I asked my trusty group of cholangio friends the following questions: What’s some advice you give someone just starting chemo and/or radiation? Or any other procedure associated with this cancer. What are your thoughts or feelings on chemo ending? Whether it was because your doctor didn’t feel the need for it anymore because NED. Or you needed to stop and give your body a break. Or you personally decided to stop chemo and why?
I ask because there are so many questions surrounding chemo and Cholangiocarcinoma. I know for me, under going chemo was a no brainer after the surgeon and oncologist explained it to me. They said based on my young age, good health, the high reoccurrence rate and a chance of microscopic cells it would be beneficial. Even though I had clear margins and no lymph node involvement, I was on board with it. I wanted to be aggressive in treatment because I don’t want to go through this again.
Chemo is a scary thing. I don’t know if anything or anyone can truly prepare you for the emotions that come along with it. I wasn’t prepared to see all the “sick looking” people in the waiting room. When chemo starts you can’t wait until its over. Then your last treatment comes and when it’s over, it’s kind of like now what? It’s almost like a security blanket. I was only able to complete 13 of my 16 planned treatments. My body couldn’t take it anymore. My platelets were dangerously low and took longer and longer each time to come up. My white blood cell count kept dropping as well. Fortunately that’s easier to boost with injections. For me, I used Neupogen, which had some pretty bad side effects but it helped.
So when chemo starts for you, ask your doctors lots of questions. What types of drugs will be used? How long will treatment be? What are the side effects? How many infusions will you do? Is a port necessary? (<- I say yes. You’ll be thankful.) What can you do to ensure you stay strong and healthy? Are there certain things or activities you should avoid? Is it okay to travel? If you travel far for treatment, can it be done locally? Can your blood work be done locally? What made you pick this certain kind of chemo drug? How will you monitor my progress with treatment? Will this affect my reproductive organs? There are many more and you’ll think of them as time goes on. Keep a notebook handy.
Below are the responses from my friends to my questions.
“If I was a newly diagnosed cancer patient, I know before you can get into alot of clinical trials, you have to do the standard protocol first before clinical trials….but there are SO many great trials popping up and if you have the right mutations you get a double BINGO…..so I would explore the new therapies that are upcoming instead of doing “just what the dr ordered”. I opted to clinical trials because I was tired of chemo and feeling so dogged down all the time. I was so tired of looking at my labs being so low here and high there…. Right now, I am waiting on genomic profiling to come back. Then the game will start again for me….I can’t wait! wink emoticon Feb 2016 will be starting my 6th year WITH cancer.”
“I was not really given the option of chemo or radiation. If I had pushed it I am sure I would have gotten it. However the doctors had a compelling argument to not do it. I was sent up with clean margins and no chemo or radiation because they felt a strong immune system at that point was my best defense and both chemo and radiation could have wrecked that immune system, and that most if not almost all studies that have do not show conclusive evidence that chemo or radiation helps in adjuvent settings with clean margins. So, although grateful I am not needing it, I am also frightened that really I might. I cannot help with the question you ask but thought I would chime in anyway.”
“Ask a lot of questions. I keep paper and pen close, so I can write them down when I think of them. Also include family and friends. I am a very independent person, so when I had breast cancer, I felt I should protect everyone. I insisted on doing chemo, radiation, and appointments on my own. Now with cc, I allowed family and friends to go through this journey with me. One friend brought me lunch on my long chemo day. On my last day, 4 friends brought me flowers and watched me ring the bell. As for my husband, he wasn’t going to let me push him away. He has been at my side throughout.
“I would just say PLEASE do the chemo no matter what they tell you. Please do it. I was watching Boston Med on the learning channel, love these shows, LOL and the Neurosurgeon took a cancerous tumor from a guys sinuses and he said even one microcell starts the cancer all over again. That is what they told me.”
“I was never offered consulting in the process until my chemo was done because I felt depressed and scared. Look into this at the beginning when diagnosed, I think it would have helped me a lot. Find a group so you have other people to talk to besides family, my family likes to pretend it never existed and will never come back, it hard and at times you feel alone.”
“My tumors were first seen on a scan in May 2013,however I wasn’t diagnosed untill nov 2014 (that’s a long story in itself) I was offered y 90 treatment with worked very well for me I have repeatedly Refused chemo to me it makes very little sense when I need my immune system to be at peak proformance.im currently considered Ned but do have a scan next week.”
“I was told I wouldn’t need chemo as they had gotten clear margins and no lymph node involvement. I was so relieved at the time I didn’t have to have chemo but wondered as the months went by if that was a bad decision. My 1 year check was NED so hopefully my surgeon was right!”
“I think that the fact that I was a competitive weight lifter before starting chemo is what helped that the chemo didn’t kill me at the start. I had a second opinion and that Dr said that after looking at my records he was very surprised that my Dr would have even tried to start me on chemo because he felt that I should have not survived my first treatment considering my labs at the time. Then again my bilirubin was almost 26. I have lost most of my muscle mass and unfortunately due to the steroids that follow my infusions my weight is just about the same now as before, but it is no longer muscle weight. I initially lost 40lbs. by the way. I have now had 19 Infusions and also have no stop date. I will have a new set of scans next week and then we will see how things are going. I have requested to get my tumor genetically tested for mutations so that we can find a clinical trial more specifically for my tumor. Also waiting for those results. I really we not expected to make it more then a couple weeks and here we are over 7 months later. I would also like to say that we make our own destiny, not what the Dr’s tell us. Mind over matter. Keep a strong mind and that will help greatly in this battle.”
“I started chemo last November after being diagnosed as stage 4. I knew this chemo was only ever to manage the cancer and that it was never a cure. Despite this I would tell someone to go for it if you physically feel well prior to it. Expect to feel tired after your chemo and I always feel a bit spacey on the day of infusion. I also found that I would plan things for the next couple of days after as this is when I would have the most energy (steroids for two days). I was lucky with side effects and only really got fatigue and a sore mouth. I have found that as the chemo goes on the side effects actually get harder. This could be due to my body getting weaker.
I do chemo when I feel physically well but if I have plans or feel like I need a rest then I do not hesitate to take a break. This chemo is to try to manage the cancer but it has to be measured against quality of life. I don’t see the point in going to chemo every week if I’m too poorly to then enjoy my life.“
“You need to see chemo treatment as TREATment! Like a spa treatment on the ‘inside’. It’s expensive. It’s usually effective. I think of the names of some of my chemos and associate gems and jewelry with it. GEMcetabine. OxaliPLATIN(um). I like to visualize the drip as liquid diamonds or other gemstones in liquid form. As you feel or experience the side effects, just know that it’s making you more beautiful from the inside out! And always, TREAT yourself following your TREATMENT. A good lunch out. A mini shopping excursion. Even a movie and/or nap at home in fuzzy socks and a favorite blanket. By all means, STAY POSITIVE!! Every day is a brighter day post diagnosis!”
“I’m still pretty new to this, so my recommendation to someone in my shoes would be first to breathe. Deep breaths, often, and to ask as many questions as come to mind. I brought a list of 20 to my first appointment with my oncologist, even with all of the research we had done to prepare. The other suggestion would be to strongly consider the resources offered. I went to a fertility specialist before starting treatment at the recommendation of my oncologist and am glad I did. My center also offers free massages to patients and caregivers that I’m going to try out. Every bit of information and pampering helps.”
“Also I would like to add, we found a local support group that has also been huge for my entire family. I have a group that I attend on Wednesdays and my wife has her own also. My children take part in their kids community at the center on a different day and they love it. Not to mention all the great programs, services, and activities that they offer at no cost. It has really been a blessing for us to have found this. I would recommend that you look into these groups.“
So to sum it all up, find a doctor that is experienced with this cancer. Ask questions and don’t be afraid to do so. Find support. Follow your gut instinct.