Just diagnosed

NJShore

Gazebo78 said:

Stock up on some items

Kari, thanks for your words of advice.  Would you mind being a bit more specific about the kinds of items you stocked up on?

Thanks so much for your help.

Jim 

My personal pharmacy for my husband

Jim,

your mileage might vary, but here are some items I'd make sure i had on hand again!

childrens liquid Advil 

calendula cream 

100% aloe, no additives

a case or two of nutritional drinks (ensure, glycerna) as a start.. Try every version/ flavor, get your favorite

'very soft' toothbrushes - I replaced his every week due to possible germs, or thrush

talk to your dentist about tooth paste and mouth wash, ours supplied it.

Small water bottles - they fit in pockets!

a good back pack.. To carry the products in where ever you go.

a good thermometer, we got one that glides over the forehead

candy with xylitol (encourages salivation)

a humidifier that's quiet and directional mist.. We have one upstairs and one downstairs

a super fatted soap, that is gentle on sensitive skin.. I bought Basis

baby shampoo

We liked Mugard, there are entire threads on it. Mugard.com, our dentist helped order it.

glycerine suppositories

colace 

PEP-CID

Non acidic fruit juices, baby versions are more natural, less additives

pedialite

your favorite lip balm

clorox wipes.. Hit every light switch and door knob in the house.. Every counter where staff germs can live..

qtips and bacitracin (when you notice the saliva disappearing, it helps to coat the inside of the nostrils with bacitracin - it moisturizers the air as it passes by)

if I think of more I'll add some.. But I figured I didn't want to run to the store everyday, I wanted to be there for my husband.. And it helped to have these things before we got started.. Oh and maybe a bin to keep it all in!

and look at the super thread on top of the others.. That's pretty much where I learned what we might want on hand!

Good luck, Kari

 

Gazebo78

NJShore said:

My personal pharmacy for my husband

Jim,

your mileage might vary, but here are some items I'd make sure i had on hand again!

childrens liquid Advil 

calendula cream 

100% aloe, no additives

a case or two of nutritional drinks (ensure, glycerna) as a start.. Try every version/ flavor, get your favorite

'very soft' toothbrushes - I replaced his every week due to possible germs, or thrush

talk to your dentist about tooth paste and mouth wash, ours supplied it.

Small water bottles - they fit in pockets!

a good back pack.. To carry the products in where ever you go.

a good thermometer, we got one that glides over the forehead

candy with xylitol (encourages salivation)

a humidifier that's quiet and directional mist.. We have one upstairs and one downstairs

a super fatted soap, that is gentle on sensitive skin.. I bought Basis

baby shampoo

We liked Mugard, there are entire threads on it. Mugard.com, our dentist helped order it.

glycerine suppositories

colace 

PEP-CID

Non acidic fruit juices, baby versions are more natural, less additives

pedialite

your favorite lip balm

clorox wipes.. Hit every light switch and door knob in the house.. Every counter where staff germs can live..

qtips and bacitracin (when you notice the saliva disappearing, it helps to coat the inside of the nostrils with bacitracin - it moisturizers the air as it passes by)

if I think of more I'll add some.. But I figured I didn't want to run to the store everyday, I wanted to be there for my husband.. And it helped to have these things before we got started.. Oh and maybe a bin to keep it all in!

and look at the super thread on top of the others.. That's pretty much where I learned what we might want on hand!

Good luck, Kari

 

Personal pharmacy

Kari, this is incredibly helpful.  Thanks so much for the time to write this all down for me.

Blessings,

Jim

Gazebo78

Skiffin16 said:

SuperThread..
Jim, she is talking about the SuperThread...first thread on this forum.... It has tons of useful information, links, etc....

One of them is a huge list of things to have on hand... You don't want them all, LOL... But it'll give you a reminder of things you might not have thought of...

Essential Items List from SuperThread

Best,
John

SuperThread

Thanks John.  There is so much in that SuperThread, I couldn't find this list.

Blessings,

Jim

Gazebo78

Updated diagnosis

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Skiffin16

Gazebo78 said:

Updated diagnosis

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Fight for Life...

We all fight for life..., unfortunatley cancer is cancer...

You definitely have my Thoughts & Prayers Bro...

Just realize that even though the Dx is a little more involved than you thought, Tx is pretty much the same, and more than likely the results will be also...

There's many here that were STGIV and survived...

Stay positive, maintain some humor, and never give up.

Best ~ John

NJShore

Gazebo78 said:

Updated diagnosis

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Prayers and wishes!

Jim,

My husband was T2N2bM0 stage IVa tonsil cancer  at age 52... You are not alone, and as John said, just makes you want to fight harder! We were told the same, it's cure rate is very high!

prayers are with you!

Kari

phrannie51

Gazebo78 said:

Updated diagnosis

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Like John said....

there are many, many survivors on here that were Stage IV.....and the treatment isn't going to change at all.  Fighting cancer is fighting cancer....be it T2, T3, or T4.......It's hard after spending most of our lives fighting colds, flu, and the general germs that flow into our lives, to wrap our heads around the fact that what we have now is life-threatening.....I had a hell of a time putting my name in the same sentence as "cancer"....it just didn't fit!! 

You've got all our prayers and positive thoughts.....we know you're going to get thru this, and come out the other side ok.....it's just a long road.

p

donfoo

Gazebo78 said:

Updated diagnosis

Medical oncologist updated my diagnosis to Stage IVa (T4,N2, M0?).  The M is yet to be determined during next Tuesday's PET scan.  I had a swallow test with endocopy two days ago.  The video showed my base tongue tumor, abnormal growth on both the top and sides of my epiglottis and swollen membranse around the larynx opening.

They told me it is the most advanced form of throat cancer that they consider to still be curable with the local region "fully involved".  So a 2nd biopsy tomorrow, a PET scan next week then on to treatments.

I guess it doesn't really change anything but I feel like I went fom fighting to get well to fighting for my life.

Just want to ask for your prayers.  Thanks for being a plcae and a group of folks that will liisten and be supportive.  God bless you all in your struggles.

 

Jim

Same sitution

Hi Jim,

I am just abit ahead of you in that I just finalized my treatment plan a couple of weeks ago and started induction chemo this week. My staging was often opaque and was not clearly offered and more finessed to me as it turns out I am staged 4a or 4b and Mx, M?, M0, depending. In hindsight, I think the issue is what you have is curative or pallliative treament options. In other words, do the doctors vote to cure you or comfort you.

Until my MO presented my case to the tumor board, I think my case was on the line due to the PET showing spots on the lungs. I attended the board and felt strongly the positive feelings and statements that I was deemed curable. It was not until a day later I sort of dawned on me that the meeting yesterday was like the judge giving out  the life or death sentence to me. Sorry if this sounds so blunt but that is how it felt.

Having a clear treatment plan now is certainly more comforting as much of the uncertainly is gone as to which road you are on., The other things can be dealt with as they arise. The various symptoms and side effects, various ways to get food in, etc. 

Best to you from the bottom of my heart, Don

Gazebo78

donfoo said:

Same sitution

Hi Jim,

I am just abit ahead of you in that I just finalized my treatment plan a couple of weeks ago and started induction chemo this week. My staging was often opaque and was not clearly offered and more finessed to me as it turns out I am staged 4a or 4b and Mx, M?, M0, depending. In hindsight, I think the issue is what you have is curative or pallliative treament options. In other words, do the doctors vote to cure you or comfort you.

Until my MO presented my case to the tumor board, I think my case was on the line due to the PET showing spots on the lungs. I attended the board and felt strongly the positive feelings and statements that I was deemed curable. It was not until a day later I sort of dawned on me that the meeting yesterday was like the judge giving out  the life or death sentence to me. Sorry if this sounds so blunt but that is how it felt.

Having a clear treatment plan now is certainly more comforting as much of the uncertainly is gone as to which road you are on., The other things can be dealt with as they arise. The various symptoms and side effects, various ways to get food in, etc. 

Best to you from the bottom of my heart, Don

Same situation

Thanks for your encouragement.  I definitely feel like the team is committed to curative treatment so I am thankful for that.

Sorry if I sound like a whiner.  I realize I am not alone and many others have walked this road before me.  Thanks to all for your encouragement and frank advice.

Jim

phrannie51

Gazebo78 said:

Same situation

Thanks for your encouragement.  I definitely feel like the team is committed to curative treatment so I am thankful for that.

Sorry if I sound like a whiner.  I realize I am not alone and many others have walked this road before me.  Thanks to all for your encouragement and frank advice.

Jim

Jim.....just a FYI...

There is no such thing as "whining" here....we threw that word out!!  We all get scared and we all hurt in places along this road we're on.....everyone of us needs to vent or say how we're feeling....it's part of the process.  My Oncologist told me that the treatment we go thru for HNC is second to Bone Marrow cancer in terms of how tough the treatment is....You just feel free to say how you're feeling and we'll be here to buck you up .

p