FOR PUMAKITTY

stevenl

Just found out

I just found out my dad has IV tongue cancer. Is has spread to one lympe node in his neck. The Dr. said he would need radiation and Chemo. I think it will start around April 12th. I have found reading the posts very helpful.


March 30, 2010 - 5:11pm
stage IV

Hi Puma,

Glad to see you found your way here. There is a lot of good help and answers here. Sorry
your father has been diagnosed with this. I was dx Jan.15 with SCC stage IV,with right tonsil as the primary. I have 8 radiation treatments left and I am doing pretty well.
Just want you and him to know you are not alone. If you have questions ask them and the people here will help you. There are folks here that have had the same dx and are survivors.

Best Wishes,
Steve




Thank you
new

Steve,

Thank you for your message. It is all really scary right now. Did you have sugery to remove the lympe node. I am really worried that the outcome will not be good. When we asked the Ear, Nose and Throat Dr. he acted like it was not good. Have the radiation treatments been rough and did you get a feeding tube. Sorry to ask so many questions.

Kathy

stevenl

A few answers
Hey Kathy,

Wanted to start you a new thread so it's easier for people to see you are new and answer your questions.

Now in answer to your questions. I had right side neck dissection to remove the tumor and lymph nodes. That was Jan 22nd. Then I went and had 6 teeth removed by an oral surgeon.
The radiation treatments can hurt your jaw bones if you have bad teeth. My ENT referred me to the oral surgeon. My ENT told me that while stage IV cancer was not good, that I had a great chance of beating this monster. I also had a port and a feeding tube installed on Feb.17th. I then went to a regular dentist and had a deep cleaning and some implants put in because they would not have been able to do this after radiation started. I guess what I am trying to say is take care of his teeth now before rads start.

My treatment has been 6 treatments of chemo, Cisplatin and Flouruoracil every Monday and daily radiation treatments. The rads are bad, I will not lie to you. For some the chemo is worse and for some the radiation treatments are worse. I am doing fairly well compared to some who post here. Just hang in there and keep asking questions.

Thoughts and Prayers,
Steve

Pam M

Hey PumaKitty
I'm Pam. Does your dad have tongue cancer, or base of tongue cancer? I just finished treatment for base of tongue cancer two weeks ago (induction chemotherapy, then 7 weeks of radiation with chemotherapy). I had two lymph nodes affected, and did not have surgery. I'll be tested in April, then again in June to see if I have to have surgery.

As you already know, lots of helpful people visit this site. If you have any questions, just ask. I know for me, the more info I have, the less anxious I am (usually).

I think that most of us (me included) get a feeding tube - I hated the idea of having a feeding tube, but I'm very glad I let them put it in. I can't eat enough food to sustain me yet, but when I can, the tube will be removed.

Sorry your dad has cancer; glad he's got you in his corner.

- Pam

Hondo

Hi Puma

I would like to join in with Steve and Pam, welcome here to CSN, feel free to ask questions, a lot of us are long term survivors and life after cancer is very good.

All the best to you and your Dad Take care

Kent Cass

Hondo said:

Hi Puma

I would like to join in with Steve and Pam, welcome here to CSN, feel free to ask questions, a lot of us are long term survivors and life after cancer is very good.

All the best to you and your Dad Take care

A Second
A Second to Hondo's post. He has a wealth of experience and advice, Puma.

Like Hondo, I'm NPC. Showed with two tumors on the left-side of my neck: neither was surgically removed. Drs. used an aggressive chemo and rad delivery to destroy the tumors, and clean my head and neck. And, yes, had a feeding tube installed before any treatment, as well as a Port. I'm a 17-month Survivor, and still have both the PEG and Port. Have no regrets with either- both served critical importances in the course of my treatment.

Again- welcome

kcass

Pumakitty

stevenl said:

A few answers
Hey Kathy,

Wanted to start you a new thread so it's easier for people to see you are new and answer your questions.

Now in answer to your questions. I had right side neck dissection to remove the tumor and lymph nodes. That was Jan 22nd. Then I went and had 6 teeth removed by an oral surgeon.
The radiation treatments can hurt your jaw bones if you have bad teeth. My ENT referred me to the oral surgeon. My ENT told me that while stage IV cancer was not good, that I had a great chance of beating this monster. I also had a port and a feeding tube installed on Feb.17th. I then went to a regular dentist and had a deep cleaning and some implants put in because they would not have been able to do this after radiation started. I guess what I am trying to say is take care of his teeth now before rads start.

My treatment has been 6 treatments of chemo, Cisplatin and Flouruoracil every Monday and daily radiation treatments. The rads are bad, I will not lie to you. For some the chemo is worse and for some the radiation treatments are worse. I am doing fairly well compared to some who post here. Just hang in there and keep asking questions.

Thoughts and Prayers,
Steve

Thank you
Steve,

My dad has had dentures for over 30 years. He lost his teeth in a car accident. My dad is a really big guy and weight loss is not a real concern at this time. Was the surgery really rough. My dad does not handle pain and discomfort very well and that worries me. I have already started him on a soft food diet and he is not complaining. How long did it take to start having side effects from the radiation? Were you able to drive and do things during your treatment or did you need constant care.

I worry about not being able to care for him and work.

Also, Thank you to everyone that has communicated with me.

Pumakitty

Pam M said:

Hey PumaKitty
I'm Pam. Does your dad have tongue cancer, or base of tongue cancer? I just finished treatment for base of tongue cancer two weeks ago (induction chemotherapy, then 7 weeks of radiation with chemotherapy). I had two lymph nodes affected, and did not have surgery. I'll be tested in April, then again in June to see if I have to have surgery.

As you already know, lots of helpful people visit this site. If you have any questions, just ask. I know for me, the more info I have, the less anxious I am (usually).

I think that most of us (me included) get a feeding tube - I hated the idea of having a feeding tube, but I'm very glad I let them put it in. I can't eat enough food to sustain me yet, but when I can, the tube will be removed.

Sorry your dad has cancer; glad he's got you in his corner.

- Pam

Hi Pam
Pam,

My dad has base tongue cancer, I think. They continue to refer to it as tongue cancer with the tumor in the muscle. The Dr. said his throat was clear. I am not sure what course of treatment he will need. What is induction chemo. We meet with the Dr. on Tuesday.

stevenl

Pumakitty said:

Thank you
Steve,

My dad has had dentures for over 30 years. He lost his teeth in a car accident. My dad is a really big guy and weight loss is not a real concern at this time. Was the surgery really rough. My dad does not handle pain and discomfort very well and that worries me. I have already started him on a soft food diet and he is not complaining. How long did it take to start having side effects from the radiation? Were you able to drive and do things during your treatment or did you need constant care.

I worry about not being able to care for him and work.

Also, Thank you to everyone that has communicated with me.

Care
Hi Kathy,

The surgery that I had may be completely different from what your dad needs. Have they told you what the surgery will entail? As for putting him on soft food now, I would let him eat what he wants to keep his weight up right now. You say he is a big guy. I am 6' 2" and weighed 232 before surgery.
For me that really was about 30 pounds overweight. I am now at 208.

Radiation affects us all in very different ways. For some 1 week is enough to feel side effects, but I think it depends on the treatment regimen, chemo and rads combined, that has to be taken into consideration, before one can begin to know how it will effect them.

I was, and still am, able to drive myself to and from treatments. Through my whole process my doctors have been willing to help me stay ahead of the pain. That is giving me what prescriptions I need so that I am fighting the illness and not the pain. Make sure you and your father are comfortable with your team of doctors. This is most important. Keep asking questions and we will help you as much as we can. My cancer was in my tonsil and there are many people here that have survived tongue cancer that can help you with specific things about your dad's cancer that I can't.

Bless you Kathy,
Steve

Pam M

Pumakitty said:

Hi Pam
Pam,

My dad has base tongue cancer, I think. They continue to refer to it as tongue cancer with the tumor in the muscle. The Dr. said his throat was clear. I am not sure what course of treatment he will need. What is induction chemo. We meet with the Dr. on Tuesday.

Induction Chemo
Pumakitty,

For me, Induction chemo was "big" chemotherapy. I had three chemo drugs that I got (Cisplatin, Taxotere, and 5-FU). It took all day (til like 4:45) to get the Taxotere and Cisplatin and drugs to fight side effects into me via IV at the cancer center. At the end of that day, I'd go home, and a traveling nurse would come to the house and hook up a portable pump to me that pumped the 5-FU into to 24 hours a day for 5 days; at the end of day 5, she'd come back and take the pump off me. 3 weeks later, I'd get the same three drugs. I did this three times. Three weeks later, I started radiation 5 days a week with "small" chemotherapy of one drug only (carboplatin) once a week.

Good to hear your dad's throat was clear - mine was not. I hope it is now - I'll have to wait to find out.

Hang in there.

Pumakitty

Pam M said:

Induction Chemo
Pumakitty,

For me, Induction chemo was "big" chemotherapy. I had three chemo drugs that I got (Cisplatin, Taxotere, and 5-FU). It took all day (til like 4:45) to get the Taxotere and Cisplatin and drugs to fight side effects into me via IV at the cancer center. At the end of that day, I'd go home, and a traveling nurse would come to the house and hook up a portable pump to me that pumped the 5-FU into to 24 hours a day for 5 days; at the end of day 5, she'd come back and take the pump off me. 3 weeks later, I'd get the same three drugs. I did this three times. Three weeks later, I started radiation 5 days a week with "small" chemotherapy of one drug only (carboplatin) once a week.

Good to hear your dad's throat was clear - mine was not. I hope it is now - I'll have to wait to find out.

Hang in there.

Pam
I hope everything is clear for you. We are waiting to find out what his chemo and rad treatment will be. I am praying all goes well with you. Did you have major side effects from the Chemo?

Kathy