Lily's Cancer Blog

Update - Kelly is almost 2 weeks post-treatment

She made it.  I could have said she made it through with flying colors had it not been for a very significant screw up by the pharmacy at the cancer clinic.  Long story short, they mistakenly dispensed dexamethasone to be taken twice a day every day instead of twice a day on Day 1 only of her chemo treatment.  This was not caught for 10 days.  By this time her esophagus was so inflamed she could not eat or drink.  She ended up in the hospital for a week. 

After her esophagus healed she finished her treatment and now her side effects are the same ones everyone talks of here, burned, painful BMs, uncontrollable BMs, fatigue.  But it hasn't quite been two weeks and she's already feeling better and has even gone out on a couple of work-related calls.  She has lost a serious amount of weight, mostly because of that mistake by the pharmacy (which also wasn't caught by the oncology nurse that gave her the pills).  I think she's enjoying her skinniness but she knows she needs to put some weight on.  Her tastebuds have changed and she's not enjoying food like normal.  I wanted to ask you guys if this is permanent, or temporary?

Even though Kelly has not been on this forum herself, she knows I am and Ihave  passed along all kinds of info I learned here.  I want to thank you everyone especially the creator(s) of this blog.  People are so empowered when given the opportunity to come together and share and be supported.  

Lily

 

 

Shannon likes this post.
3 people threw a punch at your cancer.
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I can’t believe how badly they overdosed her medication, that’s frightening and infuriating! I’m so happy to hear she’s feeling better and was able to complete the treatment. As for the food question it’s a temporary change...food will eventually taste good again and many things will improve over the next months and year!
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I am so glad she made it through treatment despite the pharmacy error. Her taste buds will eventually come back to normal, but don’t be surprised if her preferences change for what she likes. As for diet right now. Small, frequent meals. Even if it is only two bites. Try the BRAT diet. Bananas, Rice, Applesauce, Toast. The goal is to stem the diarrhea, but keep stools soft and manageable. The pain with BMs can continue for a while. It’s different for everyone. Every day should get better.
Michele
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Appetite definitely came back about 6 months later, which makes sense, since the chemo and radiation stays active in the system that long. I had a new appreciation for food, nature and air, that stays with me now.
Hugs
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Glad that she made it through, but terrible mistake by the pharmacy! Should never have happened. As for food, this is definitely temporary and the taste will come back. Her intestines were also radiated which explains the uncontrollable BMs, so she will need to take it easy on them. Eat foods that are easily digestible. Stay away from nuts/seeds, popcorn, chips, corn, raw vegetables including salads, and hard to digest cooked vegetables. Think hospital type food - overcooked and bland, in order to create less stool. It also gives intestines time to heal when they are not working so hard. Also suggest using L glutamine powder - about 6 teaspoons a day dissolved in water or other liquid. Very healing for the intestines. Oh, and a good probiotic that contains L rhamnosus might help with diarrhea. As for weight, include good fats like mashed avocado, olive oil, and coconut oil/milk (in shakes is good). Be careful with dairy as that can be hard on the intestines too. She'll get through this, it just takes time.
D
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How terrible about the pharmacy screwup. I'm glad she's done with treatment and recovering. It will take some time for her to feel normal again, so patience is key.
Kim, Lily like this comment
Lily, thank you for reminding us all of Jill, the creator of this blog...who has a birthday tomorrow!

But what a horror story...can she manage some peanut butter on plain crackers...that got me through the early days of chemo recovery...it will get better!
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Lily, That's terrible about the mds mixup for your friend. I too have lost a lot of weight due too sores in my mouth from Chemo,went from 148 down to 102 and having a rough time putting some back on. Yes my taste buds changed a lot but slowly coming back. I found eating small amounts like 5 times a day fills me up,and slowly hope to gain some back. I'm 27 weeks out from end of treatment but assure you that it will get better.I'm 72 and fighting for my weight back,it will take time tho. Hugs to her! Sandy
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Depends, etc

Hi all,

As I recall, there are several different types and styles of Depends.  Any suggestions on the best type for Kelly?  She has had several really close calls due to terrible diarrhea, when she's travelling to and from radiation treatments.   Also, what type of bum wipes are best?  She's not burned yet (she's two weeks in) but will be in the very near future.

Thanks in advance.  What an awesome community and resource this is!

Lily

 

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Hi, I don’t have any suggestions about Depends, but I swear by the use of a water bottle to rinse instead of wipes...a radiation nurse handed me several of these lightweight plastic bottles with three holes on the nozzle...and to this day I still use warm water in this in lieu of paper / wipes because it’s more gentle on the skin. 🤗
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Have not used Depends...but carry wipes all the time! My rad onc recommended Domeboro powders (not prescription)...soak a gauze pad in the solution and leave it for about 30 minutes. I went through a box or two as the skin healed.
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Helen, what type of wipes? Normal baby wipes?
The wipes I carry now are for occasional accidents. One brand is "Always," which comes in individual packets so easy to carry one in pocket or handbag..
Lily, Lucky like this comment
I like "Costcos" "Huggies" wipes; gentle and large; I wouldn't flush them though.
Lily, Lucky like this comment
yes, also good...the package indicates they are not to be flushed...
I had a friend that had this issue and she asked the radiology tech to change her appt. time to 10 or 11 in the morning to avoid normal BM times. That was before lunch and well after breakfast. Then She just wore a maxi pad in ger panties. Not everyone has a problem with diarrhea during treatment so they had no problem changing times for her. I think it was someone from this blog.
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No baby wipes, too rough on the skin. Depends regular are very reliable. The key is to get clean as soon as she can with water bottles.
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During treatment I wore the ones that are a peach/pink color with the design on them. They fit the best. During treatment I got medicated wipes from my doctor that I used in the beginning but about half way thru I just got in the shower. There were no wipes or toilet paper that didn’t hurt really bad.
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I have a bidet, what a blessing that was. Aloe wipes are what I used for when I was out. I didn't need Depends, but did sit on a Chux in the car towards the end. RadioplexRx cream (prescription) is a miracle, apply to clean dry skin, and it heals and protects. Also can radiate thru it. I still use a dab after showering. ***Don't ever flush the wipes, no matter what the package says!***
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I used Depends. The soft ones like cotton. They have some with a plastic outer layer and that is too harsh. The ones I have show a purple ribbon on the front of them. Just like underwear.

My Radiation Doc also told me when I was burning to put cornstarch in my underwear. I got a small glass container with a sprinkle top. Sort of like what you use for parmesan cheese. I used it almost everyday on the Depends. I sprinkled a lot over the whole thing. It did help give me relief from the burning for a little while. It was enough to be able to have a break for an hour or more. They also recommend a lot of sitz baths too.
Lily, Lucky like this comment
I use the Depend Women’s, have for several years. They work great. I wear them to bed every night, even though most nights I don’t have accidents. But go without, and you never know. I used Kirkland moist towelettes, still do. Also Recticare (OTC cream) works great to numb the anal area during treatment.
Lily, Carol like this comment
Lucky likes this comment
Thank you, wonderful ladies. We had a successful trip to WalMart and your input was so helpful!
Easterly, Lucky like this comment
I really tried to stay away from those as they are made to suck the moisture out. I would wear a pair of unders to keep a distance from the skin. And moisture well with Aquaphor, when she absolutely needs to night time style, sometimes is a little higher in the back.
You are such a dear for helping!
Hugs
Lily, Lucky like this comment
I found the Always brand to be the best. I just visited a physical therapist after finishing radiation to get pelvic exercises. They should help.. Burt’s Bees wipes were the best if I can find them. You want something with the least harsh chemicals. Go natural.
Lily, Easterly like this comment
Most eipes irritated my anal area during treatment.

I ordered a bottle with an expandable tip to use for water rinses.

I carried soft wet paper towels or wet washcloths in baggies.

Now, 5 years out, I am better, but still sensitive. I use Kleenex wipes and love them. No irritation .

Also have found that the Summer's Eve sensitive...gentle wipes are good too. I like them because I can slip a couple in my pocket and be more independent.
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Vital Info

Posts

May 30, 2019

Canada

Cancer Info

Anal Cancer

Squamous Cell Carcinoma

April, 2019

Stage 3

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