kvolland
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Interesting reading. I wish I could have argued against Mark’s in the beginning especially after reading this as I really think he could have missed some of the pre-operative complications he had.
KrisV
Andrea –
Welcome to the best little family. You probably don’t want to be here but we are a great support and excellent resource. I would guess that prior to the chemo is liver might not have been working real well and allowed the fluid to back up in his body (gravity pulls it to the legs) and now maybe things have shrunk some to allow the liver to work better. There may be another explanation but that’s the one that comes off the top of my head.
How did he tolerate chemo up until now? I would think that would be a big indicator on if he wants to continue to do it. My husband just turned 50 and we have been dealing with it since May of 2013. He has had surgery, chemo of Gemcitabine and Oxaliplantin. Now we are now doing 25 doses of radiation and a continuous infusion of 5FU along with Interferon injections.
CC is often referred to as a wild ride as you probably have already found out.KrisV
Makua –
Sound like things are headed in the right direction now. It’s too bad he has the infection but at least he is in the hospital getting treatment now. The medications they are giving him are probably going to make him feel a whole lot better. Fluids and all the other stuff will help too.
We have been down the infection road several times too. Once just two days before his surgery…..when they placed his bile drain he got a blood infection. They treated him with antibiotics and anti-fungal medications and were still able to surgery. But he was on oral stuff for a month after surgery.
Then he had three more infections after that. Never did find the cause although they think it is from his gut where the surgery was. It seemed that every time we had chemo three days later he was in the hospital for a 5 day stay. So far none with the chemo we are one now.
I would suggest to your DIL to get Home Health involved since maybe they can help keep him out of the hospital and it is most likely covered with their health insurance. Will give her and extra set of eyes on him without having to go in to the doctor all the time.KrisV
Makua –
Sounds like things are headed in a better direction than they were. So glad to hear that. One thing you might suggest to your DIL is that she ask for Home Health (visiting nurses) at home when he gets to come home. They can help a lot with the management of all the stuff he needs at home including the PICC line, nutrition and Port when it is placed.
I will say though that getting a port will not be an absolute for no infections in the future. The PICC and the Port both will always increase the risk of infection just because it is a foreign body in your body. As a nurse I have dealt with many PICC’s and Port including with my husband and have had good luck and bad luck with both. I generally prefer the port though just because it is under the skin and when not accessed is not a worry. In fact my husband’s PICC got a blood clot around it and the Port was pulled for continual blood infections although the Port wasn’t the source.
It’s a good thing you were the squeaky wheel and it sounds like you really go the ball rolling.
Good luck and hopefully things are all going to be better now.KrisV
I have heard of it but never seen it. When my husband was having his blood infection problems they were concerned about narrowing of the surgical sites as there was no air in his bile ducts. The GI doc said that the lack of air was a sign of the narrowing but our surgeon said it was not definitive. Other than that I don’t know but I bet someone else on here will. I will be as interested as you to see what everyone has to say.
KrisV
One of the things you can do for the fluid build up is to keep his protein intake up. The protein will help draw the fluid back into his blood stream. It’s not an instant fix but will help with the process. Meats, eggs, cheeses, cottage cheese, yogurt…. all that good stuff. If you are vegetarian then rice and beans, tofu and other protein substitutes. Protein shakes are great too. There are tons of ways to make them but we used frozen fruit, ice cream, yogurt and milk. Also we added whey protein powder….my husband liked the milk and cookies flavor and then I hid plain, unflavored in things like mashed potatoes, gravy and soups.
As for the tummy problems, I would ask the doctor. There are lots of things that could cause that. If he has had recent antibiotics that can cause issues like that. Probiotic might help regulate things (ask at the pharmacy it should be over the counter). If it continues have the doctor check a stool sample and they can tell a lot from that.
Hope this helps.KrisV
Roxanne –
Welcome to the family. You certainly have gone through the wringer with all this. I had Kaiser many, many years ago and they drove me nuts. As a nurse I knew what my kids needed and until my son nearly died from an asthma attack, I couldn’t get them to give him the meds he needed. I learned from a friend of mine that they often deny the first time you ask for anything but the more times you appeal then the better the chance is to get them to say yes (kind of stupid but I guess they figure they can save money by saying no). As I like to say be the squeaky wheel and bug them as much as you can.
As for getting the bilirubin down under 2, our doc said that it should be under 10 (I guess maybe the “rules” differ from surgeon to surgeon) so my husband had his drain placed 4 days before surgery. He too had complications from his of dehydration and a low-grade infection.
The biggest thing to do is really try to keep him hydrated. (I know easier said than done). Remember that anything liquid at room temp counts at fluids so not only water but jello, ice cream, soups, Gatorade, anything like that….as long as it doesn’t have caffeine. Also need to try to keep protein in him. Again easier said than done. A couple of tricks I used was to make protein shakes (frozen fruit, ice cream, plain yogurt, milk all blended and you can add protein powder). Also you can make jello and substitute the cold water with some sort of clear protein drink (Ensure Clear or I found a protein drink called IsoSource at the pharmacy). It sets up the same as regular jello and tastes the same but is fluid and protein.
Keep us posted and remember we are always here.KrisV
Dear Makua –
Well come to this wonderful family. Never worry about what you post, this is a great place to vent and let everything out. We have all done it.
I have no answer about doc’s to go to on the East Coast since I too live on the West Coast, but be the squeaky wheel. If you don’t like an answer then keep pushing and asking.
As for the stent, he should be feeling better as the stent should be keeping the duodenum open so food can pass. The IV nutrition is a good stop-gap measure to rest his stomach some but should not be a permanent answer (although it could be if needed). Again I would be the squeaky wheel until your son gets some help.
By the way, my husband just turned 50 and he is 9 months out from the same surgery your son had. I know how that recovery can be rough.KrisV
I just think we all have to remember that anything posted on the internet can be accessed. Even when deleted or marked as private, there are those that can get the information. I would never put anything on here that I would not say in public to anyone. I never thought about it from a potential employer stand point but I am not the one with cancer. I would think that if an employer used cancer as a reason not to hire you it would be discrimination if you could prove it. Just my thoughts.
KrisV
Well, two doses of radiation under his belt so far and other than tired he seems to be doing okay.
Drove up Tuesday and got the port placed. Dr Neuzil who placed it was thankfully thoughtful of my husband still wanting to shoot his rifles so placed it more to the center. Then stayed the night and did chemo. He got a one time dose of Mitomycin (looked like purple Kool-Aid), his Interferon injection and then started his 5FU continuous. Stayed another night for radiation again this morning then I will take him up tomorrow. Sunday he moves up to his sisters for 5 weeks.
So far he is just tired and a little flu like from the Interferon. He is sleeping a lot but that’s okay.
I did decided though that it’s a good thing I don’t live in a big city. Too much delivery food…..we had awesome Italian food and Vietnamese food. I could get way too used to that. We only have pizza at home.
KrisV
Valerie –
If she has long term care insurance than you may want to look into that. Quite often it will pay for in-home custodial care (bathing, dressing, light housekeeping, etc) and it will pay better than for actual placement in a facility. There are often deductibles with this and sometimes it is good to get it out of the way when the need is not heavy.
The bile drains can be problematic at times (stents and drains alike) but I have found the drains for the fluid build up are less problematic but if they get her liver working better then the fluid will go away or at least lessen, my husband went from 6-7 months pregnant (thats what he looked like) to normal in a few weeks after surgery.I wish her good luck with the trial.
KrisV
Matt –
Your story still really does sound a lot like my husband’s. We are currently done with adjuvant chemo and are doing 5 weeks of chemoradiation (5FU continuous infusion with 25 IMRT doses).
It does hit you really hard when you are healing from the surgery which is such a BIG surgery and they start hitting you with chemo and follow ups. We totally understand that. We were day four after surgery and Mark was finally making sense when he talked and then in comes this oncologist we had never met and starts talking about long term plans, chemo, radiation, recurrence and all that. That was only the second time I had cried at that point. We had thought surgery was all we were going to have to do.
This really feels like a roller coaster ride through out with lots of highs and lows. No one wants a ticket to this ride either (and I normally love roller coasters too)
I would be more than willing to share our experiences if you are interested. I am always willing to take a phone call (360) 880-0327 or email dazoo3563@comcast.net.KrisV
Porter –
It is a tough decision and one we have faced. Now I do not profess to have the answer for you but I can give you some thoughts. Our oncologist said he looks at four things in regards to doing chemo or chemoradiation: 1) the size of the tumor (the bigger it is the more likely he wants to do it) 2) any mets regional or locally (meaning had it started to spread which increased the likelihood of recurrence) 3) the differentiation of the cancer (were the tumor cells more or less like the original cells) 4) if there were negative wound margins during surgery.
In Mark’s case he had he had a good sized tumor with tracking along a nerve and a lymph chain (that was for chemo), regional mets (one node so that was for chemo), it was moderately differentiated (so middle of the road), he had negative margins (so not chemo). He had two negatives, a middle of the road and a positive. He strongly recommended both chemo and chemoradiation as a greater chance of no recurrence.
Mark opted to do both since he felt like he wanted to give it the best chance to not come back since it is so virulent when it comes back. He never wanted to wonder “What if?” later down the road.
Now as far as side effects from the chemo after resection I don’t think it’s really an issues. My understanding is the liver takes about 6 weeks to regrow after surgery so by the time you are ready to start chemo it should be ready to go. He tolerated it well other than cold tolerance and some fatigue and we did it for 6 months.
I would say ask lots of questions but most especially what drugs and do you think you could tolerate possible side effects like the fatigue. Nausea can be managed with meds for the most part.
Good luck with your decision.KrisV
Derin –
I know how you feel about the hospital. We did thirty-five days between June and September. I think we should get a punch card and when you get so many stays in the hospital, you get a free week somewhere else…..like a resort with sun, sand and NO Needles.
My husband had three rounds of sepsis after his surgery and they never really did figure out why. They thought scar tissue and narrowing of the new bile ducts but they never did say for sure. Hate that.Good Luck at staying out of the hospital.
KrisV
