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hisprincesstoo's Message Board Messages

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on being single and sharing this diagnosis with potential relationships, this is what I've learned.

HPV doesn't 'cause' cancer.  They don't fully know the connection.  in my reading, I believe it is just like anything else the immune system is already compromized, so cancer being the opportunistic thing it is, can thrive.

HPV is more common that most ppl realize.  It can be transmitted from any mucus membrane contact, not just sex.  the chances of getting it is very low if you haven't had sex nor your partner.  I don't know about all you, but I'm sure the number of ppl who have both made this decision is pretty small.  

by the time you have had multiple partners who have had multiple partners, that chance you have it shoot up to 90% quickly.  Plus there is no real test to say if you have it if it is not in an active mode.  You could very likely not have a clue you have it, had no symptoms.  The biopsy that showed us to have it was taken from the tumor.  what I was told is that the radiation kills it along with the tumor, so the chances of us giving it to someone else is actually less than the average person.  we are actually more in danger to get it from them is one way to think about it, though not exactly something I have told them  ;).

There are also over 300 different types of HPV.  Only a couple have this correlation with a tumor.  mine is 14, I don't remember the other 2 that is on this short list.  I have no idea if different ppl have multiple types.  I do know that my last pap smear checked for this, and was negative.

all this to let you know, all of us who are single here do have this type of reaction.  It is not an informed reaction.  One dr I talked to that spoke at a celebration of life for cancer survivors suggested I don't even bring it up, and she is the one who let me know I was in more danger than they.  I guess this is a personal decision.  I choose to inform also.  Is this why I"m still single?  not real sure, but for me honesty is the best policy no matter the consequences.  hmm  perhaps I need to check out a local throat cancer survivors group n see if there are any single guys there huh?  ;) lol

RE: fatigue

by hisprincesstoo - October 05 at 5:41 PM

one thing I haven't read here is the damage to the thyroid.  If it has gone hypo, this could explain a bit of fatigue.  Not sure everyone continues to check on this, but won't hurt to ask dr to check on next labs.

I started this hyper thyroid (4 years ago) and was normal after treatment, but went hypo last year, so continuing to check is a good thing.

RE: Peg tube

by hisprincesstoo - August 12 at 5:46 PM

On Aug 12, 2018 5:33 AM Sdurnell wrote:

Yes.  Some have another kind of anchor and require surgical removal, I believe.  And there are NG tubes that go in through the nose, and J-tubes that skip the stomach altogether and go straight into the jejunum.

Susan

I had a gtube n a g/j-tube that had 2 ends on both sides.   both went through the same outer tummy hole. when my first tube ripped out of the stomach they put in a new hole in the stomach.  I figure the angle was off and was quite uncomfortabe when I moved, especially laying down.  all 3 tubes I had were balloon.  

not sure all this makes sense  ;)

RE: Peg tube

by hisprincesstoo - August 10 at 3:19 PM

On Aug 10, 2018 4:34 AM Sdurnell wrote:

Get a balloon tube.  They don't really hurt at all to get out;  I did my own, twice;  once was accidental, the other time on purpose.

are there other kinds of tubes?

RE: Peg tube

by hisprincesstoo - July 18 at 5:26 PM

On Jul 18, 2018 7:32 AM Sdurnell wrote:

On Jul 14, 2018 10:40 AM reissens wrote:

On Jun 01, 2018 11:32 PM Shirleyperez wrote:

Is it painful to have a peg tube re owed from your stomach?smp

When i got mine removed i was already for quick out patient proceedure...nurse came in ..prep me ..she deflated baloon and out it came...took 5 seconds!! Now my scar looks like Iron man arc reactor!!!  My wife says i am a superhero now..lol..  but we all are on here!!

I call my scar my bullet hole.

lol  I call mine my second belly button.  Mine is an innie  ;)

RE: Peg tube

by hisprincesstoo - July 18 at 5:15 PM

On Jul 18, 2018 7:32 AM Sdurnell wrote:

On Jul 14, 2018 10:40 AM reissens wrote:

On Jun 01, 2018 11:32 PM Shirleyperez wrote:

Is it painful to have a peg tube re owed from your stomach?smp

When i got mine removed i was already for quick out patient proceedure...nurse came in ..prep me ..she deflated baloon and out it came...took 5 seconds!! Now my scar looks like Iron man arc reactor!!!  My wife says i am a superhero now..lol..  but we all are on here!!

I call my scar my bullet hole.

lol  I call mine my second belly button.  Mine is an innie  ;)

since Dec 1, 2001, I have trigeminal neuralgia . . the left side of my face is numb with no other symptoms.  no droopy face, no pain.  I also feel pressure in that ear.  It is constant, though.  I've been checked for all the 'normal' reasons for all this, but nothing was confirmed.  They concluded it was 'non specific', in other words, they don't know why, but it is numb.  Like you my body reacts different than most pple.  

With that said, I would check out the neurologist first myself.  there has got to be similar nerves going to the throat.  It could explain these symptoms, and a neurologist would be looking for something touching one of the nerves, which is all it takes to have something go numb.  The fact that it does go away could be a great sign.  It would only take a small swelling to touch a nerve, and if that does away with antibiotics, there is some kind of infection going on.

I'm curious, does this effect your swallowing?

I had 3 biopsies on my tonsils.

the first I was put under a general anesheshia . . was told they needed a big chunk for that one.  The 2nd one they were checking another hot spot & swollen area found on the other tonsil by my scan.  It was scheduled in the office the next day.  I was scared, but was told I could drive myself, not a big deal.  I wish I had someone else driving cause all the way home I was choking and gagging on my own phlem because the local also numbed my entire throat.  I had to pull over several times to get my breath and feel safe driving.  The biopsy itself was no big deal.  I thought I had an active gag reflex, but my ENT told me I was better than agerage.  The 3rd time I had someone drive, but didn't need to.  Go figure, right?  Even with the same person, the results can be different. 

I have a scope now every 6 months now.  I'm 3 1/2 years out and still NED.  although they feel funny, I've never had any trouble with them.

it is hard for me to chew things, the jaw gets very sore after just a bit of chewing . . can't do beef, but ham seems to chew easier, n I can also swallow it with the low saliva production. 

I get horrible cramps in the neck (all around)  and legs all around also .. even in my tummy . . I haven't tried massage for it, but I do try to work on my posture when it happens.  stretching when I'm without a cramp seems to help also.

these cramps have gotten worse over the last 3 n half year since treatment.  the bad ones didn't start till after a year.  the ENT says most likely is nerv damage and if they get bad enough I could get muscle relaxers.  I hate taking drugs, but if they get any worse, I'd sure be taking him up on that one to have them around for when I get them.  Thing is, they usually don't last that long, and by the time the drug kicked in would prob be done with it anyway.  go figure . . would love to hear of any other thing to check out.

RE: Peg tube

by hisprincesstoo - June 03, 2018

I never felt mine coming out.  it closed up right away, and the pain I was experiencing with it in went away after a few days.  I call my indentation my 2nd belly button  mine was place about 2" above my belly button . . so they are perfectly alligned.  My dr told me that would go away, but after 3 n half years,  I'm thinkin prob not . . :)

I do get a bit of twing of pain it I haven't totally cleaned it out for a bit.  goes away after the 2nd cleaning.  lol  I just clean em both at the same time.

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About hisprincesstoo

Patient
Lymphoma, Throat Cancer, Tongue Cancer, Tonsils Cancer
After Treatment, Alternative Treatments, Cancer Nutrition, Cancer Treatments, Chemotherapy, Emotional Support, Radiation, Side Effects, Spiritual Support

recently diagnosed with stage 4A tonsil cancer. Soaking in data, fighting panic and overwhelm at the magnatude of treatment. making decisions.

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