Just diagnosed - what should I expect?

PLUChris
PLUChris Member Posts: 4
in Anal Cancer #1

Hi,  I'm due to start chemo- and radio-therapy for a T3/N0 tumor in the rectum this coming Monday.  Getting a picc line installed on Friday, and I'm to be given a pump to deliver the chemo over the course of the week. 

So far the doctors, nurses and support staff I have dealt with have all been wonderful, and I've been made to feel that it is all under control.

If anyone here has experience of the pump, I'd be interested to know how much of an inconvenience it is, or if there are any tips on how to deal with it - I had to deal with a picc line before when I had to take antibiotics for 8 weeks after an broken shoulder got infected, but the pump is something new to me.  Also, I've read through the list of possible side effects of both parts of the treatment, but would be interested to know from those who have been there which actually occur, what they have found to be most troublesome and, again, if there are any secrets to dealing with it!

Thanks for indulging me - and thanks for being there!

Chris

Comments

  • mp327
    mp327 Member Posts: 4,440 Member
    edited November 2016 #2
    Chris

    I'm sorry your diagnosis has brought you here.  I went through chemo/radiation for anal cancer in 2008.  The pump was not such a big deal.  You wear it around your waist during and day and at night, it laid right next to me in bed.  The only inconvenience will be in bathing--a bath will be easier than a shower.  I just laid the pump on the edge of the tub while I bathed.

    There is a long list of possible side effects, but the ones I experienced were fatigue, mouth sores, slight nausea (relieved by anti-nausea meds), loss of appetite, and burns from the radiation.  Aquaphor eased the burning for awhile, but as they intensified, I was given Silver Sulfadiazine cream (prescription).  Creams must be completely removed prior to radiation treatment, then can be reapplied afterwards.  Of the side effects I experienced, the burning was the worst.  You may also experience diarrhea and urgency, which I did also.

    I'm sure others on this site will chime in.  Just remember that each person's experience is unique to them, but there are many commonalities.  If I could give you one really valuable tip it would be to drink lots of water and stay well-hydrated.

    Please let us know how else we can help you as you begin this journey.  We are here for you.  I wish you all the best and I know you will get through this!

    Martha

  • PLUChris
    PLUChris Member Posts: 4
    edited November 2016 #3
    mp327 said:

    Chris

    I'm sorry your diagnosis has brought you here.  I went through chemo/radiation for anal cancer in 2008.  The pump was not such a big deal.  You wear it around your waist during and day and at night, it laid right next to me in bed.  The only inconvenience will be in bathing--a bath will be easier than a shower.  I just laid the pump on the edge of the tub while I bathed.

    There is a long list of possible side effects, but the ones I experienced were fatigue, mouth sores, slight nausea (relieved by anti-nausea meds), loss of appetite, and burns from the radiation.  Aquaphor eased the burning for awhile, but as they intensified, I was given Silver Sulfadiazine cream (prescription).  Creams must be completely removed prior to radiation treatment, then can be reapplied afterwards.  Of the side effects I experienced, the burning was the worst.  You may also experience diarrhea and urgency, which I did also.

    I'm sure others on this site will chime in.  Just remember that each person's experience is unique to them, but there are many commonalities.  If I could give you one really valuable tip it would be to drink lots of water and stay well-hydrated.

    Please let us know how else we can help you as you begin this journey.  We are here for you.  I wish you all the best and I know you will get through this!

    Martha

    Thanks, Martha!  I appreciate

    Thanks, Martha!  I appreciate you taking the time to respond!  I'll make sure I'm carrying my water bottle wherever I go!

    Chris

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    PLUChris said:

    Thanks, Martha!  I appreciate

    Thanks, Martha!  I appreciate you taking the time to respond!  I'll make sure I'm carrying my water bottle wherever I go!

    Chris

    PLUChris

    You are welcome!  Just know that you will get through this, even if it's one day at a time, just like everyone else here.  You can do it!

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited November 2016 #5
    Chris.....

    I am so sorry to welcome yet another to this group, but always so glad we are here for each other. As Martha said, the list of "possible" side effects from both chemo and radiation is long....know that some have only a few and some seem to get many and all at varying degrees.

    I was initially dx with Stage 3b anal cancer in Jan. 2011. I started out strong but seems that a few weeks into things the fatigue hit me hard. My appetite plummeted pretty fast too and while I felt like it, I never did vomit. There are usually anti-nauseous meds prescribed and I took them on schedule. I was not so good at staying hydrated but think that would have made a big difference as well, and it also serves to help flush the strong chemo drugs through your system. Try to sip fluids throughout the day, eat jello, watermelon, or other liquids. I did find that nibbling on toast, crackers, or snacks as a way to keep at least something in my stomach was helpful. My doctor said to eat anything, whatever tasted good at the time.....I think I mostly lived on yogurt, chicken, and cheese sandwiches, lol.

    As with the chemo, the radiation varies from person to person, but unfortunately most do have a significant level of pain. Mine was bad and by the time treatment ended I was taking a high dose of oxycontin twice a day on a regular basis and still uncomfortable, some get by with tylenol......I will wish this for you, but know that it serves no purpose to ride out the pain if relief is available. If needed, ask for a prescription as you will sleep better and give your body the chance to heal as it needs. (If needed, with most pain medication a stool softener is also recommended especially in the case of anal cancer treatment) The ointments mentioned are often helpful but as noted REMOVE before radiation treatments as they intensify the burning.

    Know that we are all in this together and that no question is off topic here, so stay in touch and ask as things come up!

    I will have you and all others (especially those just starting out in this journey) in my prayers as we all move forward in health!

    katheryn

  • PLUChris
    PLUChris Member Posts: 4
    #6
    eihtak said:

    Chris.....

    I am so sorry to welcome yet another to this group, but always so glad we are here for each other. As Martha said, the list of "possible" side effects from both chemo and radiation is long....know that some have only a few and some seem to get many and all at varying degrees.

    I was initially dx with Stage 3b anal cancer in Jan. 2011. I started out strong but seems that a few weeks into things the fatigue hit me hard. My appetite plummeted pretty fast too and while I felt like it, I never did vomit. There are usually anti-nauseous meds prescribed and I took them on schedule. I was not so good at staying hydrated but think that would have made a big difference as well, and it also serves to help flush the strong chemo drugs through your system. Try to sip fluids throughout the day, eat jello, watermelon, or other liquids. I did find that nibbling on toast, crackers, or snacks as a way to keep at least something in my stomach was helpful. My doctor said to eat anything, whatever tasted good at the time.....I think I mostly lived on yogurt, chicken, and cheese sandwiches, lol.

    As with the chemo, the radiation varies from person to person, but unfortunately most do have a significant level of pain. Mine was bad and by the time treatment ended I was taking a high dose of oxycontin twice a day on a regular basis and still uncomfortable, some get by with tylenol......I will wish this for you, but know that it serves no purpose to ride out the pain if relief is available. If needed, ask for a prescription as you will sleep better and give your body the chance to heal as it needs. (If needed, with most pain medication a stool softener is also recommended especially in the case of anal cancer treatment) The ointments mentioned are often helpful but as noted REMOVE before radiation treatments as they intensify the burning.

    Know that we are all in this together and that no question is off topic here, so stay in touch and ask as things come up!

    I will have you and all others (especially those just starting out in this journey) in my prayers as we all move forward in health!

    katheryn

    Thank you, Katheryn. Sipping

    Thank you, Katheryn. Sipping fluids and snacking seems to be a recurring piece of advice - I'll try to get into the habit before I get started! It's a scary time for me, but reading this forum has helped me to feel that I am not alone and I am sure that I will lean on you guys for support as the process goes on.

    Chris

  • eihtak
    eihtak Member Posts: 1,473 Member
    edited November 2016 #7
    PLUChris said:

    Thank you, Katheryn. Sipping

    Thank you, Katheryn. Sipping fluids and snacking seems to be a recurring piece of advice - I'll try to get into the habit before I get started! It's a scary time for me, but reading this forum has helped me to feel that I am not alone and I am sure that I will lean on you guys for support as the process goes on.

    Chris

    Chris.....

    You are very welcome....it does seem scary at first but somehow once treatment gets started and you are actively doing something to get rid of this, the fear will hopefully ease.

    Something else I thought of regarding the pump....while not really too awkward, I was sent home with mine in a fanny pack. When hanging around at home (which is where I usually was) that was fine, but a couple times when going elsewhere I fit it into a cross body bag or satchel of sorts....the tubing still hung out as it connects to the port or pickline, but just thought I'd throw that out there. 

    Good luck!

    katheryn

  • nonichol
    nonichol Member Posts: 170
    #8
    Chris

    welcome to the board. I recall the radiation to be the most difficult. I installed a dual shower head. Can't imagine toilet paper, lots of site baths with black tea and a fan on my skin. You can do it this is your job for the time being. That's how I looked at it. Hang in there.

  • PLUChris
    PLUChris Member Posts: 4
    edited November 2016 #9
    eihtak said:

    Chris.....

    You are very welcome....it does seem scary at first but somehow once treatment gets started and you are actively doing something to get rid of this, the fear will hopefully ease.

    Something else I thought of regarding the pump....while not really too awkward, I was sent home with mine in a fanny pack. When hanging around at home (which is where I usually was) that was fine, but a couple times when going elsewhere I fit it into a cross body bag or satchel of sorts....the tubing still hung out as it connects to the port or pickline, but just thought I'd throw that out there. 

    Good luck!

    katheryn

    Thanks for the encouragement

    Thanks for the encouragement and the tip (and sorry not to check back on this thread for the last couple of weeks!  It's been a busy time!)

    I'm coping pretty well with the pump and the treatment - I get very tired about mid-afternoon, but have been able to take a nap most days and carry on with stuff come the evening. 

    So my current schedule is: drive to Radiation, 10 minutes of radiation, drive to work, work for 4 hours (sometimes a little over), drive home, sleep, walk if I'm up to it, cook dinner for the family, crash in front of a movie, bed!  Doesn't seem so bad, really!

    Today was the 1/2 way point in the radiation treatment and the doctor warned me to expect things to deteriorate over the next few weeks.  I've joined a support group at the hospital and feel that has really benefitted me - to be able to talk to people who have been through the same (or in many cases, far worse) experiences, and to see the positivity and light around these people is wonderful!

    I'll try to check in here more often - all communication is useful!

    Chris

  • Bella_G
    Bella_G Member Posts: 30 Member
    edited November 2016 #10
    Sending support

    Chris,

    I wish you the best during treatment and recovery.

    I am approaching my 5 year anniversary and am doing very well with minimal impacts from treatment.

    My advice is to take whatever time and rest is needed during treatment which is relatively short (compared to other cancer treatments) but can be very challenging with radiation side effects. Allow your support group to step up and help where possible.

    Sending support!

    -Bella

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