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Mouth Sores - what worked for you?

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  • Mouth Sores - what worked for you?

    Zach is currently C2D16 of 4 cycles of BEP. About day 11 he started getting mouth sores and now they are just awful. I asked for Magic Mouthwash - but I think they left out the "magic" - they prescribed it without lidocaine. It's not doing anything. Over the weekend I had him try several OTC items: Oragel, Oragel Mouth Sores Rinse, Chloraseptic, and Canker Sore treatment and none really do much for more than a couple of minutes. The canker sore treatment was the best though.

    His tongue is swollen, talking is difficult and of course getting any food or drink in him is hard. He is hurting mostly down the esophagus where nothing can get to. Yesterday in clinic they gave him IV morphine and sent us home with a Rx for liquid morphine. The morphine helps some, but he's still in a lot of pain and is not eating or drinking very well.

    Any other magic ideas? It's so awful watching him hurt like this and not being able to make it better. In the meantime I'm making him whey protein smoothies with almond milk, peanut butter powder, banana, and added protein to get the most nutrition in him as possible when he can get something down. He's lost 20lbs over the last 70 days since diagnosis.
    Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
    5.10.17 - Initial diagnosis
    Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

    5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
    5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
    PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

    Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

    BEP#1 6.9.17 BhCG:77,721, AFP 34
    BEP#2 7.3.17 BhCG: 210, AFP: 6
    BEP#3 7.24.17 BhCG: 19 AFP: 3
    BEP#4 8.14.17 BhCG: 4.59 AFP: 5

    8.28.17 BhCG 2.46, AFP 6
    9.7.17 BhCG 1.78, AFP 3

    RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

  • #2
    TCMOM~So sorry, hopefully someone who had to use the moutwash can chime in soon. Grant did not have any mouth sores. The weight loss is common, hopefully Zachary will not drop too much more, but ...it very well may happen.You can also add whole cream for the fat/protein to the smoothies (per hospital Nutritionist at Pediatric Hospital).
    Son Grant
    dx 12/21/16 at age 17

    BEP x3
    Post Chemo CT Scan on 3/28/17 still showed a few nodes over 2 cm
    2nd Post Chemo CT Scan on 4/27/17 showed all nodes still over 2cm
    Post Chemo RPLND 5/8/17: Periaortic Teratoma, Intraaorticaval Teratoma, and Paracaval Teratoma found.
    Grant is enjoying his senior year in High School Cancer Free!

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    • #3
      I can't say anything about sores from chemo. I never got them, but I've dealt with canker sores most of my life and I know how horrible they can be. Recently I found something that basically numbs them. I would go to the grocery store and pick up some Alum in the spice aisle. I'd get a q-tip and put some alum on it and run the alum on the sore itself. Not going to lie for about 20-30 seconds it burns like hell, but then my sores would be numb for hours. Honestly since I started doing that I've been getting them far less. If nothing else works maybe give that a try. The worked on my mouth sores maybe they will help his.
      3/29/17 Diagnosed 100% Embryonal 4/10/17 Left I/O CT scan shows a few suspicious lymph (biggest 1.9 cm) 5/8/17 - 7/3/17 3xBEP 7/20/17 CT Scan Clear, AFP has uptick to 19 8/16/17 AFP Drops in half to 10, ALL CLEAR! 11/16/17 All Clear! AFP continues to drop!

      Comment


      • #4
        not sure if it helped me or will help sores that have already developed. But, I was recommended to gargle and swish with baking soda every time i brushed my teeth under the rationale that the alkanlinity will help prevent mouth sores. I followed through on this advice and did not experience any issues with mouth sores during my 3 x BEP.

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        • #5
          Thank you all for your replies - the sores are retreating it seems!! His mouth is looking much better so I think we are good - for now at least. I will certainly revisit these ideas if they come back though. - Thank you, thank you!
          Mom to Zachary - dx. at the age of 15 - Stage IIIC mixed germ cell
          5.10.17 - Initial diagnosis
          Baseline markers: BhCG: 43,882 AFP: 138 LDH: 328

          5.16.17 - Left Radical orchiectomy (total tumor size 7x5x4cm)
          5.31.17 - CT Scan showed mets to retroperitoneal LNs (5.7x6.4x9.4cm, 1.7x2.6x3.5cm, 3.1x4.5x6.1cm)
          PATH: Mixed germ cell (75% teratoma, 15% embryonal ca, 8% yolk sac tumor, & 2% trophoblastic tumor) Spermatic cord margin, neg. Germ cell neoplasia in situ present.

          Post-op markers: BhCG: 73,837 AFP: 38 LDH: 412

          BEP#1 6.9.17 BhCG:77,721, AFP 34
          BEP#2 7.3.17 BhCG: 210, AFP: 6
          BEP#3 7.24.17 BhCG: 19 AFP: 3
          BEP#4 8.14.17 BhCG: 4.59 AFP: 5

          8.28.17 BhCG 2.46, AFP 6
          9.7.17 BhCG 1.78, AFP 3

          RPLND 9.14.17 - path report showed 100% teratoma in nodes removed! ALL CLEAR!

          Comment

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