Need help...side effects and second thoughts on treatment: SCC of the tonsils

ahartt

I don't have cancer but I do have a very, very close friend who was recently diagnosed with SCC of the tonsil (primary) that has spread to the soft palate and lymph nodes on the right side of his neck. He has seen several doctors here in NM and also went to MD Anderson for a consult (report and treatment plan from them is pending). The NM doctors recommended chemo and radiation followed by surgery. They convinced him to begin treatments this past week because the tumor in his neck is growing very quickly. He had his first chemo last Monday and had radiation Tues. - Fri. He seemed to be feeling fine on Tuesday (slightly naseous) but took a turn for the worse on Wednesday and Thursday (violent gagging, vomitting, etc.). His doctors here gave him zofran and salogen (for dry mouth). He took both as prescribed but has really been having a hard time...until today...he stopped both of them and he feels much better. He is very frustrated because the literature says these are known side effects for these drugs yet his doctors did not tell him that nor did they call to check on him. He is now having second thoughts about the doctors and getting treatment in NM. He is reconsidering getting treatment in TX. Is this common...having second thoughts about doctors and treatments? Should we be concerned and looking or is this simply a reaction to the first week?

Also, does anyone have any suggestions to help with the dry mouth and sores? I read somewhere that a humidifier can help with the dryness. Any other tricks? Any recommended topicals for the sores?

For those of you with cancer, what has been the most helpful in terms of support that you have received from others? I feel very inept at times and never know if I am doing enough for him or doing enough of the right stuff to help him through this.

Thank you so much for your help. I hope I am not intruding...just didn't know where else to go to get help.
Amy

karenleung

Amy, I am a surviver of tonsil cancer. You may email me for more information or you can visit a very useful website where you can get a lot of information about this type of caner:
www.oralcancerfoudation.org.
Karen.

ahartt

karenleung said:

Amy, I am a surviver of tonsil cancer. You may email me for more information or you can visit a very useful website where you can get a lot of information about this type of caner:
www.oralcancerfoudation.org.
Karen.

Karen,
I registered on the OCF site. Thank you for that recommendation. It looks like a great source! Any thoughts, advice, input yo have would be greatly appreciated.
Amy

cbecker

Pleae email me at mktgintl@inlandnet.net. My husband had scc of the throat and went to MD Anderson for treatment. I can help and tell you alot. Please email me, Thanks, Candy

4mydad

Amy, I just posted about my dad's treatment with base of tongue cancer. I know what you mean about being the support giver and feeling inadequate. His treatment is finished and I still feel I couldn't do enough.

As for the treatment and care you're getting (or not) I would strongly suggest getting a second opinion. Your friend's life (and consequently yours) is in their hands. If you don't trust them or feel uncomfortable with them, ask them questions. If they can't or won't answer, go elsewhere! I was forever coming to my dad's doctors with papers in hand and they always took the time to listen and discuss it with me.

Feel free to email me if you have questions. I'm not an expert, but I can listen!

MWHF

I had base of tongue cancer stage 4 that spread to the lymph nodes. He probably should have had a peg tube inserted so he could pour down Boost and other liquids. The mouth becomes very ulcerative. Magic mouthwash helps alot. I did not have surgery. Chemo with radiation has left me tumor free for almost 2 years. Just be supportive and be there for him. In time, this will pass. Good luck.

robh

MWHF said:

I had base of tongue cancer stage 4 that spread to the lymph nodes. He probably should have had a peg tube inserted so he could pour down Boost and other liquids. The mouth becomes very ulcerative. Magic mouthwash helps alot. I did not have surgery. Chemo with radiation has left me tumor free for almost 2 years. Just be supportive and be there for him. In time, this will pass. Good luck.

Hi everyone. Just wanted to touch base. I am just heading into my 3rd week of 5 in Chemo/Radiation land. I must say that I feel pretty good. Throat is sore. Sores on my tounge. But other than that I feel ok. I feel so good in fact I will be doing this as an outpatient from now on. I was losing my mind sitting at U of C from 11:45a.m. to 6:00 a.m. every day., You see I have twice a day Radiation 6:00a.m. and 11:30a.m. The Chemo has not made me sick to date. I am also on IRESSA. I strongly suggest you all look into the wonder drug. I will need to remain on it for two years but hey if I am alive I can do it. I am being treated as SCC T1N2A Stage 4. I am really T1N1 stage 3. They fine staff at U of C decided that they wanted to treat me as stage 4. The docs have perscribed really good pain killers and Lidocaine for the mouth pain and it is working really good. I would love to talk to any long term survivors if you are out there. I love my life and want to do everything in my power to see I am here another 40 years or so.

Thanks everyone. I hope your treatment is going as well as mine.

Robert

mosbutler

MWHF said:

I had base of tongue cancer stage 4 that spread to the lymph nodes. He probably should have had a peg tube inserted so he could pour down Boost and other liquids. The mouth becomes very ulcerative. Magic mouthwash helps alot. I did not have surgery. Chemo with radiation has left me tumor free for almost 2 years. Just be supportive and be there for him. In time, this will pass. Good luck.

My husband had base of tongue cancer. The doctors informed us that he had a compelte response after 6 chemos and 8 weeks radition every day.
He is post chemo 6 weeks tomorrow. His mouth is still very sore and he still cannot eat. He has been using a feeding tube.
He is feeling healthy so he is very frustrated with the SLOW SLOW healing process.
What was your experience.
Thanks for being available for me to ask this.
Maureen

fallows

mosbutler said:

My husband had base of tongue cancer. The doctors informed us that he had a compelte response after 6 chemos and 8 weeks radition every day.
He is post chemo 6 weeks tomorrow. His mouth is still very sore and he still cannot eat. He has been using a feeding tube.
He is feeling healthy so he is very frustrated with the SLOW SLOW healing process.
What was your experience.
Thanks for being available for me to ask this.
Maureen

I am post radiation for 8 weeks now and I am still eating soft food and using my stomach feeding tube to supplement. The doctors put me back on steroid a month ago and that has helped with the swelling and soreness. I am now going to withdraw from the steroids over the next three weeks. I am feeling better slowly, much slower than I anticipated.

I had base of the tongue cancer and also in my tonsil. I had surgery then 7 weeks of ratiation.
I think it just takes a long time to heal. At least the naseau and vomiting are gone!
take care.

DHamilton

mosbutler said:

My husband had base of tongue cancer. The doctors informed us that he had a compelte response after 6 chemos and 8 weeks radition every day.
He is post chemo 6 weeks tomorrow. His mouth is still very sore and he still cannot eat. He has been using a feeding tube.
He is feeling healthy so he is very frustrated with the SLOW SLOW healing process.
What was your experience.
Thanks for being available for me to ask this.
Maureen

My husband just finished up his treatment for SSCA which began in his throat and grew to about 6cm, involving one lymph node. He received 7 weeks of radiaion with concurrent chemo. The treatments ended 4 weeks agao. The tumor is totally gone (which is great news) but his recovery is incredibly slow. He can only drink Ensure/Boost drinks and has little interest in anything else. They did not put in a feeding tube, so it is still a struggle to get down enough calories in a day. He has pain on the top and back part of the tongue, but otherwise says he feels good. He does sleep most of the time, doesn't like to talk much and sure doesn't want to go out and do anything. How long does this last???? The doctors had led us to believe he would be much better by now.

robh

DHamilton said:

My husband just finished up his treatment for SSCA which began in his throat and grew to about 6cm, involving one lymph node. He received 7 weeks of radiaion with concurrent chemo. The treatments ended 4 weeks agao. The tumor is totally gone (which is great news) but his recovery is incredibly slow. He can only drink Ensure/Boost drinks and has little interest in anything else. They did not put in a feeding tube, so it is still a struggle to get down enough calories in a day. He has pain on the top and back part of the tongue, but otherwise says he feels good. He does sleep most of the time, doesn't like to talk much and sure doesn't want to go out and do anything. How long does this last???? The doctors had led us to believe he would be much better by now.

D,

My last name is also Hamilton. Funny. I had SCC right Tonsil with one Node up. It takes at least 2.2 months to really start feeling better again. Also, there is depression due to the Radiation. Its really weird. I remember crying at the drop of a hat, not wanting to do anything. It is all normal. Since it took me so long to reply he might even be feeling better by now.

Drop me a line if I can help. My e-mail is rob@exmt.com
Thanks,
Robert Hamilton