rons progress

janetluvsron

been a tough ride so far

first week was a tough one, mondays are long days starting with rads then labs and oncology appt and radiologist appt then 4 hours of chemo. first chemo was hell, fatigue set in immediately and was very tough week.

second week was slightly better but by tuesday pm hit the wall of fatigue and nausea, he tries to stay up on the nausea meds. oncologist decided to do hydration IVs , had 3 days last week at 3 hours at a time. this week he will try 2 days.

lost the salivary gland production so he does the chew chew chew sip chew sip chew chew chug gulp thing. but at least he keeps going.

taste is pretty much gone except he can taste chicken slightly. he also can taste ice cream and sugars.

He is more cooperative this week with eating and drinking, the first week I was worried and pretty much sure of a peg tube by this week, but he plugged along very well.

he got cranky and bitey one day, but stopped pretty quick.

so he naps and tries to do things and seems to be getting along.

went to our camper this past weekend and he got to play a round of horseshoes with our oldest army son who came out for the day. so all in all I think he is doing good now and MUCH better than the first week.

I am exhausted physically and mentally but doing good.

12 rads down of 39, 3 chemos done of 9.

one third the way done, woohoo, getting there.

thankyou all for the advice, the mugard, l-glutamine, magic mouthwash with vicious lidocain and food lists are a great help.

and most of all thankyou you all for being there to let me watch your postings and to answer my questions that no doctor in the world seems to understand

thankyou

god bless,

janet

janetluvsron

ps
he lost 4 pounds week one

ps

he lost 4 pounds week one and 5 pounds week 2.

I gained 8. sneaking in any fats and calories I can. I have to taste test, dont know why , he cant taste it.

alligatorpointer

Glad to have an update on Ron's progress

Nice to see the improvement in cooperation and food intake since that first week and that you have learned about some things that will help you both get through this.  Stay strong and believe.

CivilMatt

update

Janet and Ron,

Nausea is a bit_ _, but if you get in front of it and learn what works best, do it.  Keep swallowing and drinking water, dehydration (as you  know) blows you away.

As for food and eating, just find what works for you and  keep it up.  If it is real food, eat what you can, if it is soft food, get a blender, if it is liquids the drinks are on me.  Stay nourished!

Playing horseshoes is great exercise, but those naps sure felt good too.  Ron sounds H&N typical (if there is such a thing).  Remember to keep your team aware of any changes or new side effects, they will often have something for them.

1/3 done is great, I hope the road doesn’t get any rougher for either of you.

Best always,

Matt

janetluvsron

CivilMatt said:

update

Janet and Ron,

Nausea is a bit_ _, but if you get in front of it and learn what works best, do it.  Keep swallowing and drinking water, dehydration (as you  know) blows you away.

As for food and eating, just find what works for you and  keep it up.  If it is real food, eat what you can, if it is soft food, get a blender, if it is liquids the drinks are on me.  Stay nourished!

Playing horseshoes is great exercise, but those naps sure felt good too.  Ron sounds H&N typical (if there is such a thing).  Remember to keep your team aware of any changes or new side effects, they will often have something for them.

1/3 done is great, I hope the road doesn’t get any rougher for either of you.

Best always,

Matt

thanks matt ,
I did have to

thanks matt ,

I did have to use the blender with protein smoothies the first week, had a basic hamilton one, about burnt out the motor. checked into the vita mix one and about choked at the p rice. did find one that is called the ninja, it turned ice into a snow cone so I got it.

he eats soft foods so far and keeps going, we know that eventually he will get somewhat worse but are trying to prevent it. I watch rob and sandys posts and feel so bad for them and pray for everyone.

ron uses his compazine for nausea 2 full days during the week then its just fatigue. wednesdays and thursdays are horrible for him but then he starts to fell a little better come friday pm.

I do know that he rests and watches John Wayne movies A LOT. so he is upbeat and seems to be doing ok for now.

will be looking for those drinks at the end of this road!!!!!!

god bless you all,

janet

robswife87

janetluvsron said:

thanks matt ,
I did have to

thanks matt ,

I did have to use the blender with protein smoothies the first week, had a basic hamilton one, about burnt out the motor. checked into the vita mix one and about choked at the p rice. did find one that is called the ninja, it turned ice into a snow cone so I got it.

he eats soft foods so far and keeps going, we know that eventually he will get somewhat worse but are trying to prevent it. I watch rob and sandys posts and feel so bad for them and pray for everyone.

ron uses his compazine for nausea 2 full days during the week then its just fatigue. wednesdays and thursdays are horrible for him but then he starts to fell a little better come friday pm.

I do know that he rests and watches John Wayne movies A LOT. so he is upbeat and seems to be doing ok for now.

will be looking for those drinks at the end of this road!!!!!!

god bless you all,

janet

Still here Janet

Keep up the great work

It is tough, you will make it, he will make it.

This week has been much better. Rob has turned the corner. Actually ate a couple bite of pizza yesterday. Couldn't taste it but he said it felt good to chew and swallow food.

I gave him a swift kick over the weekend. After consulting here I had to tell him it was time to buck up and start doing things for himself. I told him if this is how he wanted to feedl for life that was fine but I needed to get my life back. He is now taking care of his feedings, his medicine, drinking more water, moving around and gettingoutside alittle more. He says all around this is getting to be a good week.

Hang in sweetie you can do this. HOping Rob is eating some soft foods come the 4th and we will have our annual BBQ. He said he is ready to take back his life.

Love to ya

Sandy

fishmanpa

janetluvsron said:

thanks matt ,
I did have to

thanks matt ,

I did have to use the blender with protein smoothies the first week, had a basic hamilton one, about burnt out the motor. checked into the vita mix one and about choked at the p rice. did find one that is called the ninja, it turned ice into a snow cone so I got it.

he eats soft foods so far and keeps going, we know that eventually he will get somewhat worse but are trying to prevent it. I watch rob and sandys posts and feel so bad for them and pray for everyone.

ron uses his compazine for nausea 2 full days during the week then its just fatigue. wednesdays and thursdays are horrible for him but then he starts to fell a little better come friday pm.

I do know that he rests and watches John Wayne movies A LOT. so he is upbeat and seems to be doing ok for now.

will be looking for those drinks at the end of this road!!!!!!

god bless you all,

janet

Discounts

Janet,

I don't know what your budget is but we "invested" in a Vitamix. They will offer a discount on a reconditioned 5200 (just a note from your doctor is needed). It came with a 5 year warrranty. Yeah, they're close to 10x the cost of many models but worth every penny IMO. The thing is an absolute beast! It even makes and cooks soup! 

You guys hang in there. 

"T"

 

 

robswife87

fishmanpa said:

Discounts

Janet,

I don't know what your budget is but we "invested" in a Vitamix. They will offer a discount on a reconditioned 5200 (just a note from your doctor is needed). It came with a 5 year warrranty. Yeah, they're close to 10x the cost of many models but worth every penny IMO. The thing is an absolute beast! It even makes and cooks soup! 

You guys hang in there. 

"T"

 

 

Blendtec

I sent them an email with our story and they offered a discount for a refurbished model.

I emailed back thanking them for the offer but that it was still way out of my price range and that it was thoughtful of them to offer the discount. 

They called me later on the phone and said they had others read the email and that they decided to send me one for FREE. It is do to arrive this week. I was actually crying on the phone that they would do such a great thing.

I will be sending it on to someone else for free that will need it and can not afford one when we are done using it. I believe in paying it forward.

Sandy

CherieLW

janetluvsron said:

thanks matt ,
I did have to

thanks matt ,

I did have to use the blender with protein smoothies the first week, had a basic hamilton one, about burnt out the motor. checked into the vita mix one and about choked at the p rice. did find one that is called the ninja, it turned ice into a snow cone so I got it.

he eats soft foods so far and keeps going, we know that eventually he will get somewhat worse but are trying to prevent it. I watch rob and sandys posts and feel so bad for them and pray for everyone.

ron uses his compazine for nausea 2 full days during the week then its just fatigue. wednesdays and thursdays are horrible for him but then he starts to fell a little better come friday pm.

I do know that he rests and watches John Wayne movies A LOT. so he is upbeat and seems to be doing ok for now.

will be looking for those drinks at the end of this road!!!!!!

god bless you all,

janet

Janet,
Glad to hear that

Janet,

Glad to hear that Ron's handling the treatments a little better.  I hope that continues!  Been praying for you guys and everyone else too.  I got concerned because my dad has lost 14 lbs already after 3 weeks.  He wasn't eating much at all.  My mom finally had a talk with his doctor while he was in the room and now I feel like dad is really working on taking better care of himself especially after the doc stressed the importance of it.  He told him it is now his job to take care of himself and eat (or drink food basically), it's not something he will enjoy.

Sandy- did you try mentioning your hubbs stubbornness to the docs?  I don't know if you did, but it could help. Either way- glad he is doing more for himself now! I'm sure that makes him feel a little better too knowing that even though he is depressed, he can still do things.  Just about every day my dad gets out and does something.  Even if its to go fishing where he can sit down and relax still.  It not only empowers him- but gives my family (well I'll speak for the family here lol) strength to stay positive and encouraging.

Still counting down dad's treatments.

1 chemo left (in about 2 1/2 weeks)

After today he will have 19 radiations left

I know the other day I really made his day by talking to my sister who I haven't spoken to in over a year.  He was so touched mom said he cried.  It made me feel good that he is able to find comfort in knowing I'm trying to work things out with her and forgive her.  Long story- but she is in prison until August 2015 so it was communication over the phone.  I know that she cares about dad and is scared bc she can't see him so I try to tell her to stay positive for dad and don't break down on the phone each time you speak to him. It's giong to take time to repair any kind of relationship with her...but I figure for now its one last thing my dad needs to worry about.  I felt really good knowing that he is proud of me for trying. 

Sorry for the rambling in that last paragraph.  This is just something that happened the other day so it is still NEW.

Hope everyone has a great day- better than yesterday!

Cherie

janetluvsron

thanks everyone,
I never

thanks everyone,

I never heard of blendtec, but will check into the vitamix suggestion and contact them.

today ron hit a wall, extreme fatigue, "biting" at people and just abear, but its wednesday and that seems to be the norm.

He goes in at 3pm for hydration IV so maybe friday will be better.

So good to hear Rob is doing better now Sandy. You, cheries dad and T are just ahead of us and I watch you alls progress. Prayers.

I only work 2 long days a week so I can keep up with ron , house , yard and lil one. But I have great babysitter and her hubby who are good friends.

They have been a lifesaver for us. Her hubby takes ron for treatments when I work and then sits in house with him when done just in case he needs any thing.

They usually watch John Wayne movies together. old farts. lol

hey cherie, understand about your sis, been there, some siblings just take the wrong path in life, all you can do is accept their problem and pray they straighten for

your dads sake.

god bless

janet

hwt

janetluvsron said:

thanks everyone,
I never

thanks everyone,

I never heard of blendtec, but will check into the vitamix suggestion and contact them.

today ron hit a wall, extreme fatigue, "biting" at people and just abear, but its wednesday and that seems to be the norm.

He goes in at 3pm for hydration IV so maybe friday will be better.

So good to hear Rob is doing better now Sandy. You, cheries dad and T are just ahead of us and I watch you alls progress. Prayers.

I only work 2 long days a week so I can keep up with ron , house , yard and lil one. But I have great babysitter and her hubby who are good friends.

They have been a lifesaver for us. Her hubby takes ron for treatments when I work and then sits in house with him when done just in case he needs any thing.

They usually watch John Wayne movies together. old farts. lol

hey cherie, understand about your sis, been there, some siblings just take the wrong path in life, all you can do is accept their problem and pray they straighten for

your dads sake.

god bless

janet

All good news

Glad to hear everyone is making great progress towards their goals. Janet, your first post made me smile thinking of the weight my husband gained by eating all of the things I thought I wanted but then couldn't or didn't want to eat. He finally got so uncomfortable in his clothes that he now agrees to throw away food and not clean both plates. I also related to your husband feeling so tired. Midway thru my tx, I gave in to sleeping 20 hours a day and it was never a restless sleep, just an exhausted sound sleep. By week 6 post tx, I had a bounce back in my step and more energy than I had before my dx. And, Sandy, what a nice outcome on the blender. I also believe in paying it forward...you will get just as much joy from giving the blender as when you receive it.  To Cherie, we all have a story, it's good to see that your effort to mend fences with your sister has made your Dad happy. Cancer makes us realize how important the people in our lives are.

Keep the good news coming!  

CherieLW

janetluvsron said:

thanks everyone,
I never

thanks everyone,

I never heard of blendtec, but will check into the vitamix suggestion and contact them.

today ron hit a wall, extreme fatigue, "biting" at people and just abear, but its wednesday and that seems to be the norm.

He goes in at 3pm for hydration IV so maybe friday will be better.

So good to hear Rob is doing better now Sandy. You, cheries dad and T are just ahead of us and I watch you alls progress. Prayers.

I only work 2 long days a week so I can keep up with ron , house , yard and lil one. But I have great babysitter and her hubby who are good friends.

They have been a lifesaver for us. Her hubby takes ron for treatments when I work and then sits in house with him when done just in case he needs any thing.

They usually watch John Wayne movies together. old farts. lol

hey cherie, understand about your sis, been there, some siblings just take the wrong path in life, all you can do is accept their problem and pray they straighten for

your dads sake.

god bless

janet

Janet,
Indeed.  I just

Janet,

Indeed.  I just realize that all the emotions (anger, hurt) I carry with me will not do me any good.  She is still my sister and I pray that she does turn around.  It will take time.  It's going to take her getting released to be put to the test to see if there has really been any change. I hope she has... I'm just glad it brought comfort to dad knowig that I'm tryng while he is going through all of this right now! My parents just retired early a few years ago and they deserve the best.  All they have had though is stress so I hope that after this cancer crap, everything is smooth running!  Best of luck to Ron! Tell him not to make you bring out your momma bear! lol

 

CherieLW

hwt said:

All good news

Glad to hear everyone is making great progress towards their goals. Janet, your first post made me smile thinking of the weight my husband gained by eating all of the things I thought I wanted but then couldn't or didn't want to eat. He finally got so uncomfortable in his clothes that he now agrees to throw away food and not clean both plates. I also related to your husband feeling so tired. Midway thru my tx, I gave in to sleeping 20 hours a day and it was never a restless sleep, just an exhausted sound sleep. By week 6 post tx, I had a bounce back in my step and more energy than I had before my dx. And, Sandy, what a nice outcome on the blender. I also believe in paying it forward...you will get just as much joy from giving the blender as when you receive it.  To Cherie, we all have a story, it's good to see that your effort to mend fences with your sister has made your Dad happy. Cancer makes us realize how important the people in our lives are.

Keep the good news coming!  

It sure does make you realize

It sure does make you realize a lot... I just want dad to have peace in knowing I'm trying! It's going to be a long time.  She wants me to come see her... it's hard, but I may just suck up what hurt I'm still dealing with and try.  I know this is something Dad has prayed for for a loooong time.  My older sister has no contact with her either, that may be a little longer and harder relationship to repair.  Everyone deserves a second chance, especially blood I guess.

janetluvsron

CherieLW said:

Janet,
Indeed.  I just

Janet,

Indeed.  I just realize that all the emotions (anger, hurt) I carry with me will not do me any good.  She is still my sister and I pray that she does turn around.  It will take time.  It's going to take her getting released to be put to the test to see if there has really been any change. I hope she has... I'm just glad it brought comfort to dad knowig that I'm tryng while he is going through all of this right now! My parents just retired early a few years ago and they deserve the best.  All they have had though is stress so I hope that after this cancer crap, everything is smooth running!  Best of luck to Ron! Tell him not to make you bring out your momma bear! lol

 

my older sons have called me

my older sons have called me the dragon lady all their lives. lol

ron has hit the wall, had the hydration iv but is extremely fatigued, but this is the norm for wednesday and thursdays.

I just look forward to next week, I only work 1 day and no rads on thursday due to holiday so maybe it wont be so bad next week,

 

cherie,

I am the youngest of 8, I didnt speak to one of my sisters for 10 years, by gones somewhat now. we talk on the phone once in a while, the other siblings wont even do that.

we used to have huge get togethers all the time when we were younger, but since dad died in 2004 cant get but 4 of us together at a time. I miss the old days, I caved and forgave, but cant forget, that is my demon. All I can do is listen and offer a gentle nudge in the right direction for her and pray she does the right stuff, for moms sack.

good luck,

janet

janetluvsron

week 4

started week 4,

no weight loss!!! and the lymph node seems to be getting smaller when they palpate it. so this week is starting off good. hoping it continues.

He still eats, I know it is getting uncomfortable for him and mucous is starting but he is still making himself eat. so proud of him.

He has learned that to get the fatigue under control he has to move. he walks at the campground and played horseshoes. he even mowed our postage stamp back yard.

17 rads down, 22 to go

4 chemos down, 4 to go.

 

he did start loosing his hair a few days ago and it upset him a little and he said his body was failing him. but I told him he will just be a

sexy solar powered love machine for a while. his dad used to always say that. lol

thankyou you all for the preventative tips and help.

He is using the mugard and I was skeptical at first but I think it is actually doing good, the doctors are surprised.

thankyou you all,

god bless you all,

janet

CherieLW

janetluvsron said:

week 4

started week 4,

no weight loss!!! and the lymph node seems to be getting smaller when they palpate it. so this week is starting off good. hoping it continues.

He still eats, I know it is getting uncomfortable for him and mucous is starting but he is still making himself eat. so proud of him.

He has learned that to get the fatigue under control he has to move. he walks at the campground and played horseshoes. he even mowed our postage stamp back yard.

17 rads down, 22 to go

4 chemos down, 4 to go.

 

he did start loosing his hair a few days ago and it upset him a little and he said his body was failing him. but I told him he will just be a

sexy solar powered love machine for a while. his dad used to always say that. lol

thankyou you all for the preventative tips and help.

He is using the mugard and I was skeptical at first but I think it is actually doing good, the doctors are surprised.

thankyou you all,

god bless you all,

janet

Janet,
Glad to hear Ron is

Janet,

Glad to hear Ron is having a little easier time right now.  Hope that continues.  Hair will grow back so that's a good thing!

Dad is hanging in there. I went to visit him last night and he looked really tired and exhausted.  After today...

14 rads left, 1 chemo left.  Can't wait til treatments over for everyone going through it.

Prayers,

 

Cherie

janetluvsron

week 5

started week 5, so far so good.

last week was hell, again, fatigued and that overfull feeling and nausea even with zofran and compazine, he hardly ate. he lost 4 pounds.

so far he has lost a total of 24.

still forces himself to eat at times, fights me with the ensure. but sometimes compliant.

has the "bronzing" of the neck now, looks like a dark red neck tan. He is using aquafor twice daily and aloe also.

I read him cheries post on her dads neck and how he is doing, next thing I knew he was lathering his neck and then to the kitchen

he went to eat anything he could. so thankyou for your postings.

21 rads down of 39

5 chemos of 9 done. he is just over halfway there!!!!

the dr says his mouth is great, no sores, pink and healthy and wanted to know what we were doing.

thankyou phrannie soooo much for the mugard suggestion, I firmly believe that is the trick. He salt and baking soda rinses 4 times a day, rinses and swallows l-glutamine 4 times a day and uses the mugard.

I was very worried after week 1 since that went so horrible. His attitude is great, gets grumpy mid week and then its hell thru sat am.

But, I am determined to push his but thru this kicking and bitc....g all the way. exhauting but will do what is takes.

God Bless all of you for your advice,

Janet

donfoo

janetluvsron said:

week 5

started week 5, so far so good.

last week was hell, again, fatigued and that overfull feeling and nausea even with zofran and compazine, he hardly ate. he lost 4 pounds.

so far he has lost a total of 24.

still forces himself to eat at times, fights me with the ensure. but sometimes compliant.

has the "bronzing" of the neck now, looks like a dark red neck tan. He is using aquafor twice daily and aloe also.

I read him cheries post on her dads neck and how he is doing, next thing I knew he was lathering his neck and then to the kitchen

he went to eat anything he could. so thankyou for your postings.

21 rads down of 39

5 chemos of 9 done. he is just over halfway there!!!!

the dr says his mouth is great, no sores, pink and healthy and wanted to know what we were doing.

thankyou phrannie soooo much for the mugard suggestion, I firmly believe that is the trick. He salt and baking soda rinses 4 times a day, rinses and swallows l-glutamine 4 times a day and uses the mugard.

I was very worried after week 1 since that went so horrible. His attitude is great, gets grumpy mid week and then its hell thru sat am.

But, I am determined to push his but thru this kicking and bitc....g all the way. exhauting but will do what is takes.

God Bless all of you for your advice,

Janet

trilled

Hi Janet,

Such a refreshing post. You have trained him well and he seems to be obedient and well trained now. LOL Really, Ron sounds like he is being proactive and doing as much as he can. If you start feeling sores and ulcers in the mouth, mine did not come along till later. Get a really good flashlight and start learning about each one each time you salt/soda rinse. You will see how they respond to various treatments. It goes a long way to fine tuning your efforts in the various techniques.

When I got the "sunburn" Aquafor worked great for me. I got lucky, yes I do have that word in my vernacular, and never got more than a couple spots that got pretty pink and sore but never any open wounds from the sunburn. I did get some silver silvadene and may have it used it a couple times but Aquafor did the job although it did linger for quite some time. Even today, I am 5 weeks post, I still see where the old skin came off and have fine wrinkles on my neck but no turkey neck I have heard some get. don

 

janetluvsron

donfoo said:

trilled

Hi Janet,

Such a refreshing post. You have trained him well and he seems to be obedient and well trained now. LOL Really, Ron sounds like he is being proactive and doing as much as he can. If you start feeling sores and ulcers in the mouth, mine did not come along till later. Get a really good flashlight and start learning about each one each time you salt/soda rinse. You will see how they respond to various treatments. It goes a long way to fine tuning your efforts in the various techniques.

When I got the "sunburn" Aquafor worked great for me. I got lucky, yes I do have that word in my vernacular, and never got more than a couple spots that got pretty pink and sore but never any open wounds from the sunburn. I did get some silver silvadene and may have it used it a couple times but Aquafor did the job although it did linger for quite some time. Even today, I am 5 weeks post, I still see where the old skin came off and have fine wrinkles on my neck but no turkey neck I have heard some get. don

 

Hi Don,
thankyou , I never

Hi Don,

thankyou , I never heard about when people started getting their sores, but I had seen the pix you had posted a while back and WOW that looked painful.

Did you use the lidocaine on them? and if so did it burn them?

Rons gums looked whitish grey to the rad dr and it wasnt a yeast or thrush so we are hydoflossing the gums now. hoping to get some more circulation in that area.

You are five weeks out , how is your eating? Ron will probably get thru this without a peg, we are hoping. He eats good , about 1200 calories regular food , about 2 to 3 days a week and then hard time on the others. he drinks without any problems. Its just that "full" tank feeling that you get when you know that one more bite will make you spew, and that can happen with only 2 or 3 bites.

He gets hydration IVs 2 times a week to help. The dr.s are agreeable to about anything I suggest. lol, I work in their peers offices.

3 and 1/2 more weeks to go!!!

God Bless you all,

Janet

 

donfoo

janetluvsron said:

Hi Don,
thankyou , I never

Hi Don,

thankyou , I never heard about when people started getting their sores, but I had seen the pix you had posted a while back and WOW that looked painful.

Did you use the lidocaine on them? and if so did it burn them?

Rons gums looked whitish grey to the rad dr and it wasnt a yeast or thrush so we are hydoflossing the gums now. hoping to get some more circulation in that area.

You are five weeks out , how is your eating? Ron will probably get thru this without a peg, we are hoping. He eats good , about 1200 calories regular food , about 2 to 3 days a week and then hard time on the others. he drinks without any problems. Its just that "full" tank feeling that you get when you know that one more bite will make you spew, and that can happen with only 2 or 3 bites.

He gets hydration IVs 2 times a week to help. The dr.s are agreeable to about anything I suggest. lol, I work in their peers offices.

3 and 1/2 more weeks to go!!!

God Bless you all,

Janet

 

Keep marching

Hi Janet,

I used two topicals for the oral sores, ulcers, and "patches". The patches are areas that get this sort of whitish/yellow spotted coating and it showed up most on the soft tissue at the back of my mouth but also a lesser coating on the roof which did not generate any pain. Topical Lidocaine is the liquid stuff you put directly upon the hurting area once you have done all your other rinsing and such. I never had any nausea issues so I could just apply and rub on the spots using my finger, even pressing my finger back into the deep corners underneath the base of the tongue. Once in awhile I would gag but minor vs the benefit of really getting the Lidocaine directly onto the sores which made a difference. Only thing about this is it does not last long so it really was most useful when I had a mouthful of sores and wanted to eat.

The other topical is a dental paste containing some medicine. The little tube says Triamcinolone Acetonide Dental Paste, USP 0.1%. You place a dab on your finger then quickly rub right on the sore and spread to cover it. It very quickly sets up and turns kind of waxy hard and once set is really not movable so over time you get the pace and timing to get it on and in place before it sets. It works well enough but none of the topicals have much long time effect.

The last oral treatment was the magic mouthwash and as I type I just swished and swallowed some as even at this 5 week post milestone an ulcer has returned to the back lower mouth under the base of the tongue. I have no idea why it has reappeared since all the mouth sores were banished awhile ago and not rads for even longer to provoke a return. Will ask MO this Friday.

My gums never changed color, so not much to say.

Hydroflossing as in using a waterpik? I forgot to mention this important tool during oral maintenance. My waterpik set came with this curved spoon attachement that sprays a wide arc of pressurized water. It worked WONDEFULLY to remove all the buildup on all surfaces including the ulcers and sore. It was a bit of an ouchie but you can dial it back with the unit. Sal/soda solution was used in the vessel. I'd say 1/2 teaspoon into warm water then stirring until well dissolved before using. This worked really really well and in my opinion beat back all opportunity for thrush to develop according to my understanding that it develops after infection or inflammation, like a second stage. So I worked really hard to keep the ulcers and sores from getting worse. I will say it was certainly painful at times. I would even "scrape" the sores directly to ensure everything was removed in order for the medicines and salt/soda etc to work directly on the affected surfaces. Again, I am no medical doctor so my mind can have run really wild and all this was just a placebo but as I mentioned in another thread, never discount the power of the mind over the body. If you deeply believe you are doing something to reduce the ulcer, I honestly believe you can make your body work subconsciously to apply extra healing there to do as you wish.

I love hearing the extra water fillups during the week. After early on, during induction chemo and chemo/radiation etting hit with dehydration I finally could feel when it was getting close. I asked my MO for a regular Friday infusion of saline to build back some hydration. This was in addition to the weekly chemo I received on Monday during weekly chemo during radiation. I never got dehydrated again!

As to eating, I am full on a PIG. At week 3, I could eat about 90% of days past but I just did not have any appetite and eating was a real chore, slow like a cow chewing cud, chew chew chew, sip, swallow, that sort of dance. During the past week, my appetite seems to have returned. For example, I whipped up some meat tacos last night. The meat I got from the mexican market, not hamburger, but real chopped steak. I pigged out - I think FIVE stuffed with meat and veges. I lost count. I put a lot of the creme (sour creme mix) in there to add moisture and less the need for extra sips. The tortillas were right off the oven and corn not flour but since so fresh very soft. This morning I made a SIX egg omlette with a 1/2 pound of mild sweet sausage fresh from the deli. Added mushrooms and some green onion and ate about half. I wanted my son to eat some but he sort of turned his nose at it. I used the tortillas and made omlette tacos. Yummy! Other half for tomorrow morning. So, clearly my appetite appears at this juncture about 100%. And if not for the current sore back there it would be a fully painfree experience. Having to fallback a bit to the soda/salt and MM swishes is hardly an inconvenience compared to the huge steps forward.

You really are doing great. Stay proactive, keep a positive attitude and keep driving; do not let it start swinging you around. Stay in control. It may seem like you are driving through an ice storm but you are moving and staying on the road so YOU are in control. I firmly believe once you lose or never gain control you are just a passenger going on Mr Toad's Wild Ride and will not get control until it is done with you and moves onto the next victim.

don

Mikemetz

janetluvsron said:

Hi Don,
thankyou , I never

Hi Don,

thankyou , I never heard about when people started getting their sores, but I had seen the pix you had posted a while back and WOW that looked painful.

Did you use the lidocaine on them? and if so did it burn them?

Rons gums looked whitish grey to the rad dr and it wasnt a yeast or thrush so we are hydoflossing the gums now. hoping to get some more circulation in that area.

You are five weeks out , how is your eating? Ron will probably get thru this without a peg, we are hoping. He eats good , about 1200 calories regular food , about 2 to 3 days a week and then hard time on the others. he drinks without any problems. Its just that "full" tank feeling that you get when you know that one more bite will make you spew, and that can happen with only 2 or 3 bites.

He gets hydration IVs 2 times a week to help. The dr.s are agreeable to about anything I suggest. lol, I work in their peers offices.

3 and 1/2 more weeks to go!!!

God Bless you all,

Janet

 

Try not to count

One of my survival techniques was not to count how many days and treatments I had left.  I took it the proverbial one day at a time, and let the days go by that way.  The reason why that is so important is because once the treatments end, the battle still goes on.  Other side effects and complications will happen way past the end of treatments, so you both need to see this as a long-term thing and that you'll have many more issues down the road.  Ending treatments is just the start of the long way back to the new normal as a cancer survivor--it is not the end of the road by any means.

Mike