iowagirl
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Kris, I have no experience with this…but am sending you a huge hug. Even with your training…or maybe even more so because of it making you more aware, I know you must be so worried. I can “hear” in the words you’ve written about your husband and the saga of his illness, that he means the world to you.
Hugs…and more hugs,
Iowa Girl
Julie t.Dear Labrador,
I am fairly new to this too, having had my tumor found Jan 27th, 2014. Please know that you have found a place to come filled with wonderful people who don’t judge….and will listen and understand. We’re all in various stages of this disease and there’s always someone who has gone through something similar to what your loved one is. But, the one thing that is constant through everyone here is the universal caring. I don’t know when I’ve ever had the experience of such genuine acceptance. If you need to just talk to someone and vent a little….this is the place. If you want info…you couldn’t have come to a bretter place either.
Julie T
Crissie…I forgot to say that my liver enzymes were right smack in the middle of normal…as they always have been…..and I get the blood drawn and tested at least twice a year for other reasons. For intrahepatic versions of CC, we rarely have any symptoms at all…not even the jaundice /itching…until it is usually late stage 4. Even my C19-9 test after the tumor was found was right in the middle of normal range…so we can’t really use that to show if my cancer is returning. My tumor grew part of a cm between when it was found and a month later. If I had any symptom at all, it was that I would get full faster when I ate, in the month and a half before I was diagnosed..but I had been dieting for a year and a half, so that wasn’t suspicious. I also did notice my urine sometimes was pretty dark in the month before I was diagnosed..and it gave me pause to wonder, but I wasn’t drinking enough either, so when I increased my liquid intake, that went back to normal. One other sign….was that I had a spontaneous diabetic low sugar event (43…very low…took 3 hours to get it to go up to 100 and stay there). I later discovered that that is a sign of liver cancer…esp in diabetics. My blood sugar stayed way down….almost normal until I had surgery to remove the cancer….and then it started creeping back up as I recovered….behaving more “normally diabetic.” Anyway…thought I should add these “signs”, which weren’t much for signs at all.
Found during a CT my doctor ordered for diarrhea lasting most of a year after having C-Diff colon infection …..and C-Diff was already killed off. Initially, had gone to the doctor because of acute pneumonia, but a side conversation led to the CT scan order. Incidentally, they caught part of my lungs in the CT of the pelvis and saw the pneumonia, plus a bunch of tiny nodules that got them worried. They have been explained away as infectious in nature in follow up CTs.
Julie T.
Thanks, Gavin, I’ll check these new ones out. My printer is on the fritz…new a new one, but as soon as it is set up, I will print off copies for my binder for easier reference. Cool Dude!
Julie T.
Matt…I called the Hope House and indeed you have to have at least three treatments for cancer a week. I guess, Thank God, I don’t have to do that…..I will be grateful. However, if you can take care of yourself, you don’t have to have a caregiver with you. It is indeed free as long as you meet the pretty simple criteria and would be an incredible place for someone to stay while battling cancer for the various things they do for the patients and families.
Meanwhile, she suggested that I call the Mayo Patient Advocates which I did. They are going to put together a package of possible places keeping in mind my reason for being there and the time intervals. She was also extremely knowledgable about other things….including our type of cancer and also the doctor’s names. She wanted to know who I was seeing at Mayo and when I told her Dr. Domingo who is an oncology fellow, she was familiar with him. I then mentioned Dr. Grothy, who appeared in my patient notes after the l6 week post op checkup and she filled me in on him….he is a liver, Bile Duct and Pancreatic specialist….also colon cancer as well…..as that was the only thing I could find on him with a quick web search.
I told her my story…briefly as I could, as to why I was wanting to make a switch to another doctor and she said she thought it was very reasonable to do considering the interaction I had with my local guy.
I think if he brought in another doctor or two and could share the duties, he could go back to the type of medicine he wants to practice, but he is overloaded (still giving him the benefit of the doubt because of the glowing reports from so many people). It just isn’t working for me. With this being a rare cancer which he apparently isn’t that versed on….and being stretched too thin (IMO), and with my additional problem with diabetes and some allergies I’ve had with medications, I think I need the team approach that is found at Mayo. I HAVE to get this blood sugar back in control, or I could be in serious problems with blood clots.
I had forgotten entirely about the patient advocate program. So, if you go back there again…assuming you are…..you might check in with them as well. If I can get this arranged at Mayo, we might even run into each other…as I think you said you had to go back this summer for a scan? I’ll be finishing up 4 rounds of chemo at the end of July…and then try for two more, “God willing and the creek don’t rise.”
Just gotta get this all figured out…but at least a start today. I may do the gem infusion here next Tuesday….just to give myself time to set up things at Mayo if it works out. That third week being off would help out the timeline a lot. I shouldn’t have as much problem with the gem alone from what I’ve heard.
Thanks again….you’ve been a lifesaver today.
Julie T.
Matt…Hope House Lodge looks wonderful, however, one of their requirements is that you must be receiving outpatient cancer treatment or support three times per week….and blood draws, Dr. appts, etc do not count. I’m not sure of the difference of treatment vs supoort, .but with only one infusion on day one and 8, that throws me out of the running for one of the rooms. DRAT….what a great idea though, I will remember it to pass along to others as a possibility.
Onward to the next idea.
Julie T.
Matt….first….the blood test will only show that you have had H. Pylori….and not necessarily that you have an active infection. That said, it’s hard to get rid of it…very resistant these days to antibiotics….so the regimen my GP suggested was 3 different medications at the same time to eradicate it.
HOWEVER, I had asked her to have a breath test or poo test as these will detect actual active infections of H. PYlori. She did not think those were available here in our area…and possibly only in a study situation. Interestingly enough, the oncologist as least did say he could do the poo test in his clinic lab, so that is what we are doing. It will hopefully show whether there is an active infection in the gastric tract that needs to be treated, rather than treating antibodies that might indicate a previous infection that has been cured. That said….it can’t be cured easily, so unless you were on something really strong for a number of days, an infection likely would still be around.
The current reading I did this morning was that they think reflux in the duodenum may be a way that H. Pylori makes it way into the bile….but that isn’t confirmed. I think they had some other ideas.
My husband is going to be tested,….as he had a rare tumor of his colon (very large, but caught before it turned malignant….even the surgeon told me it was cancer the day it was found on a routine colonoscopy). He’s had two ulcers, but each time I think that no H. Pylori was found….but they’re still checking his old records. Now we are trying to decide if our son, daughter in law and kids need to be tested, because this is easily transmitted with body fluids….and that little grandson of ours traded bites of food with me…and he with his parents. Sigh…that just breaks my heart…but at least if a poo test can be done, they won’t have to do a blood draw on the little one.
Thanks for the links to Hope House. Will let you know what i decide on going back to Mayo or what I find out about Hope House. I think it may be my first call after looking at the link.
Julie T.
Matt, did not know there was a Hope Lodge via Cancer Society there. I have experience the Mayo system twice in my life….once 35 years ago when they removed a volleyball , benign tumor from my uterus that let us go on to have a full term birth of our only living child after local specialists said I would probably have to have a hysterectomy. They actually lied to us…flat out lied that they didn’t know of any other doctor /surgeon to try the surgery except their buddy. As it turned out the Mayo doctor was one of the two top gynecological surgeons in the world at the time and his response was that they do this surgery every day, and though my tumor was some larger than most, it was doable and he expected us to go on to have another child, which we did. I actually wanted to go back to Mayo for the pregnancy, but was nixed by my husband….so we went to the U of Iowa, because I wouldn’t go to ANY of the OBs here in town.
Now, here I am again, and as before, Mayo didn’t disappoint…or not much. Having an oncology fellow as my primary doctor, was a little more stressful because he was overly cautious and dug into everything imaginable and scared us silly that we might be dealing with mesolelioma or sarcoma of the lungs…or something, who knows what, growing between two other organs (obviously was an adhesion from my previous surgery and a cesarean to boot…lucky that’s all there was from those two.
Yes, I do believe I deserve better….and though they have marked my chemo as being curative instead of the other two catagories, I feel that when he first met me over a week ago, he probably figured he was dealing with another terminal case which colored his opinions somewhat, but there more to it than that. On Tuesday, he was openly hostile to me in front of his staff…..everything got very quiet except for his angry outbursts.
I will check into the Hope House to see what I can find out. My husband could take me up there, stay with me for the chemo and then maybe go back home to work for a week and a couple days…to gt through the day 1 and day 8 infusions and then come get me to be home for a week and a half. It would be incredible lonely, for both of us….we’re both worried about each other….but it might be the best solution. The day 8 infusion is only the gemcetibine, and not as likely to cause issues. A hotel situation would get very costly and my husband can’t take off that much work right now.
Now later this morning, I am still dealing with what seems to be issues with mild tightness in my chest…and mild breathing issue from the tightness. After two Benadryl capsules in the late wee hours, the itching has subsided on my arms pretty much and my legs are much quieter, though there are still itchy areas, just not all over from foot to mid thigh. I’ve been sitting here in the recliner off and on since 4 a.m. with my feet up…trying to drink more water and keep the fluid from pooling in my legs so much. Every once in a while, I get a very wierd sensation in my legs, kind of like after your foot or hand falls asleep and it starts to tingle as it wakes back up. It’s momentary, but something I’m tracking.
Thanks for the encouragement…it helps give me some resolve to do something proactive. My husband is great, but he hates to see jumping from one place to another….even though he said earlier he would be glad to drive me to Mayo for the chemos. But I reminded him of the last time I didn’t follow my gut instincts……actually two times now. Once, the fibroid tumor that ended in the death of our child when I wanted to change doctors, and the other when I was having diarrhea for most of last year and didn’t go further with it when the colonoscopy didn’t show anything. If a CT would have been done at that time, the tumor probably would have been half the size and with no other tumors present it would have been at most T2a instead of barely T2b.
BTW…I am researching into the idea that an infection caused the diarrhea since it went away for a while twice with an antibiotic, but came back the first time in two months and the 2nd time didn’t come back (but had surgery that removed a good hunk of the left node). My theory is that the infection was from H. Pylori which I have now found out has been studied in Thailand as a probable cause of bile duct cancer. In fact, they said that actually few people infected with the liver fluke parasite go on to develop CC, so there has to be some other lurking cause. Turns out that H. Pylori, contrary to what was previously thought, can indeed live in the bile ducts. I had a blood antibody test that showed I have antibodies to it and thus I may still have it or it had been killed off by some treatment..most likely Vancamiacin which can kill off most everything, but is reserved for only the resistant bugs, like C-Diff of the intestinal tract (which I contracted Feb2012) I’m going to write Mayo doctors about it….copy the studies I’ve been reading and relate my story one more time. After I was diagnosed, I had the “gut” feeling that my cancer was somehow related to that diarrhea, and now I am convinced I am right. One thing this oncologist here has agreed to do, is do a poo test to check for active H. Pylori. I don’t think he is going to find it….but maybe? Stay tuned on that. I realize this isn’t about the chemo problems…but it does take my mind off of them a little bit and when I posted my ideas, I probably put it in a place not as likely to be seen on the boards.
Julie T.
Dhill, Comforting thoughts and prayers sent your way for your brother, you and your family. May he find relief from pain and may you all be at peace with this journey. Show him your love through touch and words, even if you think he doesn’t know. He probably does and YOU will know you did and it will be good for you as well, to know your did these things.
Hugs from Iowa Girl
Julie T.Gavin, Wow, I had NO idea about some of those items, but it makes total sense. I don’t think that all of those were covered in the info from my oncologist this morning, so I will be extra vigilant now that chemo has started today.
Thank you, thank you,
Julie T.
I agree with Lisa ….it isn’t just for having CC that we need to have these documents in place. There wouldn’t be much argument in our family over where we would be buried, as we have a burial plot among other family members already. Still, it’s good to have things in writing. Shortly after we were married, we wrote up wills , which at the time were pretty simple, but they covered any future children, just in case we didn’t get around to revising as our family dynamics changed. Since then, we’ve changed our wills, etc several times to reflect the changing situations, the most recently about 4 years ago. They are still up to date, so we shouldn’t have to deal with any of that right now However, there are some personal, family items that my husband wouldn’t have a clue of the importance….family heirlooms passed down several generations, valuable paintings, jewelery, quilts, etc. I found my self on the bed in pre-op for my liver biopsy, …telling my husband while I was in tears….several of the special items which weren’t marked….a special quilt….pieces of jewelery….who I wanted them to go to in case something happened. Normally, those aren’t covered in a will, but should be written down and at least marked with a note as well. We only have one child, age 34, so this shouldn’t be a problem, in any case, but you never know.
Great info, Linda,
Thank you…Julie T.
Deepak,
I want to add my deepest sympathy to you and your family on the passing of your mom. Your efforts gave you and your family time with your mom that was almost stolen from her….time to make some good memories. When all is said and done…that is what we all want……MORE time. Your mother was very blessed to have you as her child.
Julie T.
Just had my port installed last Friday and even with a bolus of the conscious sedation “juice” in the IV was was wide awake for the entire procedure….not my idea of a good time at all for that hour. I don’t think he thought I was truly awake and would remember, because he said some things I don’t think he’d have wanted me to hear in context to the procedure. I’ve had conscious sedation work just fine before, so I have no idea why it didn’t work this time, but it also didn’t work when I had the liver biopsy either.
Hope like anything that the procedure goes quickly and that they can give you something, anything to lessen the sensations. Will be thinking of you and looking to see your post after you get it done and feel up to it.
Hugs from Iowa Girl,
Julie T.Steve, I hesitate to say welcome, but in the same breath, I truly mean “welcome” with all my heart. I have a “few” years on your fiancee.
….like….uh….like 27. She’s about half a year older than our son. I was diagnosed with intrahhepatic cc in Feb and had surgery to remove two sections of my left liver node for a 5 cm x 4 cm x 4 cm main tumor and a quarter inch tumor (the latter found on surgical ultrasound at the start of surgery). I also had 6 lymph nodes removed and they were negative along with a 2.2 clean surgical margin, as well as the pathology showing no neural invasion or vascular invasion found. (That means they looked and didn’t see anything, but can’t definitively say there isn’t any…still, a good direction in any case.) Did they check your fiancee’s biopsy/pathology for these two invasions? They are important, because this cancer can spread through lymph nodes, nerve and blood pathways.
Where was the first surgery done?
I, also, did not have the more common tumor marker C19-9 elevated and all of my liver function tests were in the very normal range. There were no symptoms they could identify to say I had CC, but that isn’t unusual with intrahepatic CC either. That’s why it’s rarely caught early enough to do anything…it hides until it’s too late. Mine was caught similar to your fiancee’s…when I went into the doctor’s office for something else and after a CT was ordered, the large tumor was seen.
My staging was T2b, but it sounds like hers “may” be T2a, depending on how they use the size of the tumor (similar in size to mine). I would be curious to know. Mine was T2b because of the tiny extra tumor found a short distance from the bigger tumor.
Did they remove the gall bladder because it had stones in it, or because they felt the gall bladder was involved with the cc? Again, I am just curious.
My advise….read, read, read….as much as you can to educate yourselves about ICC and its treatments. (I’m assuming her tumor was “in” the liver tissue itself and not in the main duct…that is…is it actually Intrahepatic CC?) The more you can read, the better you can help your fiancee to make educated decisions. As the patient, I found it very difficult to read the information, as everything sounds so dismal, but there is hope. That doesn’t mean that she won’t cry…or that you won’t cry with her or by yourself in “those moments,” but as you become use to the way things are…not what you wish they weren’t, it will become some easier.
If your fiancee is not at a major medical /cancer center, I suggest getting to one for the actual surgery. Even my local oncologist did not want me to have the surgery here locally, and we have two hospitals, at least one being a top 100 hospital and the other a major cancer center. The problem is the rarity of this cancer, with ICC being even rarer, and most oncologist probably will never see a patient with this in their practice lifetime. Thus, they don’t have the expertise to deal with it. In addition…and the biggest reason given to me to “get out of Dodge,” was that the surgery for this cancer and liver surgery in general, takes a special surgeon with much expertise, which is generally only found at major medical centers. There are a number of them mentioned often on these boards…MD Anderson, being the top cancer center in the US, followed by several others…Sloan Kettering, one in St. Louis, Mayo Clinic in Rochester and in Texas, John Hopkins, Mass Gen. I know there are others, but my memory is shot today. I made an appt myself before I was finally diagnosed to go to Mayo in Rochester, MN and it was a good decision. My surgeon ONLY does surgery on the pancreas and liver and actually is doing research on CC as well as a professor at their School of Medicine. After every other doctor, pathologist and radiologist (except a substitute oncologist here locally who was “sure” it was bile duct cancer)chewed their nails over what to diagnose. That included some doctors at Mayo as well, the surgeon took one look at the images and said, “I’ve seen this before,…..this is bile duct cancer.” Just like that….in a couple minutes. But, that said, this cancer is hard to diagnose sometime when the markers just aren’t there and the initial biopsy isn’t conclusive for anything but being an adenoma type cancer….and then they say it’s a cancer of unknown primary until they hopefully figure out where it came from. Personally, I was hoping for breast cancer if I had to have one……better survival odds and a boob job to boot. Even my oncologist commented that “This isn’t a good one to have.” Nobody wants ANY cancer, but we don’t get to choose….this is what we have to deal with. But, anyway, the poor “girls” will have to stay the way they are in my aging body.
))) ))))I’m somewhat surprised that “they” are going to do another surgery and remove even more of the liver, after removing 40% in the first operation, unless they didn’t get a clean surgical margin or something else with which I’m not familiar. What did they tell you was the reason?
I know it’s really a punch in the gut,…..and it feels like nothing will ever be right again when faced with this crappy disease. But, as I said before….read all you can….just be careful to stick to the main cancer treatment centers and studies and you’ll be fine. The main problem I’ve had is having a really great friend, who just doesn’t get it. She really believe that thinking positively will cure you and if you can’t think positively it won’t turn out well. Mayo Clinic says that is a myth. No one can be positive every minute of the day and everyone has bad days. It IS true that if you “can” have a hopeful and positive attitude, you will be better able to enjoy the life you have. It’s just that when someone gets cancer, suddenly there are certain people who just won’t allow it…talk of bad tests results..saddness…..they become your “mental health police.” I’ve found finally that the best thing to remember with them, is to not give them too much information on the disease itself, because IMO, the problem is “them.” They are the ones who can not handle the diagnosis and esp the prognosis and denying you the right to feel crappy or sad once in a while is their way of coping. If they don’t see YOU feeling that way, then they don’t have to either. That said, this person is the sweetest gal and one of my very best friends who would do ANYthing for me (and has already). She is there to take me to the doctor or tests when my husband can’t and has made us food countless days as I recovered, and gets me out of the house even when I hurt and would rather not. I just have to remember that each person in my life has different qualities and once you recognize what that person is able to do to help you, and what they can’t, you honor that and stop pushing them to live the crap part of this cancer with you. It took me a while to understand this. You two may or may not have someone who is willing to listen and understand that you just need to vent off frustration or sadness sometimes…but if not, we’re here to be that ear…no judgments,….only understanding, because we’ve all been there.
The days to come will be hard to get through as a couple….but if you can get through this together, you can get through anything over the course of your marriage. My husband and I have been married for almost 39 years and have been through some pretty awful stuff over the years, but each time, we stood strong and faced everything head-on, coming out on the other side with an even stronger and I might add, more “tolerant” marriage. (Yeah…I wasn’t a perfect wife at first.
)Julie T.
