Search Results for '5fu'
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Search Results
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Kilts and food seem to be frequent tangential subjects.
Anyway, had a FOLFOX6 treatment Wednesday. Still without the 5FU in the chair, only with the pump. Platelets were 115,000, highest in months. Still having a heightened sensitivity to cold in my finger tips. Goes away after 4-5 days. CA 19-9 rocketed up though. Had been running 70-120 since last July but is now 174. Might have to push for another sample in the next treatment instead of waiting until following treatment. Option E might be closer than I thought. Diuretic still working.
Another change. Normally the steroids keep me up the first night. Not this time. Slept fine the first night but was up until 5:30 the second night.
Duke
In reply to: New member Wendy from Holland
Thank you very much Gavin for your response and all the information! I am so happy I can talk to you on this board.
I don’t think there is any chemo therapy left for me to try. The 5FU treatment was already a second line therapy. I am therefore trying to gather information and to join a relevant clinical trial based on gene, targeted or immune therapy. The offer seems scarce here in the Netherlands.
I am also particularly interested in the upcoming trials in Scotland, based on the succesful WnT pathways trials on animals, as published last week? Do you know what medicines have been tested?
I recently heard of the AMMF in the UK. I will definitely have a closer look on this site!
Thank you very much for checking if Prof Juan Valle will be able to see me & for all your moral support…
In reply to: New member Wendy from Holland
Hi!
I just wanted to give you an update. Don’t know if this is the right place for it.
Unfortunately the 5FU didn’t work, actually it back fired. All tumors have grown significantly, leaving me with (tumor) fever and abdominal pains. An antibiotic treatment has helped to get rid of the fever, but the pain is still there.I am desperately seeking for other options and discussing clinical trials with several doctors here in the Netherlands. However it feels like a huge struggle. Doctors are reserved about there own clinical trials! I feel that I am not only fighting cancer, but I am also fighting its statistics. It feels like they have already given up on me.
All tips & tricks to deal with and overcome this are welcome!
Regards,
WendyTopic: Clear Again
Saw oncologist today and everything looks good. Only did labs and a chest x-ray, no CT Scan but does not feel the need for it. Tumor marker wasn’t back yet but he just was NOT worried about it at all. So back again in three months for another scan and labs then we can graduate to every 6 months….not sure I am ready for that but we’ll see.
He did say IF they got the tumor marker back today and it was elevated again then he would schedule us for next month for a scan but he says he really is not worried about.
He laughed and told Mark that he was one of his stars since he was not only able to complete the whole nasty regime but that he survived it. His nurse said that most people can’t do either the full 6 months of the Gem/Ox or they can’t tolerate 5 weeks of the 5FU with the radiation. He also was very surprised that Mark was well enough to go back to work full time. And I said he had to go back to work because he was bored and costing me a fortune.
Big relief today. Thanks everyone
KrsiVPlatelets and WBD/ANC were good enough to get a partial treatment today (still no 5FU push during treatment in the chair).
CT scan coming up next Monday to determine whether to continue FOLFOX6 with my current onc or start docetaxel at the Cleveland Clinic with Dr. Sohal.
Got into a discussion with the onc’s nurse about “bucket lists”. She said I had to have one. I said bucket lists are what you want to do before you die. She insisted that death had nothing to do with it. My bucket list is simple – wake up tomorrow morning. After that it gets a little fuzzy. Going to the Grand Canyon, Carlsbad Caverns, and the Sequoia National Forest are up there. Plus, going to Great Britain. Sorry, Nephew Gavin – you will not get me on that trail on a tandem bike. Ain’t gonna happen. Plus, going to our favorite campground in August – Piseco Lake, NY. Plus anything spontaneous that comes to mind. On one hand she insisted that I need to get organized and make a list, then she argued that I was too organized to be spontaneous. Go figure.
Anyway, the only constant is that things continue to change.
Steroids are kicking in – looks like another late night.
Peace
DukeLate note: Sometimes I think these people could screw up a one car parade. I didn’t feel right about the Monday CT – it was too early. I was told – “If you don’t like it, there is the number to reschedule.” So I got through to the onc’s nurse – she agreed – had no idea why it was scheduled then. Called to reschedule – found out the Dr. had not prescribe the oral barium before the scan. So I went from Monday at 09:00 to Friday at 10:00 for the scan but show up two hours early to start the barium oral. And I was originally told no liquids within three hours of the scan – wrong – they want me to hydrate as much as possible.
Folks – you’ve got to look after yourselves. Do not put medical people on a pedestal – when they fall off, things shatter.
Duke
In reply to: My Introduction
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
In reply to: A bit about me
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
In reply to: New to the site
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
In reply to: No chemo today
Back in the saddle – for now.
Platelets were 67,000 and WBC was 6.6 – not great, but good enough to get a partial treatment. Still not getting 5FU bolus in the chair, only with the pump.
Onc did not schedule next chemo – waiting for outcome of my visit with onc at the Cleveland Clinic. He has published on extrahepatic CC, not the same as my ICC, but a lot closer than women’s breast cancer. Current onc has no Plan B for when my current treatment no longer works. She is unable to get insurance to pick up off-label drugs. That is purpose of new onc. Dr. Alberts from Mayo says if all else fails, contact him again and he will see what he can do. He has gotten approval in the past for sorafenib. Of course, he is out of network. Thanks, Obamacare. Another option might be xeloda, which was recommend by Dr. Javle at MDA.
One day at a time, gang. One day at a time.
Peace.
Duke
In reply to: My mom’s new journey with cancer
Golden Girl –
I would ask about Miracle Mouthwash. It usually has some sort of topical anesthetic in it which will help with the sores. My husband used it a little when he was on his 5FU chemo….his throat got a little sore and made it difficult to swallow. Also since she has taken antibiotics and her lower immune system you may want to ask about thrush. It is a very common side effect of both. They have an oral Nystatin that you can swish and swallow or a troche that you suck on like a candy. Definitely ask docs about both.
As for the stomach cramps I am wondering out loud if maybe she had a GI infection of some sort and the antibiotics helped with it. It’s hard to say especially if they can’t find the source,KrisV
In reply to: New member Wendy from Holland
Wendy,
I also want to welcome you to this site and send you lots of hugs and support! Praying that the 5FU treatment shows great results. I am also a mother fighting this disease so I know your determination! Stay positive and don’t lose hope….I will be a stageIV, ICC 5 year survivor as of tomorrow!!
MelindaIn reply to: Newly Diagnosed in North Carolina
Suzanne –
Everyone has welcomed you and I would like to belatedly add mine. Your husband’s story sounds a lot like my husband’s. He just turned 51 in August and is now 17 months cancer-free.
He did do 6 months of traditional chemo (Gemzar and Oxaliplatin) every 2 weeks then a few weeks off and then 5 weeks of IMRT (radiation) with the 5FU continuous infusion. The radiation with chemo was really hard on him with a lot of weight loss and tons of symptoms. However he did really well with the Gem/Ox with only some cold sensitivity.
This disease makes every decision a struggle. We talked long and hard about each step but Mark wanted to do everything he possible could to make sure that it never came back. We have grandchildren now and he wants to be able to take them fishing and play that role now…..we are empty nesters finally. And we have decided that this is our new “normal” whatever normal is anyway and despite all of it try very hard not to let us change anything….some days are better than others but the new “normal” is livable so far.Good luck and keep us posted.
KrisVIn reply to: New member Wendy from Holland
Thank you very much for this warm welcome! I have started with the 5FU treatment last week. Apart from some nausea I feel fine, so far so good. In the meantime I am looking for other options. I have found some new leads, hopefully they will bring me new information or new treatment opportunities. I will keep you posted!
Warm regards,
Wendy@ Moontje: I would love to have the details about Belgium!
Topic: Scan results
Can anyone tell me if it is likely to see some positive changes on a scan done after 3 months of chemo ( oxyplatin/5FU) or is it too soon?
In reply to: New member Wendy from Holland
Hi Wendy,
Welcome to the site. Sorry that you had to find us all here but glad that you’ve joined as you’re in the best place for support and help and you will get loads of both from us all. Thanks as well for sharing everything that has been going on with you, you’ve certainly been through a ton of stuff haven’t you!
Hoping that the 5FU works as it should and please let us know how that goes for you. Loads of positive thoughts are coming your way for that. So glad that moontje has replied to you as well.
Glad to hear you say that you are feeling good right now and are ready to keep on fighting this. I wish you every success in finding further treatments or trials to do. I hope you will keep coming back here and please know that we are here for you always.
My best wishes to you,
Gavin
