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Thank you everyone for your thoughts. It was rather scary and I am glad to say it is all for nothing.
Had a little rough yesterday after chemo, it's really starting to get to him. His numbers are still good enough to do chemo but his red blood cells are dropping so getting anemic....don't tell him but I switched him to PreNatal vitamins. They have a little more good stuff in them. He slept most of today. But we only have three more doses to go.
I've been kind of a little more quiet on here the last week or so as I dealt with my own little scare. Being the good nurse and dealing with all the recent cancer in our house, I was doing my monthly self-exam and found a rather large lump in my breast. Scared the living daylights out of me. Took me a few days to even get brave enough to make the appointment. So today while Mark was in chemo I went and had my mammo and an ultrasound done. I hadn't even told him what was going on.
And I am happy to say I panicked over nothing. I was feeling a medium sized cyst that is nothing to worry about at all. Thank God! I would have run screaming into the night if we had gotten a third diagnosis of cancer in one year. I would really think it was something in the water.
Thanks for letting shout out my relief!
My husband agrees with you totally...and well so do I for that matter. I guess you could do a veggie pizza but somehow that is just not the same.
Very beautiful Laniy. Made me tear up.
We never saw a full complement of our team at any one time....ONC, surgeon, GI doc, interventional radiologist, etc but they do meet weekly here at Virginia Mason and when things were critical in the very beginning they did meet weekly and discuss his case. We were given updates from theses meetings afterwards from which ever one saw us next. That seemed to work pretty well since we got everything we needed in a timely manner. You may need to push people and push hard if you need to. Never worry about being a good advocate for your loved one.....we all have to do it.
Also if you don't understand something be sure to ask why....you may to ask several times but ask. We called a "time out" several times in the beginning to get us on the same page as the docs.
So sorry that things aren't going well right now but as we know this is a disease of up and downs.
Hi Chuck -
And as everyone else has said Welcome to the Family.....or the roller coaster ride depending on the day. I have said several times that this is not fair to any of us. This is my husband's second battle with cancer in his 50 years. Thankfully the first one was Hodgkin's lymphoma. And at the same time my husband was diagnosed with the cc, our youngest son was diagnosed with thyroid cancer so I cried and yelled a lot for my family.
I think everyone get scared and upset by cancer, no matter what the cancer and who they are. I would almost say you were abnormal if you didn't. Even my husband who is the most positive and upbeat person who never lets anything get him down has had his moments. A few weeks ago he up and decided he was done with chemo....no more and had the whole house in an uproar. He was 5 doses into 12 doses without even having done the halfway scan. Then the next day he was fine....acted like nothing had happened.
It's a crazy disease and so traumatic to everyone involved in it.
We have started doing things a little differently in our house. We take it one day at a time. We live in the moment and I take lots of pics that not only show our journey but keep the memories alive.
We have our first grandchild who thankfully lives with us and has been a blessing to all of us but Grandpa wants to be there for all of his firsts.
Good luck with your fight and remember we are all hear to listen.
We talked to him about at last chemo and he says still holding about the same with that group. He's lost a few to non-cancer related problems but the recurrence of the cancer is low.
I too as a healthcare profession often times only see patients in passing. I quite often wonder how things turn out after I am gone. In my current position I only see each home health patients for a couple of hours before turning them over to their nurse case manager. I think every health care professional looks back. I thankfully live in a small community and run into family members, friends or even the patient's themselves. I think truly dedicated healthcare professionals have that compassion and concern about the lives they intersect with.
Good job with that one Gavin!
I know this is not CC but Pancreatic Cancer can be just as bad....and this is the wonderful ONC that my husband sees. He's hoping for some of the same results for his CC pts.
http://www.gastroendonews.com/ViewArtic … ;a_id=5943
Hope I did the shortcut right.
Happy Thanksgiving to you Dakota and family -
Sound like a very familiar story to us. My husband's tumor was in basically the same place and we went in to surgery not knowing if they would get it all. They did the laproscopic procedure first then went into do the hepatectomy of the left side of his liver and the caudal lobectomy. The the Rou-en-Y procedure after taking out all the bile ducts, gall bladder, etc. His 6-8 hour surgery turned into 14 hours but there were complications related to scarring and adhesions from a previous surgery. We went into it knowing that they might not be able to get it all and the risk of not getting it all meant that it might spread quickly and aggressively. We also knew that our only chance at a "Cure" was surgery.
We were not told it would eliminate radiation in the area. In fact we are now in the process of considering radiation as a treatment just to make sure they got all the cancer. We are 8 out of 12 doses down on Gem/Ox chemo.
I guess our thoughts for surgery were too look as taking the chance the surgery might work versus knowing what the outcome would be eventually if we did nothing.
It was rough. They scheduled the surgery for us before we had even made up our minds. It wasn't until we came back a week later for pre-op that we were sure we were making the right decision.
I would just make sure that whatever surgeon you chose to do that had lots of experience in these types of surgeries.
Good Luck and good holidays.
My husband had the same surgery your dad did for his Klatskin's tumor back in June. There was an issue that came up in July regarding a possible infection in the area where the bile ducts and the duodenum come together. The original surgeon consulted on this since we were arguing against having stents placed. Our surgeon said he could do no more surgery in that are (meaning the area of that original surgery) but he did not say no more surgery ever, just no it that spot. We are currently 8 out of 12 doses of Gem/OX down and doing fairly well. My husband had clean margins and one positive node. I would think that age should have nothing to do with doing a surgery or not (I do understand your health system though), it to me is more of a quality of life issue so be your father's advocate. I have always said that the squeaky wheel gets greased.
Marco you would welcome to email me directly if you wish. email@example.com
I understand your husband's feelings and yours too. Now is the time to just enjoy each for what it it. He may or may not have a lot of time but really the only person that knows that is God.
I would suggest Hospice their goal is not to help him die which is what a lot of people worry about but their goal is to give him and you quality of life. They will also support not only him the entire time but also you and the rest of the family. And there is support that you would not imagine for all of you.
Hospice and a lot of ONC would prefer that the hospice people get on board a little sooner rather than later so they can do more for you.
Hang in there.
Jules - one of the side effects of steroids is quite often an increase in appetite which in some cases in a very good thing. IF you are diabetic it will also cause changes in blood sugars including elevated blood sugars and rapidly changing. I would say if she is hungry for what ever reason then let her eat. I would just make sure that whatever she eats has good nutritional value and try to stay away from empty calories. Proteins where animal or plant proteins are one of the biggest needs since her body is fighting this disease. The higher the protein levels are in the blood the better things should.
You may also see a slight burst of energy with the chemo quite often related to the increased fluids and the steroids. You that too but don't let her wear herself out.
Good luck as things go on.
Yeah I think a little too much but that's okay. I try really hard to make small batches and remember I am not cooking for 6 any more, just the three of us plus one small grandbaby that doesn't eat much. I thought the sauce tasted a little sweeter but I liked it.
And I am sure it was destiny Lainy. There are lots of things about Mark that make me think he was the one.
And then after dinner tonight which he hardly ate, he finally tells me he has that strong metallic taste from the chemo and nothing really tastes right and that anything with meat in it tastes bad. Would have been nice to know. Now I know why he eating so much Top Ramen because it still tastes pretty good....yeah I know totally gross to eat but at least I got him to put an egg in it for protein.
I tried the baking soda in chili tonight and it worked great....no heartburn so far. I may have used a little too much for what I made. A coupe of people in my house complained that it didn't taste quite right but I liked it. Maybe I will use a little less next time.
Thanks bunches Lainy.
I have taken Oxycodone off and on for years due to a fouled up knee surgery years ago. I can definitely say I an NOT addicted to it but it makes life so much better at times. The medications are usually prescribed as every 4-6 hours AS NEEDED for pain so you only take it when the pain is really to a point that it makes you uncomfortable. If at night seems to be the worst then maybe just one at night before she goes to bed and see how that does.
The other way is to use that pain scale of 0-10 with 0 being no pain and 10 the worst pain she ever has....pick a number that she doesn't like it getting higher than like say 4 and dose as it gets to 4 or is at 4. Keep track of when she takes it and how well it works ie she took it a 9am at a 6 and it made it a 2. That helps you decide when you need to ask for an increased dose.
There is nothing wrong with asking for an increased dose either, it does not mean addiction it just means your body is having more pain and it will take more to achieve the same effect. Your body also gets used to the pain med so it may take more to achieve the same results.
Biggest side effect is constipation and there are a variety of over the counter things you can do to counteract that. The other one that happens occasionally with some people is that it makes people jittery and awake rather than tired and sleepy. If that happens ask for another med. The first couple of times she takes she should monitor carefully how she feels and definitely not drive until she knows how it affects her.
I am a big fan of using pain medications when one is in pain. There is so much negativity about pain meds due to the media (some of it understandable and justified) but there is no reason for one to be in pain. Always remember if you have any effects that you don't like on one medications there are others.
Hang in there and we are always here if you have any questions.
Getting your radiology results and sometimes lab results means asking whoever did them. I know that with some hospitals and clinics those two things are actually outsourced to another provider and all your doc sees is the reports or looks online to see the actual film. And I know for labs at Providence where I work, you need to ask the lab for them since they are a contracted provider.
I would ask your doc's office or look at your Explanation of Benefits from your insurance to see who they paid for those. You may have to fill out a release for your medical records for them too but it's easy.
Also look at see if there is an online portal for your clinic. At Virginia Mason we are able to log on to our health record and print out labs. We still have to call and specifically ask for radiology.
You probably will need to send the labs and radiology films/CD's to get an opinion or they will have you come and do it with them.
Things are going pretty good. I am afraid to brag too much since I am sure that will cause issues. He just finished round 8 with 4 more to go. Numbers are all great. He's only a tiny bit anemic but not enough to worry about. Platelets good. White count is elevated....he has another sinus infection so started antibiotics last night. We've actually both been working.
Our son is three hours away at college and is doing good too. Started therapy finally for his shoulders.
Our chiropractor has a massage clinic next door so I get a massage then see him if needed. They know the full story so I get a break on the cost too. Great people. It amazes me how thoughtful and generous people can be.
You are right about not knowing where we will be. This with both husband and son this summer had really moved that to the forefront for me. We try really hard to live each day today and not worry too much about tomorrow (try is the key word, I struggle with that one some days). I am constantly taking pics which sometimes drives my family nuts.
And being the caregiver is tough....you have to make time for yourself too. I have every other Friday as MY day. It's between chemo doses and I have the day off anyway so I do what I want.....I usually get a massage and then laze around the house. Everyone knows that is my day and try to leave me alone. The only exception is if someone is sick then of course I lose it. I found that helped quite a bit once I was able to.
Okay, I will have to give the baking soda a try since having my gallbladder out I limit the acidic foods since it give me heart burn. That would give me one more thing I could add back.
Welcome to our little family here. So sorry you had to join but you will find the support above par.
As for traveling and eating out, my husband and I have been fairly regularly although we try to limit his being out from days 7-11 after chemo as our ONC told us that is when his counts would be the lowest. And we try to stay away from any place that has crowds so sometimes we limit family interaction during that time (all of our immediate family had their flu shots to that helps and NO ONE is allowed around it they are sick). Hand sanitizer is great although I might suggest one more....some sort of anti-microbial wipe...there are a lot of different wipes even something like Lysol bleach wipes or something like that. We use them to wipe surfaces down such as grocery carts and things like tabletops at restaurants. They can be used once and tossed.
The other thing I might suggest is making sure that meats are well cooked rather than anything that is on the rare side.
The pain from constipation can be pretty uncomfortable so getting that taken care of would be the best.
There are several things that may help. Lactulose certainly would and it can be given at varying doses to help....more if needed.
You could also try Stool Softeners something like Docusate Sodium which helps make it easier to pass and then Senokot which is a natural fiber laxative and can be given twice a day to help (up to 8 tablets a day - 4 tablets twice a day).
Sometimes even prune juice heated up a little can help and you can do a "Brown Cow" which is prune juice with milk of magnesia in it....works pretty well.
Talk to your hospice/palliative care people and they should have suggestions too.
Good luck with this.
Sounds like things went pretty good. I guess if having the Y-90 would have my husband cleaning bathrooms I would be all for it. I think having the holidays off for chemo would be great. We luck out and don't have the chemo the actual week of the holidays except New Year's so it won't be too bad. Have some great holidays and enjoy the family.
Welcome aboard the roller coaster no one really wants to ride. So sorry you had to join us. I am with everyone else on the site....keep asking questions and get as many opinions as you feel comfortable with. My husband's tumor came from the same area and was encroaching on the portal vein but he was able to have successful surgery in June....14 hours but they said they got it all. Only one lymph node was positive. He is now just over halfway through his 6 months of chemo to follow up.
We didn't get any other opinions although it turned out alright anyway. We got lucky. Looking back on it I guess I would have done more research and asked more questions. Although I am not sure I would have changed anything.
Good luck and keep us posted.
Hi Don -
You already got the answer about he mm to cm ration. The mL or ml is usually referred to as milliliters and is used to measure liquids. On one of my husband's CT's they used ml's to quantify the amount of ascites they thought he had. I would think that they were using ml's to estimate some sort of fluid collection but without seeing the report I wouldn't say for sure.
And second, third and even fourth opinions are wonderful. Keep us posted on how you are doing.
Our oncologist told us not to worry about it. It was 75 at the beginning of chemo and he says it is trending downward but he doesn't tell us the exact number. He also said that a lot of different things can affect the CA-19 including having had surgery. My husband had a Roux-en-Y which is similar to the Whipple in June but does not involve the pancreas, just the liver and bile ducts. He said that we are more worried or more looking at the CT scans to see if there is any visible disease. So far we have to evidence of disease.
I would do some more reading on it too because I am sure that I read somewhere that it's not a definitive test for CC like it can be for other cancers......but I can't remember where and if I really did read it.....too much on the brain.
Posts found: 1 to 25 of 212