February 4, 2015 at 6:10 am #80254pfox2100Member
Matt I’m sorry to hear about your news. I know another woman who I met online who also had what was considered a successful surgery and she too just found a reccuence and it was in her abdominal cavity as well. Seems like this is a common area for cc to met to or recurr? I agree with Kris, if your gonna do chemo a port is definitely the way to go. As u might recall I was on gem cis prior to surgery and tolerated it well with minimal side effects. After surgery I was put on Gemox and along with the cold sensitivity like Kris mentioned , I didn’t tolerate that regimen as we’ll and had more side effects and it dropped my platelets more frequent than the gem cis. Did you mention why they are saying it is not operable? Please keep us posted , many blessings and prayers to you Matt.
PorterFebruary 4, 2015 at 3:50 am #80253dukenukemMember
My surgeon placed the port perfectly. Have not had an issue with starting the infusion. One nurse said it helps if I turn my head away and lift it – seems to help getting things going.
Even before the port, the steroid kept me wired all night. Tonight seems to be no exception. I frequently don’t get to bed until 4:00 – 7:00 am. A big hit on a work schedule. I’m retired now but was on full disability once CCA was diagnosed. I did a little work, maybe 10-15 hours a week, mostly from home on a special project. Kept my mind active.
Anti-nausea drug is administered during my infusion – works for me just fine.
Julie’s right about co-workers who “tough it out” and come to work when they are sick. More than once I’ve seen it literally work it’s way around an area, jumping from cube to cube. Yeah, I was part of that chain. Did I go to work? Yeah. Do as I say, not as I do. Your immune system is weak. Don’t take chances.
Ginger ale is right up there with chicken soup. Has to be at room temp and flat for best results.
Keep fighting Matt.
If your appetite drops, you need to graze. Small “meals” more often. Keep your weight up. I make up hot chocolate using breakfast protein powders.
Sennakot-S can be your best friend. I now use the generic version from WalMart.
Crackers with peanut butter – yes!
I started on gem/cis but stopped after one round. Onc was afraid of side effects. Went to carbo/gem.
If you get tired at work, talk with your supervisor (and people you work with – as a manager you probably have an office with a door. Tell them when the door is closed, don’t interrupt – they will understand.) and explain the facts of life. You are doing your best. Maybe agree to a longer work day or work from home (Should be easy to do – managers always have paperwork to do.) to make up the “lost time” while you need to rest. There has to be a way to make this work for both of you.February 4, 2015 at 12:40 am #80252
Thanks for all the info and support so far – keep it coming please…!
Does anyone have any tips for finding a doctor/surgeon who might be willing to resect my new tumor?February 4, 2015 at 12:20 am #80251
I know that you are aware that I had trouble with access of my port and it being very uncomfortable for as long as I had it. HOWEVER, that aside, getting the port is still a no-brainer. We would have taken out and replaced the port during my chemo, which I would have been fine with, except by the time we decided the placement was a problem, I was nearing the end of my chemo, with only 4 and a half infusions left to go. To do that would have required going off of my blood thinner (Warfarin) for blood clots I’d had at the beginning of chemo treatment. I, along with the agreement of my oncologist, decided that the most practical thing to do was to punch on through the rest of the chemo using the port…no matter how many attempts it took to access…and I’d just “get through it”…after which, we’d have the port taken out immediately. That is what we did, because IF I ever had to use a port again….we would have another one placed, which hopefully was seated better and had easier access.
Nausea: You will get nausea meds probably in your IV before they administer the actual chemo (Gem/Cis…if that is what you go with). I did not have any nausea during the first round , but did have nausea (dry heaves, but no vomiting) about 3-4 days after the day one (Gem/Cis) part of a 21 day protocol. Each round, the nausea seemed to come earlier and last longer through 6 rounds of chemo. The last two rounds, it was a daily ritual to dry heave in the morning and very, very occasionally in the evening. I sometimes would have nausea in the daytime during round 2 and beyond in the days around the gem/cis chemo, though I never dry heaved or vomited in the middle of the day…only in the morning…or just before bed. The more I moved around, the more it seemed to happen.
Things to do to lessen the nausea:
Quese Ease: These is an inhaler type device (think slightly larger than a lipstick container) which we found at the local cancer center store and also at Walgreens at the motion sickness medication aisle It has some ginger in it….and is without prescription, but something easily slipped into a pocket. Cost is about $20.00 . I’m sure you can find it on the internet as well…possibly with less cost. I found that when the nausea wasn’t too bad in the middle of the day….holding the open container under my nose and inhaling did lessen the nausea sensation.
Atavan: This is a prescription for a drug that is commonly used for anxiety, but also works to aid in reduction of nausea and vomiting. As I got further in to the rounds of chemo…probably about round 3 or 4, I used Atavan occasionally to control the problem, which it did quite well. I did not use it round the clock…only when needed. It usually took hold about 15-30 min. The dosage can be adjusted. I did not find Atavan to alter my ability to do anything…either physically or mentally.
Gingerale: Sipping on this seemed to help when nausea was on the light side. Sometimes, it seemed to be better when it was room temp to help with nausea. It may also help if you open the bottle and let the fizz die down,. The reason for this is to eliminate some of the gas/bloating that might occur.
Omeprazol (aka Prilosec: My oncologist started me immediately on Omeprazol, the generic of Prilosec, to try to avoid gastric problems. By doing that, the idea is to cut own on uncomfortable stomach sensations that might affect comfort (which would affect ability to work)
Ritz crackers and peanut butter: Besdies the obvious of getting some protein, the combination seemed to hep settle my stomach and not feel nauseous.
Stool softeners: My first oncologist had me get a couple stool softeners and a script for a suppository…”just in case” of constipation. I never did use one, but it was good to have them handy and not worry about going out to pick up something if I was feeling badly,
The day of chemo, AFTER CHEMO, I generally only wanted to sleep a lot. I occasionally felt very cold, for days afterward, so keep something at work to wear while you work, just in case that should happen, just to be comfortable . If you are given steroid in the preliminary IVs on the day of chemo, you may be jittery for about 24-48 hours, until it wears off. In addition, that may make it hard to fall asleep at night. So, my recommendation is to go ahead and nap whenever possible, the first 24-48 hours. If you’re working the day after chemo, just know that you may have trouble going to sleep because of the steroids. Movement was not my friend for the day of and after chemo…that is, the more I moved around, the worse I tended to feel. If you have a sitting job, that may not bother you. However, once I was past that first day, I was pretty good the 2nd day…though not up to full speed. Then, by the third day, though I occasionally felt nauseous to the point of dry heaving, (and I mean really for very short periods of time usually only once a day), I did various things such as volunteering for an ongoing fundraiser …taking money, making food, etc. I wasn’t a ball of fire, but I was somewhat productive.
If your hemoglobin drops down too low, you may find yourself getting very tired. At that point, napping is essential…whenever you can…so at lunch breaks and if you have coffee breaks….try to at least shut your eyes and shut down your mind for a while. Hemoglobin that drops really low can leave you short of breath with very little activity…but when it happened to me, I was fine sitting…just couldn’t walk more than than about 10 feet without getting short of breath, At that point, I required a blood transfusion to bring the hemoglobin back up a couple points.
And…the last thing I can think of right now…is if you are working in a company with a LOT of people….or for that matter any people during the usual “cold and flu” season, I would have a face mask available to wear….to try to avoid breathing in stuff that the sick people who come to work anyway are “sharing”, and…..I’d also have a very large pump bottle of hand sanitizer on my desk…..and use it…after touching ANY thing that someone else has touched….be it a piece of paper or pen….but esp something like a computer keyboard or mouse. It may seem like overkill, but it’s worth it not to catch something that can make you very sick when your defenses are down from chemo.
Julie T.February 3, 2015 at 10:07 pm #80250kvollandSpectator
My husband did Gemzar and Oxaliplatin for 6 months. The only real side effects that he that bothered him was the cold sensitivity…..he wore gloves all the time, two pairs of socks and long underwear most of the time…..he had to drink at least room temperature fluids. Other than that we pre-medicated for nausea and kept him on preventive meds for several days afterwards. He would get bloated but once he burped he was fine. Fatigue was a very small issue from him. He continued to work full through all 6 months of it. He would come home and take a nap. He also didn’t do a lot other than work but he worked. Had a little space heater under his desk to keep him warm. Appetite wasn’t an issue, he ate smaller more frequent meals but managed his weight keeping it right at the 220# he settled at after surgery. THE 5FU was what really go to him.
The port is really the way to got for chemo. It’s one little poke for most people….he had to have two, they did pull the first out as he had three episodes of sepsis and they blamed the port but never were able to prove it was. He had three rounds of chemo with the port in then the last 9 with regular IV’s…..it was awful the further we went the harder it was to find a vein, veins would blow, chemo would leak and cause pain…..Port was the way to go.
If you get the port be sure to talk the doc about placement. My husband’s first port was on the left and was deeper in the tissue but that was the one that they took out. The second one had to go in the right side. My husband likes to hunt and the rifle butt goes against the right shoulder. His doctor was able to place it more toward the center of his chest and a little shallower so it was easier to access. There are those who have difficulty with their ports but that is the exception. They are nice for chemo infusion, blood draws and those nasty contrast CT scans.
Sorry you are having to have to go through this now. I really was thinking you were in the clear. Keeping you in my thoughts.
KrisVFebruary 3, 2015 at 1:20 pm #80249
I know everyone responds somewhat differently to the Gem/Cis treatment, but I’d love to hear about what to expect and any tips/tricks to make the process easier.
Everything from getting a port to managing nausea, fatigue, and nutrition are all concerning me.
I need to try to work “full time” while on chemo – is that realistic? I’m an Information Technology Manager, so no real physical exertion is required but I do need to have my wits about me. I’m expecting to take a full day off work for the actual infusions but otherwise hoping to generally be able to make it into the office.
Thank you all for your feedback and support!February 3, 2015 at 6:31 am #80248marionsModerator
Matt….I have been absent for a few days and just came to read your news. So sorry to hear of the latest developments, darn…I was hoping for you to get a brake from it all. I also agree with the others in that a second, third or more opinions are important to obtain. Specialists vary with their approaches and you would want to make sure to investigate as much as possible.
In regards to your question about clinical trials: Gem/Cis was the largest clinical trial ever conducted on Biliary Cancer. Some consider it the “standard” of treatment whereas others think of it as “preferred treatment of choice.” However; the data clearly showed that gem/cis is superior to gemzar alone. Are there other drugs? Of course, there are, but we don’t have Phase III clinical trials to prove efficacy better than that of gem/cis.
Why don’t we have more Phase III clinical trials? Answer: we simply can’t accrue enough people to run these large scale research studies. (Gem/Cis was a European study involving several countries.) Why do we need Phase III clinical research studies? We need to compare response to treatment in order to prove that the investigational drug(s) is superior to the standard of treatment. Only then will it replace gem/cis as first line of treatment.
MarionFebruary 2, 2015 at 10:54 pm #80247
That, Matt, is an excellent question…..and it makes no sense to me either. Unless…..they expect that the side effects of the trial drug to be potentially more serious than Gem/Cis and thus , “First do no harm.” That’s just a guess. Of course, in my mind….Gem/Cis does plenty of harm with no guarantees either(though you know I did it anyway) and I personally have dealt with blood clots, transfusions due to low hemoglobin, probable hearing loss and probable kidney damage.
I’m not familiar with the trial you mentioned…but will look that up. Is that the trial that Melinda is in? If that’s the case….getting the Foundation ONe testing done is really good to help cut down on time….and good to know in general in case it shows up something really helpful.
Julie T.February 2, 2015 at 10:34 pm #80246
I’m in touch with NIH and have agreement from my Mayo team to refer me to the NCT01174121 trial.
What drives me crazy is that I’ve never had chemo and all of the trials, including this one, seem to have a requirement that “All patients must be refractory to approved standard systemic therapy.” which for CCA basically means try Gem/Cis first. We know that doesn’t work for all and for those that is does work, it’s temporary, so why force us to go that route first?February 2, 2015 at 10:15 pm #80245
Matt, you know that I do love Mayo Clinic and trust them, but as much as that is true, sometimes there comes a time to get another opinion and this may be the case. I broached the subject of a consult with another doctor….either at Mayo or elsewhere if my CC comes back, and he said he would facilitate that happening and do everything he could to get me in to see whoever I wanted. It doesn’t mean you have to change …to move away from Mayo….but getting another opinion or two may be a good idea at this point.
As to the abdominal scan…..it is my understanding that they catch at least part, if not all of the lungs with this scan. At least that has been the case in my abdominal scans at Mayo. However, since you’ve had a recurrence, I think you’d want to know what, if anything, was going on elsewhere in your body, to have a baseline in advance of any other treatment….to know that the treatment was working or not after the next scan.
Did they refer to the abdominal recurrence as an ascite?
I don’t know about resecting the abdominal met. ……if in that location it is not possible?……or being to the abdominal wall, it means that it’s likely growing microscopically in other locations already, so hitting it systemically makes more sense. I don’t think it is possible that they could know the latter for sure….it’s just a very educated guess. I personally think that in that case, it ought to be up to the patient. Heck, they make us choose on whether to do chemo or not, right?
I’m glad to hear that you’ve contacted Foundation One. That’s a super idea to see if you can find a targeted treatment for your recurrence.
Take care, Matt. Let us know what’s happening with this and what you find out. Maybe someone on here has some info about resecting this small regrowth.
Julie T.February 2, 2015 at 8:48 pm #80244lainySpectator
Aw, Matt, I am so sorry to here this BUT I would think the tumor is small enough to try something else. My husbands had returned after a Whipple and the return was to the Ampulla Vater and he had Cyber Knife. It was like a miracle and it worked. I am a little surprised that Mayo feels they can do no more. Mmmmm I think you are very wise to get a full scan as it’s like half a story right now.
I sincerely hope it is just the one and that they put their heads together to come up with a plan. In the meantime I think you are doing the right thing with opting for chemo. You never know what it can do for you and at the very least it may contain the little beast until you come up with something else. Can’t wait to read the next step. Keep your fight and courage up.February 2, 2015 at 8:33 pm #80243
I’m afraid I have some bad news to share. My check up last week (Jan 2015) at Mayo did not go well.
My CA 19-9 is back up to 360. It was over 400 prior to resection and had been hovering around 10 post-resection until now. All other blood tests were completely normal.
They found a suspect 1.5cm fluid-filled spot near my pancreas, performed an EUS and FNA and the cytology was positive for cancer. The assumption is that this is the CCA back again vs a new primary cancer but I will know for certain later this week. The tumor is in the abdominal cavity vs in the pancreas and as of now doesn’t appear to be impacting my health in any way. The tumor was not present in my previous MRI from June 2014.
My worst fear, realized, I’m sad to say. I expected this day to come, but was hoping it wouldn’t be quite so soon.
Mayo is unwilling to even consider resecting the new tumor, believing that the cancer has metastasized and there is no benefit to doing so. I’m finding that hard to swallow.
Mayo’s only recommendation was the standard Gem/Cis chemo treatment which I know is not curative and I’m afraid may not even have any tangible benefits in this situation. They did mention a few clinical trials but it seems that most require “failure” along the standard Gem/Cis treatment first.
I’ve asked Mayo to contact FoundationOne to look into genetic testing and am seeking a local oncologist to potentially start chemo. I’m also hoping to get a full scan – Mayo only scanned my abdomen so I don’t know if things have popped up elsewhere such as in my lungs.
Question: Is it unheard of to resect something like this, assuming it’s possible, even though it may be the result of metastasis? On the surface, it seems like an “easy” laparoscopic procedure…January 15, 2015 at 5:41 am #80242wallsm1Spectator
Best wishes on the upcoming scan. I think it is very, very normal to get nervous around scan time. I have my next scan in May. That will be the 4 yr post resection scan for me.
I still think about CC every single day but not all day every day like I used to. I still get nervous around testing time and every time I feel anything weird happening in my abdomen. I am accepting these feelings as the new normal. I think that is all one can do.
I will be praying for you.
SusieJanuary 15, 2015 at 5:13 am #80241mbachiniModerator
Sending you encouragement, good thoughts and prayers for a clean scan! Hoping you can have some peace and calm leading up to it……that darn scanxiety gets the better of us all at times!! Hang in there….I will be thinking of you and looking forward to your excellent report!
MelindaJanuary 14, 2015 at 5:03 am #80240kvollandSpectator
I understand the scanxiety…..my husband doesn’t get it very much…..he’s more of an optimist where I am more of a realist…..being a nurse I dwell more with the reality of things. He is now almost 2 years post surgery. His first set of scans and labs post chemo-radiation were clean then the next one was clear but his CA 19-9 was elevated for the first time since stopping treatment, all we did was go in a month earlier for labs and scans…..all clear again and the CA 19-9 was closer to normal but not quite. Enough that the ONC was not worried. He has another follow up in February but it will be labs only. Our doc told us that the 2 year mark was the big one……most all of the recurrence happens in two years, not to say that it doesn’t come back at other times. Keep putting one foot in front of the other until you get there.
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