iowagirl
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November 6, 2016 at 9:24 pm in reply to: inoperable, but clean scan at 15 months (now 39 months) #86172
iowagirl
Memberwonderful news, Catherine. I loved hearing about the condo vacation. Just walking on the beach is a gift.. Julie
November 4, 2016 at 9:42 pm in reply to: Chronic Opisthorchis viverrini Infection Changes the Liver Microbiome #55787iowagirl
MemberGavin……as we know several other things that do cause CC to develop in some patients……I think we will eventually find a few more items, like H. Pylori, to add to that. My first surgeon said to us that the “cause” was most probably “inflammation”, but the problem is what all is the cause of the inflammation that leads to CC. Therein lies the “rub”.
Lainy…..you know me….and Gavin. Unfortunately, I don’t think there IS a simpler way to describe it. It’s the nature of the beast. (I do know you were jesting though). LOL
Julie
iowagirl
MemberAh Red….thank you. I have my days……sometimes I feel like I can conquer the world and other times…not so much. There are people here on the boards who know just how low I can get. I have support though, from wonderful family and from my friends here on the boards, and with their help…..I have pulled myself up a few times from wallowing in self-pity and doubt. When it comes right down to it…..knowledge is everything …..and I don’t believe in hiding from the facts and truth. It’s far better …at least for me….to know what I am fighting or might be fighting. It doesn’t mean I don’t cry…..OH MY….it doesn’t mean that at all. One of the best all time quotes of things I have said in the past, “I may be crying…but damn it…..I WILL FIGHT!” LOL (That had nothing to do with CC….but it is appropriate right now). But, I don’t equate crying with weakness…..it’s more of a very severe reaction to frustration and lack of control over a situation. I don’t know where this is headed…..but I am finding out what it is….and I will deal with whatever it is in my own way. Thank you so much for your sweet post. I didn’t expect to hear anything today from Mayo today….since they said 2-3 days. I may not hear until Monday since it’s so close to the weekend.
November 3, 2016 at 8:57 pm in reply to: Chronic Opisthorchis viverrini Infection Changes the Liver Microbiome #55789iowagirl
MemberGavin…..We had a “brief” conversation with a Dr. this week about H. Pylori and my history with it and CC……and while he thought it was interesting….he said there was no cause and effect proven. Sigh. Yeah…I know….science and all that …gotta have scientific method. But, sometimes, wouldn’t you think that looking at a story like mine, it would itch the thought process enough to have someone see something that looks suspicious and want to research it? I had found a huge study in Thailand when I was first diagnosed……and the possible connection of H. Pylori (in my case). And…..have had several doctors have some interest. My GP actually believed enough in my thought processes on this to order the H. Pylori blood test that showed I had antibodies to it (so I either had…or had had it), and then we did a poo test which showed I no longer had H. Pylori. Where did it go? I had never been treated and it takes two antibiotic and omeprazole at the same time to get rid of it. There are other aspects and symptoms to this I won’t go into here. I think I’ve outlined them before on old posts back in 2014. But, once the first resection was done…..those symptoms stopped and never returned. The big problem in looking at H. Pylori being the cause of bile duct cancer has been that it is normally seen as something that lives in the stomach….and would not survive in the environment of the bile ducts. But, the Thailand study proved that they had found H. Pylori in the bile ducts of something like 2/3rds of the CC patients they studied…which was considered to be statistically significant. Is there NO research in this county on this? I know Thailand has a large amount of CC……so they have a huge interest in finding a cause. But, I would be interesting in knowing if there is any place here in the US that is studying H. Pylori and it’s possible connection to CC.
November 3, 2016 at 4:06 pm in reply to: Chronic Opisthorchis viverrini Infection Changes the Liver Microbiome #55790iowagirl
MemberGAvin, I have been pushing the idea of H. Pylori being a causative factor in the development and growth of CC since back in the early months following my diagnosis. It’s good to see that this is actually being studied. It may be that it is a combination of H Pylori along with other factors, but I believe this will eventually be shown to be one of several causes of CC at least for intrahepatic types .
Good read.
Julie
iowagirl
MemberI’m HOME!!!! The biopsy of my bone marrow is done. Nothing more to do now except to wait for the results. Unfortunately, that will be 2-3 days.
Just in case anyone reading this ever has to have a bone marrow biopsy, I thought I would post the experience here to allay some fears and give some advice:
First, the hematologist (who I thought would be the one doing the biopsy told us that at Mayo, they have a “team” who do 2000-3000 of them per year and they are “slick” at what they do. He said, that we didn’t want him to do it…that he can do it, but not frequently enough to be as good as the “team”. Quote: “You don’t want a part -timer doing this.”
So, it is very important with a bone marrow biopsy that it is done by someone who does a LOT of them..
We arrived at the center in the Gonda Bldg at Mayo where they do such procedures at 12:45 after not eating or drinking a number of hours. They did all the usual checks of BP, temp, and questions, question, questions to plug into the computer. Then, there was the IV. The nurse looked and decided against making the attempt herself since I told her that there have been difficulties in the past. The guy, a nurse, who was to do the procedure (yes, a nurse….obviously well-trained in doing this) came in and put in the IV.
I thought that I would be changing into a “gown” but no, I was to leave on my street clothes. Remarkable.
I was sitting in a chair with siderails..which had the capability to go into a full recline. I was wheeled in that chair to the procedure room, that was very small. It was just the nurse doing the procedure and his anesthesia assistant who set up the sedation and handled that part. After about 5-10 min of getting tubing in better places they proceded to get me in the right position.
I was asked to lie on my right side with my back up to the side rail (after I was put into a full recline). Once they had me just right…they adjusted the waist band of my jeans to reveal the upper part of the hip bone. ..The sedation began gradually, to see how much was needed to get me to the point that I did not talk back to them (good luck on that).
The whole procedure was no more than about 20 min., and I was awake before leaving the procedure room. I was then wheeled back to the holding /recovery room…back where I started…..where my husband was waiting. I stayed there about an hour….ate some toast with jam and drank some pop…and was dismissed to go home. WOW!!!
The procedure itself involved a small, sixteenth of an inch cut in the skin over the hipbone. They also numbed the area with a local anesthetic. They insert first a needle into that cut and push it into the bone where they aspirate bone marrow. After that, they with draw that needle and then use another kind of hollow needle to get a core type biopsy of the bone marrow, which will be looked at to see the bone marrow as it is in my bone….not all mixed up as it is in an aspiration.
They put a pressure bandage over the area where the cut was made….which will stay on 24 hours. At that time, it comes off and IF I want to put a bandaid on it, I can. They said it may ooze slightly for a while, so I might want to put a bandaid on. However, I am allergic to most adhesives that are on bandages and bandaids. I’m going to have a hard enough time with the bandage they already put on it. The allergy causes really bad burning and can actually blister my skin. Obviously, most people don’t have that problem. I may just wear old clothes and not worry about it after I take off their bandage. we’ll see. Some areas of my body are more sensitive to the adhesive than others.
So, upon dismissal, we first went to a BBQ place for late lunch, since I hadn’t eaten for almost 24 hours. I had a three hour ride home from Mayo. By the time we got home, I am starting to feel a deep discomfort in the area of the biopsy. They told me that would be about what I’d feel for about 7 days. I’ve read 2-3 days…..and some people had nothing. I am to take Tylenol or use an ice pack if it bothers a lot. Also, I’m to watch for a temp over 100.4 (indicating an infection). However, while there are always possibilities of infection and bleeding, they said that was rarely ever something that happened. Since I am so far away….if there is bleeding or temperature…I am to go to the local hospital.
So, that is it. The words, “Bone Marrow Biopsy” conjures up thoughts of a procedure that must be horribly painful. I freely admit that Is where my head was before today. I’m so glad to report that it doesn’t have to be the case. That said, the hematologist made it very clear to us that having it done by someone who did these biopsies every day and many, many of them was very important for more comfort.
Now, the hardest part starts…and that is…waiting…waiting….waiting for the results. They said 2-3 days. That puts us up very close to the weekend, but I’m hoping I do not have to suffer through the weekend to wait until Monday. They said that my oncologist will give me the results and discuss them. So, I’m expecting them to call us with the results and then make another appt very soon to go back up there to start treatment to try to treat whatever problem is found. At this point, it’s out of my hands. I have to sit back….trust in the Lord, the lab people and the doctors ……..
Julie
November 2, 2016 at 4:01 am in reply to: DREADFUL INVISIBLE DISEASE / CANADIAN UNIVERSAL SYSTEM COLAPSED #60968iowagirl
Member“a lil less hopeless”,
I’ve been embroiled in my own issues here…..new problems with a possible /probable bone marrow disease to add to the CC problems.
However, I have been following the comments in your strand of posts. Yes, Marion, did say it perfectly IMO.
I am so pleased to hear that you are pressing for better treatment for your wife. She deserves that…and you deserve to be heard. I know that you are so beyond frustrated…and down right mad at the system……but you are doing what you need to be doing to get your wife help. It’s just that it should be a lot easier than this. I always say, “I should not have to be fighting the doctors, as well as the cancer.” It isn’t right…it isn’t fair….but unfortunately, sometimes it is the case. That’s when you dig down and get tough as you are doing.
Please know that I am praying for you (it never hurts) and hope to hear some positive news on getting your wife the treatment she deserves. You’re a loving husband…and she is very lucky to have you on her side.
Julie
iowagirl
MemberMarion,
Well, the suspense novel continues. We got to the edge of Rochester to drive about 20 miles to visit a cousin when hubby’s cell phone rang….it was the hematologist we had just seen. He had been going over my file and found that he had missed seeing that I’d had the blood smear last week and he saw the results. Because I had come to him today with so many pieces of data and questions, …..he felt he should see if we could come back so he could talk more with us. Soooooo, back to downtown Rochester to the Mayo Clinic area…drop me off, park the car, grab a wheel chair (still having some vertigo problems and always back arthritis) and we zoomed up to 10th floor Mayo Building. We were escorted in right away…but waited about 10-15 min before the Dr. came in. He went over the test with us….telling us that by seeing that, he was altering his best guess as to what we would be seeing with the bone marrow. That is….he believes now that it will probably be ……Myleodysplatic Disease…..basically…the bone marrow stops working right for at least one or more components (though in this case, he thinks the platelets are the one that is not working right because the graphing shows that they have precipitously dropped. The other stuff still has to be ruled out….but in the grand scheme of things….this has about a 30% chance of eventually converting to leukemia. Otherwise, it is a continuous attempt to control it…..drugs….transfusions….destroying blasts….etc, etc…stem cell transplant. Even if they could diagnose it for sure from the blood smear of last week…..they would not be able to tell us the extent of the disease without doing the bone marrow biopsy.
He told us earlier that they have a team to do the biopsies…..they do 2000-3000 per year there….and they are “slick” at it . (His word). He said you don’t want a “part timer” ….you want somebody that it’s just about all they do. The more they do…the faster they are….the better they are….the less pain for you.
Oh…and I will be out with conscious sedation. No question….he said I could be awake if I wanted….but he’d do the sedation (heck yes….I want to be OUT!).
So, tomorrow at 12:45 p.m. I will take a short slumber…..the procedure will be about half an hour….and then they will wait for me to wake up and be able to move around. Then, we go back home (3 hours) to wait 2-3 days for the results.
It could always show “nothing” unusual, but after seeing the smear results, he seemed pretty sure of what it might show. If it is myleodysplastic disease, then besides my oncologist, I will be seen by a hemotogloist who specializes in this blood marrow disorder. My oncologist will direct things.
We all talk about the CC roller coaster, but this coaster is about ready to derail.
Julie
iowagirl
MemberI did the survey, Gavin.
iowagirl
MemberThank you guys for being here for my rants…….this would be almost impossible to get though without you. I was talking with another CC survivor several weeks ago and she said something about after going through all this it felt like PTSD (Post tramatic stress disorder). I have to say that I agree. Things that used to just roll off my back……now cause extreme anxiety. No more than 5 years ago, if a doctor would have said they needed to do a surgery with local antisectic, I wouldn’t have blinked. But now, even walking into a room to get an IV causes the tears to roll before they’ve done anything to me. So many times,….so many unpleasant procedures….so many times….so much bad news……after a while, ….you just start to expect the worst……regarding news and pain. I have many times that images of surgeries…chemos…etc….come into my head…..and all the feelings come rushing back. PTSD for cancer patients is real. The emotional trauma is real. I think it may be time to talk again with the oncology psychologist who worked with me during chemo.
iowagirl
MemberMarion, We came home last Friday afternoon…..got the phone call from the PA about the results of the brain scan and blood tests as we were clearing the edge of Rochester. We were to go ahead and go home and they would set up an appt this week with the hematologist. Our appt is tomorrow early afternoon, so we are leaving tomorrow morning for the three hour drive for the consult. At that time, we will find out what the hematologist wants to do, but the point of the consult was to discuss the idea of a bone marrow biopsy with a hematologist and get one scheduled if he says yes. I can’t imagine him saying no. The only thing that might change it would be if they did a blood test for the platelets and hemoglobin again……to see if there was an increase in either or both. That is not scheduled…but perhaps they will still do that once we get back up there. It hasn’t been mentioned. The bone marrow biopsy has not been set up yet because we haven’t had the consult with hematology yet.
New symptom….not sure if it is related to shortness of breath….or the asthma I have …or just what…..but in the past two days, I have started dry heaving again. The asmanex inhaler had stopped that before……and I was just congratulating myself that the problem was gone….and boom….it’s back. Such fun.
iowagirl
MemberI saw my GP this morning after finding a new Mayo Clinical note from the phys. assist. It outlined the full problem they found with the blood smear as far as that could go. After my GP read it….she said that a bone marrow biopsy was definitely what was needed to find out what is going on in the bone marrow. She still mentioned the possibility that I lack a gene that makes sulva (and other drugs) damage platelet counts. It’s a fairly common gene deficiency, but more common in males, specifically black males, …..with the radio of men to women being aobut 2 to 1 from what I saw on line. Hmmm…..I do have some black heritage in my family history (we just discovered this two years ago), so who knows…..except for the guy part….maybe I get lucky and that’s the problem. It can resolve fairly fast….or it can take a long time, dpending on the person.
OR…..it could be leukemia.
Here is what the report says:
“Periferal smear identified B-Cell population. Given findings and history of chronic lympocytosis, flow cytometric immunophenotyping performed. This shows 1% myeloid lineage blasts present and rare dysgranualar neutrophils. Samm lambda light chain restricted B-Cell population detected, represents approximaely 16% of total analyzed events. Significance uncertain. “The one take away was that there were two words at the end of the report that indicated, “significance unknown” . In other words they just can’t make a diagnosis based on the seen evidence….it isn’t sufficient.
So, more waiting, more chewing nails. I didn’t “want” to do a bone marrow biopsy…who would….but a nurse friend said to push for it (you know who you are) and my GP agreed that is what I would want them to do. And no…it isn’t pleasant….but I will get through it too.
October 31, 2016 at 1:32 am in reply to: DREADFUL INVISIBLE DISEASE / CANADIAN UNIVERSAL SYSTEM COLAPSED #60972iowagirl
MemberHopeless……I don’t know what to reply right now to your post…..I’m still absorbing it all. I had felt for a long time that the “sound” of the Canadian health care system wasn’t as great as it was set up to be. Our system has it’s own problems….so I am not “country bashing.” But, basically, socialized medicine does not have the welfare of the patient at heart. The waits you have gone through are ridiculous with a critically ill person. I don’t get it.
I hope that someone else will be along soon to reply with some suggestions for you there in Canada.
Julie….fellow patient.
iowagirl
MemberLainy, I am still planning on visiting you in the here and now…on this Earth…..you never know what winter might bring. Meanwhile, I am going to try to create a mental picture of you in your cheerleading outfit next Tuesday . It’s going to be a hard day.. As for the other…..the same could be said forany relationship…..knowing that at any time, something could happen which is difficult to live through. We cheer each other on through a lot of crappy stuff that has happeneded and I hope and pray that for both of us…..we’ll continue to do that for each other as well as celebrate all the good stuff for many years more.
Marion, Yes, it is not lost on me that the CC was zapped and is gone again….NED. I had a hard time last night and off and on today dealing with this new info about the blood problem …lots of tears. I read last night that even the Meyleodysplastic Syndrom turns into leukemia over time in 30% of the cases……and we’re talking more chemo……and if it gets bad enough….the potential for a stem cell transplant. Good grief!!! Seriously, ….what next? Okay …70% don’t turn into leukemia….but apparently they treat MEDS the same as leukemia. I soooo do not want to do another chemo. Sigh.
If fingers and everything else crossed will have some bearing on it….please….turn yourself into a pretzel on my behalf.
I know you always have my back….and yes, I can feel it.
The kids brought over the two little grandboys this afteroon….which was a wonderful distraction for a number of hours. Now that they’re all gone…..the walls are closing in again……and the tears are flowing again. But, I’ll find something to occupy myself in a bit and it will be okay again. At least we won’t have to wait too long before going back to Mayo to find out what next.
iowagirl
MemberRED.
The hyper feeling after a chemo infusion may be from the steroids that are often given as one of the bags during the infusion. Steroids can make you feel pretty hyper…at least for some people I only had that feeling once during 6 cycles of Gem/ Cis. The rest of the time, I came home from the infusion day (esp the first one) and felt like a Mac truck had hit me. I stayed feeling that way for several days. BUT…..I just realized that the steroids made my blood sugar go through the roof high each time….because I am already a type II diabetic on insulin. I never was able to regular my blood sugar with insulin while I was on chemo for at least 3-4 days after that day One infusion. When blood sugar is way too high…it has the effect of making you feel very sleepy and lethargic….which is just how I felt.
I know that I have talked to others who have had a hard time sleeping after getting the chemo infusion due to the steroids keeping them awake….hyper.
The fatigue that comes like your husband is describing is pretty common I think. I know I didn’t feeling like doing much most of the time after the first round was over. I don’t know how much of that is the chemo itself….and how much is the fact that it is dropping your hemoglobin/red blood cells. At the end of round 5, my hemoglobin dropped so much I had no energy to walk 6 feet without breathing hard, was sleepy all the time and ended up with two units of blood, which got me through the final round of chemo. I’m still on the low end of normal on a good day…and sometimes below normal on hemoglobin (almost two years later) and still am tired. The hemoglobin never did go back to where it was…and each time I have a surgery again….the hemoglobin drops again.
I realize there’s some extra info in there you didn’t ask for….but maybe it will be of some use to your husband as he gets a little burther along in the chemo.
Julie T.
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