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Soooooooooooooooooooooooo (1 Viewer)

Dickies said:
Didn't mean to be inconsiderate @St. Louis Bob.  Definitely pulling for you here.  For whatever reason I've had more family friends and relatives diagnosed with cancer over the last 18 months than any other point in my life, so this thread hits home.  I've always tried to make light of the side effects like losing hair and focus on the potential long term positives, but It's typically not received all that well by them as they feel they are losing a part of their identity.  
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Heck no GB! No worries at all!

I am really sorry to hear that you are having to go through this with your family and friends. Hang in there. 

 
Sorry about your mom's turn, gb. :(

but guessing the apple falls into some trees with the stick and something something...she's probably a rockstar like you and will fight this with the same courage, grace and humor (and success!!) you are.

all the loves, gb- pulling and pushing for you to make a full and super speedy recovery.

 
St. Louis Bob said:
Still hanging in there but drained and nauseous all the dang time.  The meds they gave me help some but not much.  The best treatment is some of Dr. Malaise's Miracle Mystery Bars!  Give me an appetite, removes the nausea and helps me sleep.  God, here I didn't think I could love our GB anymore!

I had my 5th radiation treatment this week, this morning. Not to mention the chemo M-W.  That was 14 separate appointments in all.  Probably why I’m drained! 😊

My Mom was diagnosed with lung cancer in March 2020.  She just turned 71 this week, not a smoker.   Had half her lung removed right around that time.  We found out Wednesday that my Mom’s cancer has now spread, and she needs to get in herself for more tests.  That’s not exactly helping things either. Worried as can be about her and Dad.  :(

I was told that my beard hair will start to fall out next week (lousy, dirty, rotten 😊 ) and the pain from the radiation is probably going to intensify and it’s likely I’ll get sores in my mouth.   I’ve also noticed I’m already starting to lose my hearing in my left ear.  Of course Mrs. SLB says I’ve been hard of hearing for years! 😊

One week down, seven weeks to go!

Thank you all again for everything!  Still fighting with all my might!
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For nausea try hard boiled fully cooked eggs. For some strange reason it helped me. Don't let your stomach get empty. Several small meals a day focused on protein helped. 

Radiation is cumulative like chemo is. I was a lobster in those areas toward the end. I massaged pure aloe vera gel in then a cream called miaderm. Nothing helps the red but this combo made the discomfort not as bad. Your radiation oncology center may have samples. Mine gave me a ton free ones.

To help prevent mouth sores, mix 1 spoon baking soda in 1 c warm water. Swish in your mouth a few times until it's empty.  Also brush teeth after each time you eat. I did this per my nurse and no mouth sores.

So sorry to hear about your mom. Prayers out to her as well. Xx

 
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CurlyNight said:
For nausea try hard boiled fully cooked eggs. For some strange reason it helped me. Don't let your stomach get empty. Several small meals a day focused on protein helped. 

Radiation is cumulative like chemo is. I was a lobster in those areas toward the end. I massaged pure aloe vera gel in then a cream called miaderm. Nothing helps the red but this combo made the discomfort not as bad. Your radiation oncology center may have samples. Mine gave me a ton free ones.

To help prevent mouth sores, mix 1 spoon baking soda in 1 c warm water. Swish in your mouth a few times until it's empty.  Also brush teeth after each time you eat. I did this per my nurse and no mouth sores.

So sorry to hear about your mom. Prayers out to her as well. Xx
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Thanks so much.  They gave me Magic Mouthwash to deal with the sores. 

 
My wife is currently doing "minor" chemo right now but will go in for stem cell transplant around October with a high dose chemo.  Everything I've read is when she is getting this high dose chemo is to chew on ice while it is given.  This is supposed to prevent mouth sores.  Maybe ask your oncologist if this is worth trying?

 
yak651 said:
My wife is currently doing "minor" chemo right now but will go in for stem cell transplant around October with a high dose chemo.  Everything I've read is when she is getting this high dose chemo is to chew on ice while it is given.  This is supposed to prevent mouth sores.  Maybe ask your oncologist if this is worth trying?
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Yes chewing ice can help during chemo. But definitely also do magic mouthwash and or baking soda, and brush teeth after each meal.

 
Let me suggest to people getting chemo. This stuff causes neuropathy in many. What I did is place lunch sized ice mats under my hands and feet. On like 15 min, off 15 min, etc. Infusion centers should have fridge/freezers to store these. They also sell hands and feet ice gloves on Amazon. Forget the name. I didn't know that 6 years ago. I have a little tingling and numbness in my hands anf feet but feel it could be worse had I not taken that advice.

 
Bob, 'Scuse-Me-While-I-Whip-This-Out, SLB, Boomhauer MF, Compadre,

Just checking in to read a little. I'll admit, what you're describing sounds very difficult. With that in mind, please know that I'm sending as much love your way as I can for you and your mother. I hated hearing about your Mom however many months ago, and I sure as #### hate this, but just so you know, every time I see "Soooooooooooooooooooooooo" bumped I make damn sure to take note of the twenty-four "o"s there, and even when I'm not a reader, I'm there in spirit with you, bud.

You take care and God bless and everything that goes along with it.

To quote my own favorite movie that makes me laugh no matter what. "Good luck. We're all counting on you."

You got this. The plane might be out of your control right now, and ahead are some bad times, but you'll land it. And stick the landing, even.

Much love,

RA

 
St. Louis Bob said:
Thanks so much.  They gave me Magic Mouthwash to deal with the sores. 
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Hey GB- there are 2 types of magic mouthwash- 1 has lidocaine and is supposed to be swish and spit, and the other has no lidocaine, but is safe to swallow. The lidocaine version works better, but apparently can upset your stomach. If you end up with sores in your esophagus and you have the lidocaine version, it’s still ok to swallow. You can just see how it affects you, nausea-wise. Our kids don’t typically complain.

 
Tecumseh said:
Hey GB- there are 2 types of magic mouthwash- 1 has lidocaine and is supposed to be swish and spit, and the other has no lidocaine, but is safe to swallow. The lidocaine version works better, but apparently can upset your stomach. If you end up with sores in your esophagus and you have the lidocaine version, it’s still ok to swallow. You can just see how it affects you, nausea-wise. Our kids don’t typically complain.
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I was given Magic Mouthwash a few weeks ago from an urgent care center when I had pharyngitis (thought I maybe had Strep or covid). Stuff is awesome. It numbs your throat and punching bag thingie. 

 
SoBeDad said:
Do the mystery bars have miracle fruit, a small red berry that can make sour foods taste sweet?  It's tropical and grows in South Florida.

https://www.sbs.com.au/food/article/2019/05/13/miracle-berry-may-help-chemotherapy-patients-regain-their-sense-taste
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A follow-up. Mike Cusnir is a respected oncologist in Miami. He partnered with a small farm in south Miami Dade on tablets, raw fruit, and coated strawberry slices with miracle fruit, as an appetite stimulant.

>>The Miracle Fruit Farm is dedicated to supplying the highest quality berries to wholesale and retail customers throughout the continental United States. Presenting the world's first miracle fruit tablet designed by oncologist Dr. Mike Cusnir.  Products benefit cancer patients, chemo patients, diabetics, and dieters.

Miracle Fruit can mask the metallic flavor food gets after a chemo treatment, thereby acting somewhat like an appetite stimulant. By eliminating that intense metallic flavor the overwhelming sense of nausea and aversion to food vanishes. Chemo patients are able to enjoy a simple meal after using a Miracle Fruit, and this can help improve quality of life, reverse unwanted weight loss, and help speed recovery.<<

 
St. Louis Bob said:
Still hanging in there but drained and nauseous all the dang time.  The meds they gave me help some but not much.  The best treatment is some of Dr. Malaise's Miracle Mystery Bars!  Give me an appetite, removes the nausea and helps me sleep.  God, here I didn't think I could love our GB anymore!
Click to expand...
This post sponsored by......Baking Bad™ A Malaise Family Foundation specializing in pain relief, hunger generation and sound sleeping.  PM now for more information. 


;)

Love you, GB.  You keep breathing, I'll keep baking. 

 
SoBeDad said:
Do the mystery bars have miracle fruit, a small red berry that can make sour foods taste sweet?  It's tropical and grows in South Florida.

https://www.sbs.com.au/food/article/2019/05/13/miracle-berry-may-help-chemotherapy-patients-regain-their-sense-taste
Click to expand...
Could absolutely bake those into the bars if I could source them.  I made some blackberry/blueberry scones last summer that were outstanding - probably do the same thing here.  Just freeze them prior to baking.  How would I find these?

 
SoBeDad said:
A follow-up. Mike Cusnir is a respected oncologist in Miami. He partnered with a small farm in south Miami Dade on tablets, raw fruit, and coated strawberry slices with miracle fruit, as an appetite stimulant.

>>The Miracle Fruit Farm is dedicated to supplying the highest quality berries to wholesale and retail customers throughout the continental United States. Presenting the world's first miracle fruit tablet designed by oncologist Dr. Mike Cusnir.  Products benefit cancer patients, chemo patients, diabetics, and dieters.

Miracle Fruit can mask the metallic flavor food gets after a chemo treatment, thereby acting somewhat like an appetite stimulant. By eliminating that intense metallic flavor the overwhelming sense of nausea and aversion to food vanishes. Chemo patients are able to enjoy a simple meal after using a Miracle Fruit, and this can help improve quality of life, reverse unwanted weight loss, and help speed recovery.<<
Click to expand...


Huh.  Well, let's order some of these and find out what happens!  

 
Good afternoon!  I have had people asking what is going on with my life, so here you go! 😊

I finished my fourth week of radiation last Friday and as of right now scheduled for four more weeks.  On the same day all of my facial hair fell out so there’s somebody I don’t recognize staring back at me in the mirror!  I also have burns on my face and my multiple necks that looks really awesome. Our oldest son Calvin was shaken when he saw me.  He said it looked like an alien took over my body because it looks like me but not really.  Ha! 😊

My chemo was canceled last week because I’ve been suffering some side effects most notably a constant ringing in my ears and some loss of hearing in my left ear.  I’m getting a hearing test tomorrow afternoon that they will compare to the baseline to see how or if it should be treated.

I was scheduled to start a new chemo drug today, but I lost ten pounds since last Thursday and need to get my weight back up.  At issue is literally everything tastes horrible and that includes ice cream, bacon, cheeseburgers, even water!  It’s crazy because I have an appetite but at the very least everything tastes like metal.  Anything with texture tastes like cardboard dipped in metal.    I’ve been doing my best to drink and eat as much as possible but I’m obviously way behind.  I bought some Ensure on my way home today and hopefully that can get me back to where I need to be.

Thank you again for all of the love and support!

 
St. Louis Bob said:
Good afternoon!  I have had people asking what is going on with my life, so here you go! 😊

I finished my fourth week of radiation last Friday and as of right now scheduled for four more weeks.  On the same day all of my facial hair fell out so there’s somebody I don’t recognize staring back at me in the mirror!  I also have burns on my face and my multiple necks that looks really awesome. Our oldest son Calvin was shaken when he saw me.  He said it looked like an alien took over my body because it looks like me but not really.  Ha! 😊

My chemo was canceled last week because I’ve been suffering some side effects most notably a constant ringing in my ears and some loss of hearing in my left ear.  I’m getting a hearing test tomorrow afternoon that they will compare to the baseline to see how or if it should be treated.

I was scheduled to start a new chemo drug today, but I lost ten pounds since last Thursday and need to get my weight back up.  At issue is literally everything tastes horrible and that includes ice cream, bacon, cheeseburgers, even water!  It’s crazy because I have an appetite but at the very least everything tastes like metal.  Anything with texture tastes like cardboard dipped in metal.    I’ve been doing my best to drink and eat as much as possible but I’m obviously way behind.  I bought some Ensure on my way home today and hopefully that can get me back to where I need to be.

Thank you again for all of the love and support!
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God bless you, SLB.  I honestly don't know how you cancer patients do it.  

 
St. Louis Bob said:
Good afternoon!  I have had people asking what is going on with my life, so here you go! 😊

I finished my fourth week of radiation last Friday and as of right now scheduled for four more weeks.  On the same day all of my facial hair fell out so there’s somebody I don’t recognize staring back at me in the mirror!  I also have burns on my face and my multiple necks that looks really awesome. Our oldest son Calvin was shaken when he saw me.  He said it looked like an alien took over my body because it looks like me but not really.  Ha! 😊

My chemo was canceled last week because I’ve been suffering some side effects most notably a constant ringing in my ears and some loss of hearing in my left ear.  I’m getting a hearing test tomorrow afternoon that they will compare to the baseline to see how or if it should be treated.

I was scheduled to start a new chemo drug today, but I lost ten pounds since last Thursday and need to get my weight back up.  At issue is literally everything tastes horrible and that includes ice cream, bacon, cheeseburgers, even water!  It’s crazy because I have an appetite but at the very least everything tastes like metal.  Anything with texture tastes like cardboard dipped in metal.    I’ve been doing my best to drink and eat as much as possible but I’m obviously way behind.  I bought some Ensure on my way home today and hopefully that can get me back to where I need to be.

Thank you again for all of the love and support!
Click to expand...
I’m pulling for you man. Have they discussed prescribing marinol (or something more natural) to help with the eating?  Not sure if it helps with taste/texture, but it may be worth a try. 

 
if protein shakes are on the menu, you might try them.  NOEXPLODE!!  at least it will be cold metallic liquid, no chewing required.

love ya dude!!   keep on keeping on!!

 
St. Louis Bob said:
Good afternoon!  I have had people asking what is going on with my life, so here you go! 😊

I finished my fourth week of radiation last Friday and as of right now scheduled for four more weeks.  On the same day all of my facial hair fell out so there’s somebody I don’t recognize staring back at me in the mirror!  I also have burns on my face and my multiple necks that looks really awesome. Our oldest son Calvin was shaken when he saw me.  He said it looked like an alien took over my body because it looks like me but not really.  Ha! 😊

My chemo was canceled last week because I’ve been suffering some side effects most notably a constant ringing in my ears and some loss of hearing in my left ear.  I’m getting a hearing test tomorrow afternoon that they will compare to the baseline to see how or if it should be treated.

I was scheduled to start a new chemo drug today, but I lost ten pounds since last Thursday and need to get my weight back up.  At issue is literally everything tastes horrible and that includes ice cream, bacon, cheeseburgers, even water!  It’s crazy because I have an appetite but at the very least everything tastes like metal.  Anything with texture tastes like cardboard dipped in metal.    I’ve been doing my best to drink and eat as much as possible but I’m obviously way behind.  I bought some Ensure on my way home today and hopefully that can get me back to where I need to be.

Thank you again for all of the love and support!
Click to expand...
Thanks for the update. Wishing you all the best in your quest to kick cancer's ###!

 
bigbottom said:
I’m pulling for you man. Have they discussed prescribing marinol (or something more natural) to help with the eating?  Not sure if it helps with taste/texture, but it may be worth a try. 
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I've mentioned to many people the issues I've been having but nobody brought it up.  I'll ask again.  Thanks for the suggestion!

 
was thinking about you today and went looking for this thread ...and bam, new update!

that sucks about spooking Cal and losing the enjoyment from food to the point of not wanting to eat.  Here's a couple of articles with some thoughts on combatting that and a mouth rinse specifically for that issue.  

https://www.fredhutch.org/en/news/center-news/2014/05/Combating-chemo-mouth-experts-offer-tips.html?gclid=Cj0KCQjwg7KJBhDyARIsAHrAXaEqgloi3Qci0SwidBlSwOTeXLyDflDGdNACE7x3xfYCXiLADg8ygr8aArTkEALw_wcB

https://www.verywellhealth.com/metallic-taste-during-chemotherapy-513891

Metaqil - 4 out of 5 stars - you may to give it a try ...

stay tough man,  we know you will  - sure hope some of this helps.

 
Just like Binky, I thought of you today and was surprised by the update. Continued well wishes for you and your appetite. I wish I had something to recommend, but I don’t have anything. I guess just try and slam those shakes like I’ve seen you — and I did long ago — slam some good whiskey. Peace, Bob. Keep on keeping on no matter what your body looks like. Cat shirts beware! 

 
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Keeping you in my thoughts SLB.  
Despite the side effects you seem to have a genuine positive outlook.  In my opinion, that positive attitude goes a long way in helping you overcome.

Stay strong brother.  You got this!!!

 
St. Louis Bob said:
I've mentioned to many people the issues I've been having but nobody brought it up.  I'll ask again.  Thanks for the suggestion!
Click to expand...
Marinol is an appetite stimulant. If you're already hungry, it probably won't do much for you.

The tinnitus/hearing loss is a common side effect, typically with platinum based chemotherapies like carboplatin or cisplatin. Has that been part of your regimen?

 
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The times I have had medically induced everything tastes bad itis the 2 things that still tasted good:  Milk and pineapple......  Not a clue why but Ive lived on a milk and pineapple diet a couple times.  p.s. royally pissed me off when I forgot and wasted some serious coin on a nice steak that tasted awful due to a medical procedure.  

 
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Listening to Nile Rodgers's production of Diana Ross's Diana this morning. Hope the upbeat strains of "I'm Coming Out" are indicative of your mood this morning. 

Best, Bob. 

 
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