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  • jcruz
    jcruz Member Posts: 379 Member
    #42
    Bill158 said:

    mp and liz...

    mp and liz, thanks for asking--I'm doing ok, and at work tonight, working tonight and the next two nights.   I have my chemo pump in a fanny pack tonight, since it won't run out until tomorrow sometime--it was started on Tuesday because of the holiday.  My white blood cell counts have all been good so far, and the only side effects from the chemo is the metallic taste in my mouth, a little nausea, and my mouth is starting to feel sensitive again, but I have magic mouthwash if it gets real sore again.  I've had 24 radiation treatments so far and I think I have just 6 more to go, but maybe 7 due the holiday.  They started the "coned down" rad treatments last week, but I am more burned and peeling more than ever--the crease where my thigh meets the pelvis has big pieces of skin peeling off, and its pretty sore and red.  Ibuprofen does ok for that pain while I am at work, but I have used about 8 Percocet in the last 10 days for bad days usually in the morning. 

    Bowel movements are so painful--never have had pain like that before.  I have just started to have diarrhea intermittently and can't tell if its related to anything I am eating, but I did find out that beans cause almost immediate cramping, massive amounts of gas, so I have avoided them--I like having beans and rice so I miss that. 

    I can't wait to get rid of this PICC line, and my onc said I can take it out this weekend after my chemo pump is done. 

    My energy levels have been good.  I have an occasional lazy day and the couch calls me to lay down and take naps, so I have been listening to my body and resting when I need to.  I planted my patio garden and my tomatoes, kale, peppers, peas are all doing good--have them on a drip system so they get watered when I'm out of town. 

    I am very much looking forward to finishing up my treatments--my girlfriend and I are going to Puerto Rico that we have had planned since January (have a medical convention/education conference there), so I am hoping I will be all healed up by then. 

    just a little caution

    I just want to echo sephie's caution about removing the picc line as soon as the last chemo drips in.  I needed 3x a week hydration during most of my treatment and continued to need it for weeks after the last chemo.  I remember both of my oncologists saying the first 2 weeks after the end of treatment would be the hardest and they were so right.  I had one week of radiation left after the 2nd round of chemo and the week following that last radiation I had an infection, a fever, disastrously low blood counts and needed a transfusion, 3 neupogen shots and 4 hydration sessions in the infusion center.  I was near needing to be hospitalized but fortunately the care I received in the infusion center kept me from being admitted.  I continued with hydration for another 2 weeks and finally on my birthday almost a month after that last chemo I felt like I didn't need anymore.  I had a port rather than a picc line which definitely made the whole thing easier for me.  

    I am in awe that you have been able to continue working.  I wish you well as you approach the end and begin the recovery phase of this arduous journey.  

  • Bill158
    Bill158 Member Posts: 19
    #43
    PIC line

    I appreciate everyone's words of encouragement, and also caution about the PIC line.  I still have it in since I felt kinda rough last night--was nauseated, and i think I let myself get a little dry.  Feeling better tonight except for feeling like I am sitting on a BBQ grill.  Might just leave it in for another day or two to see how things go.  I do have another question though--they told me coning down the treatments would lessen the symptoms, and side effects, and I assumed the burns, but this weekend my crotch area, and man parts were red and burning, and a little swolen--normally the genitals have been getting burns on the back part, but this was all over this weekend.  It didn't look like an infection, and the genitals aren't so sensitive, and red now, but still have a lot of peeling skin between my legs---is this normal or could the treatment fields have been off, or do they just open it up at the end to make sure they get everything? 

  • Lorikat
    Lorikat Member Posts: 681 Member
    #44
    Bill158 said:

    PIC line

    I appreciate everyone's words of encouragement, and also caution about the PIC line.  I still have it in since I felt kinda rough last night--was nauseated, and i think I let myself get a little dry.  Feeling better tonight except for feeling like I am sitting on a BBQ grill.  Might just leave it in for another day or two to see how things go.  I do have another question though--they told me coning down the treatments would lessen the symptoms, and side effects, and I assumed the burns, but this weekend my crotch area, and man parts were red and burning, and a little swolen--normally the genitals have been getting burns on the back part, but this was all over this weekend.  It didn't look like an infection, and the genitals aren't so sensitive, and red now, but still have a lot of peeling skin between my legs---is this normal or could the treatment fields have been off, or do they just open it up at the end to make sure they get everything? 

    Ditto what Martha said....

    Ditto what Martha said....  The THREE weeks after treatment were the very worst for me.  I wore nothing but dresses and kept a fan on my nether parts when ever able to!  

     

  • mp327
    mp327 Member Posts: 4,440 Member
    #45
    Bill158 said:

    PIC line

    I appreciate everyone's words of encouragement, and also caution about the PIC line.  I still have it in since I felt kinda rough last night--was nauseated, and i think I let myself get a little dry.  Feeling better tonight except for feeling like I am sitting on a BBQ grill.  Might just leave it in for another day or two to see how things go.  I do have another question though--they told me coning down the treatments would lessen the symptoms, and side effects, and I assumed the burns, but this weekend my crotch area, and man parts were red and burning, and a little swolen--normally the genitals have been getting burns on the back part, but this was all over this weekend.  It didn't look like an infection, and the genitals aren't so sensitive, and red now, but still have a lot of peeling skin between my legs---is this normal or could the treatment fields have been off, or do they just open it up at the end to make sure they get everything? 

    Bill

    Based on my own experience, I seriously doubt that coning down will lessen symptoms/side effects.  I was the most miserable during the last week of treatment, my coning down week, and for the week after treatment ended.  I believe this is because the effects of the radiation are cumulative and the radiation continues to work for some time after that last zap.  My skin peeled quite badly between my legs too.  I am sure your treatment fields were set correctly, as your issues sound typical for this treatment.  The usual protocol is not to open it up at the end, rather it's to cone down and target the tumor area only.

    This is a rough time in the treatment, but hang in there.  I felt markedly better 10 days after my treatment ended.  I hope that will be the case for you.

  • Bill158
    Bill158 Member Posts: 19
    #46
    Lorikat said:

    Ditto what Martha said....

    Ditto what Martha said....  The THREE weeks after treatment were the very worst for me.  I wore nothing but dresses and kept a fan on my nether parts when ever able to!  

     

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

  • Marynb
    Marynb Member Posts: 1,118
    #47
    Bill158 said:

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

    Bill
    I am sorry to hear of your complications and I hope and pray you feel better very soon. I am glad you have been admitted so you can get the care that you need. My WBC's got very low twice and I was given neupogen shots. Those shots made me feel pretty lousey, but the counts came back up in a few days. From reading posts here, it appears that men may have a greater chance for severe burns. It must be very painful. I am sorry. The last two weeks are no day at the beach, to say the least! I am praying that you heal very quickly! Hang in there! Sending you hugs and prayers!
  • lizdeli
    lizdeli Member Posts: 569 Member
    #48
    Marynb said:

    Bill
    I am sorry to hear of your complications and I hope and pray you feel better very soon. I am glad you have been admitted so you can get the care that you need. My WBC's got very low twice and I was given neupogen shots. Those shots made me feel pretty lousey, but the counts came back up in a few days. From reading posts here, it appears that men may have a greater chance for severe burns. It must be very painful. I am sorry. The last two weeks are no day at the beach, to say the least! I am praying that you heal very quickly! Hang in there! Sending you hugs and prayers!

    Bill

    I'm sorry you are going through all this as you approach the home stretch.  I did have burnt skin with 2nd and some 3rd degree burns.  It started to heal about 3 weeks post treatment. I'm glad you are being cared for and I pray that they will get it all under control so that you can begin the healing process. 

    You are in my thoughts.

    Liz

  • pializ
    pializ Member Posts: 508 Member
    #49
    lizdeli said:

    Bill

    I'm sorry you are going through all this as you approach the home stretch.  I did have burnt skin with 2nd and some 3rd degree burns.  It started to heal about 3 weeks post treatment. I'm glad you are being cared for and I pray that they will get it all under control so that you can begin the healing process. 

    You are in my thoughts.

    Liz

    Bill

    Sorry you are in so much pain. You have done amazingly well so with the care you are noe receiving, your healing process will soon be underway. Ride it out and take any pain relief offered, & if it's not, ask for it. Keep us informed of your progress. Liz

  • mp327
    mp327 Member Posts: 4,440 Member
    #50
    Bill158 said:

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

    Bill

    I am so sorry to hear this, however, I'm not really surprised.  The last week is hell, at least it was for me, and I think for many others.  I had severe burns too, accompanied by a low WBC, which required Neupogen injections that made me feel like crap for a couple of days afterwards.  They did, however, boost my count enough to continue with radiation.  It sounds like you are very miserable and it does indeed suck.  The painful BM's--I remember well how I would begin to cry as I ran to the bathroom to have one.  I didn't want to eat because I knew that what went in would eventually have to come out.  Many of us know what you are going through right now, but the good news is we are all still here, recovered from the acute stage of side effects.  You will recover too once you get past this.  Hang in there and update us when you can.  You will certainly be in my thoughts. 

  • Barb5454
    Barb5454 Member Posts: 125
    #51
    Bill158 said:

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

    Bill158

    Hi Bill...I'm so sorry you have to endure this.  Im 5 months post treatment and I remember they had to stop my treatments because I had 3rd degree burns and horrible vaginitis!! My wbc was the same as yours. I had 10 treatments left and I finished them but I had to wait 2 weeks. My WBC came back up after about a week. Hang in there!

  • Lorikat
    Lorikat Member Posts: 681 Member
    #52
    Bill158 said:

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

    I finished my txs but ended

    I finished my txs but ended up in hospital with 2nd and 3rd degree burns, pnuemonia, neutropenic and in isolation for 9 dayS.  Two blood transfusions and pooping razor blades.  BUTT(!). I am 19 months NED ad except for some side effects doing well!  Just hang in there...

  • sephie
    sephie Member Posts: 650 Member
    #53
    Bill158 said:

    another update--big changes

    Well a lot of things have changed since last week.  My radiation burns got so bad that the doc stopped them on wednesday--had 3 more to go.  He said i have 2nd and 3rd degree burns.  He gave me some mepilex to use on the burn areas.  Anyone else have experience with this?

    So tonight I am in the hospital after i developed chills and fever this morning--my WBC count is low at 1.8, and i may have some pneumonia, and infected burns, so I guess I will be here for a couple days.  Having a lot of pain in the burned areas, and bowel movements and so painful now I am scared to have one.  This sucks.

    so sorry

    ok bill,  here it is::: after i pulled that picc line and then got placed in ER at MDA,   they gave me all sorts of stuff thru IV but i did get neupigen shots to raise the WBC....and octriotide shots in stomach  for diarrhea.... i had a  "something" resisitant enterrococcal bacterial infection that they treated me far and burns so bad that my skin was almost black where my legs attach to trunk ...skin peeling off of my butt... MDA did not stop and still rolled me into radiation for my final 3 treatments..... i made it but barely.... was so sick that i do not remember everything....but here i am....... hope you feel better quickly  ..... sephie

  • Bill158
    Bill158 Member Posts: 19
    #54
    sephie said:

    so sorry

    ok bill,  here it is::: after i pulled that picc line and then got placed in ER at MDA,   they gave me all sorts of stuff thru IV but i did get neupigen shots to raise the WBC....and octriotide shots in stomach  for diarrhea.... i had a  "something" resisitant enterrococcal bacterial infection that they treated me far and burns so bad that my skin was almost black where my legs attach to trunk ...skin peeling off of my butt... MDA did not stop and still rolled me into radiation for my final 3 treatments..... i made it but barely.... was so sick that i do not remember everything....but here i am....... hope you feel better quickly  ..... sephie

    Thanks everyone,

    Thanks to everyone for your comments, and get well wishes.  The hospital stay kicked my ****--was in for two days, and couldn't wait to get out of there--can't imagine 9 days in the hospital.  My white count came up quickly, but i gained 15 pounds from fluids in the hospital, and slept off and on for the next 2 days at home.  I resumed rad treatments last thursday, and have one more to go tomorrow--woo hoo!  Only had one shift last weekend, and missed that one since I was in the hospital, and tonight is my 3rd shift this weekend--good thing it hasn't been too busy, cuz I am still kinda draggin', but feeling better each day, and today was back at the weight i was before i went in the hospital.   My burns are healing up nicely, and I can actually walk almost normal now, and even bend over to pick things up!  I'm so glad treatment is nearly over, and I appreciate everyone's kindness here.

    bill

  • mp327
    mp327 Member Posts: 4,440 Member
    #55
    Bill158 said:

    Thanks everyone,

    Thanks to everyone for your comments, and get well wishes.  The hospital stay kicked my ****--was in for two days, and couldn't wait to get out of there--can't imagine 9 days in the hospital.  My white count came up quickly, but i gained 15 pounds from fluids in the hospital, and slept off and on for the next 2 days at home.  I resumed rad treatments last thursday, and have one more to go tomorrow--woo hoo!  Only had one shift last weekend, and missed that one since I was in the hospital, and tonight is my 3rd shift this weekend--good thing it hasn't been too busy, cuz I am still kinda draggin', but feeling better each day, and today was back at the weight i was before i went in the hospital.   My burns are healing up nicely, and I can actually walk almost normal now, and even bend over to pick things up!  I'm so glad treatment is nearly over, and I appreciate everyone's kindness here.

    bill

    Hi Bill!

    Your post is a good way to start a Monday morning--much better news to hear than your last.  I'm glad you are recovering and once you get through today and that last rad tx, you will be on your way to complete recovery!  It will happen fairly quickly, at least that was my experience and I hope for you too.  It sounds like you are past the worst now, so just keep moving forward.  We are all behind you, pushing you across that finish line!  Please keep us posted on your recovery. 

  • Marynb
    Marynb Member Posts: 1,118
    #56
    Bill158 said:

    Thanks everyone,

    Thanks to everyone for your comments, and get well wishes.  The hospital stay kicked my ****--was in for two days, and couldn't wait to get out of there--can't imagine 9 days in the hospital.  My white count came up quickly, but i gained 15 pounds from fluids in the hospital, and slept off and on for the next 2 days at home.  I resumed rad treatments last thursday, and have one more to go tomorrow--woo hoo!  Only had one shift last weekend, and missed that one since I was in the hospital, and tonight is my 3rd shift this weekend--good thing it hasn't been too busy, cuz I am still kinda draggin', but feeling better each day, and today was back at the weight i was before i went in the hospital.   My burns are healing up nicely, and I can actually walk almost normal now, and even bend over to pick things up!  I'm so glad treatment is nearly over, and I appreciate everyone's kindness here.

    bill

    Bill
    That is great news! You will feel so great having cancer in your past! Hang in there!
  • mp327
    mp327 Member Posts: 4,440 Member
    #57
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  • Bill158
    Bill158 Member Posts: 19
    #58
    mp327 said:

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    Just got back from hell

    Gary Allan has a song called "I just got back from hell", and that's how i feel.   I feel like I was dragged through hell, with my **** on fire.  Today I felt so good it seems like I had a bad dream.  My burns are all closed up, and the last of the scabs came off today, and I have new pink skin down yonder, that still is a little tender, but everything seems to be working ok.  I am back to working regular shifts during the week and weekends, and tonight is the 3rd of four shifts, and its been pretty busy, but I don't feel tired or fatigued like I did after getting out of the hospital.  It's amazing how fast evrything heals up and you start feeling like a real person.  Still feels like I'm pooping glass or razor blades, so I was wondering how long that lasts.  My rad onc is going to see me end of July for a DRE, and maybe another PET scan at some time.  My regular onc is going to get me set up for a sigmoidoscopy also but I forgot if she said 4 weeks or months.  I just feel so good now I'm not thinking about that too much.  After tomorrow night I am off for 10 days, and headed to Puerto Rico next Tuesday and I can't wait. 

    I was thinking today how nice it would be to ride my mountain bike, and then I thought about celebrating and buying a new 29 incher, with hydraulic brakes and.....

     

    I guess I would say to everyone that is just starting out, you can do this, and there is a light at the end, and its doable

  • mp327
    mp327 Member Posts: 4,440 Member
    #59
    Bill158 said:

    Just got back from hell

    Gary Allan has a song called "I just got back from hell", and that's how i feel.   I feel like I was dragged through hell, with my **** on fire.  Today I felt so good it seems like I had a bad dream.  My burns are all closed up, and the last of the scabs came off today, and I have new pink skin down yonder, that still is a little tender, but everything seems to be working ok.  I am back to working regular shifts during the week and weekends, and tonight is the 3rd of four shifts, and its been pretty busy, but I don't feel tired or fatigued like I did after getting out of the hospital.  It's amazing how fast evrything heals up and you start feeling like a real person.  Still feels like I'm pooping glass or razor blades, so I was wondering how long that lasts.  My rad onc is going to see me end of July for a DRE, and maybe another PET scan at some time.  My regular onc is going to get me set up for a sigmoidoscopy also but I forgot if she said 4 weeks or months.  I just feel so good now I'm not thinking about that too much.  After tomorrow night I am off for 10 days, and headed to Puerto Rico next Tuesday and I can't wait. 

    I was thinking today how nice it would be to ride my mountain bike, and then I thought about celebrating and buying a new 29 incher, with hydraulic brakes and.....

     

    I guess I would say to everyone that is just starting out, you can do this, and there is a light at the end, and its doable

    Hi Bill!

    I am so glad to read your post and all the positive news!  As in my case, your recovery sounds like it's taking place pretty quickly, and I'm so happy you are feeling much better.  I was quite badly burned and I never would have believed that I would heal that fast.  Instead, I thought recovery was going to be a very long process.  Well, part of it was for me, primarily bowel issues, but otherwise, I bounced back quickly.  You sound like a very fit guy since you mountain bike and I think this is serving you well in your recovery process.  I am a runner and weight train and I think it was the fact that I was in really good shape prior to treatment that got me back to normal so soon.  As for the pooping razor blades, that will definitely improve--not fast enough, I realize, but it will.

    I hope you'll buy that new bike!  I used to do a lot of biking and do still occasionally go out on the paved trail near my house.  During treatment, I wasn't sure I'd ever be able to ride again.  Actually, for a time, I was wondering if I'd ever be able to sit again!  A severely burned butt makes you think about things like that!    

    Well, you have crossed over from being one of the people here who isn't sure they'll get through this treatment to one of us who has been there, done that, survived it, and is now giving encouragement and hope to others who are just beginning.  Yep, it's doable.  My colorectal doc's words to me were "It won't be fun, but you'll get through it."  I would have to agree.  Enjoy your vacation--you've definitely earned it--and update us now and then as to how you're doing.  Take care! 

  • Marynb
    Marynb Member Posts: 1,118
    #60
    Bill158 said:

    Just got back from hell

    Gary Allan has a song called "I just got back from hell", and that's how i feel.   I feel like I was dragged through hell, with my **** on fire.  Today I felt so good it seems like I had a bad dream.  My burns are all closed up, and the last of the scabs came off today, and I have new pink skin down yonder, that still is a little tender, but everything seems to be working ok.  I am back to working regular shifts during the week and weekends, and tonight is the 3rd of four shifts, and its been pretty busy, but I don't feel tired or fatigued like I did after getting out of the hospital.  It's amazing how fast evrything heals up and you start feeling like a real person.  Still feels like I'm pooping glass or razor blades, so I was wondering how long that lasts.  My rad onc is going to see me end of July for a DRE, and maybe another PET scan at some time.  My regular onc is going to get me set up for a sigmoidoscopy also but I forgot if she said 4 weeks or months.  I just feel so good now I'm not thinking about that too much.  After tomorrow night I am off for 10 days, and headed to Puerto Rico next Tuesday and I can't wait. 

    I was thinking today how nice it would be to ride my mountain bike, and then I thought about celebrating and buying a new 29 incher, with hydraulic brakes and.....

     

    I guess I would say to everyone that is just starting out, you can do this, and there is a light at the end, and its doable

    Bill
    Praise God! You weathered the storm very well. It is great that you are heading off to Puerto Rico! Have a wonderful time. Just a warning,I was so eager to getmback to normal that I overdid it and ended pretty sick for awhile. Stay well!
  • sandysp
    sandysp Member Posts: 868 Member
    #61
    Marynb said:

    Bill
    Praise God! You weathered the storm very well. It is great that you are heading off to Puerto Rico! Have a wonderful time. Just a warning,I was so eager to getmback to normal that I overdid it and ended pretty sick for awhile. Stay well!

    Wow,

    I just read this whole post. I am sorry I was not with you through this process. All I can say is you must love your work. It revealed a lot to me that you kept going through it. I have a part time job that I was able to keep and it truly is because of love. My other job made me tired just thinking about it.

    On the other hand, while I agree that planning bicycle rides is a wonderful thing, it's also a wonderful thing to plan naps. Rest isn't near valued enough by people as highly motivated as you seem to be. So if you do go on a bike trip, bring a yoga mat or something you can spread out on the grass on and just enjoy sleeping in the sun/shade whatever.

    Remember, Lance Armstrong was a fake, faker!

    All the best,

    Sandy

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