New to the forum

Sergio1

Hello fellow survivors!

I was diagnosed with stage 4 throat cancer in Oct. 2010. Finshed treatment in Dec. 2010. It has been 14 months since the end of (mis)treatment. Five CT scans later no cancer has re-occured. Numerous side effects persist, most likely till my death. Still waiting to recover my detection of sweet. Wonder if anyone out there that has gone through the chemo/radiation therapy of the throat can tell me about tasting sweet in their case. Is it possible it is gone for ever?

ratface

How sweet it is
It's coming Sergio, and it's going to be Sweet. Mine came back 10 times stronger, to the point of craving anything sweet. Chocoholics beware, because if the cancer didn't get you, the chocolate might? Welcome to the wacky side, post treatment.

Sergio1

ratface said:

How sweet it is
It's coming Sergio, and it's going to be Sweet. Mine came back 10 times stronger, to the point of craving anything sweet. Chocoholics beware, because if the cancer didn't get you, the chocolate might? Welcome to the wacky side, post treatment.

Sweet taste
Thanks for your prompt reply ratface. You give me some hope. Dry mouth, neuropathy, lymphedema, spasms, tinnitus, deafness to high-pitch sounds, hoarse voice and others don't bother as much.

D Lewis

Welcome Sergio
I'm closing in on two years out (end of May) from end of treatment for stage 4 base of tongue. Sweet is only just now coming back. I completely lost my taste for chocolate, but the other day, I tried some, and ... it's baaaaaack!

Wine still isn't what it used to be, as a lot of wines still taste like vinegar. I am optimistic, however.

Deb

Skiffin16

Schweeeet...
Like mentioned, sweet took the longest for me also.

Nearly two years before it started coming back with any consistancy...now at nealry three years, I'd say it's 100% back.

Saliva is nealry 100%, just a little dry at night during sleep. Taste is pretty much back 100% also.

Best,
John

Sergio1

Skiffin16 said:

Schweeeet...
Like mentioned, sweet took the longest for me also.

Nearly two years before it started coming back with any consistancy...now at nealry three years, I'd say it's 100% back.

Saliva is nealry 100%, just a little dry at night during sleep. Taste is pretty much back 100% also.

Best,
John

Taste and tolerance
After 16 months post treatment sugar tastes to me like seawater. I am unable to drink wine. Perhaps the lining of my mouth is still tender. The acetic acid in wine just dries me out badly. I can drink scoth and beer. In fact, 40% alcohol drinks stimulate my saliva. My Dr. tells me my saliva is gone for good (or actually for bad). The radation also fried my thyroid gland and now I have to take pills. Another lifetime gift of the treatment, which was more like a mistreatment.

Those who love me are very happy that I am not dead yet but occupying my body is not as fun as it used to be. One thing is certain, my experience with treatment was so severe (21 days in intensive care after 2 cysplatin infusions, loss of 50 lbs., no food by mouth for 6 months accompanied by incessant vomiting, nerve damage, teeth damage, and more...) that I will not seek treatment again if the cancer were to reoccur. Constant use of oxycodone for over six months left me addicted to the medicine but I can see why. The stuff is wonderful. Took me several weeks of no sleep and suffering to wean myself off the stuff. If cancer were to return I will surely collect a good supply of the stuff.

Skiffin16

Sergio1 said:

Taste and tolerance
After 16 months post treatment sugar tastes to me like seawater. I am unable to drink wine. Perhaps the lining of my mouth is still tender. The acetic acid in wine just dries me out badly. I can drink scoth and beer. In fact, 40% alcohol drinks stimulate my saliva. My Dr. tells me my saliva is gone for good (or actually for bad). The radation also fried my thyroid gland and now I have to take pills. Another lifetime gift of the treatment, which was more like a mistreatment.

Those who love me are very happy that I am not dead yet but occupying my body is not as fun as it used to be. One thing is certain, my experience with treatment was so severe (21 days in intensive care after 2 cysplatin infusions, loss of 50 lbs., no food by mouth for 6 months accompanied by incessant vomiting, nerve damage, teeth damage, and more...) that I will not seek treatment again if the cancer were to reoccur. Constant use of oxycodone for over six months left me addicted to the medicine but I can see why. The stuff is wonderful. Took me several weeks of no sleep and suffering to wean myself off the stuff. If cancer were to return I will surely collect a good supply of the stuff.

Side Orders...
A side of that to go please....

I answered you in another posting tonight.

I don't think your MD can definitively say you won't regain your saliva... Myself and others here have. For me (and others) nearly 100%...but it took all of two years (if not longer) to get to that point.

If you are saying that you are over a year out and have regained nothing, then it is a possibility you may have been dealt a short hand.

I know it's hard for you and I really feel for you.

But at the same time, attitude and staying (or trying) positive is huge.

I have seen so many that spiral down the road of feeling negative, and it is just so hard to get out of that ditch.

Have you tried any post counceling or support groups on helping with some of your depression and side effects.

I'm definitely not one that is preaching to you, but with so much that you have going on, a little support might go a long way.

Thoughts,
John

RayTodd

Taste
My first black coffee tasted like sweet flat white but spice kills me

NeoTheron91

So sweet
Sweet was the first one I can taste after 3 months of finished treatment.

Going away from the spice now, it's completely different taste and I couldn't stand it at all.

Side effects ...not sure how long going to last. Might be forever with new normal life style.

Cheers,
Neo

Kent Cass

NeoTheron91 said:

So sweet
Sweet was the first one I can taste after 3 months of finished treatment.

Going away from the spice now, it's completely different taste and I couldn't stand it at all.

Side effects ...not sure how long going to last. Might be forever with new normal life style.

Cheers,
Neo

Sergio
Sorry to hear you had such a rough go of it. Everyone is different. I had two 2-pump chemo sessions with Cisplatin and 5-FU, was too sick for rads in week #5, and started #6 in the hospital for 4 nights, but turned the corner while in that hospital and it was all systems go from there on, with the last rad in April of 09. I was able to return to regular eating some 5 months later, though taste had changed. Sweets took the longest time, but oh do I enjoy the spicey foods- a lot. Not sure about the alcohol thing, though, as I don't drink, and it's kinda common knowledge that alcohol and smokes are a major contributor.

Was wondering where you are, and went thru treatment- a major center, or small town? For you to end up in the ICU- does not sound like your med team did their job very well, to say the least, as it's their responsibility to get the Patient thru it all without such an ICU stay.

Hope and Pray things get better for you, and C stays permanently away from you.

kcass

Sergio1

Kent Cass said:

Sergio
Sorry to hear you had such a rough go of it. Everyone is different. I had two 2-pump chemo sessions with Cisplatin and 5-FU, was too sick for rads in week #5, and started #6 in the hospital for 4 nights, but turned the corner while in that hospital and it was all systems go from there on, with the last rad in April of 09. I was able to return to regular eating some 5 months later, though taste had changed. Sweets took the longest time, but oh do I enjoy the spicey foods- a lot. Not sure about the alcohol thing, though, as I don't drink, and it's kinda common knowledge that alcohol and smokes are a major contributor.

Was wondering where you are, and went thru treatment- a major center, or small town? For you to end up in the ICU- does not sound like your med team did their job very well, to say the least, as it's their responsibility to get the Patient thru it all without such an ICU stay.

Hope and Pray things get better for you, and C stays permanently away from you.

kcass

Treatment location
KCass I had my treatment at the Winship Cancer Institute of Emory Uinversity in Atlanta. I live 3.5 miles away. Why are you curious?

Sergio1

Kent Cass said:

Sergio
Sorry to hear you had such a rough go of it. Everyone is different. I had two 2-pump chemo sessions with Cisplatin and 5-FU, was too sick for rads in week #5, and started #6 in the hospital for 4 nights, but turned the corner while in that hospital and it was all systems go from there on, with the last rad in April of 09. I was able to return to regular eating some 5 months later, though taste had changed. Sweets took the longest time, but oh do I enjoy the spicey foods- a lot. Not sure about the alcohol thing, though, as I don't drink, and it's kinda common knowledge that alcohol and smokes are a major contributor.

Was wondering where you are, and went thru treatment- a major center, or small town? For you to end up in the ICU- does not sound like your med team did their job very well, to say the least, as it's their responsibility to get the Patient thru it all without such an ICU stay.

Hope and Pray things get better for you, and C stays permanently away from you.

kcass

Treatment location
KCass I had my treatment at the Winship Cancer Institute of Emory Uinversity in Atlanta. I live 3.5 miles away. Why are you curious?

Sergio1

Sergio1 said:

Treatment location
KCass I had my treatment at the Winship Cancer Institute of Emory Uinversity in Atlanta. I live 3.5 miles away. Why are you curious?

Staying positive
Skiffin, thanks for your kind words and advice. Not depressed just pissed.

Skiffin16

Sergio1 said:

Staying positive
Skiffin, thanks for your kind words and advice. Not depressed just pissed.

Cool Deal....
Now direct the flow towards kickin butt...cancer butt that is.

JG

Pam M

Hello
Congrats on your survivorship. I was diagnosed stage four base of tongue cancer a year before your diagnosis. Sweet came back for me fairly quickly. Like many, chocolate and ice cream took much longer. for a while, chocolate was too overwhelming when it came back. I'm with you on not loving the side effects/lingering changes from rads/neck dissection. On my ungrateful days, I whine.

Sergio1

Pam M said:

Hello
Congrats on your survivorship. I was diagnosed stage four base of tongue cancer a year before your diagnosis. Sweet came back for me fairly quickly. Like many, chocolate and ice cream took much longer. for a while, chocolate was too overwhelming when it came back. I'm with you on not loving the side effects/lingering changes from rads/neck dissection. On my ungrateful days, I whine.

"side effects"
What a term! It is kind of like: "pre-owned" or "non-alkaline" or "pro-choice". We seeme to not want to use the correct word as its meaning is too real. "used", "acid" or "kill" are harsher words. There is no "effects" on-the-side, it is actually permanent damage to systems and tissues of your body.

"modern" medicine has yet to discover a treatment for cancer that targets the bad cells. as an alternative they, poison and irradiate large areas of your body with noxious chemicals and semi-collimated x-rays that damage or destroy many uninvolved, healthy tissues. Nano technology is being tested to deliver poisons directly to the cancer cells reducing significantly peripheral tissue damage.

Skiffin16

Sergio1 said:

"side effects"
What a term! It is kind of like: "pre-owned" or "non-alkaline" or "pro-choice". We seeme to not want to use the correct word as its meaning is too real. "used", "acid" or "kill" are harsher words. There is no "effects" on-the-side, it is actually permanent damage to systems and tissues of your body.

"modern" medicine has yet to discover a treatment for cancer that targets the bad cells. as an alternative they, poison and irradiate large areas of your body with noxious chemicals and semi-collimated x-rays that damage or destroy many uninvolved, healthy tissues. Nano technology is being tested to deliver poisons directly to the cancer cells reducing significantly peripheral tissue damage.

Not So Sure...
Yes, we do get damage, but not all is permanent.

Even though healthy cells do take a hit, yes the good rapid reproducing cells. But as you mentioned also do the hosed up cells causing the cancer.

Thankfully the majority of healthy cells return healthy, while the bad damaged cells tend not to regenerate.

Even though it's definitely not a pefect mix to date. It's pretty much the best that we have at the time. And certainly much better than several years ago...at least in my opinion.

JG

Sergio1

Pam M said:

Hello
Congrats on your survivorship. I was diagnosed stage four base of tongue cancer a year before your diagnosis. Sweet came back for me fairly quickly. Like many, chocolate and ice cream took much longer. for a while, chocolate was too overwhelming when it came back. I'm with you on not loving the side effects/lingering changes from rads/neck dissection. On my ungrateful days, I whine.

Cancer location and HPV involvement
Pam, seeing your picture reminds me of a story to tell. At the end of 12 weeks of treatment, when I was at the bottom of my heath dip, I went to see my ENT surgeon. He said to me "I came here this morning to push you to surgery" then he (I am guessing) must have revisited my end-of-treatment scan and decided not to slice. At the time of diagnosis, I had a 4.5 (or was it 6.5?) cm cancerous lymph node in my neck just below the jaw. I had never noticed it and did not bother me in the least. All the symptoms I had was perdsistent sore throat that only bothered me when I drank OJ or wine.

While the radiation totally eliminated it, necrotic tissue could still be seen in the CT scan. The ENT Dr. told me that removing it was risky. That a nerve that controls the arm that passes through that area can be adhered to the dead cancer and if cut, the shoulder drops and you cannot lift that arm. In retrospect, I am glad my dr. decided against the surgery because at the time I felt so bad, that death seemed like a welcome occurence. Adding another "side effect" to my "treatment" was not something I was willing to do.