kvolland
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There is dancing in the streets….not by me since I don’t want to scare our neighbors off but I am sure someone will. His CA 19-9 came back today and it was 16.2 which is the lowest it has been since this started. Talked to Dr. P a bit more and he says that with this protocol he does…..if you complete it and survive it then after two years the survival rate goes up quite a bit. I told him I guessed he killed off those who wouldn’t make it anyway
It’s a good thing he knows I am joking with him.SO we get to go on our Anniversary trip with nothing hanging over us. Taking of Thursday and going to see some friends in SE Oregon and visit with my mom who lives in the same general area. My sister who has been a good support will meet us there too. Looking forward to some us time.
KrisV
Welcome Callie –
Many of us were lurkers before we were members, don’t feel bad abut it. Sometimes it is all you can do just to put one foot in front of the other.
As with Lainy way to go on a second opinion and people to go to bat for you so you didn’t have to. We were lucky that we just went from diagnosis to surgery in a very short period of time. I don’t think I even thought of a second opinion but we had a great surgeon and ONC in Seattle so never felt the need.
My husband had a Roux-en-Y which is similar to a Whipple but his was quite complicated due to previous abdominal radiation. It’s been almost 2 years now and we just keep on moving forward.Keep us posted,
KrisVI love hearing the mile markers for everyone. So glad that there are those who have longer times to them. Yippee!
Congrats on the grandbaby. They are the best. We went from none to 5 in a very short period of time. Our daughter had a little boy 2 years ago and our son and his wife are in the process of adopting 4 ranging from 6 months to 6 years – three boys and a girl. They are so much fun.
Also HAPPY ANNIVERSARY! Ours is the 16th but we have way less years….it will be 13 for us. So glad to think of 50 years that is great.
KrisV
I was so suspicious today that when they accessed his port to draw blood I made them leave it accessed so “Just in case” he needed a CT Scan then he wouldn’t have to have another IV stick. He just rolls his eyes at me but grins and bears. I did have to de-access it when we got home because they didn’t have any heparin to put in it.
Dr Picozzi just laughs at me.
We did get some questions asked today which was a first. I usually forget…..and I am such a proponent of writing them.
Does not see the need for the Shingles immunization right now. Says that once he turns 60 then maybe but no need right now.
Also he should continue to take his Ursodial for the time being. He says we can revisit that in May if everything is clear.
And he could have surgery on his shoulders IF he wants….he doesn’t want.Thanks everyone.
KrisVYes, you can technically live without your liver but again yes, enzymes and insulin for the rest of your life. They actually try really hard to do do a pancreas transplant if they can….eventually if they can. Also sometimes if they do a Whipple for pancreatic cancer especially they will have to do insulin and enzymes too.
KrisV
After I read your post and was thinking a little more about what you said I realized what the doctor was talking about. It’s not as common as the adhesions but it does happen at times too. And if there are adhesions forming they will be able to take care of them too. But yeah that would cause a significant amount of pain when the “sliding” happens which happens whenever it feels like it.
Good Luck and keep us posted.
Big Hugs, Kris
Porter, I am like everyone else, it’s the best bad news I have ever heard. It’s bad that you have to have surgery again but the fact that you are is good…..almost makes me confused. As for the rest of I think I know what the doc is talking about. Often when you have abdominal surgery they move the intestines around quite a bit and sometimes when they put everything back your body doesn’t react really well to it. It can cause adhesions or scar tissue that causes the small or large intestines to “stick” together. It often causes pain when food tried to pass through the scarred areas. Mark had a previous abdominal surgery…..many, many years ago and they had a terrible time getting through the scar tissue to his liver. So my hope for you is that this will be an easy surgery since it is so close after that last one.
Keep us posted and you will be in my thoughts and prayers.
KrisV
Hi Amy –
Well, welcome to the family, sorry things have changed with Matt recently. I have followed his updates closely as his story so closely follows my husbands although my husband is almost 2 years out on his resection.
We are here for anything you need even if just to vent frustration because this is what this disease does to us, makes us frustrated.Hugs, KrisV
Alison –
Welcome to the best family….one you don’t want to be a part of but are glad you are.
I am sorry to hear about your partner’s Dad and to be so far away, that must be difficult for everyone. It sounds like you have a good support network though.
He does sound pretty healthy for an 86 year old. i don’t know very many that could safely drive that far at that age.
All I can say is maybe a second opinion may be in order. Getting a biopsy can be very difficult and brushings are often inaccurate at best. We did not know for sure if my husband had cancer or not until after his surgery. They were pretty sure he could have surgery on the tumor but we didn’t know if it was cancerous or not until after surgery. There was that tiny hope that maybe they were wrong but after surgery we knew for sure. I didn’t even know what cholangiocarcinoma was at that time and I am a nurse.
Good Luck and keep us posted.KrisV
Matt –
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.
KrisV
Hello Mary –
Welcome to the family that no one really wants to be a part of but you will always be glad you found us. I know where you are coming from my husband was diagnosed with stage3b in May 2013 and just a few days later my then 19 year old son was diagnosed with thyroid cancer. I cannot even begin to tell you the amount of comments I got from people about being strong, not crying, etc. I wanted to collapse on my self and curl into a little ball and cry until it was over. It wasn’t an option. Luckily though I found these discussion boards and I can tell you there are some truly wonderful people on here. I have melted down more than once on here and felt better when it was done and gotten the support that I needed at the time.
It sounds like the hard part is over for you…..surgery. And that is the number 1 best thing you can be told. And the big question for most people right now is to chemo or not. There are people who have gone both ways. My husband opted for 6 months of every 2 weeks Gemcitabine and Oxaliplatin then followed up with 25 doses or radiation and continuous infusiion 5FU. He wanted to do every thing he could keep it from coming back. He is now almost two years cancer free. And so is my son.
Hang in there. Keep us posted.KrisV
Depending on what strips you use, I could send you some. Mark has them on auto-refill and I pick them up once a month with my meds without fail and put them in the drawer with the rest of them…..the ones he is supposed to use and doesn’t. I will have to stop it or the drawer will be too full. And I would change pharmacies too. I get frustrated with my pharmacy too but nothing like either one of you are dealing with. Although we are sharing a med this week…..we both take the same medication for blood pressure but he takes 100 mg and I take 50 mg…..the pharmacy could only get enough 50’s to fill his prescription so he gets two and I get one. I don’t understand how certain medications aren’t available. And it’s a common medication too.
And I will have a Super Bowl hot dog or two for you Lainy. We are having a little party with just a couple of friends and Aly and her husband. Keeping it low key this year.
KrisV
Sounds good Duke. Feels so good to have all those plans lined up. You get a detour instead of a road ends ahead. Might be fun.
KrisV
Thank you everyone. ONC called and spoke with me for a little bit. He is not worried about the numbers being up. The bilirubin is still low….0.4 and it was as high as 13 at one point before surgery. Anyway he said we would do labs and the chest x-ray and see what he finds then decided on the CT. He doesn’t want Mark to have the contrast unless he has to so I get that. He tells me to quit being such a worry wort.
PCP upped his thyroid. And he is slowly increasing his insulin….although woke up last night was a low blood sugar so we can’t win. I know the blood sugar and cancer aren’t related. He’s just not taking as good of care as he should….typical man, starts feeling better and thinks he doesn’t need to be as careful. He also snacks too much. But I am trying to get him and a couple of his office buddies to walk at lunch.
I restarted therapy this week along with a short course of prednisone. No herniated disc but some some soft tissue issues…..literally sprained by back. And as a Haha funny they discovered I have 6 lumbar vertebra instead of 5…..which is funny too because Mark has 13 thoracic instead of 12. I guess we were meant for each other.
Thank you everyone for you support.
KrisV
Helen –
Welcome to the family here. It’s one you don’t really want to belong to but will glad you are. Sounds like you are already a couple plus to the positive with being diagnosed at stage 2 and being able to have surgery so I say WooHoo!
My husband was diagnosed stage 3b and was able to have a resection. He had negative margins on the second section but had a positive lymph node and some extension into nerves and lymph system. He opted to have 6 months of chemo which was 12 doses of Gemcitabine and Oxaliplatin then followed it with 25 doses radiation with continuous 5FU infusion. He wanted to give it every chance to not come back.
And has been said to chemo or not is a personal decision but remember if you start it you can always stop it if the side effects are worse than expected.I don’t have any experience with Xeloda but there are plenty that have.
Good luck and keep us posted.KrisV
