Search Results for '5fu'
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Search Results
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In reply to: On the whole, I’ve had better weeks
What not to say to someone you haven’t seen in awhile:
Oh, I thought you died.
Seriously, I ran into my across-the-street neighbor this week (we normally keep very different hours and don’t see him all that frequently anyway). He did not know I have cancer, but that’s what he told me. And, he apparently told other neighbors I had died.
I was … speechless.
Other than that, I have 7 days of IMRT left (out of 30). My oncologist says next week is my last week of cisplatin/5FU (since I only have 2 days of radiation that following week).
I guess I have to wait about 4 weeks for scans after this to let the inflammation go down. I don’t know what to do with myself without daily/weekly doctors appointments. I don’t think I’ve had a week since October without some medical issue.
What to do after the scans is the big question.
Lisa
In reply to: Rough Go
Well the week is up and we saw the ONC today and they restarted both the radiation and the chemo although the 5FU is at 75% of original dose. Also restarted the Interferon today.
Labs were pretty good although platelets were only up to 100 and I was hoping that they were up over 150 but close enough.
Mark says he’s feeling much better. Bloody noses have mostly stopped and his mouth has mostly healed. He’s eating better and even gained a couple pounds so he’s back over 200#.Now for fingers crossed that we can make it two more weeks then we are done. Wedding is Saturday so he should be feeling alright for that.
KrisV
In reply to: Introduction
Chrisna-
You will find that I am more than willing to share anything that might help someone else with this disease.
Mark was officially diagnosed with his surgery June 4th 2013 but we first heard the words Klatskin’s tumor the middle of May along with cholangiocarcinoma. Even though I am a nurse I had never heard the word before. Didn’t even know what it was.
His first rounds of chemo started in August after healed from surgery. He did 6 months of gemcitabine and oxaliplatin. He didn’t have a lot of side effects from those. Mostly just tired toward the end. He did develop an allergy to it at the end but it was the last dose anyway. The cold sensitivity was pretty tough as he had to drink warm water and all that stuff. He had a little neuropathy but that resolved.
Now we are doing 25 doses of radiation along with 5 weeks of 5FU along with Interferon and a single dose of mitomycin. The 5FU has been rough. In fact we just held everything for a week to give him a chance to recover. He lost some weight, was dehydrated, developed sores in his mouth and couldn’t walk but those resolved once they stopped it. We have two more weeks to go at a lower dose so we will see.
Nausea has off and on been a problem but the meds for it are so much better than they used to be that we have been able to control it with meds for the most part. The fatigue can be more difficult but as long as he sleeps at night I don’t care if he naps a lot during then day. He has lost some weight due to decreased appetite but I keep giving him different high protein stuff like protein shakes and Ensure so it’s not as bad as it could be.
Hope this helps and feel free to email too.KrisV
In reply to: my dad’s cholangiocarcinoma..
DukeNukem wrote:I’m a 63 year old male who was diagnosed in July, 2013. Tumors were found in my liver (19 cm), both lungs, and some lymph nodes. Since then I’ve had eight rounds of carboplatin/gemzar. The tumor in my liver has shrunk to 11.6 cm and the others have also shrunk. The only down sides have been fatigue, lower platelets, and some further degradation of hearing.My onc has taken me off carbo for a little while to help my kidneys.
Surgery and radiation are not in the mix for me, so I am going with chemo as long as there is improvement.
HI Duke my dad’s planning to change his chemo from gemzar/5fu to carboplatin/gemzar. He is getting his treatment in Australia and I know that the hospitals in USA is more experienced, do you reckon the dosage used would be slightly different, and might affect the result?
In reply to: Introduction
Again, since surgery isn’t on the table for me yet, my only experience is the chemo and chemo /radiation part. I’ve seen a number of chemo combinations talked about around here. One of the most common is a combination of gemcitibine (Gemzar) and cisplatin (or some other form of -platin). I did the gemcitibine/cisplatin combo for 4 cycles (chemo 2 weeks in a row, then an off week). They also gave me fluids and a steroid and anti-nausea with the chemo. I tolerated it well. After 4 cycles, my doc did a MRI/ct (I’ve still never had a pet) and felt it was working really well. Not that he could see the tumor change by the MRI or CT, but he said all the teeny tiny inflamed bile ducts in my liver had cleared up and the inflammation was gone. That and the blood numbers told him it was working.
So, instead of just finishing another 4 rounds of chemo, we moved to radiation with chemo to try to kill the sucker dead. I go to radiation 5 days a week. My chemo changed then because the gemcitibine doesn’t mix well with radiation. Instead, I’m taking something called 5FU, which I get through an infusion pump that I wear Monday – Friday. I get my cisplatin and fluids on Monday, just as I used to.
Next week is my last dose of chemo. I finish my 30 days of radiation 4/15. Then I wait a month for internal inflammation to go down before I do new scans. They will be the key in deciding next steps.
I’ve felt pretty good through most of this. Minimal nausea – that’s the worst for me. My work has been supportive (thankfully).
I asked my doctor why I’d never had a pet scan. He said that he didn’t think it was necessary. Mine hasn’t spread. He said that if he were looking to see where there was metastasis elsewhere, he’d order a pet, but that it didn’t show anything any better than an MRI or CT on the bile duct.
I agree, you guys are getting confusing info. They need to spell out what it is they recommend.
My doctor mentioned two different chemo protocols when we were starting out, told me what they were and why he recommended the one I did. Doesn’t mean if it stops working, I can’t try another one.
Good luck.
In reply to: Rough Go
Hi Kris. It sounds like Mark was suffering a little and hit a bump on the road. Sorry that you both have to deal with this. Though I did just read too that he is of the 5fu and sounds like he is already feeling better! Many hugs and blessings to you guys for a continued well recovery. I think of y’all often
PorterIn reply to: Rough Go
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
In reply to: my dad’s cholangiocarcinoma..
pfox2100 wrote:Hi Andrea and welcome to the site. It sounds like he had completed about 4 treatements (or cycles?) of chemo? You mentioned that the 2cm on the lung look like it had disappeared, did they mention anything about the one in the liver? I too had a 17cm tumor in my liver as well and was on gem/cis for about 8 cycles. My ICC was contained in my liver and had not spread to any other areas of my body. I am sorry you and your family have to go thorough this. Please keep us posted. Is he going to continue the chemo?
PorterHi Porter. My dad completed 4 treatments of chemo and he just started another cycle last Monday. The first cycle of treatment was not as successful as we’d predicted, the tumor in my dad’s liver decreased only 1 cm from the original 18 cm. He’s now on gem/5fu and we’re planning to do 5 treatments this time.
Has your tumor shrink after the 8 cycles of chemo? and are you still doing chemo or you’re thinking about some other treatment?
In reply to: Rough Go
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
Topic: Rough Go
Well, we are just now half way though the 25 doses of IMRT and the 5FU pump with the Interferon.
So he kind of breezed through the GemOx before but this time, if it’s a side effect then he has it. The first week was great, no problems, ate well, drank well and even went out for dinner with some friends. Then it was like he hit a wall and went all down hill from there.
Mark’s constantly sick to his stomach although he says its an upset stomach not nausea. Plus he gets carsick now on the two hour drive to Seattle so has to have Ativan. He’s thankfully only vomited once. He won’t eat so I am forcing stuff on him but it’s not much, lost 10# so far. Not drinking fluids so needs fluids when we see the Infusion center on Mon, Wed and Fri for his Interferon injections.
Now he’s developed the sores in his mouth…..we got the Radiotherapy Mix or Miracle Mouthwash as I have heard it called too. It seems to help with the pain but he doesn’t like it.
And his newest thing is that he can’t walk. The bottoms of his feet hurt too bad so he kind of hobbles around the house when he absolutely has to. I have been lotioning the living daily lights out of them but it hasn’t helped. I finally just gave him a pain pill so he would sleep.
Oh and to top it off he has an almost continuous nose bleed. It seems to just ooze all the time. His platelets are low but not that low right now. Doc knows about it and he thinks we may have to see and ENT to cauterize something in there.UGH! I told him he didn’t have to do this. That no one would think less of him if he stopped it all but he knows there’s just over two weeks left and he wants to power through it. Gosh, I am so glad that I decided to bring him home with me so I could keep an eye on him. I am not sure I would know it was this bad if I hadn’t.
I hate seeing him like this. It just breaks my heart. I just wish I had a magic wand to wave.
Sorry about the rant but I know all here would understand my frustration. Thanks for letting me.
KrisV
In reply to: IMRT and CA 19-9 question
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
In reply to: IMRT and CA 19-9 question
I think it’s interesting that treatments are so similar, yet different.
I’m getting 35 IMRT (wonder why 35 instead of 25) plus cisplatin once a week and 5FU that I wear Monday-Friday. This is the first week I’m getting the whole package as I had tube infections and fevers and dehydration and getting my kidneys recover. February was, in short, a disaster.
In reply to: New Member seeking advise
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
In reply to: my dad’s cholangiocarcinoma..
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
Topic: IMRT and CA 19-9 question
So Mark started his 25 doses of IMRT with 5FU continuous and Interferfon injections. He did a one time dose of mitomycin (looks like grape Kool-aid…very strange). His CA 19-9 was within normal range of 17 at the end of chemo (Gem/Ox) at his appt on Jan 31st. It was up a little a week ago when we started the IMRT and chemo but now it’s up to 170. I asked our ONC about it but his answer is that they don’t really worry about it as many things can affect it and the cc is not always easily monitored with the CA 19-9. So my question is: could the IMRT cause the CA 19-9 to go up or one of the drugs they are using? Has anyone had this experience with the two of them. And I wonder why then they check it every week if they don’t worry about it too much.
KrisV
