iowagirl
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Porter, when I hadn’t seen anything from you on here or the facebook page, I had the ugly feeling that something was up and that you were dealing with it internally before disclosing the results of the scan,
So, I can pretty much only echo what the others have said,…..you’ve got a great team who are acting very aggressively, but thoughtfully. They saw this thing, watched it…and though it’s grown, it doesn’t seem to have grown really fast. But, now, they are ready to act with another resection, which you WILL get through okay…and get those darned intestines hopefully straightened up as well. Messy intestines are not a good thing!!!
))Duke said it so well…..having another resection…who likes the idea of that….but your team is on top of everything and they’re pushing for something very proactive. Then…..best of all…you can move on again.
I like the attitude of your team and the people they consult. Get things ready, get it done…and get on with life. You KNOW I will be praying for you during surgery and waiting for the report back to us.
Hugs,
Matt,
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.
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.
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.
SimplyDave, I don’t have to read between the lines of your post, to know just how happy…..and relieved you are to reach this point. It is so good to see our loved ones doing well after surgery and know that they have received a chance for good health again. You and your wife will have our continued prayers.
Hugs,
Julie T.Sorry everyone, about the excessively long post. As you all know, I can get wordy, but this one probably exceeds the “wordy” limit. However, Moose’s post really struck a nerve with me…..and I applaud her for having the courage to say the things she did.
Yes, yes, yes…I can relate entirely with everything you said in your first post. I knew immediately, when my GP asked for a CT scan, that she was looking for cancer, but it surprised her as well, when they found the tumor in my left liver lobe. I’ve also had surgery, Feb 2014, and the last year has been a blurr. Yes, people say stupid stuff…..and it sounds like good things to say to them, I”m sure, but we know the impact it has…and it isn’t usually good. I think that they say these things because they think it will help you fight the cancer…and it makes them feel better. Otherwise, they can’t cope with it. I know…where does that leave us, as patients. We feel like we’ve been slammed in the stomach with a ball bat and people are telling us these stupid things. Talking to a psychologist really helped me a lot, because I could tell her things…say things to her…and cry my heart out to the point of sobbing if I needed to do that. She also helped me to see that I didn’t need to explain anything to anybody…or even tell some people that I was dealing with cancer. That cut down a lot on some of the stressful conversations. But, I remembert desperately just wanting someone to know what this cancer is and understand. There are responses you can use that tiptoe around the subject. Of course, if you’re having chemo and lose your hair….then people do start to wonder. But, we can always say , I lost my hair and hate hats and scarves or wigs and leave it at that. Unless they are someone close to you, you don’t need to give them anything more for info. If they ask, it is perfectly fine to tell them that you would rather not discuss it. If they persist, you turn on your heels and leave. It’s pretty amazing how empowering that can make you feel. I have to admit a few times using my cancer to get rid of telemarketers (and they have taken me off of their call lists)
))) I”m glad you found us …though I would rather none of us had a reason to be here. Some people use some anxiety drugs to help them cope with all the feelings, but I prefer to use the psychologist mainly because it gets it out and she gives me tools to help me through rough spots. I may use something before getting scans for the anxiety, but inbetween, things seem to be pretty good. Let us know how things are going…..don’t be worried about spilling your guts here…..we’ve all done it….patients and caretakers alike and there are no judgements. Don’t feel guilty for being able to have surgery when others aren’t able to have it for various reasons. And don’t feel that because you had surgery, you need to suck it up and “get over it”. Oh, have I heard that one. You will never get over it…but you will come to terms with it and find there are days that you rarely think about it. Yesterday, it was about noon before it came to my mind…..and then, I can honestly say that I didn’t think about it again for hours. So, here I am, a year out from surgery, and it’s not the first thing on my mind every day. But, I do remember when it was…and I know you are probably in that place right now. It’s okay….it will get better….even if you do adjuvant chemo and don’t feel well, you may think of the chemo as something totally separate from the cancer….esp since you had surgery already. Maybe not…but everyone is different. I really do recommend though that if you could meet with a psychologist who deals a lot with cancer patients….you will find that it is a safe place to release emotions, fears and you will maybe find out some good coping skills. It may not work for you….we each have to find our own way with this, but when family and friends aren’t helpful and can’t handle the scary and sad stuff, then we, as patients, have to do what we can. Groups like this help, as does prayer (if you’re so inclined), psycologist’s help, medications….and usually a combination of all of the above. Why do people say the things they do…..because it isn’t really you who needs to think positively….it’s THEM….they can’t cope with the subject themselves and by telling you that yoiu have to be positive, it takes the heat off of them. Is it fair…heck no….but the best of friends and the most loving of family members will often surprise you and not be the rocks you thought they would be. It doesn’t mean you have to toss them aside…or never be friends again. It just may mean that they aren’t personally as strong as you had hoped. Hugs……Julie T.Relate?…..you betcha. I personally like, “Undead, ” probably because of the shock value.
)) Though, the one about still being fat despite cancer hit home. I may have to use that, as I had thought that I was the ONLY one who gained weight on chemo instead of losing. I am going to copy this article and bring it out every once in a while to read. Thanks Marion.Wendsy, I’m so sorry to hear that someone so young as your son has this awful cancer and that you are having to deal with insurance issues to boot. I don’t have anything much to add to some of the really good comments above. I just wanted to welcome you here and to let you know that you have found a good place for info, help and comfort from people who have gone through this themselves, either as a caregiver or patient. I am a patient, myself, and have experienced a lot, but there are others on these boards who know so much more. Right now, you just need to get your son, “somewhere” where the doctors are familiar with this cancer ….where they will treat him. Second opinions are often needed….and sometimes 2nd, 3rd and 4th opinions. Insurance or not, your son deserves to be seen and treated.
I hadn’t realized the Vietnam Vets Cholangiocarcinoma facebook page existed until I followed the link. When I did, my heart sank…seeing post after post of vets who have died of this cancer. I had speculated that the Vietnam war might be the cause of the rise in cases of CC in the US. in recent years….but after seeing the Vet’s website, it has to be a huge part of the reason for the rise. The timing is unfortunately, right.
Thanks for sharing that. If I hear of anyone, I will pass this along.
JulieOne more additional comment about my post above….to put things into perspective. Val’s post on the Facebook support group, was in response to someone who had been told that surgery for their CC was too difficult and chemo wouldn’t do any good.
This post and a couple others has brought a bunch of people out to post that they had surgery…or chemo 3-6 years ago, after being diagnosed at stage IV and told there was nothing to do for them. There IS hope.
Julie T.
Dot…..I’ve felt every last bit of what you mentioned…..and of course, none of it changes anything, but it is what we have to go through. For most medical issues, time wouldn’t be so much of an issue, but for this cancer, time is EVERYthing and decisions seem to have to be made very quickly, so everything is compressed, including the process of grieving over the diagnosis, anger, blaming, accepting the diagnosis and gearing up for the fight. It’s so very overwhelming, isn’t it? I’ve been there….as a patient. You never need to apologize for those feelings…they are normal and we’re here to remind you that YOU are normal for feeling them. While the statistic seem horrible …..there are many who have gotten good results from treatment and have added months, and years to their lives.
Same here about the telemarketers……I just laughed out loud when I saw that comment. I think I really have taken it out on them. I truly do have compassion for anyone with a terrible diagnosis, but I think the last marketer who called about donations to their cancer, I told them that if they donated to MY cancer, I’d donate to theirs. There was a lot of sputtering on the other end of the phone line and I thanked them for calling and hung up. I was feeling particularly testy that day.
) I don’t think it really made me feel any better….the poor person who called probably thought they were doing something good….and they were. Sigh. I’ve tried to be nicer after thinking about that. But…..sometimes, you just have to let it out and woe the person on the other end of a telemarketing call. I have to admit that I did use CC as an excuse to get political callers to quit calling us. When I stopped them and explained that I was going through chemo and how difficult the calls made it for me ….and asked them to take me off their calling list, they did…and we quit getting those particular calls for that organization. Who would think that telemarketing calls would be part of the fight?Wow, Sandie…what a trip…and what a dare-devil you are. Make wonderful memories and enjoy, enjoy, enjoy. We love hearing about your exploits.
Julie t.
Kris….ditto what Marion and Gavin said. I’ve got numbers that are going up and down and up again……a couple of concern enough that the onc says we’ll “watch” them, but they’re probably caused by something else. I was amazed when the local onc told me that the issues with spine could be causing the alk phos to be elevated and that it also could be holding down my hemoglobin. Everything is so interconnected in how our bodies work.
If it has been 3 months since the last scan, I don’t see why not to do one, just to ease your mind. I think you are doing the right thing to bring the liver numbers to the oncs attention and if you really feel strongly that you need to know that there’s nothing growing (at least that can be seen), then push for a scan. Mental health and physical health go hand in hand and that goes for you as well as Mark. It may be that the right thing would be to wait one month…have a new set of blood labs drawn to see if there are any changes up or down. If they are trending up….then another scan sooner certainly makes more sense. Other things…such as unknown viruses can cause the liver enzymes to raise. Sometimes you don’t even know you’ve been sick. That happened to my husband. I was sick…..very mildly….barely noticed…but husband started having night sweats and his liver enzymes were WAY high through the roof. He went through every testing in the book….and the end result was an infectious disease doctor telling him that since everything else was ruled out, he had hepatitis of an unknown type and that the numbers would go back down…which they did.
As for the A1C being up to 9. If Mark hasn’t been doing well in watching his Blood sugar numbers and taking insulin when he should, that is probably the reason for the high A1C and not a new cancer growing. In the year before my diagnosis, I had another illness that was causing my A1C to go up….and I just gave up for a while. Suddenly, my blood sugars normalized….and my A1C was 7.1……but it was because.the tumor I didn’t know I had was keeping my liver from apparently kicking out more sugar. I actually had a sugar low of 43 and later I discovered that a spontaeous (not caused by too much insulin injection) low sugar like that is a sign of a cancer in the liver. By the night before sugery, my A1C had dropped to 6.9. I could eat just about anything and not need insulin at that point. So, I guess what I’m saying is that i wouldn’t make too much of the high A1C. It just sounds like maybe Mark got tired of all the medical stuff and gave himself a break from medical stuff and diabetes (not that it makes it go away), and I have to admit to doing the same thing a couple times over the years….like right now for one instance.
I wish I could be there …right there where you are….to take you shopping or something to get your mind off it it. But, I know you won’t stop thinking about it. I’m sorry to hear that the steroids didn’t work for your back. I was hoping that they might calm down the inflammation and give you some relief. There are several things they can do besides the epidural cortisone. I found out that a friend had a nerve block shot…which has given her a lot of relief. She still has to be careful of hurting her back, but no pain. There are other things yet to try
For now…hugs from me….Julie T.
