rvb
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Hmmmm. I love seafood, all kind of fish, mollusks and shellfish. I have noticed a lot of our shrimp has been imported from Vietnam. I hope there is no connection! And I do live in New Jersey…on the East Coast. Oh boy.
Hello Percy. Thank you for your usual prompt response. And my apologies for my delayed reply. It has been of a busy bunch of days.
Rather than continue to hijack Sandie’s thread, I thought to jump onto this one, keeping the continuity of the conversation.To review:
PCL1029 20 July 2013
“If I may, Sandie, I had my 3rd recurrence in June,2013. It was about 20 months after my 2nd resection on Oct. 2011. Therefore we are a kind of similar in the tumor growth rate for intrahepatic cholangiocarcinoma(CCA).
Since I do not know about the medical systems in France, but if you can have a biopsy of the tumor to do a ” next-generation sequencing genomic profile “, it may be of value in current and future treatment. The idea was suggested to me in my 2nd consultation from MD Anderson for oncology consult .
This CCA really a disease of its own; most other cancers, after the removal of the tumor will enjoy a much longer disease free period,even primary liver cancer .
I know how it feels when CCA come back to say hi to me. But I know and prepare it will be back anyway because of the odds are high for intrahepatic CCA.”rvb 21 July 2013
“Percy, did I read correctly that you had a “next-generation sequencing genomic profile”, did it make a difference in treatment approach? Has anyone else had it done, and what was the outcome?PCL1029 21 July 2013
“The following is the exact quoted from the consult from MD Anderson:
…To make some suggestions, if not done I would recommend genetic sequencing for additional genes …..
I also got another oncology consult from university of Chicago, the direct quote
is as follows:
—I would also send the tumor tissue away for full sequencing if it has not already been done, just to see if there are any hints as to how to best treat your tumor….
What i think is that they try to leave no stones unturned for future treatments since targeted agents are famous for developing resistance early.
I am EGFR positive, so they recommend Tarceva for me if all the tumor were removed completely by RFA and PEI.
BTW, if TIL from NIH is not for you, you may consider clinical trial of PD-1 and the like (PDL-1).(immunotherapy agents).”rvb: If I am understanding correctly, the testing offered a more directed approach to your treatment? So it was successful as it appears to me, and good news for you. I will bring this information to my Nurse Practitioner on Monday’s appointment for her response. As mentioned previously, I am not looking forward to FOLFIRI. All options are on the table.
I did some quick research on the PD-1 and there appears to be a trial by Merck in Philadelphia. Side effects will have to be evaluated, of course. I am feeling pretty good for the state of the disease, and I would preferred not to feel too much worse.Again, I will pose the question: has anyone else had the testing? If so, what was the outcome…was it worth doing?
Again, thank you Percy for your help and information. Have a pleasant week, Renee
Shari, if you are still reading this forum, I would love to hear how you are doing. I was taken back by you being diagnosed with this at such a young age. Yet so pleasantly surprised to see you doing well up to your last post.
Looking forward to your update, Renée
Sandie, best wishes to you. Give it all the fight you have. And keep coming back to this site for as much encouragement as you can handle…there is plenty here to be had by helpful and loving people.
Take Care, Renée
Percy, did I read correctly that you had a “next-generation sequencing genomic profile”, did it make a difference in treatment approach? Has anyone else had it done, and what was the outcome?
My Onc suggested something of the sort, then dropped it. I suppose he realized I would need another biopsy as there was not enough tissue remaining in my original sample of February 2012.
I am on track to begin a third line of treatment (FOLFIRI), but my platelets are too low at this time to start. I read about Melinda’s success with the NIH TIL study and presented it to my Onc, but he dismissed it out of hand without giving a good reason. I have a ‘little’ A-Fib, so that may disqualify me from that trial anyway, according to the woman I spoke to at NIH.
Anyway, the above is why I am curious about the genomic profile and if it will be worth another biopsy. It seems my liver gets a bit annoyed with me when it gets stuck with needles (ie, biopsy, PVE, HACE) and likes to cause significant pain, nausea and vomiting for the following 12+ hours. I would like to avoid another biopsy if possible, but if it offers more or significant information, it would be worth it.
Thank you in advance to all, Renée
I thought that was pretty encouraging and worth a look.
I printed the info for my Onc and he was not impressed as there was only one case. Does anyone know of any further research on this topic?
Thanks in advance, RenéeAge: 58
Gender: F
Age when diagnosed: Liver Bx age 56.5
Diagnosis and Stage: Peripheral; Stage IV
Jaundice: No,
Initial CA19.9: 420
Lymph nodes involved? No
History of cancer? No
Resectable? Initially, yes
Had surgery (with details if applicable)? No
Liver transplant? No
Hospital: UMDNJ, Newark NJ
Oncologist: Michael Levitt, MD
Second opinion: Yes, CINJ
In remission (currently or was)? No
Survived since diagnosis (years/months/weeks): 16 months
Chemo 1: Gem/Cist 2 weeks on/1 week off
Length (and/or number of treatments) of chemo 1: 10 treatments
CA19.9 trend during Chemo 1: stable until 10/2012 then started to increase in October; peaked at 941 in November
Side effects Chemo 1: fatigue, nausea, severe pain with Neupogen injects not relieved w/Claritin or pain meds
Chemo 2: Xelox (oxaliplatin and Xeloda) 1 day oxali infusion with 14 days of Xeloda/1 week off
Length (and/or number of treatments) of chemo 2: 3 treatments; stopped 2/6/13 due to extreme side effect; restarted with 20% dose reduction 3/14/13 with two 1-week breaks due to low platelets
CA19.9 trend during Chemo 2: decreased significantly on second line of treatment from 941 even through the 5-week break to 232; started to rise in March; 6/11/13 number is up to 580
Side effects Chemo 2: initially significant loss of appetite, VERY watery diarrhea uncontrolled with meds, 25+ pound weight loss; anemia, fatigue, dehydration, and decreased electrolytes. With the current dose reduction, other than very occasional diarrhea, no side effects at all. However lowering platelets, Hemoglobin and WBCs are an issue.
Chemo 3: N/A…for now
Length (and/or number of treatments) of chemo 3:
CA19.9 trend during Chemo 3:
Side effects Chemo 3:
Advice for chemo: 1) Keep hydrated! Water should be the first choice if possible. 2) Stay ahead of the nausea/diarrhea/constipation/any side effect; once you have to start ‘chasing’ it, you will lose the race. 3) Listen to the experience of fellow Chemo Buddies on your chemo regimen. Often you will hear of symptoms or experiences that your doc or nurse may not have heard before…that has been my experience. 4) No matter what you read or what you hear from other patients or people with ‘advice’, mention it to your doc and/or nurse before trying it yourself. No two people are the same, reactions can be different from one person to the next.
Cyber knife? No
Radiation? No
CA19.9 trend during radiation:
Chemoembolization? 03/2012 HACE
Radioembolization? No
Experimental treatments/Clinical Trials? No
Any other conventional treatments? Portal Vein Embo along with HACE to prep for hepatic resection scheduled 5/22/12. Pre Op PET/CT 4/26/12 showed marked increase in size/number of tumors…surgery cancelled.
Blood transfusion? No
Alternative treatment? No
Use of supplements? L-Glutamine, B6 and B12 for neuopathy.
Special diet? No, I eat whatever I want. Time is not on my side, but ice cream is
Complications during treatments? See above.
What worked for nausea (best)? Nothing. Zofran, Compozine and Sancuso (patch) helped a bit but not very well when needed the most.
Biggest regret: That I do not have the money or transportation resource to go to a Comprehensive Cancer Center. I had to quite my job, and my husband is self-employed and cannot afford to lose work to drive me long distances for treatments and doctor visits. Although my Onc practice is good, they do not offer any services such as social workers, nutritionists, integrated medical advice, etc.
Best advice given to me: The oncology nurses have the best advice. I can’t think of anything specific, but they often have the answers I need.
Best tip/idea/recommendation: As mentioned above: A) Listen to the experience of fellow Chemo Buddies on your chemo regimen. Often you will hear of symptoms or experiences that your doc or nurse may not have heard before.
No matter what you read or what you hear from other patients or people with ‘advice’, mention it to your doc and/or nurse before trying it yourself.
What would you have done differently? I knew I had a liver mass since May 2011. I am a Sonographer and found a liver mass on a renal sonogram ordered for microhematuria…the mass was an incidental finding with no signs or symptoms of hepatobiliary disease. My bosses (Radiologists) thought it was a ‘hemangioma of uncommon behavior’ and I had six month serial US and MRIs. Perhaps I should have had a biopsy earlier, before the mass became much larger and additional tumors appeared in the December 2012 US. But then I would have been on chemo for a longer period of time and would not have enjoyed those 18 months of my life without thinking about CCA.
Current status: 13 months of chemo on second line of treatment with rising CA19.9.
Comments: Listen to the nurses. In my opinion, doctors treat the disease, nurses treat the patient. In my Onc Practice, the docs follow the straight and narrow path and do not deviate ‘outside the box’. If I ask the nurses in a respectful manner without undermining the opinion of the docs, I often get a better answer to some of my questions.
