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The Head and Neck CancerConnect Community is for everyone whose life has been touched by a head and neck cancer. It is a place where you can safely voice your ideas, thoughts, and concerns, benefit from the experience of others, and most importantly, realize that you are not alone. This community is for you and about you.

Registering for the CancerConnect Community will enable you to ask questions, share your experiences, and gain knowledge from others who are confronting similar challenges. As part of the community, you may also take part in national conversations and events on CancerConnect. To do so, you will not need to register again.

Mon, Sep 24 6:00am · @larryf · Treating cancer after lung transplant for IPF

Now have tumors on my face,has anyone taken chemo treatments,while taking immune suppressive to keep my lung from being rejected [...]

Posted by charles, Mon, Sep 24, 2018 6:00am

@larryf There are ways to do this effectively; i am assuming you are being treated at a major cancer center if you have had a lung transplant. What kind of cancer do you have?
C

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Mon, Sep 24 5:57am · @brodar1971 · Excess thick mucous following radiation treatment laryngeal cancer

I had 35 radiation sessions in 2010 to eradicate laryngeal cancer. Since then I have had excess mucous build up that sometimes almost chokes me. It is embarrassing to be in public and have to cough up this thick somewhat opaque substance and either spit it out (gross) or into [...]

Posted by esther2k5, Tue, Sep 18, 2018 10:30am

Best wishes for your scan tomorrow, Garth.

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Posted by charles, Mon, Sep 24, 2018 5:57am

With regard to the initial questions has anyone had experience reducing the amount of mucous following treatment?
C

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Mon, Sep 24 5:54am · @bridgette · Head and neck cancer: were here for support!

I got diagnosed with head and neck cancer and started treatment April 24, 2017..I remember coming on this site and reading about others experiences, and it helped me tremendously..I had alot of unknown fear, and I did not know what to expect, because everyone's experience and healing is different..if there [...]

Posted by garth, Wed, Sep 19, 2018 7:26am

Bridget...best of luck it will be fine. I go for my 6 month scan today also. Hang in there..
Garth

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Posted by charles, Mon, Sep 24, 2018 5:54am

Glad to hear things are moving forward and wish you the best with the scans
C

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Mon, Sep 24 6:04am · @888661 · HOPE! I was 4 Stage 4 plus nano pharyngeal tumor, and given few weeks

there's hope! for head and neck cancers, I was a stage 4 plus , very advanced naso-pharyngeal tumor, big as my hand, inoperable , given few weeks to live. Today is two years and few weeks, I survived the evil, if anyone needs help, I can help, I swear! god [...]

Posted by 888661, Thu, Aug 30, 2018 9:56pm

I think it’s wonderful!

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Posted by charles, Mon, Sep 24, 2018 6:04am

Congrats on the success; what was your treatment?
D

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Tue, Aug 21 9:32am · @karen1125 · 80 yo mother just dx with base of tongue cancer spread to 4 lymph node

My mother is fairly active. She was just recently dx with base of tongue cancer and has spread to 4 lymph nodes. She lives independently. I’m looking at the tx options and I cannot see my mom making it with a feeding tube at this point in her life. The [...]

Posted by dotti, Tue, Aug 21, 2018 6:14am

Good morning, not being familiar with the term IMRT radiation, I went back to treatment center for verification of what we had to learn yes everything they followed was under the IMRT regiment for HN disease; the only thing I believe missed was swallow studies pre and during in order

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Posted by carolcowan, Tue, Aug 21, 2018 9:32am

Dotti,
You and your husband have had a rough time, but your attitudes are good. You're an inspiration for many others, the definition of a great caregiver. Thank you for the sharing you do here.
Carol

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Wed, Sep 12 8:54pm · @tomjkt · Metformin for HNSCC

Hi all, I have been reading studies showing that diabetes type 2 drug METFORMIN may have some impact on shrinking tumors and increasing over all survival. I am wondering if anyone here is taking/has taken this drug and has any comments. Do you think its helping? Have you had any [...]

Posted by ponderit24, Wed, Sep 12, 2018 5:52am

Please look into AHCC, I believe it was the reason for non reoccurance of my stage 4 tonsil cancer. 3 grams a day split into two doses or at worst taken at the same time

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Posted by tomjkt, Wed, Sep 12, 2018 8:54pm

Very interesting. I am not familiar with this supplement. I will certainly look into it. Best regards

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Mon, Oct 8 2:39pm · @bethcasbeer · Excessive phlegm after neck cancer

I am asking for a close friend who had surgery in Aug.2017 for cancers in her mouth and neck area. Cancers in her throat were next to her voice box but they did not have to remove her voice box. Since this surgery she has not been able to swallow [...]

Posted by wojahns, Mon, Oct 8, 2018 12:06pm

My wife struggles with this for years. The PT swallow clinic and many exercises later helped. She also uses a humidifier next to her most of the time which makes her breathing easier. When the phlegm blocks her throat she tries to cough it out, or if she can’t she

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Posted by charles, Mon, Oct 8, 2018 2:39pm

Thanks - good suggestions and wish you the best. Sounds like you are are great care giver
Best
C

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Mon, Jul 30 3:24pm · @beakmom · I found another lump-HPV strikes again

After finishing treatment for the squamous cell carcinoma on the left side of my neck, I have now discovered a new lump on the right side of my neck. Could this just be a reaction to the treatment? Or something? [...]

Posted by beakmom, Mon, Jul 30, 2018 12:38pm

They removed my feeding tube a few weeks ago, and I'm doing great (although it's too hot). I have my next ct scan next week. Kind of excited to learn the results. In the meantime, I am really enjoying my weight loss, now that I am no longer weak as

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Posted by carolcowan, Mon, Jul 30, 2018 3:24pm

Good for you! It's also great to hear that you're optimistic about the scan results.
Carol

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Tue, Apr 24 12:10pm · @wojahns · Long term open wound

After multiple radiation sessions following multiple chemo treatments my wife’s neck has an open wound under her ear. It is about the size of a half-dollar. She’s had it for about two years so far and it is getting marginally better under treatments with Santyl ointment and occasional Medihoney. The [...]

Posted by carolcowan, Tue, Apr 24, 2018 9:44am

Kevin,
I'm Carol, a moderator here and a retired RN. The photos are upsetting, especially the first (earliest) one. You two have been through a nightmare. I don't think anyone can look at those pictures and offer medical advice based on them. I looked up Epifix and it does seem

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Posted by wojahns, Tue, Apr 24, 2018 12:10pm

Thanks much for your feedback.

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Sat, Apr 21 10:37am · @ozark · Lymph node spread

My husband has a laryngectomy last August and two PET scans have just shown cancer in lymph nodes in his neck and thoracic area. Can anyone offer any insight about treatment? The one doctor said further tests would be need to see if thoracic nodes are even operable. Radiation is [...]

Posted by ozark, Fri, Apr 20, 2018 5:44pm

I just talked to Dr. and got many of my questions answered. Apparently my husband decision isn’t unreasonable. The doctor suggested talking to palliative care to prepare for the future. I will, of course, but would love to hear from anyone who could provide some insight into what the next

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Posted by carolcowan, Sat, Apr 21, 2018 10:37am

Ozark,
No, your husband is not being unreasonable at all. The people you're looking for who can give you EXACTLY the answers you're looking for are palliative care! You can be followed by them and the doctor you like who suggested them. I like him for suggesting them! They'll see

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Tue, Apr 17 12:35pm · @smunshi · Neck tightness

I am stage 4a larynx cancer survivor. I have completed 5 yrs. cancer free kourney on 16th April 2018. My neck is always suffering from acute tightness otherwise life is good. Ultimately I accepted this as my normal life. [...]

Posted by smunshi, Tue, Apr 17, 2018 1:11pm

I am practising neck and shoulder exercises regularly as shown by my physical therapist without much effect, though Ihave not gave up exercises. Also I am massaging neck area regularly without any effect.

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Posted by esther2k5, Tue, Apr 17, 2018 12:35pm

I also have limited range of motion and minor tightness in my neck though do not do the exercises because it doesn't really bother me.
If I knew when I was diagnosed what I much later figured out, I would have pursued an alternative route and would have had my

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Thu, Feb 8 1:18am · @roseyfair · Stage 4 cancer of the submaxiallary gland

I have salivary gland cancer stage 4. It has metastized to both lungs. I had my submaxiallary gland removed, a neck dissection and two more surgeries. I had 33 radiation treatments. My radiation doctor told me there was a 96 percent chances I would be cured. About 6 months later [...]

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Mon, Jul 30 2:41pm · @beakmom · How long after treatment ends will my taste buds be screwed up?

I find myself becoming very depressed every time I try to eat, and the food tastes like bitter sawdust. Then I CAN'T eat. I am a "live to eat" rather than a "eat to live" personality. They are placing a feeding tube today, so I won't lose weight. But I'm [...]

Posted by beakmom, Mon, Jul 30, 2018 12:42pm

I now pretty much have my taste back, although it has changed. I can no longer eat tomato-based sauces, and still need for my food to be very moist in order to swallow it. I also can't eat anything spicy. It's like the tissues in my mouth are really thin

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Posted by marins, Mon, Jul 30, 2018 2:41pm

This is great news, beakmom! Getting rid of that darn PEG tube and learning to enjoy real food again is a real milestone! If you're like me, it will take some time before you like some of the things that used to be your "go-to's" but it should eventually happen.

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Tue, Feb 6 3:15pm · @wojahns · Chemo for life?

My wife is in her sixth year fighting cancer that spread from the back of her throat to nearby lymph nodes to nearby behind her ear canal. The multiple tumors have been defeated one at a time with radiation, chemo, and multiple immunotherapies (many in trials). Now the cancer is [...]

Posted by carolcowan, Tue, Feb 6, 2018 9:06am

Kevin,
I agree with Marin. A second opinion before they say they're stopping treatment because it's not helping enough is a good idea. You can try telling your current doctor that and see if anything different could be given by him. Definitely check on clinical trials, too.
Carol

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Posted by wojahns, Tue, Feb 6, 2018 3:15pm

The rind has been stable (no growth) for more than 6 months now (slowly shrinking).

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Wed, Jan 31 6:41am · @albert · Continuous Chemotherapy

Should a person have chemotherapy for 24 hours a day for a hole week as my partner did [...]

Posted by carolcowan, Mon, Jan 29, 2018 3:43pm

Alan,
Chemotherapy ids given in many forms and on many schedules. There's nothing to go on to answer your question like where the cancer is, what stage, and what his treatment plan includes. In general, a person can get chemo 24 hrs a day, seven days a week. That can

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Posted by albert, Wed, Jan 31, 2018 6:41am

HER CANCER WAS IN HER MOUTH THEY TOOK QUITE A BIT OF HER TONUGE AWAY AND HER LIMTH GLAND SHE HAD OVER 50 STSPLES FROM BEHIND HER EAR TO HER CHIN

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