GiGi's Anal Cancer Story - "I believe"

24

Comments

  • mp327
    mp327 Member Posts: 4,440 Member

    Day 2
    Well I learned some things today. Eat when your hungry. I waited until after my shower this morning but in 15 min I was nauseated and light headed. I ate but it took me til lunch to recover . 2nd radiation today. The radiologist added a wet gauze on my lower rump to help with the treatment. I plan on asking more about this tomorrow because the tech said it may cause more burn in that area. This afternoon I've developed a skin rash on my face, neck and chest. I called my oncologist and he said its likely a reaction to the 5fu. Taking Benadryl tonight which has helped but not cleared up totally. I will see my onc in the morning to have it checked out.
    Port comment: I was told they are phasing out the numbing spray. Was told it was causing issues but wasn't told what. I'll research that more of course.
    Meals: I'm eating good..normal meals. Using Biotene daily for mouth. I had bad dry mouth yesterday..today not so much. Drinking lots of water too.
    Sleep: I'm very restless. Lots on my mind I suppose. The black pouch of chemo and IV lines laying all over me doesn't help. Maybe tonight will be better with the Benadryl.

    Thanks everyone for your words and wisdom.

    Linda..we will travel this road together it appears. I'm praying for you.

    GiGi--
    Try this for tomorrow morning if you can. Make yourself some plain jello tonight (or buy the pre-made kind). As soon as you get up in the morning, eat some jello. It will help with any early morning nausea you might have, plus it puts some additional fluids into you. I believe that routine kept me from having serious issues with nausea. I always had a big bowl of it in the frig, especially during chemo weeks, and would head from bed straight to the frig first thing in the morning and eat some right out of the big bowl. I think just having something on your stomach early in the morning is key to keeping away the queasiness.

    No problem about the numbing spray no longer being available if you can get a script for the Lidocaine cream, which I mentioned previously. Rubbing a little of it over the port area about an hour before they stick you will numb it up just fine.

    I hope you can continue with the 5FU. Perhaps if you can continue on the Benadryl, you can make it to the end of the week without any major problems. Keep us posted.
  • AZANNIE
    AZANNIE Member Posts: 445 Member

    Lidocaine
    I'll ask for a prescription for that because they don't use the numbing spray at my onc office any longer. What should I expect the removal Friday to feel like? Any thoughts?
    Thanks mp

    GiGi
    The port needle removal isn't painful. If I remember I think I was told to take a deep breath or maybe that was when they put the needle into the port. In fact it's a relief to be unhooked from the fanny pack.

    Ann
  • Marynb
    Marynb Member Posts: 1,118
    mp327 said:

    GiGi--
    Try this for tomorrow morning if you can. Make yourself some plain jello tonight (or buy the pre-made kind). As soon as you get up in the morning, eat some jello. It will help with any early morning nausea you might have, plus it puts some additional fluids into you. I believe that routine kept me from having serious issues with nausea. I always had a big bowl of it in the frig, especially during chemo weeks, and would head from bed straight to the frig first thing in the morning and eat some right out of the big bowl. I think just having something on your stomach early in the morning is key to keeping away the queasiness.

    No problem about the numbing spray no longer being available if you can get a script for the Lidocaine cream, which I mentioned previously. Rubbing a little of it over the port area about an hour before they stick you will numb it up just fine.

    I hope you can continue with the 5FU. Perhaps if you can continue on the Benadryl, you can make it to the end of the week without any major problems. Keep us posted.

    Eating in the morning
    It really is a good idea to eat something first thing in the morning. For me, organic cinnamon toast, dry was the best thing. I avoided all chemicals and treated mornings the same way I did when I had morning sickness in pregancy. Whatever works to settle your stomach first thing in the morning is a great idea!

    Hang in there!
  • geneviasue
    geneviasue Member Posts: 89
    sephie said:

    port coming out????
    is the port coming out or just the chemo bag being unhooked. if this is your first round, they keep the port (or picc line) in for the last round of chemo... good luck ... you can do it.... hugs sephie

    Sephie
    I was just unhooked. It's still there and thank you for your support.
  • geneviasue
    geneviasue Member Posts: 89
    mp327 said:

    GiGi--
    Try this for tomorrow morning if you can. Make yourself some plain jello tonight (or buy the pre-made kind). As soon as you get up in the morning, eat some jello. It will help with any early morning nausea you might have, plus it puts some additional fluids into you. I believe that routine kept me from having serious issues with nausea. I always had a big bowl of it in the frig, especially during chemo weeks, and would head from bed straight to the frig first thing in the morning and eat some right out of the big bowl. I think just having something on your stomach early in the morning is key to keeping away the queasiness.

    No problem about the numbing spray no longer being available if you can get a script for the Lidocaine cream, which I mentioned previously. Rubbing a little of it over the port area about an hour before they stick you will numb it up just fine.

    I hope you can continue with the 5FU. Perhaps if you can continue on the Benadryl, you can make it to the end of the week without any major problems. Keep us posted.

    MP I made it!!
    Hey MP,

    I made it through the full week with the 5fu. The Benadryl kept me asleep most of the time and I've been totally exhausted. I know everyone understands the feeling. I love your jello idea. I'm going to get some tomorrow and keep it ready.
  • geneviasue
    geneviasue Member Posts: 89
    Marynb said:

    Eating in the morning
    It really is a good idea to eat something first thing in the morning. For me, organic cinnamon toast, dry was the best thing. I avoided all chemicals and treated mornings the same way I did when I had morning sickness in pregancy. Whatever works to settle your stomach first thing in the morning is a great idea!

    Hang in there!

    Mary..
    I understand what you are saying. I woke up this morning craving crackers..just a simple cracker. I put peanut butter on a few and that was breakfast. It worked..I was satisfied.

    Thank you so much for thinking of me.
  • geneviasue
    geneviasue Member Posts: 89
    Day 3, 4, 5
    My first week of chemo..DONE!! I developed a skin rash with the 5fu but stayed on Benadryl every 4 hours and I made it.
    I was constipated all week. Was taking stool softeners and wasn't in any pain so I didn't do anything else. Things started happening last night and now I'm regular.
    5fu pump removed today. Disconnect from port was nothing..didn't feel a thing.
    Did get a bag of saline to help hydrate me. That helped I'm sure.
    I haven't had much of an appetite and didn't eat a lot. I think that may have added to my nausea though so I plan on finding foods for quick consumption. Like jello, toast or crackers.
    Lots of rest with the drowsiness of Benadryl. I don't see how anyone could work doing this. I'm amazed at those who have.

    God bless each of you. I'm praying for a quiet weekend in Tennessee. May you have a great weekend too.
  • law522
    law522 Member Posts: 37

    MP I made it!!
    Hey MP,

    I made it through the full week with the 5fu. The Benadryl kept me asleep most of the time and I've been totally exhausted. I know everyone understands the feeling. I love your jello idea. I'm going to get some tomorrow and keep it ready.

    YIPPEE I have had you in my prayers all week
    you made it through the 1st week!

    XO Linda
  • mp327
    mp327 Member Posts: 4,440 Member

    MP I made it!!
    Hey MP,

    I made it through the full week with the 5fu. The Benadryl kept me asleep most of the time and I've been totally exhausted. I know everyone understands the feeling. I love your jello idea. I'm going to get some tomorrow and keep it ready.

    Yay!
    I'm so glad you have week one behind you! Have a restful weekend and enjoy the jello!
  • mp327
    mp327 Member Posts: 4,440 Member

    Day 3, 4, 5
    My first week of chemo..DONE!! I developed a skin rash with the 5fu but stayed on Benadryl every 4 hours and I made it.
    I was constipated all week. Was taking stool softeners and wasn't in any pain so I didn't do anything else. Things started happening last night and now I'm regular.
    5fu pump removed today. Disconnect from port was nothing..didn't feel a thing.
    Did get a bag of saline to help hydrate me. That helped I'm sure.
    I haven't had much of an appetite and didn't eat a lot. I think that may have added to my nausea though so I plan on finding foods for quick consumption. Like jello, toast or crackers.
    Lots of rest with the drowsiness of Benadryl. I don't see how anyone could work doing this. I'm amazed at those who have.

    God bless each of you. I'm praying for a quiet weekend in Tennessee. May you have a great weekend too.

    You will have a couple of days off from treatment to rest up and get ready for next week. Try to eat when you can, especially some protein. Have you tried any of the protein drinks? They can vary in taste, but some are very good. Also, Instant Breakfast made with whole milk is good and you can even add powdered milk to it to make it even more protein packed. Please let us know how your weekend goes.
  • Marynb
    Marynb Member Posts: 1,118

    Day 3, 4, 5
    My first week of chemo..DONE!! I developed a skin rash with the 5fu but stayed on Benadryl every 4 hours and I made it.
    I was constipated all week. Was taking stool softeners and wasn't in any pain so I didn't do anything else. Things started happening last night and now I'm regular.
    5fu pump removed today. Disconnect from port was nothing..didn't feel a thing.
    Did get a bag of saline to help hydrate me. That helped I'm sure.
    I haven't had much of an appetite and didn't eat a lot. I think that may have added to my nausea though so I plan on finding foods for quick consumption. Like jello, toast or crackers.
    Lots of rest with the drowsiness of Benadryl. I don't see how anyone could work doing this. I'm amazed at those who have.

    God bless each of you. I'm praying for a quiet weekend in Tennessee. May you have a great weekend too.

    Yay! One week down!
    Gigi,

    So glad you are getting through this. Soon, your cancer will be a thing of the past! I am praying for you and just know that all will be well! All will be well, very soon!

    Keep those saltines and peanut butter handy and don't forget to be drinking lots and of water. I also drank ginger ale a lot. Keep a bottle of water with youat all times!

    I am glad you are getting lots of rest. Stay positive!

    Hugs.
    Mary
  • geneviasue
    geneviasue Member Posts: 89
    Treatment Days 5,6,7,8 Update
    I'm doing really good. No hair loss and my counts were normal on Monday, Nov 5, 2012 (day 7 after MIT and 96 hour 5fU previous week) which is good. Will meet with dr each week to keep an eye on them during the radiation treatments. My onc and rad are across the hall from each other which is awesome for me.
    I've felt almost normal the days 7,8. The first weekend I had to take 1 Imodium pill and 1/2 a nausea pill once each day. I slept alot too..just from being so tired. I have some tingling in my fingers..nothing major..dr said that is a chemo side effect and should go away. Having some legs trembling spells but dr said to push through those and they too will go away. The skin rash cleared up 3 days after the 5fu was removed.

    No radiation effects yet. I found some lotion online, Audrasina which I should have tomorrow and supposedly it is designed specifically for radiation (thermal) therapy patients. I'll update later how it works. I've seen some onc/rad offices online that recommend it. If you have any knowledge of it, please share.

    Thanks for your continued prayers and I'll update likely at end of week or over weekend.

    GiGi
  • mp327
    mp327 Member Posts: 4,440 Member

    Treatment Days 5,6,7,8 Update
    I'm doing really good. No hair loss and my counts were normal on Monday, Nov 5, 2012 (day 7 after MIT and 96 hour 5fU previous week) which is good. Will meet with dr each week to keep an eye on them during the radiation treatments. My onc and rad are across the hall from each other which is awesome for me.
    I've felt almost normal the days 7,8. The first weekend I had to take 1 Imodium pill and 1/2 a nausea pill once each day. I slept alot too..just from being so tired. I have some tingling in my fingers..nothing major..dr said that is a chemo side effect and should go away. Having some legs trembling spells but dr said to push through those and they too will go away. The skin rash cleared up 3 days after the 5fu was removed.

    No radiation effects yet. I found some lotion online, Audrasina which I should have tomorrow and supposedly it is designed specifically for radiation (thermal) therapy patients. I'll update later how it works. I've seen some onc/rad offices online that recommend it. If you have any knowledge of it, please share.

    Thanks for your continued prayers and I'll update likely at end of week or over weekend.

    GiGi

    Hi GiGi!
    I'm so glad you are doing well! It sounds like you're in very good hands and handling the side effects just fine. I hope you continue to have a smooth journey. Hugs!
  • geneviasue
    geneviasue Member Posts: 89
    Day 9-16 Update
    These days have been pretty much normal except for minor diarrhea and some minor nausea. I started noticing some anus discomfort around day 12. It's kind of a raw feeling and similar to that you would feel after a day of diarrhea and wiping. No burning though..not like you would think when you hear burn anyway. Some anus itching which was very intense but has let up some over the weekend. This is personal but if it helps someone then so be it. After a couple of days of feeling raw, I stopped using toilet paper and started doing this. I have a sprayer nozzle on my shower/bath combo so everytime I "go", I simply sit on the side of my tub and use my sprayer to clean myself. The water is refreshing and I've noticed a significant improvement. I got the idea from others on this site that did something similar. My own homemade bidet I suppose.

    Take care everyone and I'll update after this week's treatment which is week 4.
  • Marynb
    Marynb Member Posts: 1,118

    Day 9-16 Update
    These days have been pretty much normal except for minor diarrhea and some minor nausea. I started noticing some anus discomfort around day 12. It's kind of a raw feeling and similar to that you would feel after a day of diarrhea and wiping. No burning though..not like you would think when you hear burn anyway. Some anus itching which was very intense but has let up some over the weekend. This is personal but if it helps someone then so be it. After a couple of days of feeling raw, I stopped using toilet paper and started doing this. I have a sprayer nozzle on my shower/bath combo so everytime I "go", I simply sit on the side of my tub and use my sprayer to clean myself. The water is refreshing and I've noticed a significant improvement. I got the idea from others on this site that did something similar. My own homemade bidet I suppose.

    Take care everyone and I'll update after this week's treatment which is week 4.

    Gigi
    Hi. I am so glad that you are doing well. I used the handheld too! I was told from the start not to use toilet paper, so I didn't. I used baby wipes for sensitive skin.....alcohol free. They worked quite well. You might want to give them a try. I used the handheld a few times a day for pain relief and it worked quite well.

    You remain in my prayers. Keep the faith.
  • geneviasue
    geneviasue Member Posts: 89
    Marynb said:

    Gigi
    Hi. I am so glad that you are doing well. I used the handheld too! I was told from the start not to use toilet paper, so I didn't. I used baby wipes for sensitive skin.....alcohol free. They worked quite well. You might want to give them a try. I used the handheld a few times a day for pain relief and it worked quite well.

    You remain in my prayers. Keep the faith.

    Hey Mary
    I was warned about tp too but I didn't think much of it until the rawness started. Then, I understood..lol. whew!!
    I have some wipes, alcohol free which I tried but I really like the water..so refreshing!! I warned my husband that our water bill will likely go up. lol

    And thank you for the prayers. It's amazing how I feel the Lord's presence and healing hand upon me right when I need it. I'm blessed upon measure and forever grateful for it.

    Talk to you soon.

    Gigi
  • Jo Joy
    Jo Joy Member Posts: 40

    Day 9-16 Update
    These days have been pretty much normal except for minor diarrhea and some minor nausea. I started noticing some anus discomfort around day 12. It's kind of a raw feeling and similar to that you would feel after a day of diarrhea and wiping. No burning though..not like you would think when you hear burn anyway. Some anus itching which was very intense but has let up some over the weekend. This is personal but if it helps someone then so be it. After a couple of days of feeling raw, I stopped using toilet paper and started doing this. I have a sprayer nozzle on my shower/bath combo so everytime I "go", I simply sit on the side of my tub and use my sprayer to clean myself. The water is refreshing and I've noticed a significant improvement. I got the idea from others on this site that did something similar. My own homemade bidet I suppose.

    Take care everyone and I'll update after this week's treatment which is week 4.

    Be blessed this week and giving thanks for you on this journey
    Gigi,

    Thanks for the updates. It is comforting and awesome news to hear that you are well! I am thankful that God has given us each other to walk through this together at the same time. It is a short week for us due to Thanksgiving. I am scheduled for rad early on Thanksgiving day and get Friday off. I am taking my daughter with me that day, since she is coming home for Thanksgiving, so she can see where it is I go everyday for treatment, and what it is like so she can feel like she is involved even though she will be 450 miles away for most of it. Talk to you again after Thanksgiving. Have a blessed week my friend.
  • law522
    law522 Member Posts: 37
    Gigi THANK YOU
    Thank You so much for your post, I have been all over this board and the posts since finding this board a few days after i was diagnosed--the posts and people here have kept my sanity as I went from a active healthy women to a Cancer patient--I still am in shock! AND I am still active and healthy!!!!
    Your story is similar to mine except I just thought I had a hemmy and no other side affects

    so far they are leaning toward the same treatment for me as you have just started
    May God Bless you through this and
    KICK ****, we can do it!!!!
    XO Linda
  • law522
    law522 Member Posts: 37

    Day 1
    Day 1 has been just as doctor described. Arrived with labs first, small talk, pick a chair and sit down. Then the power access needle for the first time. Not fun at all but was quick and passed instantly. Got two meds first, Amend and something else. MIT pushed through then saline. The entire process was about 2 1/2 hours. 5fu strapped around me and off to radiation office across the hall. In quick, lined up with laser precision and 8 minutes of click and rotate. I felt nothing. Then I got my tattoo's. Yes, the permanent kind. 3 small blue dots to line me up with before each treatment. I'm tired but feeling ok overall. No sickness. Dry mouth already using Biotene gel lots of water. That helps. Thanks again for all your prayers
    GiGi

    Hi Gigi XO

    I wish you well and i know that GOD will hold your hand through this and SO WILL I!
    PLEASE keep me up to date on your progress and know that you are in my thoughts and prayers

    WE CAN DO THIS!!!!
    GO GET THIS NASTY CANCER!!!!
    and a quote I heard on here "weeks for years"
    XO Linda
  • geneviasue
    geneviasue Member Posts: 89
    Jo Joy said:

    Be blessed this week and giving thanks for you on this journey
    Gigi,

    Thanks for the updates. It is comforting and awesome news to hear that you are well! I am thankful that God has given us each other to walk through this together at the same time. It is a short week for us due to Thanksgiving. I am scheduled for rad early on Thanksgiving day and get Friday off. I am taking my daughter with me that day, since she is coming home for Thanksgiving, so she can see where it is I go everyday for treatment, and what it is like so she can feel like she is involved even though she will be 450 miles away for most of it. Talk to you again after Thanksgiving. Have a blessed week my friend.

    Joy, We are blessed!!
    I'm glad we met here and glad, like you, that we are traveling together. I think of you often and think of myself like a big sister, being a just a step ahead of you, guiding the way.

    It's funny you mention taking your daughter to see the facility. I did the same last week with my husband and today with my dad. Both kept asking "what is radiation like?" and "does it hurt?". Its important to me that the people I love feel reassured too. I think my dad thought it was a little weird that I have little blue tattoos to mark my alignment though. I'm still his little girl even at 45 and I like it that way. :)

    Oh, my counts were up today!! WBC went from 3700 last week to 5400 this week. Red from 147 to 167. My doctor asks me what I had done to get such a boost. I answered "We prayed!!" He agreed that faith is the strongest medicine he knows of. And, I agree!!

    God bless you Joy!! Happy Thanksgiving to everyone!!

    Much love,

    GiGi