kvolland
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Thanks everyone. He is starting to get a little feisty now although he did allow me to drop him off at the doors to the treatment center today. Then I got him in a wheelchair and wheeled him around and he didn’t complain.
Tomorrow is the telling day. IF his platelets are good (they were creeping pretty low last week) then we have to decide if he wants to restart it or not. The choices are to stop completely, stop for a week or start at a reduced dose. I almost home his platelets are too low so it doesn’t matter. They will continue to do radiation no matter what.I did manage to be my dishwasher installed all by myself today. I was rather proud of myself for that.
KrisV
Truly Crissie, there are lots of reasons for the fluid build-up. Most likely it’s related to the liver not working as well as it should. Are his liver numbers like AST, ALT and Alkaline phosphatase up? If that is the case then the fluid is ascites which happens when the blood from the body cannot pass through the liver as easily as it should, then some of the clear parts of the blood leaks out and causes the bloating. If it becomes uncomfortable for him they can drain it off called a paracentesis and if he gets it fast and often they can put a permanent drain in then it can be drained at home.
I would ask the doctor because it can also have other reasons and they may just be able to give him a diruetic (water pill) to make him urinate more of the fluid out.
I would definitely have him take his weight regularly to see how fast he starts gaining any fluids.KrisV
Doc stopped the 5FU pump today to give him a couple days break from it, he said the foot pain, redness and swelling is a significant side effect of the 5FU. We will see how he does by Wednesday and reevaluate wither holding it entirely for a week or decreasing the dose.
So Mark is really happy today. The de-accessed his port today so he can take a real shower tonight. And we found the key to stopping his bloody nose….I got some Afrin and he’s used ti a couple of times and seems to have stopped it.KrisV
Thanks everyone for the suggestions. I did ask about steroids and they nixed that because of the radiation….not sure the reasoning but he was pretty adamant and same with the Emend. I think if it wasn’t for the 5FU then he would be doing alright. The pain he was having where they are giving the radiation disappeared with the some Prilosec. And truly I think it’s the combination of the 5FU and the Interferon and well maybe the Mitomycin although that was a one time only.
Lainy – We went to Carnation Instant Breakfast – minus the banana but that seems to work the best for him. I knew you had suggested that before. Strawberry is his favorite.
Jason – we tried bland and he wants nothing to do with any high carb foods like bread, pastas, potatoes, etc. He says they ball up in his mouth and taste like trying to eat glue (makes me wonder how he knows that). He’s gone with the greasier stuff like brats that seem to work although I am not sure why.
And tonight was the hardest thing of all. I shaved off his mustache and beard. The beard was not that bad but we have been together 15 years and I have NEVER seen him without the mustache. I had to struggle not to cry. I know it will grow back but he was so tired of cleaning blood out of it.
As he keeps saying we can do anything for 5 weeks and we are half way. And I guess the end justifies the means.Thanks everyone for the positive thoughts.
KrisV
Andrea –
My husband has extrahepatic cc (Klatskin’s tumor) and we were luckily eligible for a liver resection. His tumor was not super large 3 cm x 2 cm x 2 cm mostly in the left branch of the bile duct. He did have some tumor encroachment on the portal vein, one positive node and some tracking along both a nerve and the lymph system. All of that is why we are doing chemo and now radiation…..doc is worried that he is a high risk for it to return.KrisV
Lorna –
My husband did Gem plus Oxaliplatin for 6 months after his resection. I know that most often the Gem is given in combination with something else, most often I think I have seen the Cisplatin and the Oxaliplantin but there will be many more who should chime in on this.
I had pretty much the same question for our Onc in regards to the chemoradiation that we just started. Why would be want to do chemo if the cancer was gone? He said that if you think of the cancer like a weed in your yard (I think dandelions since I have so many) and they scatter seeds all over then you use a systemic weed killer over the whole yard to kill off those scattered seeds that you can’t see. We are now on the chemoradiation which he equated to going back with a spot killer.
I am not sure about Gem alone but I am sure someone will answer.KrisV
Kami –
You definitely have had the roller coaster going on. And glad that she got some time in for the family trip. Sometimes that is the most important thing.One thing you can ask the docs to do is put a permanent drain in her abdomen to drain the ascites if if has not already been done. This allows you to do it without it being a hospital stay and can easily be done at home.
Getting protein in her will help pull some of the fluid back into her blood system. But as you already know getting her to eat is tough. If her appetite is poor there are things that can help with that….Megace is a hormone that often times increases appetite, also there is Remeron (Mirtazapine) which is in an anti-depressant given mostly at night which can stimulate the appetite or even Marinol which helps too.
If her taste is off (which it can be related to the chemo) often times stronger flavors work better – marinating in Italian dressing, squeezing a lemon over chicken or pasta, etc. You may also make sure that she does not have sores in her mouth or thrush (white build up on her tongue and cheeks) both are treated with medications. Also not using metal eating utensils may help with any metallic taste she has in her mouth – we switched to plastic right now.
Making every calorie count is important. Things like Ensure, Glucerna or even Carnation Instant Breakfast will help. We use a lot of protein shakes in our house – I blend frozen fruit, vanilla ice cream, plain yogurt and milk all together….I usually add a scoop of Whey Protein Powder too. You can make it any flavor and even use chocolate syrup or other flavorings like peanut butter. We get our protein powder at GNC where they have a lot of flavors like Cookies and Cream (works great in shakes) and plain which I sneak into other things like mashed potatoes or soups.Hope this helps some.
KrisV
Our Onc said that since there is no set in stone recommended treatment for cc they just take their best stab (kind of scary really) but that they know certain things seem to work better….like Gemzar usually works best when given in conjunction with other chemo but they don’t know which works best with it. They also know IMRT works good with 5FU but how much, how often and all that are unknown. He said that most Onc’s are picking a treatment that they think works best and “going for it” with the thought being that they can retrospectively look at their survival rates. I do know that 5FU is a radiation sensitizer which makes the cancer more susceptible to dying. In our case we also have the one time dose of mitomycin and the three times weekly Interferon. Both of those are radiation sensitizers. His theory as that using the sensitizers will shorten the length of treatment……made sense to me. And my hope is that if someone later down the road will benefit from our experimentation then go for it.
Sorry you had to find out about the bile drainage. That was awful. I will give you a good laugh though….when we asked out surgeon how much he should drink in Gatorade to keep in him. He said to drink the same amount that drained…..then he told us that in the “old” days you used to have to drink the bile to prevent dehydration….not sure I could do that no atter what the consequences.
KrisV
I have been so grateful for everyone’s support through this. I would have driven myself totally crazy otherwise…..as it is I am partway there most of the time. I am trying really hard to concentrate on the day to day things especially now that he’s having issues…..lots of nausea and pain in the area where they are doing to the radiation plus so he’s pretty dehydrated….yesterday needed two liters of fluid and IV nausea meds. He’s a little better today but he now has an almost continuous bloody nose. So glad we can see the radiation oncologist whenever we want.
Also learned that due to where the radiation is at the anti-nausea drugs are really limited….only can really have the Prochlorperazine and Zofran. I requested Emend since I have heard a lot of good on here about it and he said no….not good to be used with his radiation. They are looking at Reglan but as a nurse no one of my favorite drugs. With the port in I could do IV drugs but they are shying away from that too. I guess we’ll see.
KrisV
Marion – that’s what the doc keeps telling me and I understand it intellectually but getting myself to truly believe it is what is hard. Then I keep thinking there isn’t supposed to be a tumor or cancer any more so what is the radiation killing? Is there something they didn’t get? Oh how the mind comes up with stuff when you have too much time on your hands.
KrisV
So it’s back down to 68 this week. Our Onc did say that radiation can increase it especially initially due to tissue death, especially if there is any cancer left that is being killed. He told me -again- not to get so wrapped up in the numbers but remember the scans and other labs like liver function and bilirubin are fine. I told him I would try but he laughed because he knows better. Maybe me feel better that it is down though.
Lorna –
Another warm welcome to the family. Sorry you had to join us. It does sound like things are gong great so far. As has been said previously having surgery is the BEST option. I am so happy for both of you that he was able to have it.
Chemo or not to chemo that is always a hard question. In my husband’s case we chose to do chemo and then chemoradiation. He had a fairly large extrahepatic tumor with regional node involvement (one out of two). He did 6 months of Gem and Oxaliplatin every two weeks and now we are on a continuous infusion of 5FU with his radiation.
As far as chemo has been so far other than making him tired, he’s fared pretty well. No nausea or any other issues and his blood counts have stayed good. I don’t anything about the xeloda since we haven’t dealt with that.
Good luck with the decision.KrisV
We are doing bottled water since my husband says our water tastes funny now. That happened right after surgery and he still really won’t drink it much. We just leave it sitting out a room temperature for the most part. He would warm it up for a few days after treatment but that was his preference. He also says don’t drink too fast as that got him too no matter how warm the liquid is. The Brita on the counter would work too.
KrisV
Porter –
I will say that our Onc said he was showing better than average results with the Gem/Ox combo which I think anyone would like to hear. He didn’t have concrete numbers yet since he doesn’t have a big enough group for it to really be valid but with this disease better than average sounds great.
We did the same thing of every other week but we did 6 months. Mark tolerated it well. At the end of the 6 months he was pretty fatigued but at the 3 month mark doing great.
He never had any problems with nausea although we followed the instructions for post-infusion meds to the T. Dexamethasone twice daily for two days and Zofran twice a day for two days. Also prochlorperazine every 6 hours for two days for the first couple of treatments then only as needed since he wasn’t having any issues. He did take it a few times during the course for some nausea but I think he might have gotten a little car sick on the way home.
The only other real side effect that was consistent was constipation for 3-4 days after the infusion. We bulked him before and for a few days after treatment with meds and that worked great.
The cold sensitivity is to all cold. We are thankfully leaving winter behind as he had troubles even with breathing in too cold of air. So a scarf was a must. Glove everywhere and a heavy jacket. Also drinking cold fluids he said was like drinking shards of glass so we bought an electric teapot and he drank a lot of tea and even hot water.
The only thing about the neuropathy is that if you start having any numbness or tingling, let the doc know right away. Don’t think it will get better. Mark kept quiet about it in favor of finishing treatment so his feet are affected now. Be honest about it.Good luck and keep us posted.
KrisV
