jessrose
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Hi Lainy,
I’m so glad you think that this would help. I was thinking of starting a blog, but never really got to it. I thought I’d test the waters here. A lot of these tips can be used by folks with many different types of cancers. We’ll see.
I actually live in the Philly area and go to the University of Pennsylvania for treatment and did a short stint at MSKCC as well. Unfortunately I don’t qualify for a transplant at this time (I’ve contacted several hospitals) because I had ICC. It will be two years NED if all goes well at my next scan in March (I’m already getting nervous) and they said the may consider me for a transplant in a few more years if the cancer stays away. My jaundice is from cholangitis I developed as a result of the hepatic arterial infusion pump that I was treated with at MSKCC, not because of any tumors.
I’m so glad I could give you some hope. I’m cautiously optimistic. I mean no offense to anyone who frequents message boards, but I tend to avoid them. Unfortunately I think people who aren’t having great results tend to post more and for me, that’s demoralizing. I know they help a lot of people though and there’s no right way to cope. Find what works best for you.
I posted this in another thread which gives kind of an overview of what my course has been, but it isn’t entirely applicable to this discussion. I won’t sugar coat it for you. It has been hell and I feel more sick now than I ever did from the cancer. I was asymptomatic when I was diagnosed and it was just found incidentally. My intrahepatic tumors were confined to my liver. I’m still here though and I try to be grateful for every day I’m on this side of the grass (my sense of humor is dark. It’s a coping mechanism). I don’t mention it below, but my first course of chemo was gemcitabine, irrinotecan, and panitumumab (which only helps people who have a KRAS wild type tumor).
“I haven’t had HIPEC, but I have had two resections and an HAI pump insertion. My first resection was at age 32 and they took my whole left lobe and the second was at age 33 after a recurrence and took wedges out of my right lobe and did RFA. After both surgeries, I was back at work after three weeks. I pushed WAY too hard though and I don’t recommend that course of action. Since you’re young like me and if you’re otherwise generally healthy, then hopefully the recovery won’t be terrible. My pain was well managed. My worst surgery was the third when I had an HAI pump inserted. The recovery does seem to be getting harder for me, but I know I am chock full of adhesions and scar tissue at this point, so they have to get through that mess before even doing the surgeries. None of my surgeries were laproscopic. I have a big chevron scar, which some younger doctors surgeons I have seen is from an older technique. I trust my surgeon though.
I had six months of neoadjuvant chemo and three months of adjuvant with the first surgery. Then I had my first recurrence and we went right to surgery. I was taking Xeloda when I had my second and we went right to the pump insertion. I had three months of HAI chemo as a part of a clinical trial at MSKCC, which was stopped because it did massive damage to my bile ducts. Luckily the tumor was gone by that point and (knock on wood) I haven’t had to have treatment for the cancer since February 2015. I’ll be dealing with the collateral damage from the HAI chemo (which is significant and a very long story) for the rest of my life.”
Let me know if I can answer anymore questions.
Do you have access to a nurse practitioner or physicians assistant? I have found that “mid-level” health care providers were much more helpful with managing side effects and quality of life issues.
I haven’t had HIPEC, but I have had two resections and an HAI pump insertion. My first resection was at age 32 and they took my whole left lobe and the second was at age 33 after a recurrence and took wedges out of my right lobe and did RFA. After both surgeries, I was back at work after three weeks. I pushed WAY too hard though and I don’t recommend that course of action. Since you’re young like me and if you’re otherwise generally healthy, then hopefully the recovery won’t be terrible. My pain was well managed. My worst surgery was the third when I had an HAI pump inserted. The recovery does seem to be getting harder for me, but I know I am chock full of adhesions and scar tissue at this point, so they have to get through that mess before even doing the surgeries. None of my surgeries were laproscopic. I have a big chevron scar, which some younger doctors surgeons I have seen is from an older technique. I trust my surgeon though.
I had six months of neoadjuvant chemo and three months of adjuvant with the first surgery. Then I had my first recurrence and we went right to surgery. I was taking Xeloda when I had my second and we went right to the pump insertion. I had three months of HAI chemo as a part of a clinical trial at MSKCC, which was stopped because it did massive damage to my bile ducts. Luckily the tumor was gone by that point and (knock on wood) I haven’t had to have treatment for the cancer since February 2015. I’ll be dealing with the collateral damage from the HAI chemo (which is significant and a very long story) for the rest of my life.
So I guess my point is that there’s no “right” way. Everyone is different. If you’re confident with your doctor and have sought out at least one more opinion (preferably two), then trust their judgement. I completely understand the instinct to have that thing out of your body as soon as possible though. It’s very strong.
Be well
Hi Shellie,
I’m not a regular poster, but I have been traveling this road as a patient for the last four years (tumor free for a year and a half as of my last scan in September….Fingers crossed it stays that way). You’re not going to like my response and it was really hard for me and my family to accept, but there really is no way to KNOW if you’re doing the right thing. Some of the decisions we have made were good ones and some didn’t turn out as planned. All you can do is gather all the information you can through additional opinions, clinical research papers, and by questioning everything. Then you have to trust your instincts. Try to take some comfort in knowing that you are doing the very best you can with the information you have. Unfortunately there is no magic bullet (anyone who tells you different is lying or selling something), but good things can happen.
Happy holidays and my best to you both,
JessNo, I have not been diagnosed with PSC nor have I ever had any issues with my liver functions prior to this. The cancer has never caused symptoms and was found incidentally. My liver also tolerated my other chemo regimens well. have had three CT scans and several cholangiograms since my stricture was diagnosed with the ERCP. Do you not think it’s likely that the pump caused these issues? It seems like the most obvious answer to me. It’s a known adverse event and I displayed all of the corresponding symptoms. Now that I think about it, some of my discharge paperwork has listed my issues as something like “secondary to hepatic arterial chemotherapy.”
I imagine I will know the results of the CT scan when I see the hepatologist on Tuesday. That will still seem like forever though! Thank you for your thoughtful responses!
Yes, that was the trial I was participating in. I am no longer receiving chemotherapy though.
I suppose whether or not my current bile duct problems are directly related to the pump is a complicated question. No one will say for sure, but one GI doctor at Penn told me that the sclerosing cholangitis was a well known complication and I got the impression that’s part of the reason they fell out of favor (things have gotten better apparently with better dose management and the addition of steroids to control the inflammation). They also did a brushing during my first ERCP for the original stricture stent placement and it came back negative. How the abscess and current problems with my bile ducts are potentially related to thee original stricture and pump isn’t all that clear to me. My very layman’s understanding (and I’m generally pretty darn savvy) is that the stricture caused the bile to back up and kind of create a breeding ground for the bacteria that eventually (a few weeks later) formed the abscess. How the rest of my biliary tree became damaged is more unclear to me. I’m having a triphasic CT on Monday that they are hoping it will give them more information.
Sclerosing cholangitis is listed as a “Rare but Serious” side effect of the FUDR that goes into the pump. I honestly don’t remember if it was specifically discussed. It probably was. I had no idea that could potentially lead to any of the other things I’m going through.
I also want to say to anyone who may be reading this and considering the hepatic arterial infusion pump as a treatment option: understand the risks of adverse events very carefully. The biliary stricture was mentioned in the study protocol as a risk and I believe it is very rare these days, but talk to the oncologist and surgeon about what it would mean for you. Throughout my course of treatment I have been called unique, interesting, and even weird because of how my disease and the treatment side effects have presented. Don’t discount the pump because of what you have read about my experience here. Just really talk about it with your doctors and understand the the risks before you make a decision. Push them on it. Sometimes I think they get really excited about their studies and have and have a tendency to gloss over that part.
Thank you for the encouraging words Marion. I have had pretty decent spirits through most of this ordeal (of course some days are better than others), but it’s getting very hard to keep my chin up with all of this going on. I have been fortunate enough that I haven’t looked “sick” through most of this, with the exception of the Vectibix rash. I have lost a decent amount of weight in the last three months (I wasn’t heavy to begin with) and with my skin and eyes being so yellow, it definitely looks like something is wrong. I know that I shouldn’t let my vanity get the best of me, but it’s hard to do. My appearance is important to me and looking good makes me feel good. It’s hard to go to work or out in public and have people looking at me like that. I do realize that so many people have it so much worse, but I think I’m just giving myself a pity party. I’m sure it will pass. The Vectibix rash was really hard, but at least I knew what was causing it and that it would end when I stopped the treatment. I have no idea if/when this will end. I’m trying to minimize it with lavender makeup primer (who knew that lavender would offset yellow?) and wearing my glasses so my eyes aren’t as obvious. It only helps a little.
I also have thoughts of transplant on my mind, but I don’t know if anyone would do it for me. My 57 year old mother shares my blood type, is in excellent health and is a very willing donor (I think in her mind it makes her happy because It’s finally something she can do to help – I can’t imagine the anguish a parent feels in being powerless to help their child). The cut off for a lot of living donor transplant programs seems to be age 55 and my doctors at Penn are still calling it “Adenocarcinoma of Unknown Primary” even though MSKCC calls it ICC. Although either diagnosis may exclude me. The hepatologist I’m seeing on Tuesday is part of the transplant committee, so I would imagine it will come up in conversation.
Thanks for letting me vent. It’s helpful to get it all out. I’m sure my self pity party will end soon enough. As my mom always says “You can go there, but you can’t stay.”
What a mess….
The day after I posted this topic, I got a call that my TBILI was 10.3, so they wanted to put the drain in right away because of the holiday weekend and because my IR was about to go on vacation. I went in, they put in the drain in and I stayed until the 4th. My TBILI went up to 11, but they said that may be expected. On the 6th my TBILI was 11.3. Another IR upsized the tube from 16f to 18f and cleaned out debris in my ducts. I was draining crazy amounts of varying colors (brown/orange/green) for several days. On 7/13 my TBILI was 12. On 7/14 my IR told me to cap the drain and then on 7/15 my TBILI was 13.7. The IR told me to put the bag back on, which I will do tonight.
I’m so frustrated because this doesn’t seem to be getting any better. I’m taking Augmentin, which I guess has some propensity to cause liver damage (but I was informed that most antibiotics do). My Infectious Disease doc won’t change me to anything else until my CT scan on Monday confirms that my abscess is gone (the abscess had an anerobic bug, which is treated with the clavulanate potassium part of the Augmentin). If it is, she’ll switch me to just amoxicillin.
My oncologist at MSKCC is also interested in seeing my CT scan results.
I’m seeing a hepatologist on Tuesday. I don’t know what to expect and I don’t know what else they can do. I’m hoping that the Augmentin is the issue and things will get better if I’m off of it, but I doubt I’m that lucky. I’m yellow but aside from being tired, I feel pretty well. I’m only itchy occasionally and the Questran helps that.
To make me even more freaked out… my CEA keeps going up by 0.1 every time it’s drawn. It’s 1.4 now, which I know is very low. This is from when it was <1.0 in the beginning of May (I finished chemo in mid-March). I just don't like the trend. I was at 4.1 when they found my (single 1cm tumor) recurrence last September and was 2.1 when they stopped seeing the tumor on my scans in February. They couldn't see anything in my last scan on 6/8.
I just wanted to tell my story. I’m so frustrated. I feel like I have been through the wringer. It’s been tough for the past two and a half years, but the past 3 months have been absolute hell. The crazy thing is that none of this is from the cancer, it’s all from the treatment. If the cancer comes back after this (which I know it’s likely to do), I will be beyond despondent.
(I’ve edited this for spelling)
Hi again,
Thanks for the kind messages. I saw my oncologist at Penn today. He said that while the new tumors were discouraging, the fact that they are still just in my liver is very good. He still wants to be very aggressive and is glad that I’m going for other opinions and will work with and support whatever I decide. He said that I may be a good candidate for HAI, which apparently they are quite good at at MSK. I guess that they are doing some clinical trials with it. However I’m still technically considered unknown primary (I have a different diagnosis listed on every single scan, it’s just silly), so I don’t know how that will work. He recommended a colleague there. I am also scheduled to see the multidisciplinary liver tumor committee at Johns Hopkins in a couple of weeks. I’m so lucky to live close to so many excellent hospitals.
I do have a hernia along the incision, which stinks. It’s small though. I’m going to talk to the surgeon about it next week and get his thoughts about how we should move forward too.
I’m feeling more positive than I was on Monday. I like that all these very smart people will be working together to help me. I’m still feeling great. I’m back at work this afternoon and I think I’m going to go to the gym tonight.
Take care all! I’ll keep you posted!
JessThanks Marion. I’m trying not to read into it too much. I have read that the CA 19-9 is actually a better marker anyway and that CEA can be influenced by liver irritations (which happens while on Xeloda). I haven’t heard back from my doc yet about another scan though. He will probably just want me to wait until September. My CA 19-9 and CEA were both normal when I had my recurrence (or they just didn’t get it all) in January, so who knows.
