kvolland
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Welcome to the group Janet – It’s a great family that no one really wants to be a part of but like the rest of us you are glad to have found it. I too am a nurse and have worked Home Health and Hospice for the most of nursing career. My husband was diagnosed in May of 2013 with CC – he luckily had an operable Klatskin’s tumor and surgery was done June 4th. He had 12 days in the hospital and has been hospitalized three times since with sepsis. We are now 7 rounds through 12 rounds of Gem/Ox. His CT scan a week ago showed no evidence of disease. Other than then chemo slowing him down some things are going good.
It sounds like things are going pretty good for you. The surgeon the we had do his surgery trained at Sloan so was have heard nothing but good things about them. You do sound like you have a good positive attitude which is needed through this roller coaster ride.KrisV
Mark is being treated there now….he was treated years ago for his Hodgkin’s probably before it was SCCA but he has nothing but good to say. Mark’s currently being treated at Virginia Mason which is not part of SCCA but they would have been our second opinion if it was needed.
Also be sure and give yourself plenty of time to get from Portland to Seattle….the traffic the last few miles into Seattle can be brutal any time of the day and then if you leave Seattle any later than about 2:30 getting out of Seattle won’t be too bad, it’s getting through the Fort Lewis area.
Good Luck and keep us posted.KrisV
Mary – so sorry that that news was not good but it sounds like you have a plan and and Onc that is willing to keep plugging away at it. Going to Florida and Key West sounds like a beautiful plan to me. With the rain we are dealing with I would love to go.
With my husband he is always constipated due to his surgery and then the Gem/Ox he is on make it worse. He is currently taking 250mg stool softeners 2 tabs in the morning and then the evening for a total of a 1000 mg daily. He is also taking Senokot (just Senna not mixed with anything else) 4 tabs twice a day for a total of 8 a day. Then for a couple of days after chemo he take 2 Dulcolax twice a day until he stars moving things along. It seems like a lot but it is working for him. He says the Seonokot tastes like dirt but he takes it any way. Sometimes he takes Miralax but that doesn’t seem to work as well. You don’t have to take as much as he does, you can titrate it up to what works for you.
Another things that works well for intermittent constipation is prune juice and it works better if you heat it up some in the microwave to not quite how you would drink coffee. This seems to help well. Then there is the “Brown Cow” which is the prune juice with a dose of Milk of Magnesia in it – heated or not and it works fairly fast.Hope this helps you out being constipated is the worst.
KrisV
Don and Kerry, welcome to the best little family no one wants to be a part of. We found this a few weeks after my husband’s diagnosis and subsequent surgery. I really wish I had found it sooner but they have been the best support through all of it.
Ask away all questions. Most of us have been there done that at some point and if one of us hasn’t some else has.
Great place to find a lot of resources.Keep us posted on progress.
KrisV
Crissie – My husband never had stents so far but from what I understand from others is that they can clog up at times and need to be changed or cleaned out. I am sure that plenty of other will chime in on this pretty quick.
KrisV
Did you appeal through your HMO? A lot of times they say no right off the bat and then when you appeal (appeal several times if needed) they will usually say yes since it means you really are persistent.
We had the choice between a lower cost HMO and a little higher cost PPO. I sat down and added up the difference the cost for the plan (not factoring in the fact that two people wound get seriously ill). I looked at monthly cost, changes in deductibles, medications copays, out of pocket maximums and everything else I could think of. The tipping factor was finally the idea that I could drive my health care a little better with the PPO since as a nurse that is my preference. Cost wise the PPO came out a little more expensive but in light of two cancer diagnosis in out house it was a good idea in hindsight. You may even sit down with a financial planner (not an insurance broker) and see what they suggest too.KrisV
Randi – Not glad that you have had the journey but glad that you are where you are at now. I am hoping we will be at that point someday too. Congrats! And here’s to many more.
KrisV
Snowbird –
They should be able to declot the line. There is an infusion they use that is similar to the TPA they use to break the clots up with some strokes. I think it’s called urokinase (sp?) and it has to be done be an IV nurse but you should be able to talk to the chemo center about where they get them done. A lot of times the catheter that goes into the blood vessel develops what they call a fibrin sheath over it as the body responds to the fact that the catheter is a foreign body. We do it all the time with our home infusion patients. Takes about an hour but it’s no big deal really. You may have to have it done outpatient at the hospital by a specially trained nurse but ask.KrisV
Okay, well that was kind of a let down after all the worrying (tongue in cheek). Too bad he didn’t just tell you that over the phone rather than making you worry and stress about it. Glad though that you aren’t forced to make a decision right now though.
KrisV
Peg – My husband is just over halfway through his Gem/Oxaliplatin treatment. I know they were more worried about the Ox causing neuropathy than they were the Gem. I think neuropathy can be a side effect ofany chemo so it’s possible. The more sudden nature has me thinking it may be something else though. It’s good he is going to the doctor to have it checked out. They can draw blood to check for the gout and they they can do x-rays to make sure there’s nothing wrong with it. Neuropathy is more often described as a burning, tingling, pins and needles kind of pain where as gout is more often described as a throbbing toothache kind of pain – although every one differs in their description.
I would suggest resting it as much as possible along with elevation. You could try heat or cold on it to see if either one of those help. Unfortunately with the Coumadin he shouldn’t take any anti-inflammatories such as Advil or Aleve.
Good luck with this and keep us posted.KrisV
Shel – My husband got a head CT with his regular abdominal CT and he’s still not quite sure why….I talked to the doc and he did one just to make sure that he doesn’t have any issues up there. I think he suspects but so far he’s letting it go.
I could tell you horror stories about my in-laws…..when we working his CC up and still weren’t sure what it was my mother in law called and tried to hijack everything to get his care moved to the University of Washington since that was where she got her cancer treatment and so that must be the best. No matter how many times we told her Virginia Mason was better. She still mutters and grumbles about it even though we are getting superb care where we are. Then on my husband’s surgery day they tried to get me thrown out of the pre-op room so they could be with him and then when I came out they had removed me from the hospital system as his wife and replaced me with one of them….so when the doc called to talk about how the surgery was going it would go to one of them. I fixed it but I hate having to battle everything. I have been called smothering and over protective but haven’t seen any offers to help (just interference from them). And I could have used the help since while my husband was recovering from his surgery I spent multiple days in the hospital with my son who had surgery for thyroid cancer. If it hadn’t been for my daughter I would have had way worse time trying to be with both of them.
I am with Lainy, email a group email to them to keep them updated or in my case, I send out a text each night about treatment and any changes and have gotten to the point where I use Facebook more to keep them updated. They still cause problems but I am getting better at letting it go.Hang in there. Just try to enjoy your time with your husband. And don’t give a care about what other people think, you are never going to win that anyway.
KrisV
Shel – So sorry things seem so bleak right now. And never be sorry about venting here. We all have and that’s what we are here for.
I have been in a similar place with my husband….and his family too. A couple of weeks ago he went off the deep end yelling at me and telling me he was done with chemo and it was all my fault. He then texted his family the same thing so my phone blew up with their anger. I had to turn my phone off. He used to be so sensitive to me and always called me when he was going to late getting home and now he does none of that stuff. He swears he does stuff and he didn’t. He doesn’t even remember telling me he wanted to quit chemo. The doc says its a little bit of chemo brain (the toxic part of the chemo affecting his memory), some depression which he won’t take meds for and just plain old stress. Try to remember that it’s not your husband talking but the disease. Also if the liver is having a harder time working then it can contribute a little too.
My husband’s family is the same way. This cancer is all about them and so many times they have tried to push me out of the way and do things “their” way. Drives me nuts so I get to the point where I tell them less and less. Right now my husband is having issues with constipation and his mom keeps telling all theses weird things he can do to help….I have it taken care of. I am a nurse and they forget that.
Hang in there and always feel free to vent. Be sure and tell your husband’s doc about ALL his symptoms even if he won’t. I call and talk to the doc when he’s not around so they know what is going on.KrisV
Carlos – I am with everyone else and be sure to talk to the doctor. There are lost of reasons for swelling like that. The number one thing you can do is to limit her salt intake….try not to cook with salt and don’t salt the food after it is cooked. Also it helps to watch her weight very closely so you can tell the doctor exactly how much weight she had gained. I suggest a weight every morning and keeping a written record of it to show the doctor. There are medications that they can give to help with the water.
Good luck and keep us posted.KrisV
