My Wife’s Case
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Thank you, each one of you, for your thoughtful and helpful responses. Every one helped fill in a little bit more of the information that I use to help my wife get the best care possible.
Unfortunately, my wife’s nausea almost certainly comes primarily from her cancer rather than from the chemo. I pressed the doctor to do a follow up CT scan this week instead of waiting until the next two rounds of chemo were complete. The scan showed that the Cisplatin/Gemzar combination did not stop the cancer from growing. Her tumors are significantly larger than they were before she started chemo.
Her oncologist is changing her from the Cisplatin/Gemzar combination to a combination called FOLFOX. He is hoping for a response from that regimen despite the lack of response from the original regimen.
He also gave us results from a genetic profiling of my wife’s cancer. He said that she had a IDH1 mutation and that she might qualify for certain clinical trials. So that was a potential silver lining in a day full of disappointing news.
Does anyone have any experience with treatments involving the IDH1 mutuation? How about FOLFOX? Thanks again for your kind words and encouragement.
Lou
Hello Lou!
I’m so sorry to hear that your wife is experiencing so much nausea. As you posted this message on Tuesday, I’m hoping perhaps that she has seen her oncologist since then and discussed her recurrent nausea and found some relief.
In looking over your message and thinking about a few things, the first question I had is concerning the medications that she takes for her nausea before chemotherapy, the day of chemotherapy, and for the days following her infusion.
One of the medications she is receiving, Cisplatin, is referred to as a “highly emetogenic” agent, or in layman’s terms, it causes severe nausea. There are clear guidelines on the management of chemotherapy induced nausea and vomiting for medications such as Cisplatin, and it wouldn’t hurt to ask if your wife is receiving the medications as recommended. The guidelines are actually quite lengthy, so I only included the first top section of the National Comprehensive Cancer Network (NCCN) antiemesis guidelines from 2017.For the professional guidelines an account is needed, but is free to set up.
https://www.nccn.org/patients/resources/life_with_cancer/managing_symptoms/preventing_nausea.aspx
There may be other reasons for her persistent nausea as well including the effects of the tumor. Here is a great resource for you to look through from the National Cancer Institute on nausea and vomiting in cancer.https://www.cancer.gov/about-cancer/treatment/side-effects/nausea/nausea-pdq
This can be an issue that will require a lot of trial and error, changing of medications, working to find foods/beverages that are easily digested, etc. I have also seen some good success with the use of peppermint oil on a cotton ball in a little dish, and having an individual gently inhale the aroma of this. Yes I know it sounds silly, but I have seen it work for some individuals who were struggling with ongoing nausea due to liver, colon, and endometrial cancers…or cancers that are prone to causing nausea.
It is low-tech, but worth a try but do always ask her oncologist or oncology nurse before trying anything new, and do not use this if your wife as an allergy to peppermint.
Does the facility where your wife is being treated have palliative care physicians on staff? If so, it might be a good idea to see if someone from their service could be a consult and work with the oncologist to treat her nausea.
Palliative care specialists are <i>not</i> hospice doctors, but practitioners who specialize in symptom management on a short term or long term basis. This physician team (Oncologist/Palliative care physician) could work together to trial different medications, or work with a nutritionist, manage pain medications, constipation, etc. They work wonders and are a great asset when struggling with persistent and distressing symptoms.Lou, I will be thinking of the both of you and keeping good thoughts and hope for relief of the nausea. Please let us know how you are both doing.
-Karen
THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
Welcome to the family we wished none of us had to belong to! My husband also seems to have his highest energy levels and lowest nausea on chemo days. I do think it’s due to all of the additional fluids and IV anti nausea meds they deliver alongside the chemo. His first repeat PET scan post 3 rounds of GEM/CIS showed decreased activity or size in almost all areas in which the cancer is present, with the exception of the bone mets. Hoping the next 3 rounds go as well and that your wife also sees reductions with the treatment!
Hello Lou,
Thanks for joining the board and sharing your experiences.
It’s unusual that she feels better with more energy after chemo. Most chemo side effects are extreme fatigue and nausea, plus others depending on how the individual’s body reacts. It seems that there would be more nausea with chemo treatment than without. I can give a perspective without chemo which is to chew fresh ginger throughout day or after meals, obviously just getting the juice and discarding the rest.
Keep us posted.Lou…..I hope for many others to chime in on this conversation. All of us can relate in one way or another.
I have learned that liver disease of any kind causes nausea and fatigue, hence not necessarily are your wife’s symptoms related to non-response to treatment.
I will forward your posting to Karen, oncology nurse, for review of the medications taken for nausea.
Hugs
MarionDear LOU , Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey. Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
There are quite a few Meds for Nausea and perhaps a change would do well for your wife. I know many feel that the more sick you are with Chemo side effects the more it is being effective. SO far nothing has been proven but it is a good thought.
I do want you to know that we have many members here who were DX with multiple tumors and Stage IV and they eventually went on to have a resection after chemo. Hang in and hang on this is quite a ride. Know that you are not alone we are all family here. Please do keep us updated on your wife’s progress as we truly care.Hello. Thank you to all those who have posted information on the board. I’ve been reading the posts and the stories and appreciate the time and effort devoted to helping others. It has been helpful to me.
My wife, age 50, was diagnosed with stage IV ICC about 8 weeks ago. She has a large tumor in her liver and 10-12 smaller ones also throughout the liver. We were told resection or transplant was not an option. She started cisplatin/Gemzar treatments and has completed four treatments as part of two three-week cycles of two-weeks of treatment followed by one week with no treatment. She has another three-week cycle to complete and will then get another CT scan to monitor the response to the treatments.
Her cancer was discovered after she complained of recurring nausea and pain in her side, mostly after eating. Her dad had his gallbladder out and we were thinking that might be what they would find. But instead they found the cancer.
The nausea continues to be the main symptom, but it doesn’t seem to be coming from the chemo. Her best days are the days she receives chemo. On those days, she gets chemo in the morning, and in the afternoon she has pretty much no nausea and more energy than other days. We believe this is from the IV drugs, but don’t really know. The next day the nausea returns and begins to build. As the days go by, she seems to get more nauseous each day and actually looks forward to getting to the next chemo treatment.
Has anyone had a similar situation? She is taking several anti-nausea medications every day, staggering them or taking them together to see what works. They help suppress the nausea but it comes back as soon as they start to wear off. She’s also fatigued, which we assume is from the chemo. The other thing she describes to me is the feeling that she doesn’t have the energy to move but that she can’t fall asleep and that she just lays there going crazy.
I worry that the inability to get rid of the nausea and the way it is constant means that the chemo is not working. I’m wondering if anyone has any advice on how to deal with nausea if it is caused by the disease rather than chemo?
Thanks,
Lou R.
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