Update on Mo

Peg59
Peg59 Member Posts: 18
in Esophageal Cancer #1
Sorry I haven't posted in so very long. We are just "keepin, keepin on" day by day.

Today was to be his beginning of the 2nd cycle of cisplatin and epirubicin and beginning of week 4 on 5FU 24/7 pump. They are giving him a week off due to severe stomititus. He has blisters covering the inside of his mouth, tongue and lips. Otherwise he is doing GREAT. He was eating well until the blisters really took hold and now is forcing shakes to get through this bump in the road.

For the blisters we have been through a week of Nystatic, magic swizzle and the other rinses recommended. I have been working with an herbalist friend on helping heal the sores. Right now we are trying a slippery elm tea with honey and golden seal powder as a rinse. Our oncologist gave us the ok, and I will post any results we see.

Seems the stopping the 5FU coincided with a severe shortage. We are told there is a shortage of the drug and our hospital is now out of 5FU until next week, so even without the mouth sores, no one is getting the 5FU right now. How can something like that happen when people are fighting for their futures? Each week I come back with a different view of our health system and really don't like what I see.

Our spirits are still good and he is still active. Monday he helped me catch an injured hawk. Picture bald guy with chemo bag running up forested hills. It was definitely a sight to see.

During our weekly trips, we have met other EC patients. We all have one huge thing in common, and it's what I see written every day on this board: like soldiers in a battlefield, coming together to fight an enemy. Sorry for rambling but that seems to be how my thought come right now.

Comments

  • birdiequeen
    birdiequeen Member Posts: 319
    #2
    Thanks for the update!
    No
    Thanks for the update!

    No need to explain rabling....EC changes your thought process. I call it a "game changer".
  • JimboC
    JimboC Member Posts: 264
    #3
    I have battled the mouth
    I have battled the mouth blisters myself. Although not to the degree Mo has. Ive been using Mugard for mine. It seems to help me but it's expensive. I put my latest shipment on hold because I found out that my out of pocket was going to be almost 900 for a one month supply. I'm waiting to see if I feel them starting with this round before I pay that much. I can feel them start several days before they get bad. You might talk to your oncologist and see if they have any samples if you're interested. the 5fu shortage scares me. I have 6more weeks on it. I hope all of us ge the meds we need.
  • Peg59
    Peg59 Member Posts: 18
    #4
    JimboC said:

    I have battled the mouth
    I have battled the mouth blisters myself. Although not to the degree Mo has. Ive been using Mugard for mine. It seems to help me but it's expensive. I put my latest shipment on hold because I found out that my out of pocket was going to be almost 900 for a one month supply. I'm waiting to see if I feel them starting with this round before I pay that much. I can feel them start several days before they get bad. You might talk to your oncologist and see if they have any samples if you're interested. the 5fu shortage scares me. I have 6more weeks on it. I hope all of us ge the meds we need.

    Thank you Jimbo,
    I looked up
    Thank you Jimbo,

    I looked up the Mugard, and the clinical trial results look wonderful. WOW, $1000 for a 6 week supply at one pharmacy. It's worth it of course if we don't get healing with what we are trying.

    The sores are still present through his mouth but there has been some improvement. Not sure if it's the herbal rinse we are making (and of course we have no control) but he's improved enough today that he ate eggs and a pancake this morning and is having a soft pasta right now. Mo wears an upper plate and for several days it didn't fit. The past 2 days he couldn't even think of trying to wear it even with the magic swizzle. This morning her wore it for the breakfast and tonight for the pasta and he's been drinking all day. That's a huge improvement. If we see dramatic results, I will post the recipe under it's own topic.

    Peggy
  • JimboC
    JimboC Member Posts: 264
    #5
    Peg59 said:

    Thank you Jimbo,
    I looked up
    Thank you Jimbo,

    I looked up the Mugard, and the clinical trial results look wonderful. WOW, $1000 for a 6 week supply at one pharmacy. It's worth it of course if we don't get healing with what we are trying.

    The sores are still present through his mouth but there has been some improvement. Not sure if it's the herbal rinse we are making (and of course we have no control) but he's improved enough today that he ate eggs and a pancake this morning and is having a soft pasta right now. Mo wears an upper plate and for several days it didn't fit. The past 2 days he couldn't even think of trying to wear it even with the magic swizzle. This morning her wore it for the breakfast and tonight for the pasta and he's been drinking all day. That's a huge improvement. If we see dramatic results, I will post the recipe under it's own topic.

    Peggy

    I understand
    Believe me, I understand mouth sores. So far, I have been able to keep them at bay with h Mugard. Last summer, I was diagnosed with a precancerous spot on my lip. They prescribed me what amounted to topical chemo. I had full blown oral sores with them. It was so painful. My dr ended up prescribing lortabs to help with the pain. Please give all my best to Mo. He sounds like an incredible guy.

    Take care
  • Daisylin
    Daisylin Member Posts: 365
    #6
    Peg59 said:

    Thank you Jimbo,
    I looked up
    Thank you Jimbo,

    I looked up the Mugard, and the clinical trial results look wonderful. WOW, $1000 for a 6 week supply at one pharmacy. It's worth it of course if we don't get healing with what we are trying.

    The sores are still present through his mouth but there has been some improvement. Not sure if it's the herbal rinse we are making (and of course we have no control) but he's improved enough today that he ate eggs and a pancake this morning and is having a soft pasta right now. Mo wears an upper plate and for several days it didn't fit. The past 2 days he couldn't even think of trying to wear it even with the magic swizzle. This morning her wore it for the breakfast and tonight for the pasta and he's been drinking all day. That's a huge improvement. If we see dramatic results, I will post the recipe under it's own topic.

    Peggy

    Hi Peggy
    Glad to hear that Mo is chasing critters around the yard, that is a good sign! I'm sure it was a sight to see. Sorry to hear about the mouth sores, we didn't have to deal with that, thank god, but sounds like they are improving, and that's great!
    For some reason the Forrest Gump line just popped into my head, but with a twist. Chemo is like a box of chocolates, you don't know which side effects you're gonna get till you start treatment. Not so funny, but so true.
    Hang in there Peggy, it's such an emotional time, both for the caregivers and the patients. stay strong!
    Chantal
  • Donna70
    Donna70 Member Posts: 852 Member
    #7
    Daisylin said:

    Hi Peggy
    Glad to hear that Mo is chasing critters around the yard, that is a good sign! I'm sure it was a sight to see. Sorry to hear about the mouth sores, we didn't have to deal with that, thank god, but sounds like they are improving, and that's great!
    For some reason the Forrest Gump line just popped into my head, but with a twist. Chemo is like a box of chocolates, you don't know which side effects you're gonna get till you start treatment. Not so funny, but so true.
    Hang in there Peggy, it's such an emotional time, both for the caregivers and the patients. stay strong!
    Chantal

    try Acyclovir it made mine go away
    Hi Peggy,
    When I got the 5FU and cisplatin I got the inner layer of my mouth all sore and sort of sloughing off and I was put on Acyclovir which is used for herpes and also Aids pts but they gave me a liquid form which worked magic and I used anytime I was on chemo and it prevented further outbreaks. It worked wonders. Just a suggestion. That is kind of scary about the shortage of 5 FU. thoughts and prayers for Mo and you.
    Donna70
  • Peg59
    Peg59 Member Posts: 18
    #8
    Donna70 said:

    try Acyclovir it made mine go away
    Hi Peggy,
    When I got the 5FU and cisplatin I got the inner layer of my mouth all sore and sort of sloughing off and I was put on Acyclovir which is used for herpes and also Aids pts but they gave me a liquid form which worked magic and I used anytime I was on chemo and it prevented further outbreaks. It worked wonders. Just a suggestion. That is kind of scary about the shortage of 5 FU. thoughts and prayers for Mo and you.
    Donna70

    Much improved now
    Thank you Donna. I read this when you posted it and asked our onc about it. They didn't recommend it without first testing to see if the blisters were virus based.

    Mo was off chemo for 1 week and his mouth sores have subsided greatly. His mouth is still tender but visually it looks so much better.

    Besides the magic swizzle, that helped keep him eating, 2 things helped him:

    1. Thayers slipper elm lozenges. We picked these up at a local mom and pop drug store but they are also available on line. He said they were the only lozenge he found that really soothed.

    2. The rinse I made him did seem to give him a lot or relief and the sores began healing pretty fast once he started it. Here's the recipe:

    boil 1/2 cup of water
    steep 1 tablespoon of slipper elm (the whole herb fibers) for 15 minutes
    Strain to remove the fibers
    add 2 tablespoons of honey and 1/4 teaspoon of goldenseal powder
    Let cool
    Use this as a rinse, gargle and spit.

    Goldenseal and honey are known to have anti-bacterial and anti-fungal properties. The slippery elm coats and soothes.

    The slippery elm and goldenseal we used came from a local herbalist friend. If anyone wants to try it and can't find the ingredients, pm me for her website. I do not want to appear as if spamming by posting it in the forum.

    Thank you everyone for your suggestions and support. That was 10 days of pure "you know what".

    Peggy

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