Diagnosis Complete (95%) - Chemo/Rad Starting Next Week - Yikes!

Jaime61

Well its been interesting so far...to say the least

I am 60 yrs young and hate going to the doctor to the point that I just dont go...rarely....unless I notice/feel something is Doctor worthly wrong. Lo and behold late June/21 I noticed 3 lumps on the right side of my neck and under my chin.

Didnt have a Primary doctor ..hadnt needed one since the last prostate exam 5 years prior....that took about a month to get the appointment. Blood work didnt show anything abnormal...a sonogram recomended and scheduled the same day....the results..."hey.... you have 3 swollen lymph nodes"....basically not much to see....posible metastisees...refered to Oncologist....recommended an MRI...MRI came back P16 staining irregular carcinoma.....consistant with HPV and naso pharengeal...couldnt be certain...recommend further evaulation...Oncologist ordered a biopsy....

This is where it got painfull.....didnt take the full "drowsy" anethesea because I would have had to wait in recovery for an extra hour or two....so I took the locallized...OUCH that ffffing hurt....3 out of 5 biopsy pulls not bad...2 were excruciating....note to self ...get the full "drowsy" next time....who cares about the extra hour or two right?

Oncologist reads biopsies ..says HPV C...very common....probably at base of tongue...very treatable...off to PET Scan to confirm locations...

PET scan a breeze.....readings discussion with Radiologist.....hots spot show the cancer...ok sounds good...lets see....we start at feet all the up to lymph nodes....thats the first sign of hot spots ...thankfully no spots in the lungs for now at least not detected.....light hot spots in the mouth but Doc says thats from muscle movement from swallowing....hey why didnt you tell me not to swallow....I could have done that for the dursation....hot spot in the head...Doc said thats normal from brain activity....so no other hot spots detected??...what??...hmmm.....sooo off to schedule Rad/chemo...while ENT appointment set to try and find the C...moving simultanesly....I liked that ...save some time

Had my mask fitted and map done yesterday.....ENT appointment tomorrow.....Chem next Wed and every week for 8 weeks (seems like alot) - 35 Rad sessions starting next Wed after noon then every week day after that.....so after after 4 months of noticing the nodes here I am....about to start the treatment journey

Have read many posts here ....sorry if mine rambled on....it was theraputic to write it out....Im positive, good spirits for the most part, if it was only me it wouldnt be an issue for a second....but I started late with my first child of my own that is 9yrs now.....and that part weighs on me heavily....just take it one day at a time....it will be what it will be....until the expiration date comes ...sooner or later

 

 

 

 

 

motorcycleguy

Jaime,

Well, you're in the right place ... among other survivors here!

I personally got a LOT of support, advice and guidance, here - and I've always appreciated it.

Cancer treatment can be challenging, for sure. But, if one has support, and a great attitude, it's certainly something one can get through.

EAT EAT EAT - all of your favorites and LOT of them! (It can get tough to eat, after you're into treatment).

Radiation can seem intimidating, until you get used to it. Take good care of your skin. They should give you lots of lotions!!

Hang in there, and stay in touch here!

MG

PS (I can't tell what Harley you're on, there (Road King? Softail Deluxe?) - nice looking bike! How do you like the apes? I've been thinking about doing away with the "drag bars) on my Fat Bob - and going with some Black, Fat Mini-Apes. 

Jaime61

MG

Thanks brother....will be definately be coming back here for some support, advice and guidance.....and just to read/comment for others

Thanks for the tips...hopefully I will have enough energy to keep working out even if its just light excersise....I have been healthy and very active ...up to this point...hopefully that helps thru the process

Thats a 99 Fatboy....bought it with 500 miles on the speedo ...had it chromed out....love the apes...so glad I went that way...soo comfortable....my daughter loves to ride with me and has since she couldnt touch the pedals ...its one of my stress releases....

Stay healthy and ride safe!!

Jaime

motorcycleguy

Jaime,

You'll soon be getting a lot of advice and support on here, as soon as others see your posting; this is a great group!

My Cancer was NPC - so it's possible we have the same primary. It doesn't sound like it matters a lot, except the throat primaries seem to have a harder time with eating and swallowing.

It's the loss of taste that was much tougher than I expected. If you can't taste something .. you don't want to swallow it. It's hard to describe. That's why i'm not kidding EAT EAT EAT!

If you can exercise throughout your treatment, that would be a plus. I personally was able to work. But, keep in mind that treatment takes a LOT of energy - and you'll find yourself getting tired. Make sure you make time to get the extra rest you're going to need!

You appear to be a pretty positive, hardy person. That's an incredible gift to have, especially with your daughter. (I'm sure she's concerned about you!)

But, somehow, I have a really good feeling you're going to get through this OK!

MG

Those Fatboys and Heritage Softails are really popular bikes! I have the (2015 Dyna) Fat Bob, a Road Glide and a Sportster (that my son seems to ride more than I do, anymore...)

wbcgaruss

Well Jaime

It is definitely a well-laid plan your treatment team has laid out for you.
With plenty of testing and verification ahead of that.
The best plan is to take one day at a time.
For now, it's easy to be a multitask person but as the treatment beats you up one day at a time may look good.
Hopefully, you won't feel as bad as some but just prepare yourself.
Things to prepare for the possibility of are tiredness, nausea, constipation, diarrhea, thick mucous in your mouth, etc.
This is not to scare ya just prepare ya.
Check with your team more and they can give you a heads up as per your treatment regimen what to prepare for.
This is rough treatment just to let you know.
Not early on but 3-5 weeks in you start feeling the effects or somewhere around then.
But not to worry you can do this as many before you have.
We are here to help as well as we can so lean on us.
Please check out the Superthread at the top of the page-loads of info in there.
And at some point, you will end up with thickening, very thick saliva so you will need to rinse as often as necessary
with a salt/baking soda solution to stay ahead of it.
Mouth care will be very important now and for the rest of your life as an H&N survivor.
So I am wishing you the best and we are here to help.
And most importantly Pray a lot and trust in God.
The recipe for the salt solution is below.
And communication on mouth care during treatment from a hospital.
Take Care-God Bless-Russ

 

Mouth Rinse Recipes to Use During Chemotherapy

 

Soda and Salt Mouth Rinse

 

1/4 teaspoon baking soda
1/8 teaspoon salt
1 cup of warm water

 

Mix well until salt dissolves. Rinse your mouth gently, being careful not to swallow the mixture. Follow this with a plain water rinse to clean out any remaining salt or soda.

 

Soda Mouth Rinse: A Good Rinse for Before You Eat

 

1 teaspoon baking soda
1 cup of warm water

 

Mix well to dissolve the baking soda. This is a good rinse to use before and after a meal because it may soothe any mucositis pain you have, making it easier for you to eat well. Swish and spit, but don't swallow this mixture.

 

Saltwater Mouth Rinse

 

1/4 teaspoon salt
1 cup of warm water

 

Mix well to dissolve the salt. This saltwater rinse is close to the natural chemistry of your own saliva. This may make mouth sores feel better. Rinse well with plain water to remove excess salt.

 

Salt and Soda Rinse for Gummy Mouth

 

Some chemotherapy drugs can increase the acidity in your mouth, leading to thick saliva that can be very annoying. This rinse works well for "gummy mouth."

 

1/2 teaspoon salt
2 tablespoons baking soda
4 cups of warm water

 

This rinse will help to neutralize the acid in your mouth and will help dissolve or loosen thick, gummy saliva. Don't drink it, just rinse and spit it out.

 

Peroxide Rinse for Crusted Sores

 

If your mouth sores are crusting over, it's important to allow the natural healing process in your body to continue, so a peroxide rinse should be used for no more than two days consecutively.

 

1 cup hydrogen peroxide
1 cup water or
1 cup salt water (1 teaspoon of salt in 4 cups of water)

 

Mouth Care during Chemotherapy and/or Radiation Therapy
Patient Education

 

Mouth Care during Chemotherapy and/or Radiation Therapy
Patient Education
Chemotherapy and/or radiation therapy is meant to damage or kill fast-growing cancer cells;
however, normal cells can also be fast-growing and can be damaged by these treatments. The
lining of your mouth, throat, tongue, and gums are often affected by these treatments causing
tender gums, mouth sores, soreness in the throat, and possible pain or bleeding in the mouth
and throat. This is called mucositis.
Approximately 40% of people with cancer develop symptoms of mucositis. Most people will
begin developing symptoms about two weeks after treatment starts. Symptoms may get worse
during treatment, but they will slowly get better when treatment is over.
Full prevention of these symptoms may not be possible, but there are ways to decrease the
intensity of symptoms. Here are some techniques to decrease symptoms of mucositis.
Keep Mouth and Teeth Clean:
Gently brush your teeth at least twice a day with a soft bristled toothbrush and fluoride
toothpaste.
If your mouth hurts, use an oral sponge swab (toothette) instead of a toothbrush and
clean your mouth after each meal and at bedtime.
Rinse your mouth well.
Floss at least once a day, unless your physician tells you otherwise.
Do not floss if this is painful for you.
Homemade Mouthwash: Baking Soda/Salt Rinse
Recipe: Mix one quart (4 cups) of water with one teaspoon salt and one teaspoon baking
soda.
Swish and gargle well for 15 to 30 seconds and then spit out.
If you have a mild sore mouth, rinse every 2 to 3 hours.
You may be advised to increase rinses to once every hour if your mouth is very sore.
You may also dip your oral sponge swabs in this for cleaning your teeth if toothpaste
irritates your mouth.
Stanford Mouthwash (prescription required)
Swish and gargle well for 15 to 30 seconds and then spit out.
Use as prescribed by your physician.
Fluoride Toothpaste/Mouthwash
Avoid commercial mouthwashes that contain alcohol as they may burn your mouth.
If you have dentures, a bridge, or a dental prosthesis, remove and clean your prosthesis
each time you clean your mouth.
Leave your prosthesis out while you sleep.
If your mouth becomes irritated, keep your prosthesis out of your mouth as much as
you can.
To Decrease Dryness:
Biotene (alcohol-free) mouthwash can be used to decrease dry mouth.
When using Biotene, be sure wait at least 30 minutes after use until you eat, drink,
or use any other mouth care products.
This product will not work as well to decrease dryness, if anything else is used or
put in your mouth before 30 minutes.
Artificial saliva is available over the counter in many pharmacies.
This product may be used as often as necessary and may be swallowed.
Use a humidifier at home, especially at night.
Be sure to change the water of the humidifier daily and clean as directed.
To Lessen Pain and Soreness:
Eat small and frequent meals focusing on high calorie and protein foods. Liquid nutrition
supplements can also be helpful.
Aim to have something high in calorie and/or protein every 2 hours if you cannot
tolerate larger meals.
Avoid spicy, dry, and/or coarse foods.
Avoid acidic or citrus fruits and juices as they may irritate your mouth when you
have more sores.
Eat soft, moist, bland foods taken in small bites and chewed well.
Use sauces and gravy to soften food and increase calories, if needed.
Drink at least 2 to 3 quarts of water and non-irritating drinks (such as sports drinks.) Take
frequent sips of liquids throughout the day.
You may find it helpful to carry a bottle with you.
Use a water based lip balm to prevent lips from drying and cracking.
Avoid alcohol and tobacco products such as cigarettes, cigars, pipes, or chew.
These are very irritating and drying to a sore mouth.
When to Contact your Doctor or Nurse:
If you have a fever of 100.4°F (38°C) or higher.
If you are unable to eat or swallow due to pain.
If your current pain medication is not helping or your pain is getting worse.
If you have severe nausea and vomiting which you cannot keep anything you eat or drink
down
If you notice white patches in your mouth.
If your gums or mouth bleed longer than usual or will not stop bleeding.

 

Jaime61

MG

Looking forward to any and all advice, input, comments....even if they stray off subject a bit

Im a SEE Food eater ...love it all ...so hopefully I retain at least some desire....but could shed a few pounds that I have aquired ....the "C" diet here we come!

Im fortunate to own my own bizz...so I will be taking as much time as needed

Other than my wife...I have not told anybody about whats going on.....kids(daughter/step),family,friends, bizz associates etc....have asked wife not to say anything....I guess I am still processing things and how to go through this....dam engineering background..lol.....my initial thoughts are that I dont want the treatment/process/condition to be the topic of conversation or to be looked at any differently from family/friends

I am a positive person and have enjoyed the casual banter/humor with my 'new" caregivers that I have met....have always used humor to distress situations for others or me...I think I caught a few of the recent staff off guard with the humor....but they warmed up pretty quick realizing how relaxed I was .....after seeing the people coming and going out of the C offices...I would hate to work in this field of "C"....seeing all these people who I am sure going through a very challenging journey with a plethora of issues I cant imagine.....and then most staff having to be mostly stoic

Anyway....looks like you have a nice collection of toys to ride...thats awesome

Jaime

 

Jaime61

Thanks Russ

Greatly appreciate your kinds words, tips and advice....lots of awesome info to start the journey

Stay healthy out there!!

Jamie

 

BeagleDad

Conversations with friends

Jaime ... your comment about not wanting to be the topic of conversation have me another GREAT idea for a video.  I, too, own my own business ... a home comptuer repair business..I was terrifically worried about customers seeking helkp elsewhere assuming I was going to be a goner.  I tackled this from a completely different angle .... I got ahead of the conversation and then stayed ahead.  I wil be covering that topic in a video either today or this weekend.  I urge you to consider watchign and perhaps even subscribing as you are in the early stages and I think we can all be very helpful  - this is a great place to get the straight scoop from non medical folks that have been through (or are going through) the same experience.

Don - Beagledad

motorcycleguy

Jaime,

Well, you get started, tomorrow...

Treatment can certainly be a challenge, so I'm glad you have a strong, positive spirit!

Just remember - it's a process you pass through, and you'll be looking back on it, sooner than you think...

MG

I got the Road Glide out for a bit, this weekend. It's cool out, in Idaho!..

Jaime61

Beagle Dad

Thanks.....where can I watch the video....did I miss the link or your page?

 

Jaime

BeagleDad

Video

I posted it here in the forum ..I titled the subject with your name ... but here is another link.  Thank you for asking.  It deals more with your life than your cancer .. you had mentioned in your initial post about not wanting to be the topic of dicussion.  

I ask you to please cosnider "subscribing" (free) to my HNC cancer channel so you get alerted for future videos.  I often use topics and people's issues I read about here to create new ones. Also, liking , commenting, and subscribing helps them be found when other folks are doing searches for info.  thank you.

Don

https://youtu.be/szQXHzwxf1Y

 

Jaime61

BeagleDad

Ok thanks for the comment/info!! will do

 

Jaime

SuzJ

I didn't tell anyone..

I did it all, with only my son knowing, basically because I didn't want the "look"

I have learned, when someone tells you they are sick/have C.. dont say "I'm sorry" say "what can I do to help? what do you need?"

LitlCJdoll

Suzj

Right on, sister!! Suzj, you are so right.

Oh, I told people....some " friends" I worked with for over a decade, etc. And not one came to visit nor call!!! I called them.  One wanted me to drive 45 minutes to see her, her healthy. I was then Up to 67 pounds, could not drive yet

Etc ad nauseum.

I could tell you stories. I might

Suzj, there is actually an article titled " What cancer patients Want to Hear" and the sentence/ question you wrote here is one of them. Asking the person What they need, what help do they need.

You are so Right! Thank you for saying this , here.

Crystal

I'm Still in the hospital. ...

motorcycleguy

Jaime,

Dang, buddy - 36 degrees this morning in Idaho. I may not be able to get a bike out, this weekend. 

I hope it's nicer weather, where you're at - and you're able to get out a bit.

By the way, chemo can affect people in different ways, so be careful riding, until you know how it may impact you, temporarily.

I want you to be SAFE on that Harley!

MG

Jaime61

SuzJ

very good point about what to say.....I understand your feelings/desire to keep it between you and your son

Thanks

Jaime

Jaime61

LitlCJdoll

Thanks for the input and hope you are feeling better and out of the hospital soon!

 

Jaime

Jaime61

MG and Treatment/Lymph Node update

Thanks for the comments/encouragement

I have been doing lots of reading/studying and making some adjustments/changes (diet/supplements/schedule/routine) readying to go to war with the C

My scheduled chem/rad was cancelled for today and pushed out probably a couple months....the ENT I saw last week had discussions with the other Drs and the decision is to remove the 3 enlarged lymph nodes on my right side and try during surgury to locate the C first.....there is still a chance it may not be located...but if it is located... then Im told they can target the treatment rather than blast a total area of head and neck....

so meeting with the ENT this coming Monday and scheduling the surgery.....ENT said probaly take a few weeks to set up then about 3-4 weeks to heal before treatment.....which actually works out better through the holidays and gives me some time to blast my body with the nutrient/supplement program I just started.....

LET THE HEALING BEGIN!!!

Hopfully the removal of the nodes doesnt leave me too "lumpy" looking ...or I just might be gaining a new nickname!!!....bahahaha

 

BTW MG - Im in Phoenix ...sooo its riding weather here brother ....and yes ..have to be really careful riding during treatment process....sometimes my daughter and I just cruise the neighborhood ..side streets...putting along enjoying the breeze on the face and through the hair.....that might be all I can do..

Stay Safe out there

Cheers!

Jaime

LitlCJdoll

Everything just became Much Worse, today

Hello Jaime61,

Thank you for writing me.

No discharge yet because today a new test result showed that I have a new lung infection , on top of the one I was admitted for. And this one is worse because its drug resistent.

Well, my IV just failed... Its been in my right arm many days and now its blown the vein.  After. Being in many days. Looks awful...

I just had a 12 lead EKG, a few minutes ago because I became very short of breath this morning,  right in front of my 7 doctor team of Pulmonary docs. They had to hold me up to keep me from falling, so now I have a Fall Risk band on as well. More tests to come.

Switching my antibiotics. My Pulmonary team is now officially very worried.  Its a drug resistant infection.

It can easily take me out. I'm 70 pounds today.

Trying to beat one , and got hit with a new one, Not Good!

Thank you Jaime.

Keep us informed of your road ahead.  Also, please stay safe, as well. 

Drive on babe

CrystalJ

Jaime61

Hey there Crystal J

Wow.....you are truly a warrior... small but as you say "mighty" ...a tip of the hat to you, your strength, patience, positive outlook and determination.... and then during all of this time you offer your experience and encouragement to others and myself....thanks so much!

Im sure by now your "Team" is well aware your mightiness and will find something that works for you

Please keep us/me posted....my thoughts and prayers are with you to get well and back on your feet....the world needs your mightiness!!

 

Cheers!

Jaime

 

motorcycleguy

Jaime,

Suz and Crystal make a great point. I personally wasn't shy about telling people about my Cancer - and I was AMAZED at the offers for help that I got!!

(I recall a lady a little older than me, picked me up to take me to a chemo treatment. She said her night vision wasn't that good - so I drove TO the early morning appointment (and she drove me home)).

We both still laugh about that!!

Anyway, bud - you're into your first week, and I suspect you're kicking butt. The effects are a bit "cumulative", though - so be prepared. 

As I've mentioned, you seem like a very hardy, positive person. I'd have trouble believing that anything keeps you down for very long!!

MG