Experience with Gem/Cis chemotherapy
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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.
Caroline,
Thank you so much for this post. 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!
Some background info…I am 58 yrs old. I was 56 when I was diagnosed with adenocarcinoma unknown primary in 8/11. I had a tumor wrapped around my hepatic/celiac arteries and a tumor running along my portal vein. I had a few different chemos and traditional radiation. But then in February 2013, after my scheduled PET scan and MRI, the diagnosis changed to cholangiocarcinoma stage IV, because of the tumor found in my liver. So in March I met with a radiation oncologist at Sloan Kettering in NYC and in May started Stereostatic Body Radiation Therapy (SBRT). At that time I became jaundiced but they let me finish the five SBRT treatments and after that a metal stent (May 2013) was put in the bile duct in my liver and thankfully it worked to bring down my bilirubin and continues to do so as of today!!! So I was able to start chemo – Paclitaxel until it became ineffective last month (November 2013). That’s when I was told the tumors had grown significantly and there are two new, small tumors – one in my abdomen and one in my liver. So now I am on the Gem/Cis and hoping it helps.
Sorry for rambling on but I thought the background info would be helpful.
Love & Peace,
MaryCaroline….perfect – this thread will grow. It is not until we are able to organize this site in a manner easy to access, the information will be hidden in the abundance of postings. By entering Gem/Cis into the Search function, this appeared. I realize that it cumbersome to sort through, but until others have a chance to respond, it might be of help to you:
http://www.cholangiocarcinoma.org/punbb/search.php?search_id=1261842786Hugs,
MarionI did a quick search for a recent post exclusively on experiences with gem/cis chemotherapy and didn’t see one, so I’m starting this post in the hopes that it’ll be useful for those who are going through the treatment (or considering it) to hear about other people’s experiences. This was inspired by Patricia’s (Lady Linden) question, to chemo or not to chemo, and by my own skepticism when I heard that there was no specific chemo drug for cc.
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.
Many thanks,
Caroline
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