half way there

qv62
qv62 Member Posts: 434 Member
in Anal Cancer #1

I am at my half way point in my treatment plan, the medical oncologist told me yesterday my counts are of course still below normal but we are going full blown with the second mitomycin infusion next week, she said she often has to decrease the amount in her patients at this point but I am hanging tough and we will go full steam ahead. I absolutely love this doctor and her bedside manner, I have also been seeing my radiological oncologist once a week (who I am also quite fond of) and she has given me lidocane and proctofoam for the discomfort I am starting to feel on my irritated skin, I will have another skin check tomorrow but don't really see or feel a difference yet for the better. I also find myself needing the zofran and compazine a bit more but have somehow increased my energy level these past 2 days. Orientation, prom and graduation are still 2 weeks away but I am a bit more hopeful then when this whole mess started.

«1

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    #2
    qv62

    It sounds like you are holding your own and I'm so glad to hear that!  Your doctors are monitoring you closely--that's very good--and I'm glad you can get the full dose of chemo on round 2.  The skin issues may get worse, but you are prepared.  I know you'll get through this and I so hope you can make it to all the upcoming events.  Hang in there and keep us posted as you can.

  • jcruz
    jcruz Member Posts: 379 Member
    #3
    half way

    Getting past the half way is great.  I remember thinking I could see the end of it.  As Martha said skin issues may become more of a problem but it sounds like both of your doctors are on top of things.

    Continuing to think of you and wish you well,

    Janet

  • qv62
    qv62 Member Posts: 434 Member
    #4
    mp327 said:

    qv62

    It sounds like you are holding your own and I'm so glad to hear that!  Your doctors are monitoring you closely--that's very good--and I'm glad you can get the full dose of chemo on round 2.  The skin issues may get worse, but you are prepared.  I know you'll get through this and I so hope you can make it to all the upcoming events.  Hang in there and keep us posted as you can.

    mp327 & jcruz

    I used the lidocane and proctofoam as instructed these last few days before todays skin check, not getting much relief or seeing a change for the better I explained to the radiation nurse that my friend had purchased an aloe plant this weekend for me and processed it according to a you tube video and gave me a container of the fresh gel to put in my fridge and try. The nurse explained to me that it would not be the policy of the facility to recommend this as an alternative treatment but then whispered to me that if she were me she would go for it. With that said, I did a small test area to make sure I had no adverse reactions and then later on applied the gel with gauze to my outer vaginal area and inner thigh, I actually had some temporary relief and will apply again before bed, I don't know how long this will hold me off until I don't get relief but I'm hoping it gets me through the next 2 weeks. They did however write me a script today for silverdine but told me to only use it on the weekend when there is no treatment dut to the metal and the radiation, so I'll pick that up tomorrow and use it till Sun and then go back to the aloe on Monday. 

  • mp327
    mp327 Member Posts: 4,440 Member
    #5
    qv62 said:

    mp327 & jcruz

    I used the lidocane and proctofoam as instructed these last few days before todays skin check, not getting much relief or seeing a change for the better I explained to the radiation nurse that my friend had purchased an aloe plant this weekend for me and processed it according to a you tube video and gave me a container of the fresh gel to put in my fridge and try. The nurse explained to me that it would not be the policy of the facility to recommend this as an alternative treatment but then whispered to me that if she were me she would go for it. With that said, I did a small test area to make sure I had no adverse reactions and then later on applied the gel with gauze to my outer vaginal area and inner thigh, I actually had some temporary relief and will apply again before bed, I don't know how long this will hold me off until I don't get relief but I'm hoping it gets me through the next 2 weeks. They did however write me a script today for silverdine but told me to only use it on the weekend when there is no treatment dut to the metal and the radiation, so I'll pick that up tomorrow and use it till Sun and then go back to the aloe on Monday. 

    qv62

    I would definitely try the aloe.  I've heard quite a few people say it helps.  I guess doctors don't like to recommend anything that doesn't require a prescription--ugh!  But aloe has been around way longer than lidocaine or proctofoam.  I hope it will give you some relief! 

  • judyv3
    judyv3 Member Posts: 143 Member
    #6
    qv62 said:

    mp327 & jcruz

    I used the lidocane and proctofoam as instructed these last few days before todays skin check, not getting much relief or seeing a change for the better I explained to the radiation nurse that my friend had purchased an aloe plant this weekend for me and processed it according to a you tube video and gave me a container of the fresh gel to put in my fridge and try. The nurse explained to me that it would not be the policy of the facility to recommend this as an alternative treatment but then whispered to me that if she were me she would go for it. With that said, I did a small test area to make sure I had no adverse reactions and then later on applied the gel with gauze to my outer vaginal area and inner thigh, I actually had some temporary relief and will apply again before bed, I don't know how long this will hold me off until I don't get relief but I'm hoping it gets me through the next 2 weeks. They did however write me a script today for silverdine but told me to only use it on the weekend when there is no treatment dut to the metal and the radiation, so I'll pick that up tomorrow and use it till Sun and then go back to the aloe on Monday. 

    qv62

    Hooray for being halfway to healing!  I used aloe and it helped a bit.  It was easy to shower off prior to treatment.  I settled for lots of Aquaphor and Aquaphor with lidocaine.  I never got the silvadene, but I would have hesitated if it was difficult to get off before treatment.  I tried Proctofoam and found no relief from that either.

    You will get through this!

     

  • knolltop
    knolltop Member Posts: 56
    #7
    qv62

    Count down time....and I agree with Martha and the others....your bottom and vaginal area may become more irritated.    Use your meds and soaking in  a sitz bath helped me too.   I had two big aloe plants that helped as well.   Cut open the leaves and put it on....remember to have it off for radiation though.

    Sending prayers your way.

     

     

  • danker
    danker Member Posts: 1,276 Member
    #8
    bun burn

    You might try RADIAGEL available at Wallmart to soothe The burning from radiation. Good luck!

  • TraceyUSA
    TraceyUSA Member Posts: 316
    #9
    qv62

    Sounds like you're moving right along, it's going to be over before you know it!

    My radiation oncologist gave me an aloe based gel which I used from week 2 until probably a month or so after.  It is caled Natural Care Gel and it is esp. for radiation dermatitis (wet and dry desquamation).  This and Aquaphor was all I used topically.  I did not have severe burns as many did.  I also was told be go bottomless to help the area to air out and nothing to rub and irritate it.

    If the Zofran and compazine don't work they told me Ativan (yes, the anti-anxiety med) works very well but the Zofran during chemo weeks did it's job for me.

    As always, you are in my thoughts and prayers! 

  • qv62
    qv62 Member Posts: 434 Member
    #10
    TraceyUSA said:

    qv62

    Sounds like you're moving right along, it's going to be over before you know it!

    My radiation oncologist gave me an aloe based gel which I used from week 2 until probably a month or so after.  It is caled Natural Care Gel and it is esp. for radiation dermatitis (wet and dry desquamation).  This and Aquaphor was all I used topically.  I did not have severe burns as many did.  I also was told be go bottomless to help the area to air out and nothing to rub and irritate it.

    If the Zofran and compazine don't work they told me Ativan (yes, the anti-anxiety med) works very well but the Zofran during chemo weeks did it's job for me.

    As always, you are in my thoughts and prayers! 

    thank you all

    I appreciate the thoughts, prayers, comments and advice as always and I am glad to hear from all of you. I had a rough day with the discomfort of the burns and in addition felt weak each time I got up, I actually stayed in bed watching tv all day (something I never do) I took a shower and got right back in to bed half way through the day but I am finally feeling better now unfortunately it's 10 pm and the day is now over. Hoping to be back on track tomorrow. I am 18 treatments down and get my next dose of mytomycin on Tues. Hope you all enjoy the rest of your weekend.

  • mp327
    mp327 Member Posts: 4,440 Member
    #11
    qv62 said:

    thank you all

    I appreciate the thoughts, prayers, comments and advice as always and I am glad to hear from all of you. I had a rough day with the discomfort of the burns and in addition felt weak each time I got up, I actually stayed in bed watching tv all day (something I never do) I took a shower and got right back in to bed half way through the day but I am finally feeling better now unfortunately it's 10 pm and the day is now over. Hoping to be back on track tomorrow. I am 18 treatments down and get my next dose of mytomycin on Tues. Hope you all enjoy the rest of your weekend.

    qv62

    Obviously your body needed some rest, so staying in bed all day was the right thing to do.  I'm glad you are feeling better.  You will be ready for Tuesday.  May all go well.  I will be thinking of you! 

  • pializ
    pializ Member Posts: 508 Member
    #12
    mp327 said:

    qv62

    Obviously your body needed some rest, so staying in bed all day was the right thing to do.  I'm glad you are feeling better.  You will be ready for Tuesday.  May all go well.  I will be thinking of you! 

    QV62

    So glad you have passed the halfway mark! I remember that felt so good! At this stage I wore my long summer dresses (even though it was midwinter), because I could go commando. Creams & potions did not help me, but using my portable bidet with salt water & Benadryl for the vaginal irritation were probably most useful. I also bought a thick sheepskin to sit on. What I didn't discover until later was a satin/ silk pillowcase or some slippery dress liningon the car seat. Would have been really helpful getting in and out of the car. 

    Be kind to yourself and just do whatever it takes to get through the next few weeks. It passes surprisingly quickly.

    Gentle hugs

    Liz

  • qv62
    qv62 Member Posts: 434 Member
    #13
    pializ said:

    QV62

    So glad you have passed the halfway mark! I remember that felt so good! At this stage I wore my long summer dresses (even though it was midwinter), because I could go commando. Creams & potions did not help me, but using my portable bidet with salt water & Benadryl for the vaginal irritation were probably most useful. I also bought a thick sheepskin to sit on. What I didn't discover until later was a satin/ silk pillowcase or some slippery dress liningon the car seat. Would have been really helpful getting in and out of the car. 

    Be kind to yourself and just do whatever it takes to get through the next few weeks. It passes surprisingly quickly.

    Gentle hugs

    Liz

    Martha and Liz

    Yes I will be ready for Tuesday no matter what it takes, doc said she so often needs to cut backon everyone at this poin but I am going full steam ahead, I don't know how much the silverdene helped me yesterday so I'll try it again today but may give the benedryl a shotAs for the sheepskin I have been looking for one to purchase but have not found it, did you get it on the internet or a store ?

  • mxperry220
    mxperry220 Member Posts: 496 Member
    #14
    qv62 said:

    Martha and Liz

    Yes I will be ready for Tuesday no matter what it takes, doc said she so often needs to cut backon everyone at this poin but I am going full steam ahead, I don't know how much the silverdene helped me yesterday so I'll try it again today but may give the benedryl a shotAs for the sheepskin I have been looking for one to purchase but have not found it, did you get it on the internet or a store ?

    Sheepskin

    Here is  link for sheepskin pads.

    http://lovemysheepskin.com/product-category/medical-sheepskin-products/product-category/medical-sheepskin-products/?gclid=CI3Nu4K1_L4CFc8F7Aodg0UAIw

     

    Mike

  • mp327
    mp327 Member Posts: 4,440 Member
    #15
    qv62 said:

    Martha and Liz

    Yes I will be ready for Tuesday no matter what it takes, doc said she so often needs to cut backon everyone at this poin but I am going full steam ahead, I don't know how much the silverdene helped me yesterday so I'll try it again today but may give the benedryl a shotAs for the sheepskin I have been looking for one to purchase but have not found it, did you get it on the internet or a store ?

    Silvadene

    Just be sure to get all of this stuff completely removed before you get a radiation treatment.  I'm sure you already know this, but it's worth repeating.  Since it contains metal, it can increase the burn.  I wish you the best possible week ahead.

  • pializ
    pializ Member Posts: 508 Member
    #16
    mp327 said:

    Silvadene

    Just be sure to get all of this stuff completely removed before you get a radiation treatment.  I'm sure you already know this, but it's worth repeating.  Since it contains metal, it can increase the burn.  I wish you the best possible week ahead.

    sheepskin

    Thanks Mike for appropriate advice. I am in the UK. I ordered mine online. It's just a sheepskin rug, very thick & really helped in the latter stages of treatment.  

    When going to the loo, I bought some very soft wipes, & used these wet. Also, you might find some innovative ways of going to the loo using a portable bidet. As I said, whatever helps us through. Needs must! 

    In the UK, or certainly where I live, it was onky 5fu for the second round of chemo. Good luck for tomorrow! Interesting colouration of urine following mitomycin bolus.

    Best wishes

    Liz

  • qv62
    qv62 Member Posts: 434 Member
    #17
    mxperry220 said:

    Sheepskin

    Here is  link for sheepskin pads.

    http://lovemysheepskin.com/product-category/medical-sheepskin-products/product-category/medical-sheepskin-products/?gclid=CI3Nu4K1_L4CFc8F7Aodg0UAIw

     

    Mike

    mxperry220

    thhanks so much for the link, I will check it out :)

  • qv62
    qv62 Member Posts: 434 Member
    #18
    mp327 said:

    Silvadene

    Just be sure to get all of this stuff completely removed before you get a radiation treatment.  I'm sure you already know this, but it's worth repeating.  Since it contains metal, it can increase the burn.  I wish you the best possible week ahead.

    mp327

    actually saw the doc for a skin check on Monday and she wants me to use the silverdene everyday now instead of just weekends, she felt I was heading for the hospital due to the burns and would have to stop treatment if I don't start healing, so I put it on after treatment and after dinner, then take a bath before bed and go without anything through the night then shower in the morning before treatment so hopefully between this regiment I have it all off by treatment

  • qv62
    qv62 Member Posts: 434 Member
    #19
    pializ said:

    sheepskin

    Thanks Mike for appropriate advice. I am in the UK. I ordered mine online. It's just a sheepskin rug, very thick & really helped in the latter stages of treatment.  

    When going to the loo, I bought some very soft wipes, & used these wet. Also, you might find some innovative ways of going to the loo using a portable bidet. As I said, whatever helps us through. Needs must! 

    In the UK, or certainly where I live, it was onky 5fu for the second round of chemo. Good luck for tomorrow! Interesting colouration of urine following mitomycin bolus.

    Best wishes

    Liz

    pializ

    I actually found sensitve skin fabric wipes that I have been using instead of tp and take a peri bottle with me to wash down and blot dry with a washscloth, I bought a 12 pack of white washcloths just for this, it seems to be working but the pain still exists

  • mp327
    mp327 Member Posts: 4,440 Member
    #20
    qv62 said:

    mp327

    actually saw the doc for a skin check on Monday and she wants me to use the silverdene everyday now instead of just weekends, she felt I was heading for the hospital due to the burns and would have to stop treatment if I don't start healing, so I put it on after treatment and after dinner, then take a bath before bed and go without anything through the night then shower in the morning before treatment so hopefully between this regiment I have it all off by treatment

    qv62

    That sounds like a good plan and I hope you'll find that this medication helps with your burns.  I really hope you don't end up in the hospital and have to put a hold on your treatment.  Please keep us posted and know that I send you hugs and prayers.  Hang in there!

  • KarenK57
    KarenK57 Member Posts: 18
    #21
    half way there for me

    Hi today is day 19 of my radiation.  I also start my second dose of chemo next week on Friday.   I am struggling today with the radiation burns.  Dr. suggested to soak in red gatorade for soothing comfort.  Also sitz baths.  Is there anyting I should put in the bath to help with the burns?  I am still struggling with the "why me"  of my cancer.  Especially when it starts hurting real bad.  I don't want to eat so I don't have a bowel movement.  All I can say is UGH!!!!!!  Reading your blog has given me hope and a little better outlook.  I wish you the best of luck and hope all is cured for you soon.  

Discussion Boards