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Summary and ResearchEdit
Assuming surgery is not possible initially, the most common First-line therapy is a combination chemotherapy regime made up of two chemo agents: Gemcitabine + Cisplatin (Gem/Cis). This emerging standard of care is based on the results of the ABC02 clinical trial that demostrated the survival advantage of GemCis compared to gemcitabine alone.
Patient Experiences and SuggestionsEdit
Experience from jscott
- So far, my wife has tolerated 12 cycles of Gem/Cis very well. Each cycle has consisted of 21 days, with therapy on day 1 and day 8. Details of our overall experience can be found here. For the gem/cis therapy, there are a few things I would highlight for new patients:
- Andrea got a chemo port prior to starting Gem/Cis. This was hugely helpful. We saw a number of patients getting chemo with an IV, and that looked very painful. A port a least lowers the stress of "chemo day," Even though getting the port was a surgical procedure and somewhat painful, Andrea is a big believer that getting it was a very good decision.
- Try to start treatment with "Emend" added to your chemo. Emend is an anti-nausea drug. After the first treatment of Gem/Cis, Andrea reported fairly significant nausea. The doctor added Emend to her chemo, and it made a huge difference. Other patients have also reported a big difference with and without emend. Our question was -- Why not start with this included??
- The typical routine for Andrea was to have chemo on Wed (day 1), and then actually feel pretty good during day 1 and day 2. The steroids that are a part of the chemo regime seem to help make these days pretty ok. Friday (day 3) is the day that things start going down hill. For the first few treatments, Andrea had a low grade fever on Friday. In addition, she would start to get neck pains which are similar to what the flu feels like. Saturday (day 4) was typically the worst day with Andrea wanting to mostly rest that day. Sunday is much improved over Saturday. Things then steadily improve until the next chemo day.
- After the first 4 or 5 cycles, Andrea's white blood cell count started to dip too low. We had to add neupogen shots (3 and then 4 per treatment) to help keep her blood counts high enough for chemo.
- Roughly every 3 weeks (on day 1 of each cycle), Andrea would have her CA 19-9 checked. We were very concerned that the CA 19-9 initially increased. An oncologist told us not to be too concerned with the initial change in CA 19-9 because sometimes the initial stress of chemo on the cancer cells actually causes an increase in CA 19-9. This was the case for Andrea. The CA 19-9 reading did not decline until three months after chemo began. Here is a graph of the CA 19-9 experience:
- After 12 cycles, The therapy has worked well. The tumors have shrunk, and the PT scan indicates that the tumors do not currently consume sugar at an elevated level. However, Andrea's blood counts are getting low, and she is in need of a chemo break. The plan is to take a chemo break and try to irradiate the primary tumor with IMRT treatments. Stopping a chemotherapy that is working is hard to do, but hopefully the radiation will prove helpful. If things go sideways in the future, we hope that going back to Gem/Cis will be effective again.
Experience from bananaf1ish from here.
- My mom, who’s 67 and retired, had her 5th gem/cis this week. Today is her 9th day in her Cycle 3 (she has chemo for two weeks then rests one week).
- On her days 8,9, and 10 for both this cycle and last, she's been experiencing shortness of breath. I read on the discussion boards that this is a common side effect of the chemo. I wonder if she should skip exercising on days like this. She tries to get in at least 30 minutes of walking every day, but she sounded so weak on the phone today that I wonder if she's up for it. I did tell her to listen to her body and not push herself too much.
- The other night during this cycle, she had really bad pain in her ribs. During her latest check-up, her ONC told her that sometimes this particular chemo treatment could cause bone marrow loss that could cause bone pains, so I wonder if this is related. The doc said that some people take Claritin on the days before, of, and after chemo to alleviate the pain, but my mom hasn’t tried this.
- I told my mom about the discussion board's resounding support for taking pain medications as needed, so she's more open to taking them, but she still hasn't taken any as of now. She said she considered it for the rib pain, but she didn't want to take it on an empty stomach as doing so has given her problems before. Right now, she thinks she can get by on just taking dexamethasone on the two days following chemo.
- She's had constipation once or twice since starting chemo, but she's been okay with just eating prunes or drinking green juice first thing in the morning to treat it.
- Her 19-9 tumor markers are going down steadily (296 to 221, then to 192), but there was a rise in her CEA numbers (9.2 to 9.0 to 13.9). When I asked the nurse about this, he said that a number of things could explain that rise but that the only certain thing that'll give a definite answer is a CT scan, which she is scheduled for at the end of December.
- She experienced some tingling sensations in her fingers, but they haven’t been too bad. Her overall pain and discomfort are decreasing, so right now, fatigue is the biggest side effect she’s experiencing. She felt nauseated just once or twice before eating, but again, not bad enough that she hasn’t been able to eat. In fact, she’s been eating well and is not losing any weight.
- She did get acupuncture to help with the discomfort two weeks ago, but it didn’t help her too much – maybe because she wasn’t in too much pain to begin with. The acupuncturist told her to come back after she’s done with chemotherapy (he also told her that based on his diagnosis, he didn’t think she had cancer; I got very angry about this irresponsible “diagnosis,” so I’m not exactly sad that he told her not to come during chemo).
- She has two more weeks of chemo before the scan, which will mean she will have had 4 cycles by then. I’ll provide updates with her future lab work results if anything seems out of the ordinary. In the meantime, it might be useful to have all the gem/cis related concerns/tips/success stories in one post, so I would be very grateful if some of you shared your own experiences as well.
Experience from mcwgoat here.
- I am on Cis/Gem and just finished my third treatment on Friday, 11/29. This is my week off then I'm back on for two Fridays starting 12/13. I am hoping to be able to get enough of this treatment in me to shrink the tumors.
- My main side effects are swollen feet, ankles and legs. Even though I'm careful to elevate my legs the first two days after treatment, the swelling doesn't seem to ever go away completely. It doesn't hurt me but can be a little tender when I touch my feet or legs. I feel I can deal with it as long as the chemo is working. I am urinating ok so I don't think it's a kidney issue.
- The other issue is my stomach being so bloated. That is very uncomfortable and makes it impossible to zip/button pants. I have been on a laxative/stool softener regimen for awhile due to constipation issues. The doctor did mention that my tumors that grew significantly are pressing against other organs in my abdomen area and can cause swelling. But it seems the bloating got worse after I started Gem/Cis 11/8. Again, I will deal with it if it helps the tumors shrink.
- And then the fatigue - it can be overwhelming. But I will deal with all of this if the chemo helps me!
Experience from DukeNukem here.
- My current story began July 3, 2013 (the back story will have to wait). I had been working 8-12 hours a day 5-7 days a week for 10 weeks and had lost 23 pounds with no end in sight. I'm 5' 10” so 150 pounds was a little light. Primary Care Physician ran some blood tests and scheduled me for a CT scan July 5 with a colonoscopy the following week (my first, even though I am 62). First visit to Oncologist was July 10 (Seidman Cancer Center joint venture between University Hospitals in Cleveland, Ohio and University Hospitals in Lake County). She said it was inoperable, radiation would not work, and if I didn't start chemo soon, I would be dead in six months. Tri-fecta. CA 19-9 was 636. Alkaline phosphatase was 761. MRCP on July 22. Identified cancer in lymph nodes, lungs, and liver. Liver tumor was 19 cm. Biopsies confirmed cancer in the lymph nodes and liver. I understand that late diagnosis at stage 4 is common.
- Started with cisplatin and gemzar July 24 (had a little nausea one day) but changed to carboplatin and gemzar and no more nausea. One week of cis-gem, gem only a week later, then a week off. Had another CT scan September 20. Liver tumor had shrunk to 17 cm. Yesterday's CA 19-9 was 61 and alk-phos was 157. Completed my sixth round November 13. Had to take last week off, platelets were 77,000. Back up to 199,000 yesterday. Will have next CT scan in mid-December (after round 7). Had ringing in my ears since teens but it has worsened slightly; hearing had also worsened. I can hear, but have problems discerning words from some people in some situations. Not sure if it is the chemo or CC. Small amount of chemo brain and crabbiness from time to time. Initially had problems with constipation but Senokot-S became my best friend (actually the WalMart generic works fine).
- Weight is back to 160-165 pounds (lowest was 140 pounds). Very little neuropathy. Platelets are low, 90,000-130,000.
- I'm having chiropractics done to alleviate shoulder/neck/lower back pains that existed well before CC. Also having acupuncture for liver. He has me on BHP3 tablets (from Traditional Chinese Medicine) which I take not as often as recommended but are supposed to be formulated to work with chemo.