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Joined: Jul 2005
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Steven,

I am three years out. Same basic base of tongue.

Did not have saliva issues, but HAVE THEY CHECKED YOU THYROID?

Radiation will destroy the thyroid. ALSO, you need to have your Vitamin D level checked.

Lack of these will cause a lot of fatigue. I would check ASAP.

Steve Daib


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
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Hey Steven, yes Dr.Chen is my ENT and I have nothing but 100% respect for that lady. She did my surgery and on each follow up I have with her I see her not just an intern as with so many other doctors. My MO is Dr. Saba and the RO is Dr. Davis. I go and see all of them again on the 17th and 18th of this month. If everything is ok again this time then they will remove the port from my chest.Do I ever hope so.


Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 smile
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Steve, I have had my thyroid checked as I suffered from severe low blood pressure during my treatment so it was checked then. I hve not been drinking juices as I was concerned that it would burn my throat so I probably should and will try taking some vitamin C. Thanks for the suggestions.
Bill, I just got a call from Doctor Chen's nurse that my CT Scan of the neck was all normal this time. Thats much better then my last report which resulted in my having to have a biopsy done. Will be seeing all my Doctors this week. I hope all goes well for you next week.
Just curious if you respect and like Dr. Davis? Since Dr. Johnstone is leaving I didn't know if I should ask to be transferred to Dr. Davis?
Regards, Steven


SCC Base of Tongue
Stage IV T2N2bM0
IMRTx32, Cisplatin x3
Diagnosed 1/25/07
Treatment Completed 4/20/07
Scans all good as of October,2011
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Hi, Steve,

I am a caregiver to my husband who will have his final radiation session this Wednesday. He has had the thick saliva for a couple of weeks so I am really sympathetic that it has continued for so long for you. Rob's suggestion above about being more aware and intentional about swallowing is one I will suggest to my husband as it sounds like it might help. Also, from reading the above posts I think my husband has some neuropathy so that explains (perhaps) some weird hand motions (sort of like when someone's fingers are numb) and his stumbling a bit lately (so thanks again).

One thing I'd like to suggest that might help you or others on this Board is the help that a psychologist might be able to offer(I'm a psychologist). People who have a serious disease such as cancer often have intrusive thoughts that create anxiety and interfere with living in the "here and now." Psychologists (especially those with expertise in anxiety and trauma- after all, having a life-threatening disease is an open-ended trauma) can be very helpful in teaching individuals strategies to manage these thoughts and/or behaviors. For people whose stress is such that it interferes with utilizing these strategies, some SSRIs can lessen intrusive thoughts and reduce anxiety in a very short amount of time so that they can then utilize these strategies. I know I have had to use everything I know about coping and have relied on all of my psychologist friends to get through this and I cannot even imagine how difficult it is for the person with cancer.

Please keep posting about your progress!

Sophie - caregiver to husband with Stage 4b tonsils and base of tongue SCC


Sophie T.

CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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Steve,
Don't get too discouraged with the slow recovery. It has been said - and we certainly found it to be true - that it takes a month of recovery for every week of treatment. My husband received 7 weeks of radiation and chemo and, actually, 7 months later he was still very weak, had difficulty eating most foods, etc.

Like you, he was a very active/athletic person before diagnosis. At close to 5 years since his diagnosis, he is back to being the skier and hiker that he used to be. And he is now eating almost anything (except very spicy or very dry foods).

Best to you as you continue your recovery.
Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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Hi Steven,
Has anyone suggested tussionex for the stringy saliva? I know that helped my mom tremendously.
My mom's RO said he wanted to wait for some time before he ran any new PET/CT scans, he was worried about scar tissue from the treatments.
My mom has been a little unbalanced the last two days, I am now wondering if that could indeed be neuropathy. I had read about it in the beginning of treatments but had forgotten about it until I read your post. >>> Thank you! I am always amazed at how much I learn from someone else who is asking questions.
Try not to fret so much --how's that expression? my dad was born in raised in Cherokee County, GA. -- try to enjoy today, find a positive in as much as you can. I see my mom starting to slide down worryhill, I know it will just exhaust her. I am not making light of any of this, it is so frightening, mind consuming, and generally overbearing.
I have to say that the internet scared the hell out of me, till I found the OCF. I appreciate all the honesty and stories, and the absolute acceptance from everyone. It has been a gift for me.
Donna


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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I took Robitussin for the thick saliva, which comes and goes. Dileep is right about visualization, it can work. I used it with a vengeance during my treatments and fared quite well with it.


Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
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Steve, Yes I would suggest you speaking to Dr.Davis. I would even recommend it. My understanding is that all the RO's work together to a degree and wouldn't you feel more comfortable with a team that already has a working knowledge of your case? At least meet with him and make your decision afterwards. I am glad to hear your scan came back great. It sure gives an easy feeling when you get that kind of news. I totally feel I will get the same response when I do mine next Monday. October 16th is the 1 year anniversary of my cancer diagnosis. Boy talk about mixed feelings. Oh well, take care and stay in touch.


Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 smile
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