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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.

Sun, Jan 26 5:19pm · @marlene47 · Cancer x 9

I have been dealing with cancer for a long time. It has come back 9 times and this time they are not able to remove the cancer because it is now on both sides of my neck. They started with chemo in May 2019 but in July 2019 they stopped [...]

Posted by charles, Sun, Jan 26 5:18pm

Dont be sorry - we are all here for each other. Nine times is pretty amazing 😉 Do you have a squamous cell? What immunotherapy are you taking? C

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Mon, Feb 17 4:44am · @charles · What is a VAD or Porta Cath?

I see lots of questions about VADs and Porta Caths- share your experience here: https://news.cancerconnect.com/treatment-care/what-is-a-venous-access-device-and-what-types-are-used-for-cancer-patients-dujU_hZCSEOBQb4_F18JBw

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Posted by gemini613, Tue, Feb 11 4:59pm

No, the scans do not hurt. I have great veins they access for the dye and the scans are done at a different hospital than where I get my chemo.

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Posted by icrazyhorse, Mon, Feb 17 4:43am

My wife (72) got her Smart Port surgically implanted in November 2011 - she gets it flushed monthly - it's been through 6 FL treatments - no problems.

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Liked by Sandra

Dec 19, 2019 · @charles · Animal or PET Therapy

Would love to hear individuals experiences with PET or Animal therapy as part or an overall treatment and recovery strategy for cancer. https://news.cancerconnect.com/treatment-care/healthcare-is-going-to-the-dogs-and-other-pets-BNlhT_rIfUWki7MHpj8iyA/ C

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Posted by stageivsurvivor, Dec 19, 2019

I've incorporated various forms of exercise (cycling, biking, walking, hiking, jogging) in my recovery from Stage IV Pancreatic Cancer. A few elderly residents who live nearby and have physical challenges were looking for someone to exercise their pets. I figured their dogs would make good jogging companions and now we [...]

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Posted by bonniea, Dec 19, 2019

Outstanding idea, everybody wins!

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Fri, Jan 17 1:39pm · @bobt · Laryngeal - Throat Cancer

HiAfter reading some of the posts I am impressed with the positive support and attitude ofthis group throughout. I wish you all the best.

I had what i thought was a case of laryngitis that wouldnt go away after 4 weeks. I went to see an ENT and after a couple

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Posted by bridgette, Sep 9, 2019

Hello Bob, I am 14 1/2 months out from radiation and chemo to the throat/neck...I had a feeding tube put in, because I lost ability to use my throat a few weeks into treatment...I purchased Boost shakes with protein for nourishment...I used a huge syringe to push liquids (warer and [...]

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Posted by charles, Fri, Jan 17 1:15pm

Bob - checking in to see how things are going here in the new year? I hope you are doing well
Best C

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Aug 26, 2019 · @bigmike55 · My cancer

Hi I was diagnosed with thoat cancer in January 2018 I did all the scan then I had to go to mount veron every day for 6 weeks 2 days longest time in my life not knowing if it had work I also had 1 lot of chemo which wipe [...]

Posted by charles, Aug 26, 2019

True indeed - sounds like you are doing better now. Are you back at work? My brother in law is just finishing radiation for the same and he is pretty wiped out
C

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Posted by bigmike55, Aug 26, 2019

No I’m off work but I’m getting better each day he will be wipe out for awhile radiation stay in around the body for 3 month keep him out of hot sun also I had blood clots so I nearly die twice but I’m still here

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Aug 23, 2019 · @joanfred · free cases of tube feedings

We have several cases of Isosource 1.5 cal unflavored 250ml complete nutrition with fiber for free. Exp 5/20. Each case contains 24 250 ml cartons. We also have syringes, Tussin DM 4oz X2 bottles. We are in MA [...]

Aug 25, 2019 · @sammy1956 · Stepdad has Stage 4 Laryngeal Cancer

My Stepdad, Sammy has Stage 4 Laryngeal Cancer. He was just diagnosed about 1 month ago. Unfortunately, he doesnt have insurance. Everywhere we've turned for help has denied him. Now, we are awaiting MD Anderson Cancer Center's reply. If they don't accept him and if we can't raise $125,000+ then [...]

Posted by billswiger, Aug 24, 2019

Might he be eligible for VA ( Veterans Assistance)?
He would need an honorable discharge from the military.
And there are some cancer specific programs at VA due to exposures

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Liked by Marilyn S,

Posted by marins, Aug 25, 2019

Check these out: http://tinyurl.com/y66fkccu

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Liked by Marilyn S,

Jul 6, 2019 · @tillerman2002 · Flap that was taken from forearm growing hair.

Does anybody know who can laser this off? I've called original surgeon, ents, dermatologists, dental surgeons......no one knows anyone on the west coast that can help. Could use a name that can help. Frustrating. Quality of life is horrible. Thanks for ANY help. [...]

Posted by charles, Jul 4, 2019

Thats odd, its a simple procedure and widely available in Seattle. Have you confirmed with your surgeon that the graft is stable enough to have the procedure performed? https://www.expertise.com/wa/seattle/laser-hair-removal Make sure you understand the risks and benefits
Best

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Posted by tillerman2002, Jul 6, 2019

Hi Charles, It's not every day laser hair removal. He needs to be put out and it's down his throat. Will take a few sessions as well. I wish it was as easy as going to an office for laser hair removal which is available everywhere. Still searching.

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Jun 30, 2019 · @darcy67 · Squamous cell carcinoma stage 3 sinus cancer

Hi, I was diagnosed with squamous cell carcinoma of the sinus cavity stage 3 November 7 2018, and also was told they found a brain aneurysm. Had massive heart attack on july 25th 2018 also. Had surgery to remove the left inside of face. Sinus cavity teeth, upper left pallet. [...]

Posted by kkaustin, Jun 30, 2019

Hi,

I'm a stage lV squamous celll head & neck as well. I had the mandible surgery & radiation in 2017/2018. My symptoms got worse after radiation ended as well. The narrowing of my esophagus has caused eating issues so I understand a little about eating issues. This April I was [...]

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Liked by Tedpro

Posted by charles, Jun 30, 2019

It would seem to me the physical therapy and range of motion exercises repeatedly would be the only real way forward - is this what they are doing? Do you feel like you are making any progress at all? Sometimes with radiation damage surgeons can find release point and remove [...]

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Jan 25, 2019 · @charles · Does Ginger Prevent Nausea?

Several posts have recently suggested Ginger can reduce chemotherapy associated nausea. Anyone have any experience with this? https://news.cancerconnect.com/treatment-care/ginger-supplements-reduce-chemotherapy-induced-nausea-3B6rHRbu9keWrwgbJujyTQ/ [...]

Posted by maclaurie, Jan 25, 2019

I drank mild ginger tea and took Zofran for nausea. This seems to help. I took Colace for the constipation which also made a difference. Lauriemacc

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Liked by ronman

Posted by anusuya, Jan 25, 2019

We used Smooth Move tea to balance the constipation that cropped up after days of zofran. He was on 3/day for a long time.

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Jan 3, 2019 · @tedpro · Status of Teds Laryngeal cancer

I have been treated for the past year with laryngeal cancer ( T4 N2 supraglottic and hypopharyrx squamous cell carcenoma. I have had chemo for 7 weekly treatments staring in February. The 3 tumors in my neck decreased in size which was deemed very positive. Then I had daily radiation [...]

Posted by tedpro, Jan 2, 2019

I don't recall the names, however one of the woo chemo had platinum in its name. I understand that it was there typical chemo agreed by the 25 OR SO MD's on the review committee. My doctors that reviewed the test results seemed pleased with the results. They said however [...]

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Posted by charles, Jan 3, 2019

Platinum based chemo is standard and the side effects you are experiencing from the radiation are difficult and frustrating. Keep discussing them with the doctors as there are things that can be done.
C

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Apr 1, 2019 · @michaguz · New Community Member Here. Neck Cancer being treated with Radiation

Hello all . I an new here but not new to Cancer . I had NHL 10 years ago and was treated with Rituxan and Chop . Now I am in my 5th week of treatment with is radiology and chemo . I have to say that I am struggling [...]

Posted by charles, Apr 1, 2019

congrats on finishing what i think is one of the more difficult treatments to go through. Have you tried smoothies or milkshakes with protein? I find these to be a great source of calories and they go down pretty easy
C

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Posted by garth, Apr 1, 2019

They were basically swallowing exercises that I was to do daily. One was after every swallow..keep mouth closed and go hmmm and swallow again. The main one that really helped me was to swallow like you were swallowing a golf ball..a power swallow. helps keep throat muscles strong. Hope that [...]

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Liked by charles

Dec 22, 2018 · @boblane · Does T.O.R.S. surgery require neck dissection?

If you have TORS HPV tonsil surgery do you also need to have a neck dissection? pet scan shows no nodes involved just tonsil with no spreading [...]

Posted by boblane, Dec 21, 2018

a DR made it sound like 2 go together?
I'm going to see surgeon on the 31st for his opinion

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Posted by charles, Dec 22, 2018

They often do go together and the lymph node dissection can be quite important in determining treatment. Its good that you are seeing a surgeon that specializes in this procedure; https://news.cancerconnect.com/head-neck-cancer/overview-of-lip-oral-cavity-cancer-icAlRmmDwUGO1LpR1A6B1w/

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Wed, Feb 12 10:48pm · @treebyriver · Immunotherapy Easier Than Chemo?

Hi I am coming up on my fourth immunotherapy at MDA in Houston. I am finding that I am having to unlearn some of my expectations with experiences with chemo since immunotherapy is different and at this point easier.

I have had small skin rashes, another level of fatigue, and other

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Posted by marjorieg, Sun, Feb 9 2:54pm

Which immunotherapy agent are you receiving? I've heard about the fevers but it sounds like you're faring well.

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Liked by Marilyn S,

Posted by treebyriver, Wed, Feb 12 10:47pm

Someone here asked me for the trial I was on that worked well for me. https://www.mdanderson.org/patients-family/search-results.html

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Liked by Marilyn S,

Dec 8, 2018 · @charles · Tissue Agnostic Genomic Based Treatment--Share Your Thoughts

I wanted to share a recent blog about the FDA approval of a 2nd "tissue agnostic" cancer drug. All patients should understand this emerging shift in how cancer can be treated. Its happening quickly, will create confusion, take awhile to be incorporated into how doctors evaluate and manage a cancer, [...]

Posted by pvaritimidis, Dec 7, 2018

Maclaurie I agree with you 100%!! Thank you Charles.l
Paula

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Posted by mrtaylor, Dec 8, 2018

There are many clinical trails testing againsts specific mutations. I saw this one for alk, https://clinicaltrials.gov/ct2/show/NCT03310541

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Liked by StarWolf