Noob with floor of mouth cancer

katlou

ozymandible said:

My husband passed away

My husband passed away recently so I've been too busy to post here. It has been extremely hard on all of us.  We made part of his final arrangements but I will have to wait on the rest until I get the finances in order.

  I have to continue our health insurance so I can finish my cancer treatment.  I am making my cancer treatment the number one priority right now.  There is so much to do regarding junk in the house-old papers and whatnot, moving accounts into my name and trying to gather old family photographs and artifacts to split amongst his blood relatives.  He kept every piece of paper that ever crossed his path all his life.  There are tax returns and check stubs almost as old as me.  Going to get it done before I start chemo and rads which is sneaking up on me quick.  I can't be messing with this during treatment.  It will definitely stress me out and might even make me sick.

Our family isn't very large and many of the people he knows are multiple hours and states away.  The kids want me to just concentrate on my treatment and leave things to his brother and daughter.  I will make the rest of the arrangements but after that I'm out.  This is all wearing me out and I haven't had a day yet where I don't go in between curling up in a ball and wailing or feeling like I'm going to vomit.  What little time I spent with them was extremely draining.  My husband would want me to focus on my treatment plan.

I have a list of dentists so I can make an appointment for me and my daughter.  Consultations for chemo and rads will be happening soon.  Don't know if I should go to the dentist before or after my consultation?  Do they have some kind of checklist or forms the dentist has to fill out?  Or do you just go to the dentist and explain that you have oral cancer and will be starting radiation?  What about the flap in my mouth?  What if they have no idea what to do about that?  Do I try and find someone who has dealt with oral cancer patients?

Thank you for reading.

So sorry for your loss

I just wanted to tell you how sorry I am for the loss of your husband and for what you are going through with your cancer treatment.  I can't even imagine the stress and grief you must be going through right now.  You are in my prayers.  

ozymandible

katlou said:

So sorry for your loss

I just wanted to tell you how sorry I am for the loss of your husband and for what you are going through with your cancer treatment.  I can't even imagine the stress and grief you must be going through right now.  You are in my prayers.  

Thank you for your kind words

Thank you for your kind words, katlou.

ozymandible

Quick update.  Went in for

Quick update.  Went in for the swallow study and everything looks great.  Went to the dentist last week and he couldn't take panoramic xray due to the massive  forearm flap covering my jawbone but said he will sign off on my radiation treatment as my gum pockets measure normal and what's left of my teeth looks pretty good. 

Was thinking about it the other day and remembered how I was in so much pain before surgery.  Now I don't really need pain meds anymore it just feels really weird on my neck and arm.

So maybe if it is in my jaw it's just a few cells like the Dr said and not spreading and growing too much.  I am having no pain whatsoever in my jawbone.  Isn't it extremely painful to have any kind of bone cancer?  So maybe I will pull through for a while.  That thought really cheered me up. 

ozymandible

Oh they also really

Oh they also really emphasized the need to do my exercises when radiation starts but since I am eating pretty much anything I want without incident maybe I'll be okay  not to do them for a while.  I am swallowing constantly already trying to get rid of this post nasal drip feeling from my sinuses to my throat.  The Dr told me my throat is probably irritated still from the surgery.  There are at least a dozen little staples still stuck in that area somewhere that I saw on the xray and that is probably adding to it.  He told me to really be mindful of clearing my throat or coughing or I might make it worse.

 

wbcgaruss

ozy Thanks

For the update. It seems things are going pretty well for you and for that we are thankful. Swallow study great, remaining teeth great, no pain meds needed so you are celebrating some positives through all this anyway-Take Care-God Bless-Russ

wbcgaruss

Thanks Mrgreen

For the nice posting and image explanation, I guess you would call it or maybe a diagram of the path to eternal life and salvation. Take Care-God Bless-Russ

 

ozymandible

Got my mask fitted the other

Got my mask fitted the other day.  They had to do it twice because it got caught on my hair.  Pro tip-if you have long hair tie it on TOP of your head so you're not laying on top of it and so it doesn't get caught on the mask when they're trying to fit it.

wbcgaruss

ozy Glad You

Got through it and got the hair issue worked out. It is certainly different to be fitted with one. I did it twice, probably one of the few on here that have been radiated twice. Well, at least you are ready for treatment and past that hump. When do you start treatment? Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

ozy Glad You

Got through it and got the hair issue worked out. It is certainly different to be fitted with one. I did it twice, probably one of the few on here that have been radiated twice. Well, at least you are ready for treatment and past that hump. When do you start treatment? Take Care-God Bless-Russ

I don't know yet.  Probably

I don't know yet.  Probably by the end of the month.  They still have to draw up the plan.  The way they're talking the party is gonna last all summer  long before it's over and starts to wear off.  I think they said it would be 33 rads and 4 chemos just to beef up the rads but it's not etched in stone yet so I don't know the strength and length of each treatment or what kind of chemo I'm going to get.  

I am really hoping if I am diligent with my exercises, manuka honey, calendula cream, swallowing exercises, topical painkiller and eating that I won't get too sore and have to do a peg tube and hoping chemo won't be too bad. We'll see what happens.  I still need to get my teeth cleaned even though the dentist examined me and signed off on my rads.  I was supposed to schedule that today but got sidetracked on a bunch of paperwork.

wbcgaruss

OK ozy

Keep us posted we're thinkin of ya and praying for ya-Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

OK ozy

Keep us posted we're thinkin of ya and praying for ya-Take Care-God Bless-Russ

Thank you Russ.  

Thank you Russ.  

ozymandible

I had my consultation with

I had my consultation with the chemo doctor today.  She expressed some concern regarding late start date as surgery was clear back at the beginning of March. I believe I was delayed due to getting COBRA started, making part of my husband's final arrangements and my referrals got dropped somewhere and I didn't follow up soon enough.  Plus 4 to 6 weeks for all my stuff to heal.

Chemo will be once a week "baby" dose of cisplatin to amp up radiation.  Chemo will worsen side effects of radiation due to the amping up.  I am to make arrangements for a PEG to be in place no later than four weeks from now and I may get a picc line if my veins get too crappy.  Nutrition and hydration were stressed as was swallowing for as long as possible.  Antinausea drugs will be provided and toward the end many pain meds will probably be required due to radiation side effects.

She has only seen a very few escape having to use a PEG.  Making noise about next week already.

Why does this scare me worse than my surgery did? 

wbcgaruss

ozymandible said:

I had my consultation with

I had my consultation with the chemo doctor today.  She expressed some concern regarding late start date as surgery was clear back at the beginning of March. I believe I was delayed due to getting COBRA started, making part of my husband's final arrangements and my referrals got dropped somewhere and I didn't follow up soon enough.  Plus 4 to 6 weeks for all my stuff to heal.

Chemo will be once a week "baby" dose of cisplatin to amp up radiation.  Chemo will worsen side effects of radiation due to the amping up.  I am to make arrangements for a PEG to be in place no later than four weeks from now and I may get a picc line if my veins get too crappy.  Nutrition and hydration were stressed as was swallowing for as long as possible.  Antinausea drugs will be provided and toward the end many pain meds will probably be required due to radiation side effects.

She has only seen a very few escape having to use a PEG.  Making noise about next week already.

Why does this scare me worse than my surgery did? 

ozy I Would

Recommend getting the PEG and not putting it off since your medical team recommends it. This can actually put your mind at ease knowing that if and when you get to the point of having trouble eating or not being able to eat at all for a bit you are covered, you got the PEG for your feeding backup. I have had 2 of them and I would say when I got the first one and you go home and look at it and think this is not really what I want, and I agree but it is where we are at in this situation. After a few days, you get used to it and forget about it pretty much and when it is supplying your nourishment when you can't eat for a bit, well now it becomes your friend. I have read on here where doctors would give patients options to hold off and during treatment, if you need one get it then but I can't imagine that. By the time you need one you are feeling lousy from treatment and with H&N  cancer many times your throat is sore and swollen somewhat and they have to put you under and do an endoscopy through your throat to your stomach to put one in. It is much nicer to schedule one and have it put in while you still feel good. They take just a small amount of maintenance if you are not using them just run a syringe of water through once a day to keep cleaned out. if you are actively using it you will put food, liquid medicine, or crushed pills mixed with water through it and run a rinse through afterward. I sympathize with you it is a huge amount of stuff you get hit with going through in this cancer journey. I myself was going along fine then suddenly had a sore throat that wouldn't go away and the next thing I knew I was diagnosed with throat cancer. Then the appointments start with scans, blood tests, the chemo doc, the radiation doc, then they wanted me to get a PEG, and also a port in my chest and all this hits you at once. Suddenly you are just an average joe living your life and now you are heavily into medical procedures and treatments but this is the only way you will beat this. I'm no expert but I would ask if you would be better off getting port as compared to a pic line. The port was under my skin in my upper left chest area and they would just push through my skin into the port thus saving any wear and tear on my veins and was I glad I went along with their suggestion as you get more intravenous stuff than you realize going through this. Besides chemo I was also getting fluids put in by infusion now and then to bolster my system during treatments and if you need other stuff infused or injected you are covered. I know this is a lot to take in and I know it was for me but if your team is recommending these things I would go ahead and get them I did and am glad I did and glad I had a medical team that knew what was ahead and what was best for me. As far as the feeding tube you will need something to hold it up when not in use and being active. My nurse navigator gave me a picture showing a solution. Take a pair of old underwear and just cut the elastic band off for your waist side is already a fit for you. If women don't give you good coverage then buy some men's briefs like Hanes or something they probably have a wider band to cut off. Just an FYI if you get to the point of ever needing to crush pills CVS and other drug stores have a good working cheap hand crusher that works great. I still use one today as I don't trust swallowing whole pills anymore because of getting stuck. Here is a link to look at an example of one  https://www.cvs.com/shop/cvs-health-pill-crusher-plus-storage-prodid-715079

Here is a link to an article going over the pros and cons of port vs picc  https://blog.mighty-well.com/2017/07/picc-line-vs-port-important-facts-to-know-before-making-a-decision/

I know this is a load ozy but be comforted that your team is looking out for you and what they suggest is a great help. You can do this we're pulling and prayin for ya-Wishing You The Best-Take Care-God Bless-Russ

ozymandible

wbcgaruss said:

ozy I Would

Recommend getting the PEG and not putting it off since your medical team recommends it. This can actually put your mind at ease knowing that if and when you get to the point of having trouble eating or not being able to eat at all for a bit you are covered, you got the PEG for your feeding backup. I have had 2 of them and I would say when I got the first one and you go home and look at it and think this is not really what I want, and I agree but it is where we are at in this situation. After a few days, you get used to it and forget about it pretty much and when it is supplying your nourishment when you can't eat for a bit, well now it becomes your friend. I have read on here where doctors would give patients options to hold off and during treatment, if you need one get it then but I can't imagine that. By the time you need one you are feeling lousy from treatment and with H&N  cancer many times your throat is sore and swollen somewhat and they have to put you under and do an endoscopy through your throat to your stomach to put one in. It is much nicer to schedule one and have it put in while you still feel good. They take just a small amount of maintenance if you are not using them just run a syringe of water through once a day to keep cleaned out. if you are actively using it you will put food, liquid medicine, or crushed pills mixed with water through it and run a rinse through afterward. I sympathize with you it is a huge amount of stuff you get hit with going through in this cancer journey. I myself was going along fine then suddenly had a sore throat that wouldn't go away and the next thing I knew I was diagnosed with throat cancer. Then the appointments start with scans, blood tests, the chemo doc, the radiation doc, then they wanted me to get a PEG, and also a port in my chest and all this hits you at once. Suddenly you are just an average joe living your life and now you are heavily into medical procedures and treatments but this is the only way you will beat this. I'm no expert but I would ask if you would be better off getting port as compared to a pic line. The port was under my skin in my upper left chest area and they would just push through my skin into the port thus saving any wear and tear on my veins and was I glad I went along with their suggestion as you get more intravenous stuff than you realize going through this. Besides chemo I was also getting fluids put in by infusion now and then to bolster my system during treatments and if you need other stuff infused or injected you are covered. I know this is a lot to take in and I know it was for me but if your team is recommending these things I would go ahead and get them I did and am glad I did and glad I had a medical team that knew what was ahead and what was best for me. As far as the feeding tube you will need something to hold it up when not in use and being active. My nurse navigator gave me a picture showing a solution. Take a pair of old underwear and just cut the elastic band off for your waist side is already a fit for you. If women don't give you good coverage then buy some men's briefs like Hanes or something they probably have a wider band to cut off. Just an FYI if you get to the point of ever needing to crush pills CVS and other drug stores have a good working cheap hand crusher that works great. I still use one today as I don't trust swallowing whole pills anymore because of getting stuck. Here is a link to look at an example of one  https://www.cvs.com/shop/cvs-health-pill-crusher-plus-storage-prodid-715079

Here is a link to an article going over the pros and cons of port vs picc  https://blog.mighty-well.com/2017/07/picc-line-vs-port-important-facts-to-know-before-making-a-decision/

I know this is a load ozy but be comforted that your team is looking out for you and what they suggest is a great help. You can do this we're pulling and prayin for ya-Wishing You The Best-Take Care-God Bless-Russ

Thank you for your response

Thank you for your response and encouragement.  I am feeling extremely overwhelmed today with everything.

I've made the appointment for the PEG consultation.  It will probably be put in just in time.

We did discuss piccs vs ports and she didn't seem to think I would need a port but my husband had one and he was very thankful for his.  He was much worse off than me though and was getting the maximum application of every type of cancer treatment imaginable.  He had fluids, antinausea meds, transfusions....

The one thing she was very adamant about was the PEG.

I have to stop worrying or that's going to get me before anything does!

Thank you for the links.  I will read them and go over your response again in case I missed anything.

 

SuzJ

Port

Get it, you won't regret it.

Make sure you get the 2 kinds of anti nausea meds, and the steroids for every chemo. Start the day of and do day after. (usually prescribed this way) Get crystallized ginger - taste not so great (to me at least) BUT it settles your stomach

You will need your own towels/utensils/dishes

Smoothies - Boost (they make one for women now?!?) banana, 2 scoops ice cream, carnation instant breakfast - blend, easily LOTS of drinkable calories - I never got the tube, I was told swallow as much as you can

I used the blender on everything, I made homemade chicken soup and froze in small amounts - I swear my stomach was the size of a grape. DO NOT do applesauce or juice! (Ascetic acid HURTS)

Dont think you'll do radiation early in the day and get it over with. Do it late, because that sucks everything out of you!

You will lose hair. From ears down. I had long hair and didnt really notice, but if I had to do today, with short hair I'd get pretty scarves, sun hats.. not a wig.

Nuking your neck will probably do a number on your thyroid, have them watch it.

Umm.. what else - I got Aloe Vera Gel by green leaf from amazon, and smoothed it on my skin, use SPF100 on your neck when not being radiated. - The radiation nurses always knows how to fix burns etc, they are awesome

I am sorry you are here, If there is anything I can do, let me know.

ozymandible

SuzJ said:

Port

Get it, you won't regret it.

Make sure you get the 2 kinds of anti nausea meds, and the steroids for every chemo. Start the day of and do day after. (usually prescribed this way) Get crystallized ginger - taste not so great (to me at least) BUT it settles your stomach

You will need your own towels/utensils/dishes

Smoothies - Boost (they make one for women now?!?) banana, 2 scoops ice cream, carnation instant breakfast - blend, easily LOTS of drinkable calories - I never got the tube, I was told swallow as much as you can

I used the blender on everything, I made homemade chicken soup and froze in small amounts - I swear my stomach was the size of a grape. DO NOT do applesauce or juice! (Ascetic acid HURTS)

Dont think you'll do radiation early in the day and get it over with. Do it late, because that sucks everything out of you!

You will lose hair. From ears down. I had long hair and didnt really notice, but if I had to do today, with short hair I'd get pretty scarves, sun hats.. not a wig.

Nuking your neck will probably do a number on your thyroid, have them watch it.

Umm.. what else - I got Aloe Vera Gel by green leaf from amazon, and smoothed it on my skin, use SPF100 on your neck when not being radiated. - The radiation nurses always knows how to fix burns etc, they are awesome

I am sorry you are here, If there is anything I can do, let me know.

Thank you for the information

Thank you for the information.  I really appreciate it.

ozymandible

Regarding pill crushers-when I came home from the hospital my wrist was sore and weak from surgery.  I quit using the pill crusher they gave me which is like the one you linked to.  Instead, I used a mortar and pestle.  (I was unable to use it when I first got home-daughter did it for me)It was much easier for me to use with my good hand and really got my meds ground up good.

wbcgaruss

SuzJ said:

Port

Get it, you won't regret it.

Make sure you get the 2 kinds of anti nausea meds, and the steroids for every chemo. Start the day of and do day after. (usually prescribed this way) Get crystallized ginger - taste not so great (to me at least) BUT it settles your stomach

You will need your own towels/utensils/dishes

Smoothies - Boost (they make one for women now?!?) banana, 2 scoops ice cream, carnation instant breakfast - blend, easily LOTS of drinkable calories - I never got the tube, I was told swallow as much as you can

I used the blender on everything, I made homemade chicken soup and froze in small amounts - I swear my stomach was the size of a grape. DO NOT do applesauce or juice! (Ascetic acid HURTS)

Dont think you'll do radiation early in the day and get it over with. Do it late, because that sucks everything out of you!

You will lose hair. From ears down. I had long hair and didnt really notice, but if I had to do today, with short hair I'd get pretty scarves, sun hats.. not a wig.

Nuking your neck will probably do a number on your thyroid, have them watch it.

Umm.. what else - I got Aloe Vera Gel by green leaf from amazon, and smoothed it on my skin, use SPF100 on your neck when not being radiated. - The radiation nurses always knows how to fix burns etc, they are awesome

I am sorry you are here, If there is anything I can do, let me know.

Great Info

SuzJ you really covered it. I am glad you remembered it and put it in such good order. I tried to write stuff down and keep a daily but afterwhile, I felt so crappy I didn't keep it going. Take Care-God Bless-Russ

ozymandible

Still haven't had any

Still haven't had any treatment scheduled yet.  Probably in the next week or two.  I was getting really worried until I read some of the posts here about delays in treatment.  Thank you everyone.  It's up to God anyway.  I've just got to keep on keeping on.  : ). I think the gabapentin I take might be taking the edge off of the enormous anxiety I've been having over everything.

The boy came over and helped with two oil changes.  I used to do them all by myself but it's been a loooong time so I was thankful for his help.  He took one of our cars to the car wash for me and gave the hedge a quick trim.  My daughter and I cleaned up our front yard and vacuumed our cars and my son's truck.  We also fed him some salisbury steak that my daughter cooked.  She is a very good cook now.  : )

 

wbcgaruss

I Am Glad

You have so much help. And you all have lots of energy. And this will make a big difference moving forward. You and the kids were very busy and it makes me tired just reading about it. Take Care-God Bless-Russ