea/recommendation: Prepare will as soon as possible after diagnosis and discuss all final arrangements, regardless of patients’ condition. We didn’t talk about it and then it was too late!
What would you have done differently? A lot, unfortunately. 2 big ones (other than the ones mentioned earlier) – get the third opinion at John Hopkins and delaying chemo in July, until after we went on vacation. He wasn’t able to enjoy the cruise at all…
Current status: deceased (Oct 18, 2012)
Comments: Wish we would have asked oncologist, how much longer would he have with the last type of chemo (assuming that it works). Doc only told us that if he doesn’t have chemo, he won’t survive the fall, which sounded to us – longer with it. Well – he had this grueling chemo and didn’t survive this fall anyway. He suffered last month and a half tremendously. Now that I’m analyzing everything – he felt bad at least 70% of the time since the diagnosis and at least 90% bad during last 3 months.This is info about my daughter, Lauren. I asked her the questions and she answered them in her own words.
Age: 26
Gender: Female
Age when diagnosed: 25
Diagnosis and Stage: Advanced Intrahepatic Cholangiocarcinoma
Initial CA19.9: 125
Lymph nodes involved? Questionable. Swollen but did not light up on PET
History of cancer? No
Resectable? No
Had surgery (with details if applicable)? No
Liver transplant? No
Hospital: University of Michigan Comprehensive Cancer Center
Oncologist: Dr. Mark Zalupski
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): 1 yr. Diagnosed 8/29/2011
Chemo 1: Gem/Cis and 5-FU once every 2 weeks
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: Going up to almost 400
Side effects Chemo 1: Fatigue, body aches, hair loss.
Chemo 2: Gemzar and 5-FU
Length (and/or number of treatments) of chemo 2: 2 months
CA19.9 trend during Chemo 2:
Side effects Chemo 2: Fatigue and body aches, not near as bad as with Cisplatin. Was taken off Cisplatin to avoid kidney damage.
Chemo 3: Xeloda and Oxaliplatin
Length (and/or number of treatments) of chemo 3: 4 months
CA19.9 trend during Chemo 3: Going down to mid 200s.
Side effects Chemo 3: Nausea, red, peeling soles of feet, body aches, fatigue, neuropathy. Had allergic reaction to Oxaliplatin on the 6th infusion. Only on Xeloda right now and will probably switch chemo after scan in Dec.
Advice for chemo: For the day of chemo, bring a lot to do, eat what you want, and be prepared for a long day.
Cyber knife? No
Radiation? No
CA19.9 trend during radiation:
Chemoembolization? No
Radioembolization? Yes, Y-90 Theraspheres in May 2012.
Experimental treatments? No
Any other conventional treatments? No
Alternative treatment? No
Use of supplements? No
Special diet? No
Complications during treatments? Allergic reaction to Oxaliplatin Oct. 2012.
What worked for nausea (best)? Compazine
Biggest regret: Not going to the doctor sooner.
Best advice given to me: From my social worker at U of M. I am allowed and entitled to be angry about being young and having cancer.
Best tip/idea/recommendation: Take Compazine with Xeloda instead of waiting to feel nauseous. Try not to waste your life sleeping in your bed all day. If you can, get out and enjoy your life!
What would you have done differently? When my hair started falling out, I would shave my head now instead of holding on to the sparse amount I had left. Looks terrible in pictures!
Current status: Taking Xeloda and CT scan on Dec. 4, 2012
Comments: I thought I would still be getting lots of attention, visitors, and gifts. Sad to say, most people forgot about me and only care about themselves. I now know I can only count on my family, my boyfriend, and a few close friends. You sure do find out who your true friends are.Age: 56
Gender: Female
Age when diagnosed: 53
Diagnosis and Stage: Extrahepatic CC, stage 2b
Initial CA19.9: 17
Lymph nodes involved? No
History of cancer? Yes, breast and thyroid
Resectable? Yes
Had surgery (with details if applicable)? Whipple 12/2009, clear margins
Liver transplant? No,not necessary as no cancer in liver
Hospital: Strong Memorial Hospital, Rochester, NY (Wilmot Cancer Center)
Oncologist: Alok Khorana
In remission (currently or was)? Yes
Survived since diagnosis (years/months/weeks): 2 years 11 months
Chemo 1: Gemzar
Length (and/or number of treatments) of chemo 1: 6 months, 1x week/3 weeks, 1 week off
CA19.9 trend during Chemo 1: 17
Side effects Chemo 1: constipation , intestinal blockage, general yucky-ness, nausea, dehydration
Chemo 2: n/a
Length (and/or number of treatments) of chemo 2: n/a
CA19.9 trend during Chemo 2: n/a
Side effects Chemo 2: n/a
Chemo 3: n/a
Length (and/or number of treatments) of chemo 3: n/a
CA19.9 trend during Chemo 3: n/a
Side effects Chemo 3: n/a
Advice for chemo: Stay hydrated, ask for change in nausea drugs if one not working, keep bowels moving, GET A PORT
Cyber knife? NO
Radiation? NO
CA19.9 trend during radiation:NO
Chemoembolization?NO
Radioembolization? NO
Experimental treatments?NO
Any other conventional treatments?NO
Alternative treatment? Reiki, Acupuncture, Massage
Use of supplements? NO
Special diet? Don’t eat red meat and little dairy
Complications during treatments?
What worked for nausea (best)? Ativan
Biggest regret: None
Best advice given to me: Be kind to yourself.
Best tip/idea/recommendation: Get a port for chemo right away, it saves a lot of anxiety and pain
What would you have done differently? Nothing
Current status: Healthy, scan due in December
Comments:
I’ll edit this later on and add my comments then.Age:
Gender: Male
Age when diagnosed: 73
Diagnosis and Stage:1B ExtraHepatic In bile duct valve.
Initial CA19.9:
Lymph nodes involved? NO
History of cancer? NO
Resectable?
Had surgery (with details if applicable) WHIPPLE
Liver transplant? NO
Hospital: Columbia in Milwaukee, WI
Oncologist: Lyle Henry, Milwaukee/Jack Cavalcant, Phoenix
In remission (currently or was)? 3 years
Survived since diagnosis (years/months/weeks): 5 Years 4 Months
Chemo 1: 5 Doctors/Radiologists said No
Length (and/or number of treatments) of chemo 1:
CA19.9 trend during Chemo 1:
Side effects Chemo 1:
Chemo 2:
Length (and/or number of treatments) of chemo 2:
CA19.9 trend during Chemo 2:
Side effects Chemo 2:
Chemo 3:
Length (and/or number of treatments) of chemo 3:
CA19.9 trend during Chemo 3:
Side effects Chemo 3:
Advice for chemo:
Cyber knife? Yes 3 years after Whipple returned to where Duodenum used to be.
Radiation? Yes to bring tumor under 7CM for Cyber Knife (25 treatments)
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
Experimental treatments?
Any other conventional treatments?
Alternative treatment?
Use of supplements? B12 shots monthly
Special diet? NO
Complications during treatments? 1st Whipple aborted after 4 hours in surgery/2 nd Whipple successful/double e coli infection between the 2 surgeries/little hole developed inside, required 3 weeks in rehab on only IV to heal.
What worked for nausea (best)? Zofran/Compazine
Biggest regret:Not taking his Morphine to in Hospice Facility at end.
Best advice given to me: Be strong, by Patient
Best tip/idea/recommendation: Be strong. Listen to your Gut. Get 2nd/3rd Opinion
What would you have done differently? 5 years ago things were different from today, but no regrets.
Current status:Teddy Passed on December 6, 2010.
Comments:Email tryingtohelp
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2 Reply by lisacraine Yesterday 18Age: 48
Gender: Female
Age when diagnosed: 46
Diagnosis and Stage: Intrahepatic CC- Stage 4
Initial CA19.9: 873
Lymph nodes involved? Yes, one in the gallbladder
History of cancer? No
Resectable? Yes
Had surgery (with details if applicable)? Liver resection in September 2010 removing over 75% of my liver. The gross mass of the tumor completely removed but could not get clean margins due to it being up against the portal vein so they burned an additional 3 mm. Second liver resection in August 2011 to remove two new tumors. This time they removed over 35% of my liver using surgery, nano knife and intraoperative radiation.Liver transplant? No
Hospital: The Cleveland Clinic Foundation
Oncologist: Dr. John Fung(liver surgeon) – Dr. Bassam Estfan(oncologist) – Dr. Kevin Stephens(radiologist)
In remission (currently or was)? Yes, 14 weeks ago my scan showed the two tumors were dead and my CA 19-9 was 25.
Survived since diagnosis (years/months/weeks):2 years, 2 months
Chemo 1: 5 FU
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: trended down
Side effects Chemo 1: fatigue, nauseau
Chemo 2: gemcitibine
Length (and/or number of treatments) of chemo 2: 4 months and stopped because new tumors developed
CA19.9 trend during Chemo 2: increasing numbers
Side effects Chemo 2: fatigue, nausea, GI pain, aches and pains
Chemo 3: FOLFOX
Length (and/or number of treatments) of chemo 3:4 months then stopped because new tumors developed
CA19.9 trend during Chemo 3: numbers increased
Side effects Chemo 3: neuropathy, fatigue, nausea , hyper pigmentation, mouth sores
Advice for chemo:
Cyber knife? No
Radiation? Yes, steriotactic radiation, two different times
CA19.9 trend during radiation: initially went up as radiation killed off the tumors then decreased. The tumors were killed both times by the steriotactic radiation.
Chemoembolization? No
Radioembolization? No
Experimental treatments? No
Any other conventional treatments?
Alternative treatment? Acupuncture for side effects of chemo – very helpful
Use of supplements? Selenium, vitamin C, vitamin D, iron and omega 3-6-9
Special diet? Green juice once a day. Limited sugar. Very limited amounts of animal products. Very little dairy products. Mostly organic diet, about 80%. Green tea.
What worked for nausea (best)? Compazine
Biggest regret: not going to the doctor sooner
Best advice given to me: pray, stay positive, go to a specialist that treats many CC patients, get a second opinion, never give up hope.
Best tip/idea/recommendation: diet changes have really kept me feeling good. Post your status updates on caringbridge or a blog so you don’t have to call everyone anytime there is a change.
What would you have done differently? Gone to the doctor sooner
Current status: blood work and pet/cat scan coming up
Comments: research and stay on top of your illness but don’t believe everything you read.Hello everyone. I’m staring a new topic that hopefully would help newly diagnosed, as well as being good resource for others who continue their fight. When I was researching information for my husband, I would often come across an issue that while I think I found “identical” case, going back I find that the person might had a resection or liver transplant, therefore it won’t apply to my husband’ case. And kept thinking, that it would be nice if we had a topic with summary of experience and after finding similar case, research it further or contact that specific person (patient/caregiver). Of course I understand that no case is identical and everybody reacts differently to the treatment, but I still think it would be helpful for many.
Below you will see the list of questions and please answer only to the questions that you are comfortable answering and skip others, if needed. If you’d like to add any other question, that might benefit others – please do so. Or if you had more than 3 chemos and multiple instances of radiation – please add that information as well. I also think that summary of information about our loved ones who already passed, would be helpful as well. I appreciate everybody’s input! Sincerely, AllaPlease copy and paste the questions below into your reply –
Age:
Gender:
Age when diagnosed:
Diagnosis and Stage:
Jaundice:
Initial CA19.9:
Lymph nodes involved?
History of cancer?
Resectable?
Had surgery (with details if applicable)?
Liver transplant?
Hospital:
Oncologist:
Second opinion:
In remission (currently or was)?
Survived since diagnosis (years/months/weeks):
Chemo 1:
Length (and/or number of treatments) of chemo 1:
CA19.9 trend during Chemo 1:
Side effects Chemo 1:
Chemo 2:
Length (and/or number of treatments) of chemo 2:
CA19.9 trend during Chemo 2:
Side effects Chemo 2:
Chemo 3:
Length (and/or number of treatments) of chemo 3:
CA19.9 trend during Chemo 3:
Side effects Chemo 3:
Advice for chemo:
Cyber knife?
Radiation?
CA19.9 trend during radiation:
Chemoembolization?
Radioembolization?
Experimental treatments/Clinical Trials?
Any other conventional treatments?
Blood transfusion?
Alternative treatment?
Use of supplements?
Special diet?
Complications during treatments?
What worked for nausea (best)?
Biggest regret:
Best advice given to me:
Best tip/idea/recommendation:
What would you have done differently?
Current status:
Comments:
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