My virgin message to my fellow semi-colons

scouty
scouty Member Posts: 1,965 Member
edited March 2014 in Colorectal Cancer #1
After a perforated colon last November that then went into severe peronitis, I finally found out that you can not always trust your doctor will know best. The end of February I found out I had a rectal tumor. I then changed doctors ...the UNC School of Medicine. After the usual pin cushion tests, they found liver mets and a spot on my lung. I found all of this out last Friday and had my first chemo treatment yesterday. Leucovorin with Eloxatin as the appetizers, Avastin will be added as the main meal next trip (after my port-a-cath heals up some). Dessert is a push of 5-FU and then the fanny pack drip for 46 hours more of 5-FU. I was very pleased to not be nauseous my first treatment but suspect that will change. I also wonder if anyone else is on the same bi-weekly plan I am on. Being new to this all, the information can be overwhelming and I want to learn as much as I can, while giggling some too.

I first logged in to this site this past Tuesday just to read, but was a little scared to write anything. But after reading some more of your messages today, I am over that now. Cheers to you. Am drinking my room temperature water as I write this.

Lisa P.

Comments

  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #2
    Welcome scouty,

    So you are Stage 4? You will be hearing from our resident stellar survivor (and celeb) Stacy who is stage 4 kick butt survivor!

    As for me my "cocktail" consisted of organic carrot juice, major supplements in mega doses, and Chinese herbs. Oops, and organic coffee enemas. Happy to say that after 2 1/2 years I am still cancer free!

    The chatroom is a fun hang out too if you want to venture in there. They don't sacrifice virgins but are known to be pretty whacky.

    peace, emily the local granola alternative nut :-)
  • Kanort
    Kanort Member Posts: 1,272 Member
    #3
    Welcome Lisa,

    I am on the same regimen as you except, I am not taking Avastin because it was not available when I began chemo. I have had nine treatments with four more to go. However, I have had to stop treatments for four weeks because of elevated liver enzymes. What is your dosage of oxaliplatin? Mine is 140mg. I get my treatments bimonthly. I have not had any significant side effects until this liver situation. I am Stage 3 with 3 out of 31 lymph node involvement. Yes, you will want everything that is usually cold at room temperature. I notice that even when I push a grocery cart that sometimes the cold handle will cause my fingers to tingle. That feeling usually goes away four or five days after treatment. You may also notice a strange feeling on your tongue or even the taste of food may change. Food tastes like you have sprinkled melted metal on it instead of salt! Ha! I started treatment in November. Feel free to ask me any question and hopefully, I may have an answer.
    Best wishes and Happy Easter!

    Kay
  • kangatoo
    kangatoo Member Posts: 2,105 Member
    #4
    Kanort said:

    Welcome Lisa,

    I am on the same regimen as you except, I am not taking Avastin because it was not available when I began chemo. I have had nine treatments with four more to go. However, I have had to stop treatments for four weeks because of elevated liver enzymes. What is your dosage of oxaliplatin? Mine is 140mg. I get my treatments bimonthly. I have not had any significant side effects until this liver situation. I am Stage 3 with 3 out of 31 lymph node involvement. Yes, you will want everything that is usually cold at room temperature. I notice that even when I push a grocery cart that sometimes the cold handle will cause my fingers to tingle. That feeling usually goes away four or five days after treatment. You may also notice a strange feeling on your tongue or even the taste of food may change. Food tastes like you have sprinkled melted metal on it instead of salt! Ha! I started treatment in November. Feel free to ask me any question and hopefully, I may have an answer.
    Best wishes and Happy Easter!

    Kay

    Hiya Lisa--glad yu found us!Also glad yu decided to join in--I was a bit of a lurker too until I discovered some of these guys are as wacky as me.
    Actually I only got the nerve to come here when I discovered that Spongebob needed some help to keep these guys chuckling--he he!

    Hi also to Kay--don't think we have met?

    Oh--by the way Lisa--NEVER mention sugar on here as Emily just might go into her no-sugar diet routine--he he--errrr--hiya Emily!!!

    luv n huggs from kanga n Jen
  • scouty
    scouty Member Posts: 1,965 Member
    #5
    2bhealed said:

    Welcome scouty,

    So you are Stage 4? You will be hearing from our resident stellar survivor (and celeb) Stacy who is stage 4 kick butt survivor!

    As for me my "cocktail" consisted of organic carrot juice, major supplements in mega doses, and Chinese herbs. Oops, and organic coffee enemas. Happy to say that after 2 1/2 years I am still cancer free!

    The chatroom is a fun hang out too if you want to venture in there. They don't sacrifice virgins but are known to be pretty whacky.

    peace, emily the local granola alternative nut :-)

    Yes Emiliy I am stage 4. Bought some organic carrot and veggie juices, but it has to be refridgerated so I can't drink it until Tuesday or so. Guess I will have to learn how to make my own for my 5 days of room temp. stuff. I did venture to the chat room last night but can't type that fast with these chemo fingers. Anybody heard of drinking distilled water instead of tap and/or spring water. I have read so many things, it is hard to know which ones make sense unless I can learn the rationale behind it.

    This place is really cool. Thanks so much for replying
  • scouty
    scouty Member Posts: 1,965 Member
    #6
    Kanort said:

    Welcome Lisa,

    I am on the same regimen as you except, I am not taking Avastin because it was not available when I began chemo. I have had nine treatments with four more to go. However, I have had to stop treatments for four weeks because of elevated liver enzymes. What is your dosage of oxaliplatin? Mine is 140mg. I get my treatments bimonthly. I have not had any significant side effects until this liver situation. I am Stage 3 with 3 out of 31 lymph node involvement. Yes, you will want everything that is usually cold at room temperature. I notice that even when I push a grocery cart that sometimes the cold handle will cause my fingers to tingle. That feeling usually goes away four or five days after treatment. You may also notice a strange feeling on your tongue or even the taste of food may change. Food tastes like you have sprinkled melted metal on it instead of salt! Ha! I started treatment in November. Feel free to ask me any question and hopefully, I may have an answer.
    Best wishes and Happy Easter!

    Kay

    Kay,

    And happy easter to you too!!!! I was so nervous about my first chemo treatment side effects, I postponed my family easter celebration until next week. I don't remember my dosages for anything so I will take my new diary with me the next time.Thanks so much for the tongue stuff because I have noticed that and the food tastes a little too. I am on a bi-weekly plan. More to come once I start the BIG BOY, Avastin!!!!
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #7
    scouty said:

    Yes Emiliy I am stage 4. Bought some organic carrot and veggie juices, but it has to be refridgerated so I can't drink it until Tuesday or so. Guess I will have to learn how to make my own for my 5 days of room temp. stuff. I did venture to the chat room last night but can't type that fast with these chemo fingers. Anybody heard of drinking distilled water instead of tap and/or spring water. I have read so many things, it is hard to know which ones make sense unless I can learn the rationale behind it.

    This place is really cool. Thanks so much for replying

    Hi scouty,

    The best thing to do is buy a juicer. www.discountjuicers.com I have a Champion that I love.

    Fresh made juices have the live enzymes still (compared to bottled) and THAT is what is so important about juicing is getting the live enzymes. The vitamins and stuff is good too obviously but living foods is key to healing and curing.

    www.hacres.com
    www.curezone.com
    www.cancerdecisions.com


    Fabulous book too is Beating Cancer with Nutrition by Dr. Patrick Quillin

    Check it out. He explains what to take fro what cancer and which treatments. He is associated with a cancer treatment center. Highly recommended by a few semi-colons on this board.

    peace, emily
  • mikew42
    mikew42 Member Posts: 114 Member
    #8
    scouty, welcome aboard. I am also new to this board and am a little afraid to post, but have learned sooo much and have received tons of hope from this group. I was diagnosed in February with Stage 4 cc with 8 of 25 lymph nodes positive and two mets to the liver (one was removed during my colon surgery for a biopsy, the other we will get through chemo or surgery). I was devistated at first, but now have a lot of hope, thanks to all the support here. I started chemo three weeks ago, three weeks on one week off. I have Camptosar, Leucovorin, and Avastin. So far no side effects, but my chemo nurse said positive attitude is key!!

    Anyway, have a great Easter weekend. Keep us posted.

    mikew42
  • KrisS
    KrisS Member Posts: 229
    #9
    Welcome Lisa- Don't you love having that feeling of drinking Pop Rocks when drinking the cold stuff! I microwave my drinks for 10-15 sec., and sometimes use a straw. For me that helps.

    That is great that you've not gotten queasy. My oncologist sent me home with little samples of a variety of anti nausea drugs. I found I needed them on days 3 and 4 post chemo. With those things have been quite managable and have packed those up and have worked as well as gone on trips without any problems other than trying to squeeze in a nap or an extra long nights sleep those first 4-5 days. I had oxaliplatin/5-FU/Leucovorin a while ago and then started up again on oxaliplatin/Xeloda (the oral 5-FU like drug) 10 mth ago. I am still doing well on it. I had good CT results last Friday.

    I have not had Avastin, but my oncologist is angling to switch me to that. He wants to give me a break from oxaliplatin, since after 10 mths I am starting to get some loss of sensation in hands and feet despite having been on calcium/magnesium infusions to try to slow that down. The oncology pharmacist told me that Avastin is well tolerated.

    I did lose a significant amount of my taste, including that for sweets after about a month. Every time I had a further decline in taste, I'd cruise the grocery store, buying small amounts of anything that I thought I might be able to taste. For me veggies taste pretty much the same as ever, and tart stuff like grapefruit, cranberries still are very good (but watch out for aggravating mouth sores with that stuff). Although I am not nearly as good as Emily is, when ice cream starts to taste like cotton, it's no longer worth eating. Nothing like a chemically induced method of making me eat better! The stuff has not killed my appetite however. It still feels good to have a full stomach.

    Keep up the positive attitude!

    Best wishes,

    Kris
  • scouty
    scouty Member Posts: 1,965 Member
    #10
    KrisS said:

    Welcome Lisa- Don't you love having that feeling of drinking Pop Rocks when drinking the cold stuff! I microwave my drinks for 10-15 sec., and sometimes use a straw. For me that helps.

    That is great that you've not gotten queasy. My oncologist sent me home with little samples of a variety of anti nausea drugs. I found I needed them on days 3 and 4 post chemo. With those things have been quite managable and have packed those up and have worked as well as gone on trips without any problems other than trying to squeeze in a nap or an extra long nights sleep those first 4-5 days. I had oxaliplatin/5-FU/Leucovorin a while ago and then started up again on oxaliplatin/Xeloda (the oral 5-FU like drug) 10 mth ago. I am still doing well on it. I had good CT results last Friday.

    I have not had Avastin, but my oncologist is angling to switch me to that. He wants to give me a break from oxaliplatin, since after 10 mths I am starting to get some loss of sensation in hands and feet despite having been on calcium/magnesium infusions to try to slow that down. The oncology pharmacist told me that Avastin is well tolerated.

    I did lose a significant amount of my taste, including that for sweets after about a month. Every time I had a further decline in taste, I'd cruise the grocery store, buying small amounts of anything that I thought I might be able to taste. For me veggies taste pretty much the same as ever, and tart stuff like grapefruit, cranberries still are very good (but watch out for aggravating mouth sores with that stuff). Although I am not nearly as good as Emily is, when ice cream starts to taste like cotton, it's no longer worth eating. Nothing like a chemically induced method of making me eat better! The stuff has not killed my appetite however. It still feels good to have a full stomach.

    Keep up the positive attitude!

    Best wishes,

    Kris

    Y'all make it easier to have a positive attitude and I was blessed to be born as one of those glass is half full types.

    Do you microwave milk too? I will try that and see for myself. I had a short bout of nausea yesterday when the nurse unhooked my 46 hr 5-FU drip, but that passed when I drank some water. For someone that gags cleaning out the litter box, I was very surprised I did not get any sicker and hope it stays that way. I am packing in water like a camel, but figure that can't do anything but good. These little varmints in my mouth that keep knitting sweaters on my teeth need to find another job. I miss my sweet tooth and hope it comes back like yours did. I miss my chocolate ice cream made at my local creamery (sorry Emily). I did order the Quillan book so maybe there is hope for me.
  • spongebob
    spongebob Member Posts: 2,565 Member
    #11
    Ahoy, scouty!

    Welcome to the semi-colons! Sounds like you have a good attitude and there are tons of folks here to vent to or chat with.

    Remember this as you drink room-tem things... The Irish swear by room temp Guiness Ale!!

    Cheers

    - SpongeBob
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #12
    Hi Lisa!

    I would have posted sooner, but the Easter bunny had a lot to get done this past weekend!

    I was stage 4, and was diagnosed Oct 2001. Just had a CT scan to reinforce that I am cancer-free. Keep your positive attitude...sounds like you have a real handle on things...GOOD FOR YOU!! We all understand what you're going through, and we are all here to cheer you on every step of the way!

    Please keep us updated on your PROGRESS, as I'm sure you'll have lots of it!

    Stacy

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