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Merkel Cell Carcinoma: I'd like to hear from others

Neuroendocrine Tumors (NETs) | Last Active: Jun 18 2:27pm | Replies (96)
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@lynn99

I’m almost halfway, I’ve had 13 treatments. The side effects hit me hard last week. Going on liquids today as I think it might be easier and less painful. Also looking for ideas to get rid of the metallic taste in my mouth. I can’t chew gum. lol. What are your fav protein drinks. I want something not full of sugar. Also not crazy about sucrose. Thanks

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Replies to "I’m almost halfway, I’ve had 13 treatments. The side effects hit me hard last week. Going..."
penlandtr1 | @penlandtr1 | Feb 18 11:12am

Hi.
Wish I had a better idea about food. The only thing that doesn't make me sick are icecream sandwiches 😤. I finished my 20th radiation treatment last Friday. Only 10 more to go. I got a referral to Fred Hutchinson cancer center in Seattle. Hope they have some better ideas, as I was told last week that the MMCC has spread to my ribs. Stage III. I try to stay positive with all of this. Good days and bad.

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rogermcintire | @rogermcintire | Feb 18 2:14pm

Hello Lynn, sorry the side effects have caught up with you. Has the Magic Mouthwash been prescribed for you yet? Rather than rinsing my entire mouth I found that using a cue tip and applying the medicine directly to the painful area worked best for me.
The only protein drink I could tolerate was Fairlife Chocolate and have to admit I wasn't too fond of this either.
Oatmeal (one half cup with cup of water) with honey (spoonful), raisins, Cinnamon and then milk to improve consistency became my go-to food when side effects were at their worst.
My OPDIVO immunotherapy infusions every two weeks haven't produced any side effects as of yet, fingers crossed.
Hang in there and keep your positive attitude, spring is coming and the walks in the woods are something to look forward to!

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