Eli
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Hi Derin,
You wrote:
Quote:I’m a bit confused on the ‘radiation’ part as from what I understand it is typically targeted at a ‘tumor’ to shrink it. What will they aim my radiation at?They will aim it at a “3D area” that surrounds the location of the tumor. The shape of the “3D area” is irregular. The area includes certain organs: the remaining bile ducts, part of the liver, the surrounding lymph nodes, possibly duodenum and small intestine, possibly the bottom part of the stomach (pylorus). They want to stay away from the organs that (a) are unlikely to harbor cancer cells and (b) are very sensitive to radiation. Spine being the most important one (radiation therapy carries a very small risk of spine injury).
Radiation is routinely used in resected cases that are deemed high risk. Positive margins or/and positive lymph nodes. You wrote that you have neither. So I’m not sure why they decided to give you radiation. You might want to ask them for a more detailed explanation.
Best wishes,
EliKeep in mind, S-1 therapy is only used in Asia. Western hospitals don’t use it. Western patients can’t take it because of genetic differences. It’s either ineffective or causes bad reaction (don’t remember the exact details).
Derin, my wife is on Gemcitabine/Cisplatin. We do spend about 5 hours in the hospital. We arrive 2 hours before our chemo appointment to do the blood test. Then we sit and wait. Chemo session itself lasts about 2.5 hours. 30 minutes premedication by Zofran/Decadron. 1 hour gemcitabine. 1 hour cisplatin.
Our oncologist is very cautious, but not as cautious as yours. My wife started on Gem/Cis right away.
Good luck,
EliSharon, ask your oncologist if Neupogen (filgrastim) is right for your mom. It’s an injection that stimulates the growth of white blood cells.
My wife had her third gemcitabine/cisplatin session today. Day 1 of the second cycle. Her white cell counts were low as well. Too low for our oncologist liking. He gave us two options: postpone chemo until the counts come back, or start Neupogen injections. We opted for option B.
FYI, neupogen injections will be given 3 days in row after Day 1 of the cycle, and 7 days in row after Day 8 of the cycle.
Good luck,
Elisimon555 wrote:NOW, GET this… our local oncologist’s associate told him that food will only feed the cancer…What an idiot!
What do they call the guy who finished dead last in the medical school? ….. A Doctor.
(sigh)
Jim Wilde wrote:I think my visit with the onc next month will include a question about the wisdom of doing chemo again.Jim,
I’m curious to hear what your oncologists has to say about your idea.
I often wonder why doctors don’t use “maintenance chemo” to manage CC patients in remission. Say, two cycles on an annual basis as a preventive measure. Was there a clinical trial that ruled out preventive chemo for some reason? Such as… a concern that cancer cells might become chemo-resistant too soon? Is it a cost issue, i.e. insurance companies not willing to pay?
Good luck, and please do let us know.
Best wishes,
EliHi Jtoro,
My wife was on 5FU for six weeks, combined with radiation. The worst side effect from 5FU was hand-foot syndrome. You can find TONS of information about it by doing a google search:
http://www.google.com/search?q=hand+foot+syndrome
Re second drug: the name is oxaliplatin. Do another search of the old posts using the correct spelling. Hopefully you will find more posts.
Best wishes,
EliHi Randi,
We have an appointment in genetic clinic coming up. We got the referral from our oncologist. We want to discuss our daughter’s cancer risk. They will do genetic testing if necessary. Don’t know what kind of testing.
But I do know this. My wife’s boss’s wife has breast cancer. **One year** before she got diagnosed she went to genetic clinic. She was concerned about breast cancers in her close family. They ran some genetic tests on her and they all came back negative. They told her to stop worrying. One year later she got diagnosed. Go figure.
Best wishes,
EliPam.. best of luck with chemo. Fingers crossed that Lauren will be able to get her next round.
You are so right to take Ryan with you. I’m certain it will be an eye opener. My wife is having chemo tomorrow as well. We are debating taking our daughter with us, for exactly the same reason. We are supposed to get a big snow storm tomorrow, so we are still on the fence about dragging her with us.
Wishing you a safe trip,
EliHi Roni,
I just want to say thanks for dropping by in “my” thread and sharing your story. I know exactly what your family is going through and how hard it is. Please know that I do care and please stay in touch.
Wishing your mom the best in her fight.
Hugs,
EliHi Tiffany,
Chances are your doctor didn’t order CA 19-9 test and that’s why you don’t see it on the paper with the rest of your results. In our hospital, the doctor has to manually write “CA 19-9” on the test requisition. It’s not a standard box to tick off. The test takes more than a day to complete, longer than the standard tests.
CA 19-9 is not a perfect test. As your doctor said, it can go up and down (within certain range) for no good reason at all. That said, it’s still a useful test to monitor tumor response to chemo. If you see that CA 19-9 steadily goes down as you do chemo cycles, that’s a positive sign. If you see that CA 19-9 steadily climbs up or spikes like crazy, that’s a cause for concern.
Your scan (CT, MRI or PET) is the ultimate test. It can be used to measure the tumor size. It’s a far more reliable test than CA 19-9.
Best wishes,
EliJanine, I’m so happy for you. Wonderful news!!
Have a Merry Christmas and keep the good news coming!
Wishing you the best,
EliBob, wow!!! You are an inspiration!
I copied and forwarded your post to my wife. It will be the first thing she reads tomorrow morning. She had positive margins after her Whipple… she NEEDS to hear your story.
Merry Christmas to you. Best Wishes in the New Year!!!
Thank you everyone for your feedback!
Pam:
My wife doesn’t get Palonsetron/Aloxi. She received an IV of Zofran + Dexamethason. They controlled nausea really well.
You wrote that you linked Lauren’s headache to Zofran. My wife was on Zofran during her previous therapy (radiation + 5FU). She didn’t have any headaches then. So we are pointing fingers elsewhere. We think it’s either dexamethason or gemcitabine. Gemcitabine info sheet mentions headache as a possible side effect. They suggest taking 1-2 tablets of plain acetaminophen (Tylenol) 30 minutes before chemo. We will try that next time.
We also like the idea of tylenol + caffeine for headache. We noticed that my wife’s blood pressure dropped after chemo (the nurses measured it before and after). My wife is pretty certain that low blood pressure can cause a headache, just like high blood pressure does. Caffeine is supposed to help with that.
Percy:
Hospital instructions say in large print: NO ASPIRIN DURING TREATMENT; use acetaminophen (Tylenol) for headache, fever, or occasional aches and pains. As much as I trust your medical expertise, we are not going to try “Excedrin migraine” for headache. Gotta follow hospital instructions.
Eli
