Recurrence

TracyLynn72

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

That's great to hear!

That's great news!!  I pray for everyone on CSN each day!  It works!!

Skiffin16

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

First of Many...

For a while you are going to have various aches, pains, sore spots, unexplained events..., part of the journey.

It's always good to be pro-active and stay up on things lasting more than a few days.

You know your body better than anyone, but the body you have known for many years is abi-normal now..., so you have a new learning curve.

JG

fishmanpa

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

~Whew~

Great news!

Positive thoughts and prayers

"T"

phrannie51

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

Whoo Hoo BigT!!!

Glad you went to the ENT and got some peace of mind....every little change that happens to us becomes stinkin' thinkin' if it doesn't resolve in 2 or 3 days.....I'm the same way.

Now stick close to this forum....we're always here to help when things get scary.

p 

 

 

 

Ravimalhan

Very Happy For Big T

Hi Big T

 

i am very happy for you. May God bless you with good health. 

The bad dream is over. From now on , everything is going to be fine.

 

And everyone else on the group, huge thanks for being so supportive. You make my struggle bearable and encourage me to stay positive and give this a good fight.

 

i have resumed office and able to somehow last the whole day. Absence of voice is very sad and frustrating. My voic was my strength and I was one of the best speakers in the organisation. My voice defined my personality and now I just manage to whisper with great difficulty.

Any inputs as to when the voice will start returning to normal ? I finished my last radiation on 25 Aug.

Thanks once again for being so nice and kind.

KTeacher

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

Great news

My pain never went away, alas, recurrence.  Glad for you.  Keep up on the appointments.

Tim6003

Ravimalhan said:

Very Happy For Big T

Hi Big T

 

i am very happy for you. May God bless you with good health. 

The bad dream is over. From now on , everything is going to be fine.

 

And everyone else on the group, huge thanks for being so supportive. You make my struggle bearable and encourage me to stay positive and give this a good fight.

 

i have resumed office and able to somehow last the whole day. Absence of voice is very sad and frustrating. My voic was my strength and I was one of the best speakers in the organisation. My voice defined my personality and now I just manage to whisper with great difficulty.

Any inputs as to when the voice will start returning to normal ? I finished my last radiation on 25 Aug.

Thanks once again for being so nice and kind.

Great News Big T

HI Big T (and all you others who know me) ...

 

I used to be on this forum quite a bit ...heck, I was just as regular at P and John .... but caring for my mother has kind of swept me off of here, for now.

 

Anyways ....just wanted to chime in and say I can't tell you how many times I would make my way to a scan or office visit for my regular checkup and just wonder to myself how on earth the news could NOT be bad because of how I felt, a bump, a lump, a pain or something ...it ( by it I mean the  constant awareness of every pain, lump and bump) just never seems to end once you have been diagnosed with what we all have.

 

I was base of tongue stage III with one lymph node involved.  I had only Erbitux and radiation for treatments.  I was dx October 2011.  That same year, earlier in the year my dad and older brother (49) died of cancer ...so my diagnosis, especially at that time, was mentally hard on me in that my families track record of beating the beast was not good. 

 

Well I finished tx in January 2012 and to date I have been NED.  BUT I must tell you it seems I have had every scare you can have ...I've had "granulated glass and nodes in the lung" I've had a "uptick hot spot" on my vocals, I have my lungs ache, felt pain, even had some permanent swelling on the left side of my neck (a raised kind of lump) that turned out to just be the gift that keeps on giving.  I go for my next scan in October ...that will be my 2 year from dx anniversary month...and by golly I'm expecting good news (thanks to prayer and my wonderful family, online family here and church family) and of course my great team of doctors and nurses.

 

So hang in there Big T ...and others ...that little voice in our heads that seems to always whisper "cancer" can just go take a hike!!!  I will just keep whispering prayers for myself and my online friends and family here.

 

Best,

 

Tim

jim and i

BigT_1 said:

I saw the doctor yesterday and after examination he could see nothing that led him to believe the pain was due to a recurrence of the cancer.  Since the pain had gone away before my appointment he felt I had probably had a "viral event".  Does want to see me again in two weeks and depending on how I am doing may want to schedule an MRI but really doesn't think that will be necessary.

Thanks for all the positive comments and good luck to everyone.  I also agree with Nelson - pray daily and ask for the strength to recover completely.

Congrats. May you continue to

Congrats. May you continue to get good news.

Debbie

debbiejeanne

Tim6003 said:

Great News Big T

HI Big T (and all you others who know me) ...

 

I used to be on this forum quite a bit ...heck, I was just as regular at P and John .... but caring for my mother has kind of swept me off of here, for now.

 

Anyways ....just wanted to chime in and say I can't tell you how many times I would make my way to a scan or office visit for my regular checkup and just wonder to myself how on earth the news could NOT be bad because of how I felt, a bump, a lump, a pain or something ...it ( by it I mean the  constant awareness of every pain, lump and bump) just never seems to end once you have been diagnosed with what we all have.

 

I was base of tongue stage III with one lymph node involved.  I had only Erbitux and radiation for treatments.  I was dx October 2011.  That same year, earlier in the year my dad and older brother (49) died of cancer ...so my diagnosis, especially at that time, was mentally hard on me in that my families track record of beating the beast was not good. 

 

Well I finished tx in January 2012 and to date I have been NED.  BUT I must tell you it seems I have had every scare you can have ...I've had "granulated glass and nodes in the lung" I've had a "uptick hot spot" on my vocals, I have my lungs ache, felt pain, even had some permanent swelling on the left side of my neck (a raised kind of lump) that turned out to just be the gift that keeps on giving.  I go for my next scan in October ...that will be my 2 year from dx anniversary month...and by golly I'm expecting good news (thanks to prayer and my wonderful family, online family here and church family) and of course my great team of doctors and nurses.

 

So hang in there Big T ...and others ...that little voice in our heads that seems to always whisper "cancer" can just go take a hike!!!  I will just keep whispering prayers for myself and my online friends and family here.

 

Best,

 

Tim

tim, was glad to c u stop

tim, was glad to c u stop by!!  i hope ur mom is do'n alreght.  take care my friend and know that u r all n my prayers!

dj

phrannie51

Ravimalhan said:

Very Happy For Big T

Hi Big T

 

i am very happy for you. May God bless you with good health. 

The bad dream is over. From now on , everything is going to be fine.

 

And everyone else on the group, huge thanks for being so supportive. You make my struggle bearable and encourage me to stay positive and give this a good fight.

 

i have resumed office and able to somehow last the whole day. Absence of voice is very sad and frustrating. My voic was my strength and I was one of the best speakers in the organisation. My voice defined my personality and now I just manage to whisper with great difficulty.

Any inputs as to when the voice will start returning to normal ? I finished my last radiation on 25 Aug.

Thanks once again for being so nice and kind.

Ravi...

To me it's phenominal that you are already back to work....full time, no less!  Two weeks out of radiation means that healing isn't even in it's infancy stage.....(saying this, I mean that for the first two to four weeks out of radiation you are still "cooking").  Healing comes in small incriments.....and it cannot be measured in days....at best, small improvements over weeks, maybe months....Keep you expectations in line with what you've been through....and that is a LOT. 

Your voice may never be the same as it once was....but that will be part of the new you....your new normal.  Your personality will remain in tact....truly it will.  Five months from now, I think you'll be pleased to see that everything is falling into place, and your voice (even if altered a bit) will still have you as the best speaker in the organization.

p

Ravimalhan

Help Me Understand My Voice

Hi Everyone

You guys have been a great help. Especially P , who is such a sweetheart !!

You all know my case.

i am back at work. Full time. Playing some TT too. Generally fast returning to fully normal.

Give me your inputs about my voice.

When will it return ? When will I be able to speak clearly over the telephone ?

i am at a senior position in the Company and some guys are getting restless about my silence. I attend calls, take notes and am the first one to give my inputs. But......

Such is life....

What is the best way to get my voice back ?

i can feel the improvement but it is very slow....

In the second and third week of radiation, it was very good. When will it one back to at least that level...?

Any advice will be highly appreciated.

Love

Ravi

Skiffin16

Ravimalhan said:

Help Me Understand My Voice

Hi Everyone

You guys have been a great help. Especially P , who is such a sweetheart !!

You all know my case.

i am back at work. Full time. Playing some TT too. Generally fast returning to fully normal.

Give me your inputs about my voice.

When will it return ? When will I be able to speak clearly over the telephone ?

i am at a senior position in the Company and some guys are getting restless about my silence. I attend calls, take notes and am the first one to give my inputs. But......

Such is life....

What is the best way to get my voice back ?

i can feel the improvement but it is very slow....

In the second and third week of radiation, it was very good. When will it one back to at least that level...?

Any advice will be highly appreciated.

Love

Ravi

Only the Shadow Knows...

Ravi,

T is probably one of the better here to give you insight as he is in the music industry, along with Krash, Denis I believe and a few others...

Unfortunately I don't think anyone can answer your questions, at least no mortal...

Each of us are different, and each bring a mulititude of variables to the table.

The best answer that I can give is more than likely it will improve with time. It may or may not be what it once was.

I'm over four years post Tx, and I feel mine is back to normal (abi-normal for me)...

But I was never one that projected well to begin with.

You might try a speech therapist or someone similarly in the field on the professional advice on strengthening exercises and such.

Best,

John

Crazymom

Pains

I get strange pains in my neck on and off.  Everytime they come I think it is cancer.  After a while they go away.  The radiation and chemo have done a lot of damage and I suspect that causes a lot of the pain and other symptoms that hit us.  Try to calm down.  It is probably not cancer.  I have been NED for 18 months now and none of my worries with regards to these various side effects have turned out to be cancer.  Ann

Ravimalhan

phrannie51 said:

Ravi...

To me it's phenominal that you are already back to work....full time, no less!  Two weeks out of radiation means that healing isn't even in it's infancy stage.....(saying this, I mean that for the first two to four weeks out of radiation you are still "cooking").  Healing comes in small incriments.....and it cannot be measured in days....at best, small improvements over weeks, maybe months....Keep you expectations in line with what you've been through....and that is a LOT. 

Your voice may never be the same as it once was....but that will be part of the new you....your new normal.  Your personality will remain in tact....truly it will.  Five months from now, I think you'll be pleased to see that everything is falling into place, and your voice (even if altered a bit) will still have you as the best speaker in the organization.

p

With your prayers , I am recovering full speed

Dear P

Today I travelled from Mumbai to Delhi.

in other words , I have started out station tours and am fully back in the game.

My voice is also audible now. It is improving everyday.

Regular gargles is proving very beneficial.

Thanks for being such a brilliant support.

Lots of love and Regards

Ravi

phrannie51

Ravimalhan said:

With your prayers , I am recovering full speed

Dear P

Today I travelled from Mumbai to Delhi.

in other words , I have started out station tours and am fully back in the game.

My voice is also audible now. It is improving everyday.

Regular gargles is proving very beneficial.

Thanks for being such a brilliant support.

Lots of love and Regards

Ravi

Whoo Hoo Ravi!!!

Everything is going to get better and better and better.....you are on your way.  Five months from now, you'll have forgotten you even worried about your voice at all.

p

denistd

Crazymom said:

Pains

I get strange pains in my neck on and off.  Everytime they come I think it is cancer.  After a while they go away.  The radiation and chemo have done a lot of damage and I suspect that causes a lot of the pain and other symptoms that hit us.  Try to calm down.  It is probably not cancer.  I have been NED for 18 months now and none of my worries with regards to these various side effects have turned out to be cancer.  Ann

voice

Voice can jump up and down. I had SCC of the larynx (vocal cords) and had lost my voice prior to treatment. Had radiation and chemo, after the second week voice was detectable, after 4 weeks it was back. In the last ten days of treatment, they cranked up the power and pinpointed the tumor area, voice went. Two weeks after TX it started to come back. 4 weeks out was back. It's over 4 years now and my voice has been normal for nearly all of it. My voice was not as major a concern for me as it would be for T, I am retired now and don't sing for a living, except for myself. Hang on, it does come back, T has already performed. Denis

BigT_1

Crazymom said:

Pains

I get strange pains in my neck on and off.  Everytime they come I think it is cancer.  After a while they go away.  The radiation and chemo have done a lot of damage and I suspect that causes a lot of the pain and other symptoms that hit us.  Try to calm down.  It is probably not cancer.  I have been NED for 18 months now and none of my worries with regards to these various side effects have turned out to be cancer.  Ann

Turns out that the pain is back along with a lump on my neck.  Needle biopsy on the lump is positive for a recurrence.  Had a PET scan last week and shows positive for recurrence in soft tissue under my tongue.  Met with surgeon yesterday and scheduled surgery for end of the month.

Surgery is to remove lump and then saw the jaw in half at the chin and go in and remove the cancerous tissue and perform a Pectoralis Major Myocutaneous Flap to rebuild floor of mouth.  Not sure how much of the tongue is involved but swallowing will probably be affected and need PEG tube.

Can anyone lend information on this procedure?

 

longtermsurvivor

BigT_1 said:

Turns out that the pain is back along with a lump on my neck.  Needle biopsy on the lump is positive for a recurrence.  Had a PET scan last week and shows positive for recurrence in soft tissue under my tongue.  Met with surgeon yesterday and scheduled surgery for end of the month.

Surgery is to remove lump and then saw the jaw in half at the chin and go in and remove the cancerous tissue and perform a Pectoralis Major Myocutaneous Flap to rebuild floor of mouth.  Not sure how much of the tongue is involved but swallowing will probably be affected and need PEG tube.

Can anyone lend information on this procedure?

 

I have had pretty much exactly that

Back about three years ago.  Pretty stormy background, like yourself.  In my case the cancer was just under tongue, and I had failed conservative surgery, so this much more invasive procedure was planned.  They resected the floor of my mouth, and left tongue, which obvviously meant they had to divide my jaw and rebuild things after removal of tumor.  They used a large distal free flap from my forearm to do that, complete with muscle, vessels and skin. 

The surgery took about 14 hours to do, not that I was keeping time, lol.  I woke up a few hours later in ICU, which was planned for initial observation.  I had a tracheostomy, an NG tube for feeding, and a whole bunch of IV and  arterial lines.  I was on the ventillator for about 8 hours, but  graduated off that in a hurry and was transferred to the regular post op floor before 24 hours was up.  My trache was  completely out in 3 or 4 days and my NG in 8 or 9.  It was unpleasant, but not as bad by a long shot as you might imagine just thinking about it.  I don't get good pain control from intermittent IV boluses of narcotics, so I was on Oxy via my NG tube within 24 hours of surgery, and never needed a narcotic shot past that point.  I ambulated the ffirst day, and left the hospital to convalesce for a couple of months as quickly as you likely can leave afer this surgery.

As I had been previously radiated, it took awhile to heal.  The trache site bugged me for about a month, more really than anything else except for all the bandages I had to change several  times a day.  My voice wasn't as bad as you might imagine.  And it got better pretty quickly. 

I know it is pretty overwhelming to be in your positioin right now.  I've been there.  I'm still around to talk about it.  Life is good.  My best advice is just to sail into this and get it done.  Anticipation is far worse than what you will experince. 

My best to you

 

Pat

 

 

 

hwt

BigT_1 said:

Turns out that the pain is back along with a lump on my neck.  Needle biopsy on the lump is positive for a recurrence.  Had a PET scan last week and shows positive for recurrence in soft tissue under my tongue.  Met with surgeon yesterday and scheduled surgery for end of the month.

Surgery is to remove lump and then saw the jaw in half at the chin and go in and remove the cancerous tissue and perform a Pectoralis Major Myocutaneous Flap to rebuild floor of mouth.  Not sure how much of the tongue is involved but swallowing will probably be affected and need PEG tube.

Can anyone lend information on this procedure?

 

So sorry to hear

So sorry to hear. I recall the way I felt the day I was told of my recurrance, tough to take. It sounds like you have a definite plan and that in itself is a good thing. My initial surgery was replacing half my jaw with my fibula (fibula flap) so different from what you will be having done but sounds as if yours will also be a lenghty procedure (mine was 19 hours).  The actual surgery time was much harder on my family in the waiting room than it was on me. They kept me in a planned induced coma 4 days and then ICU close to 2 weeks. I don't recall much in the way of pain. Actually, I only recall about the last 2 days in the hospital. I had a feeding tube. Had a trach because they were worried about swelling but that was removed before I went home. My sister-in-law brought me a write board and that came in handy. When I was so drugged that I could not write, they wrote the alphabet on the board and I pointed at letters until they got it. They told me the skin graft would hurt allot but that pain only lasted a day or two, mostly when it was time to change the bandage. I imagine, if your tongue isn't too involved, it won't be as difficult on you as you might anticipate.

Prayers sent your way

Candi

debbiejeanne

BigT_1 said:

Turns out that the pain is back along with a lump on my neck.  Needle biopsy on the lump is positive for a recurrence.  Had a PET scan last week and shows positive for recurrence in soft tissue under my tongue.  Met with surgeon yesterday and scheduled surgery for end of the month.

Surgery is to remove lump and then saw the jaw in half at the chin and go in and remove the cancerous tissue and perform a Pectoralis Major Myocutaneous Flap to rebuild floor of mouth.  Not sure how much of the tongue is involved but swallowing will probably be affected and need PEG tube.

Can anyone lend information on this procedure?

 

i'm so sorry u have to battle

i'm so sorry u have to battle again.  i was shocked and discouraged when i had recurrence.  i had different cancer so i had 2 neck disections and total laryngectomy.  i've been cancer free since 2/28/12 and i'm do'n well.  waiting 4 surgery will b hard, at least it was for me.  i pray that u won't b n 2 much pain for 2 long and that you heal well and quick.  i'll be keeping u n my thoughts and prayers.  pls let us know how surgery went when u r able.  i hope time passes quickly for u.

God bless.

dj