Chemo, No Chemo…that is the question
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Kristin….so happy to know that your Dad is feeling better then he has in a long time. Given your Dad’s particular circumstances the decision you have made seems so very appropriate. Have a wonderful Thanksgiving.
I just wanted to post an update as all of you have been so wonderful and supportive during this time of decision making. My dad met with his regular Internist yesterday and together they reviewed the reports sent by Mayo Clinic. Dad is feeling terrific. He is eating well. Basically, life is getting back to normal and he actually feels better now than he has in a very long time. His doctor explained that the two chemotherapies Mayo suggested might be used for his Stage II cancer are Gemstar and/or FU-5, both come with possible side effects, some of which can be life threatening. He explained that each person reacts to them differently. He also explained to dad that there isn’t a lot of evidence supporting the fact that chemo is real effective against this particular kind of cancer (as some of you have indicated) and that the risks may not be worth the benefits at this point in time. Coupled with the fact that the surgical report from Mayo was so positive, he suggested, and dad agreed, that the best course of action might be just to continue with the follow-up CT scans at Mayo’s GI clinic every 3 months for the next year to continue to keep a close eye on things. So that is the plan dad has made, and we support that decision.
A month ago, I was so angry about all of this and kept thinking that no one should have to know that the end of their life is potentially at hand. Now, I can see the gifts we have been given more clearly…gifts of more time, expressions of love, more laughs, another grandbaby on the way that dad will get to meet! And the list goes on… With Thanksgiving just a couple days away, how can we be anything but grateful? I will keep all of you in my prayers for more of these same gifts with your loved ones.
Kirsten
Hi Kristen, how interesting that your dad became a violin maker. Teddy’s dad was a Master Mandolin player, wrote music and taught. Everyone knew of the little music man from Sicily! If you just go to Cyber Knife on Google you will find a wealth of easy to read information. I am not a medical person and always look for easy to understand! Even in the last 6 months C.K. has advanced. When we first started this cycle, you had to be sedated (so you lay very still) and now that is not a fact. You go in for 90 minutes like 3 days in a row and you are DONE! The tumor does have to be 6CM or smaller which is why Teddy had radiation first. We are just waiting to be called that everything is set up. Hopefully it will be mid December. By the way…I could never be a good doctor…I have no Patience (patients)! A little humor there!
Kristin,
I know how heartbreaking this cancer can be when it happens to a parent, I especially understand when it happens to a father. My father has always been my hero, he has been my rock for so long, and then suddenly here we were wheeling him out of the hospital in a wheelchair after his resection. 40 lbs lighter, tubes coming out of his abdomon, tired, weak, in lots of pain. It was a really tough period for my whole family, especially my mother. However, it gets better, you learn to appreciate everyday they are here, and I think your father will too. As Lainy said, you have to have hope, that is why so many of us are on this website, if we weren’t we wouldn’t care about finding better treatments. Cancer in the family is overwhelming, but eventually it just becomes part of your world, I once read somewhere, Cancer becomes your new reality. NOt the reality any of us wanted, but our reality non the less. Who wanted to be an expert on Cholangiocarcinoma? None of us I am sure, but unfortunately that is what we are becoming. I’ll keep your dad in my CC prayers.
BarbaraKristin
You asked about Cyberknife. It’s a type of radiation that is very targeted and enables larger doses of radiation to be given to the tumor while sparing the surrounding tissue. Gold seeds are normally implanted around the area to be treated and the Cyberknife machine is able to track them and make adjustments during the actual treatment. It’s a relatively new technology and is widely available in this country. If you “google” Cyberknife you’ll find their website and it is very informative.
Jean
Kristin
I really know what you mean about having to step away from the computer because it was getting too depressing. I had first posted here prior to my surgery on May 21st…it then took me until August 5th to post again (I just checked!). Reading anything on this site made me SO frightened…SO afraid. I always have to remind myself that we are all different, that no other person’s experience is my experience. And even regarding statistics, which I posted about earlier, none of us are statistics…we are not numbers. They can give one an idea of prognosis but they are not our prognosis. Anyway, I very much understand what you are saying.
Speaking of statistics…since posting yesterday I have spent a lot of time searching numbers. I was set on finding some “better” numbers for all of us here. I found a study out of Japan in the “World Journal of Surgery” from October 2008. It was a retrospective study of 56 consecutive patients who had surgical resection. The 5 year survival was 100% stage I, 67% stage II, and 37% stage III. Boy, I sure wish I was in that stageI!!!!
I did want to mention two books that I have found very helpful in maintaining my hope. As Lainy said, there is always hope…and I truly believe that. One is “Happiness in a Storm” by Wendy Schlessel Harpham, MD and the other is “Anti Cancer: A New Way of Life” by David Servan-Schreiber, MD. They both share their personal experiences in battling cancer in which a poor prognosis was given. I found them inspiring, informative and comforting.
You asked about anyone surviving 20+ years…I did post recently about a good friend of a physician that I know here in Seattle. She was diagnosed with unresectable CC 20 years ago (biopsy proven), has been on chemo regimes the past 10 years for metastatic disease. But, is doing well and leading a normal life…and that wasn’t even resected! And I think Marion posted about a number of people that she knew of who were long term survivors.
Kristin, I am hoping for all the best for you, your dad, and your family. I know it’s such a difficult time….I know how frightening it is.
Jean
Thanks Lainy ~ You are right that Teddy, Sue, Jeff and Gary are all examples of success stories and they do give me hope. Patience is not a virtue of mine! Ha… I guess I just want to have hope that this is a little bump in the road of life that we have gone through as a family and can now “check off our list”, but it doesn’t quite work that way, does it? I want dad to get back to the business of living his life without this fear looming over his head. He is a retired postmaster who took up a second career as a violin maker. He plays fiddle in a band called “The Friday Night Gang”. My dad was always going and doing. Now, he is so quiet and withdrawn. It kind of worries me, although he says he feels great. I just want the old “Normal”
You guys are great to share your stories and experiences with me. It does help.
Can you explain to me what “cyber knife” is? I have seen that written about several times and haven’t researched it yet.
Kristin, there is always hope. Everybody on this site has to have hope. Without hope they could not even try to help each other. These are brave and caring people who live with the hope that better treatments are right around the corner. It would not be fair to you though not to let you know all aspects. This is all still so new to you and other new members and we realize how scary it is and was for us in the beginning too. Once the scare wears off, then you really begin to fight and somehow that fight, that courage overtakes the scary part. What normal person would not be scared? You will also come to realize that everything moves slower in this world of CC. Appointments, tests, test results. You learn to be very patient. I have been scared as Teddy’s radiation ended September 5th and they still have not done the cyber knife but it was explained now that the radiation is still working. Patience. We are here for you to ask, vent, cry what ever it takes to get through, but know that there is always hope. And there are success stories too, Teddy is proof of that.
Hi Roma ~ Boy you can tell we are “greenhorns” at this…we didn’t even ask the specific names of either of the 2 different chemotherapies that the doctor suggested might be used! He said that there are a couple of types of chemo that they could use, but that one of them might not be covered by dad’s insurance. I told my dad and mom on the drive home that we should have asked so that we could research it. I guess we were thinking that we had to make the decision, then learn about the chemo…not the other way around. Aughhh….
Jeff ~ Thanks for sharing the effect chemo had on your heart. I have been so worried about the stupid little cancer cells, I forgot about the effect that it might have on the other organs! We certainly wouldn’t want to compromise his cardiac health on a guess or whim.
I am grateful to all of you for the posts. I found that I had to step away from the computer for a while because it was getting too depressing. I thought that all of the good news that my dad was given was a sign that things were going to be okay, but now I have more fear than ever. Isn’t there anyone out there in the world who got this disease 20+ years ago and is still alive to tell about it?! I guess that would be a different website. I sure wish THAT website was out there because I could really use a ray of hope right now. I feel a lot of frustration, because I don’t feel we are any closer to an answer than I did a few days ago…This CC cancer is crazy!
Hi Kristin,
I dont think you mentioned the type of chemo the ONC’s were discussing with your family. Is it Gemzar? If it is, that is the chemo my father was on, and I will say that he had very little ill side effects. He started chemo a bit weaker, not just from the whipple, but the three times his stent had to be inserted and reinserted due to infections. So he felt a bit of weakness pretty much the 6 months on chemo, but on a scale of 1 to 10, maybe 3 for weakness(10 being the highest) no nausea, and no hair loss. That was his personal experience, it may have or had a different effect on others. In our case, as I said, the jury is out if it worked. Catscan and Pet test tomorrow, so I guess we will know in the next few days what those nodules on his lungs are- the waiting never gets easier.
BarbaraKristen,
I am one of those lucky ones that was able to have a resection with clear margins. My tumor was 5.7 cm X 5.5 cm. I had an extended right lobectomy and they took out my gallbladder at the same time. It is almost two years later, and so far…cancer free! Other than digestive issues and some adhesion pain in my abdomen, I feel pretty good. I do have the knees of a 70 year old, but that has nothing to do with my liver!
I discussed chemo with my doctor before and after surgery. Before surgery, I was thrilled to hear “no chemo”. After surgery, we talked about it again, and her theory was that there was nothing left to treat, and it hasn’t been shown to have much affect on CC. So, I did not have chemo.
Now, that said, some days I wish I had insisted. I know that if it comes back, and I hope that I am in that 40% that live longer than 5 years, I will wonder if it would have made a difference. I tend to agree with some of the posters…if he feels like he should do chemo, then he might give it a try. I have no experience with it, but many others on here do and can give you more details of what to expect.
Given a chance to do it again…Yes, I think I would have insisted. But that’s just me, and so far it has worked.
Sue
Kristen, I have not done any in depth research in to chemo and it’s effects to the heart. All I can tell you is that having so much chemo has cause my heart to beat a few beat s and miss one or two all the time now. Was checked out by heart specialist and was told my heart is healthy, that the chemo was causing some neurological signalling effects, I and would be find. It fact the times that I visited the Emergency room, I would have to tell them as they would get all excited from the machine beeping away. The machine would read it as 32 BPM. If I did not tell them they would pull over the cardiogram machine. Please check this out because it has and still does cause a neuro signaling problem with my heart. I would be setting there having my pulse taking after walking up three flights of stairs and still get a 32bpm reading but really it id just everyonce in a while missing a beat. Never did before I started trying chemo. Just something to be aware of on some people it does effect the heart, they gave it a name but I don’t remember to good any more. It makes sense though as it does cause neuropathy. Just wanted to mention it, as there has been so many things during my chemo journey that was mention until after the fact.
God Bless,
JeffKirsten,
Your dad has very similar circumstances as I. Although, I had the whipple, my report was almost identical to your fathers. Only difference was my 2.5 cm tumor was in the distal portion of bile duct. The oncologists at Duke Medical and my surgeon, as do I, agree the more aggressive you can be in treating with chemo at this early stage the better. I am 1 year out from my surgery but still after some addition surgery scheduled to repair a hole in my pancreas. My CA19-9 which is a cancer tumor marker blood test was 17 after my surgery (41 or below is considered OK) but has risen back to 49 and I am back on chemo again.
It sounds like your dad has had great results! Best wishes for his continued good health!
Gary WordenI know everyone comes to this with a different perspective, but the one thing I know is that there IS hope…hope that it will not reoccur…hope that new therapies will be found…I do believe that.
I just quickly pulled up an article: Journal of American College of Surgeons, Volume 7, Issue 4, October 2008. It includes a review of the literature on Intrahepatic Cholangiocarcinoma. This quote deals with surgical resection only and not chemotherapy, but I was responding more to the comment that CC always “comes back”.
“Currently, surgical resection of the involved liver segments is the only curative treatment for ICC, but because most patients present at an advanced stage, resectability rates have been quite variable (18% to 70%). Surgery has been successful in the few reported series, with 1-year survival after surgical resection reported as 35% to 86%, 3-year survival as 20% to 51.8%, and 5-year survival as 20.5% to 40%….”. These numbers reflect surgical resection in all stages.
I know I have read many articles regarding this with many statistics and the numbers are not great, but I do know that there is hope. And that is what I wanted to say…there IS hope.
Wishing all the best to everyone here!
Jean
Thank you again for all of the responses. I am carefully reading each one and taking in the points you make. Marions, thank you for the reassurance that we are doing the right thing by reaching out to ask the opinions of others who are fighting and surviving. I know of no other way to help my dad. I am a high school science teacher by training… I understand more than I want to right now about this cancer. By default, I am very logical and analytical and want to lay out the evidence before I make a decision and I am hoping that this will be a strength that will help dad make a final decision. The medical oncologist that he saw at Mayo on Friday told him that he shouldn’t wait too long to make a decision. He said that chemo usually begins at about 6 weeks after surgery. (Dad’s surgery was 6 weeks ago on Thursday.) He encouraged him not to put off a decision until after the holidays, as that would be too late.
Jeff asked if dad has been in otherwise reasonable health, and the answer is a resounding YES! Other than a faulty heart valve which caused an irregular heart beat for the last 30 years (now regulated with the help of a pacemaker…another addition he got back in September when they tried to do the first ERCP and his heart rate went crazy), he has never been in the hospital, never had any kind of surgery…just nothing. I think that is another reason why this is such a shock to us. He has always been so healthy. He wasn’t even sick when they discovered the CC…he just turned jaundice, so mom took him in to have it checked out. Painless jaundice, that’s it.
Just when I think I have arrived, I find myself back on the journey to that place where faith eclipses fear. I have to be thankful to God for all of the prayers that have been answered already and continue to remember that He is in control…not me, not dad, not the chemo doctors, not the chemo.
Again, many thanks for the words of wisdom. This is helping me so much. We know of no one else who has, or has ever had, this type of cancer.
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