Chemotherapy What can we expect?
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Hi Katemarykate,
Not being a scientist or doctor, I struggle to understand the details of the new treatments. My layman’s understanding is there are two classes of new treatments that overlap. Targeted treatments as their name suggests go after specific genomic defects that cause or influence the course of a cancer. Immunotherapy builds the body’s immune defenses to fight cancer. They overlap when there is a genomic defect present that limits the effectiveness of the immmune system. For example, the new checkpoint inhibitor drugs such as Pembrolizumab (Keytruda) act upon a genomic defect related to the immune system called micro satellite instability.
Immunotherapy as a class of treatments does not necessarily need there to be an underlying genomic defect to target. A number of the trials available now are combining immunotherapy treatments with traditional chemotherapy out of a belief that they may boost chemo’s effectiveness.
In other words, even if genomic testing does not show a targetable defect, there may still be immunotherapy options to try, for example, through participation in a clinical trial.
Regards, Mary
Gavin, thank you for the glossary-very helpful.
Mary, thank you, I will ask what the Oncologist is thinking next week when my husband goes for treatment. The Doctor did not give any details when we last met and we didn’t pursue further as we were asking about the Folfox regime I was a bit baffled as the genomic testing did not come up with anything identifiable and thought immunotherapy was off the table.
Hi Kate,
With regards to medical terminology and all of that stuff, it is no wonder we all get confused sometimes with everything that is thrown at us to do with all of this! I know that I did loads with my dad as well. We have a link here on the site that could help with all of that under the “educational section” Here it is –
https://cholangiocarcinoma.org/the-disease/glossary-2/
Hope that this may help a bit and apologies if you have already seen that page.
My best to you and your husband,
Gavin
Hi Kate,
It sounds like your husband’s doctors are monitoring his case carefully and thinking of next steps for when the gem-cis starts losing effectiveness. Folfox is a fairly common second-line treatment. If you search Folfox on the discussion board search function, you can find patient stories.
Your doctor raised immunotherapy as an option. Do you know what he has in mind? Since this is a newer class of cancer treatments, for many patients immunotherapy means participating in a clinical trial. Some of the trials combine immunotherapy drugs with traditional chemo as a means to boost their effectiveness.
Clinical trial information is available on the Cholangiocarcinoma Foundation website and at clinicaltrials.gov. You may find it helpful to look at trials available in your location, as you and your husband consider which treatment comes next.
It sounds like your husband has had a good long run with gem-cis. Hopefully, his next round of treatment will give him the same.
Please keep us posted. Regards, Mary
Update.
My husband has intrahepatic CCA. I am not sure that I knew that because I read “extra hepatic” on a discharge sheet months back and it stuck in my mind. More medical terminology that just gets jumbled when I am in panic mode; however, based on what I have read a rather critical mistake on my part from an expectation perspective.
The most recent scan showed “possible” growth in the tendril which is wrapped around the duodenum. My husband had a stent inserted in his duodenum a couple of months ago to keep it open. I asked the oncologist how the radiologist can measure the cancer versus the PSC and he said it was challenging; however, the tendril is definitely CCA not PSC. We seem to get more accuracy from the GI doc than radiology. Maybe because he is seeing the disease and the cancer through the ERCP procedures?
We are now 6 months into Gem/Cis and are advised that it will likely be drawing to a close with a transition to the Folfox regime. I would be grateful for insight on this regime from anyone who has undergone it after gem/cis failed ?
The oncologist said when that treatment fails he will try immunotherapy even though my husband did not get any results from the genomic testing. Curious if immunotherapy should be tried before Folfox and if anyone has a point of view on this?
Thank you
Kate
love4life- Good luck with your scans, hope you see shrinkage, or at least stable tumors. Sometimes the chemo can help turn inoperable tumors into operable ones, if it hasnt spread outside the liver. If the scans show improvement, perhaps you should send copies of the scans to experienced surgeons and see what they think.
I have intraheptic cc, sugery is not avaliable I have been receiving cis/gem, this is a 6hour regime, 2hrs for fluids prior to chemo and 2 hours for fuilds after chemo every now and then i need a blood transfusion (so sometimes treatment is between 6-8hours long). I am now up to my fourth cycle now a CT scan has been arranged for next Wednesday (chemo tomorrow) what can i hope for? the turmor not growing, has stopped growing?? Stop treatment, change treatment, continue treatment until nerd damage, great information in this thread helps me to see what could be the next plan. Always hopefull.
Mary
Thank you-very helpful. In answer to your question-yes he had the foundation one testing and unfortunately had no matches. We were told there was a low probability of a match so were prepared for the results. What is interesting and I hadn’t thought about this was the ability to switch treatments back and forth. I will definitely ask the Oncologist about this.
Thank you so much
Kate
Hi Kate,
Stable is good news! And it is also good that you and the doctors are looking ahead to figure out next steps should they be needed.
My impression is that there is no way of predicting how long a chemo regimen will stay effective for a specific patient. The experience seems to vary from patient to patient. I have come across fellow patients who have been on gem-cis for well over a year.
Hearing loss is a potential side effect for cisplatin. Not everyone experiences this but enough do that doctors watch out for it and some periodically send gem-cis patients for hearing tests. I saw a study recently on this – here is the citation: https://www.cancer.gov/news-events/cancer-currents-blog/2018/cisplatin-hearing-loss
Gemzar is the brand name for gemcitabine. The famous ABC-02 study which compared gemcitabine alone with the gem-cis combo showed the combo to be more effective, and was the basis for gem-cis now being a standard of care. That said, some patients do report being treated with gem alone (which does have effectiveness with cholangiocarcinoma, just somewhat less so than gem-cis) in cases where they are not able to tolerate the stronger two-drug treatment.
My understanding is there is no standard second-line chemo regimen for cholangiocarcinoma. Patients report undertaking various combos, including Folfox, Folfiri and others. Looking into clinical trials is another option. Has your husband had genomic testing to see if his cancer shows genetic defects for which there are targeted treatments available through trials?
The experience with second-line treatments and clinical trials is also variable, but for many they do buy time. Some patients have gone years shifting from treatment to treatment, with a good quality of life. There is always hope.
This is the best I can do with your questions, not being a doctor. Since there is a range of possible next treatments for when your husband needs to move on from gem-cis, it will be important to be armed with info and questions for your medical team to be sure the next phase of the journey is the best possible option for him.
Keep us posted! Regards, Mary
Update and Question (always questions)
My husband had metal stents put in so we have been infection free for three months (yippee and I don’t know why I am referring to him as we but it feels like we). We met the Oncologist yesterday who gave us the pet scan results after 4.5 months of gem/Cis and he said that the cancer has held to the same size. He said we should be pleased with this as most patients in my husband’s condition see growth of the tumor at this point. Additionally he mentioned that cisplatin causes hearing loss and neuropathy so my husband may have to switch to gemzar (spelling?)
My questions as follows:
1) Can patients keep the cancer at bay for a long period of time on Cis/Gem combo?
2) does Cisplatin inevitably cause the above? OR do we have people who don’t get the side effects?
3) how effective is gemzar (sp?)
4) are the b line therapies as effective as cisplatin-does anyone know of anyone who has time given to them on those therapies?
Thank you all for being so kind and always providing insights through experience.
Best
Kate
Welcome! I am sorry it has taken me so long to reply and I hope your husband’s bilirubin has come down and he was able to continue chemo. I know this experience is really like a roller coaster, with so many ups and downs. Here is a link to a thread about my husband https://cholangiocarcinoma.org/db/topic/my-42-year-old-husband/. You might take a look at the post I made on May 18, 2017, for detailed info about his experience with chemo. I am so thankful for this board, as it has been a tremendous source of information. You can use the search feature to find information about a particular topic.
Hello Kate,
I understand your nightmare, as stent exchanges are risky also, in addition to this condition. My mom does not get chemo and bilirubin can shoot up high without it because of the nature of CC. It can be more blockage of the ducts causing a rapid rise of bilirubin in a short period of time. Migration of stents can also cause the bilirubin to go up quickly.
Catherine
Thank you. We ended up having a horrible weekend. My husband was fine last Thursday (the day of the chemo) all the way through Friday night when he got the worse stomach cramps of his life. He stayed up til 4 in the morning and finally fell asleep until 1pm. When he woke up the whites of his eyes were yellow so we had to go to the ER. They hydrated him, gave him IV antibiotics, admitted him for the night and did a stent replacement on Sunday morning. They said they can only put narrow gauge stents in because the PSC has caused so much damage and the narrow stents get clogged. I have no idea if they chemo did this or we were just unluckly. His bilibrubin went form .8 to 5 in the course of two days. Now we have to wait and see if they come down for round two this Thursday. Do you know if chemo makes the bilirubin count go up? It is such a challenge because the PSC has done such horrible damage to his bile ducts and between it and the cancer this seems like it is going to be a nightmare (well it already is a nightmare that I wouldn’t wish on my worst enemy).
Oh and he has a port (check) glad that is a good move-was also curious about the stomach cramps? Again not sure if that was the dreaded chemo or the infection? My husband is 55 and was really fit prior to the onslaught of this but he has lost a lot of weight too.
Kate
Dear Kate,
I’m sorry for the delayed response. I used to point member to a link on “hints” for chemo, but I searched this morning and could not find the original posts. I’m going to post the link in case some more knowledgeable with new format may be able to point you there :
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069
Mom went through 3 cycles of Gem/Cis 4 years ago and just finished 2 of 3 cycles this week. Going back to first experience, we wish we had a port put in right at the start. One of her most challenging things was them being able to find a vein. She had bad veins to begin with, and the chemo will make it worse.
Patients can get very cold during the treatments, so if using IV, I’d suggest buying a nice fleece vest for chemo days. It allows them to keep warm and still allows them to put in the IVs.
Expect the days to be LONG- blood taken and then waiting for results before they can start. First time around, we were at Univ of MD and the wait for a chair could take a few hours too. This time, she is having infusions at local hospital (still reporting back to UMD and will go there for surgery/radiation) and it is much quicker and a more calming environment, but still there from 730 to 330. We even feel comfortable not staying with her the whole day.
Mom’s first cycle was lousy with nausea, to the point she was ready to say no more, but then they added some IV fluids before the chemo and also having her take a steroid (dexamethasone) on days 2-4 when home. It was amazing that with these 2 simple things added, she no longer needed all the anti-nausea drugs ( she still gets EMEND in IV on chemo days and reglan before the chemo). And, this was in 2013, so it was definitely worth it 🙂
Other thought- during first cycle, they tried to have her take the EMEND by pill at home after the chemo. In addition to not working as well, the insurance company wanted hundreds of dollars for 6 pills whereas having it administered in hospital made it 100% covered by insurance ( medicare and secondary).
Some members can even keep working while on chemo. I think that age might have a lot to do with this ( but others can chime in). Mom is 77 now, and we told her we will not make her get a job while undergoing chemo 🙂 This time around, she is very tired and does not like the “chemo brain”. However, we ( and her ONC), keep telling her that for her age, she is putting unrealistic expectations on herself. Last week, she had chemo on Tues and on Friday went to Motor Vehicles to update car registration issues. She drove herself and waited the hour.
So… simple answer- expect fatigue. If he is having nausea, talk to ONC- with all the anti-nausea meds, they can control. However, many here have said how adding fluids and steroids can help too. If these are not in his protocol, you can ask/suggest. Speak up because they can adjust and make better. I wonder why they routinely don’t give fluids first- I guess it takes another hour, but even when my husband had colon cancer, adding the fluids beforehand tremendously helped his tolerance. However, Steroids can also make it hard to sleep, so take earlier in the day ( I saw one study said by 2pm).
Mom typically loves water, but now wants ginger ale. Cravings and what tastes good will change- just go with it.
First time around, Mom got dehydrated. I think she had a harder time than most first cycle since she was still recouping from surgery. However, if your husband gets sick a lot and is not getting fluids in ( This is NOT the norm) , err on side of caution and get him in for some IV fluids.
The ONC can do a great job on making chemo tolerable- speak up.
From a “care taker” point of view, where I think I could have done better ( but telling myself I did best I could):
We should have had port put in earlier
We should have taken Mom back in for IV fluids sooner
We should have addressed constipation sooner
If your husband is tired, tell him it’s ok to do nothing. Although Mom is going through this again, she had 3 years of treatment-free normal life. We hope to get back to that state again. I wish you and your family success and best wishes,
Catherine
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