Please login with your account or, if you aren't a member, join now.

 

Login


Join Now

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.

Aug 6, 2016 · @shkalley · Treatment decision making-- chemoradiation or no treatment

My husband was diagnosed with oropharynx cancer - Stage 4, T3 N2c M0 - and had successful surgery at the end of June. He's now trying to decide about doing chemoradiation or no treatment. The doctors recommended the chemoradiation because his lymph nodes were involved with extranodal extension and although

[...]

Posted by megm, Mon, Aug 1, 2016 2:03pm

Hi @shkalley, did your husband decide to proceed with chemoradiation or no treatment?

[...]
Posted by shkalley, Sat, Aug 6, 2016 7:17am

Thanks for your interest. He has decided to proceed with chemoradiation. It will begin Monday 8/8. It seems as if everyone responds differently to the treatments. I'm just trying to be ready to help with whatever side effects he has. He is doing great right now - driving, mowing, socializing.

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Sep 1, 2016 · @murielk88 · Nasal pharyngeal cancer-- severe headaches and earaches

Hi I am Muriel I found out 3 months ago that I had a nasal pharyngeal tumor , dealing with severe headaches and earaches for a long time before finding out. I wonder if anyone could guide me on the recovery, i had 33 radiation sessions and two chimos already...Three

[...]

Posted by murielk88, Thu, Jul 7, 2016 8:53pm

I do juicing with greens in the morning and lots of natural vitamins and supplement, what did you have cocobud?

[...]
Posted by vphillips, Thu, Sep 1, 2016 7:20am

Hi Muriel! I am a 6 1/2 year naso-pharynx cancer. The treatments for our type of cancer is harsh. I had 34 radiation treatments (radiation treatments will make you very tired, but that will go away in time), 3 out patient chemo treatments, and then got so terrible sick, they

[...]

Liked by megm, VPhillips

@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Jun 8, 2016 · @luisa · What Is the Best Diet for Someone with Oral Cancer? DFCI Blog

New Dana-Farber Blog Post: "What Is the Best Diet for Someone with Oral Cancer?"

The story begins,

"Side effects from oral cancer and its treatment can make it challenging to eat essential nutrients that can maintain strength and support recovery. Stacy Kennedy, MPH, RD, CSO, a senior nutritionist at Dana-Farber/Brigham and Women’s

[...]

@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

May 26, 2016 · @fran356 · Immunotherapy and head and neck cancer

New here-- my husband has squamous carcinoma, have been reading some about immunotherapies for his type of cancer. anyone had opdevo or kaytruda? [...]

Posted by p38chasmo, Thu, May 26, 2016 4:58am

I was diagnosed with metastatic malignamt melanoma to liver. One large tumor in left lobe that was killed with chemoembolization treatment. Several small lesions in right lobe now being treated with keytruda. So far very minor side effects. Promising therapy. Being treated at Thomas Jefferson hospital in Phila, great Doctors

[...]
Posted by ReesieOK, Thu, May 26, 2016 8:31am

I am receiving Keytruda for melanoma with spread to lymph nodes and liver. Unfortunately, my insurance required a failure of ipi and a BRAF drug before I could have Keytruda so it's been a long road. I've had some fatigue and joint pain related to Keytruda and it can be

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Tue, Jul 24 6:06pm · @cocobud · Dealing with long term side effects

Hi all, Is it just me or do we all keep suffering for years to come, I am 2 years 2 months and I am still having a difficult time with memory, getting things done, takes forever. Am I alone and how long does it go on? Thanks

[...]

Posted by marciaann, Mon, Feb 12, 2018 5:32am

I'm going on 6 years and I still have "things". I also had Chemo, Cytoxan in 1991-92, so I never actually bounced back from that when I got HNC (tonsil) in 2012. But I will be 60 in June, of which I am very proud, so some lack of bouncing

[...]
Posted by falcon, Tue, Jul 24, 2018 6:06pm

This might be helpful about EGFR side effects: http://news.cancerconnect.com/managing-side-effects-from-egfr-inhibitors/

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

May 17, 2016 · @user_chd2ee883 · Voice

Voice i was diagnosed with laryngeal cancer on June 8,2015. I did 7 weeks of radiation and 3 chemo treatments. My doctors say I am doing great. My voice is still a little scratchy and hoarse. Can I expect it to get better? My thyroid was affected by the radiation. I [...]

Posted by charles, Tue, May 17, 2016 9:26am

It really depends on how much damage the radiation did. In my experience there is usually some inflammation that occurs with the radiation and this should continue to improve over time. What have your doctors said?
Best
C

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Jun 1, 2016 · @jscprop · Treatment Decision Making Stage IV Tonsillar Cancer

I was just diagnosed with localized stage 4 tonsillar cancer and need to talk about surgical vs non surgical options.

[...]

Posted by ponderit, Tue, May 31, 2016 1:39pm

Yes I had 7 weekly Cisplatin and around 37 rounds of radiation. Consider yourself lucky that you are HPV+ as well because there is a higher cure rate. As I said I was stage 4A and had two local lymph nodes. I was not in a major cancer research university,

[...]

Liked by jscprop, Mick

Posted by jscprop, Wed, Jun 1, 2016 6:48am

Thank you for your encouraging response. My Cisplatin is scheduled for once every 3 weeks rather than weekly. Will need to ask chemo doc about differing intervals.

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

May 25, 2016 · @shubarna · Metastatic head and neck cancer-- need hope

Hi, my husband's yearly pet scan showed metastatic head and neck squamous cell carcinoma with recurrence in the mediastinal nodes post laryngectomy and bilateral neck dissection following one year of treatment. Primary site all clear. Liver, pancreas, brain, bone, all clear. Doctor suggests weekly systemic chemotherapy with carboplatin, paclitaxel and

[...]

Posted by shubarna, Mon, May 9, 2016 9:21pm

Thank you so much for your reply. Yes, he did have cisplatin based chemo
along with his radiation but that was a very low dose just to enhance the
effect of radiation, what they term as adjuvant chemo-radiation for six
weeks.
This metastasis occurred one year post treatment. He has

[...]
Posted by charles, Wed, May 25, 2016 10:54am

Lots of new treatments becoming available soon that are improving survival and quality of life; http://news.cancerconnect.com/opdivo-improves-survival-head-neck-cancer/
C

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

May 26, 2016 · @cocobud · I can not be alone. My pals will help me out.

Hi Guys & Gals.....Not new.....I am 2 years out. 2 year screening was good, except they want to do the scans again in 3 months.?? Is it normal to feel like the chemo takes over , you have no control?? I have had better days where I felt I was [...]

Posted by weagle, Thu, May 26, 2016 10:26am

The multiple myeloma doc thinks the anemia is more a result of the inflammatory illness than the myeloma. I do take a ton of supplements (I go to an integrated doctor as well)..and they include B-12, Vit D and also iron chelate). Sometimes, I take an electrolyte drink...blood tests show

[...]
Posted by faith, Thu, May 26, 2016 11:37am

Hi Bill, Interesting thing about B12 deficiency. A close relative of mine - very healthy his whole life - started having severe neurological problems, which got so bad he could barely walk or stand. Primary doc was at a loss (suspected a brain tumor) so sent him to a neurologist

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Apr 11, 2016 · @luisa · "How to Reduce Your Risk of Oral Cancer" New Dana-Farber Blog Post [...]

"How to Reduce Your Risk of Oral Cancer" New Dana-Farber Blog Post The post begins, "Each year, more than 48,000 people in the United States are diagnosed with oral or oropharyngeal cancer, which occurs in the oral cavity – lips and cheeks, gums, tongue, floor or roof of [...]

@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Apr 5, 2016 · @cocobud · Long term side effects

Hi Guys & Gals, OK, I am two years out, all clear. I have yet to find a Head & neck, throat survivors who have ever had your side effects from Chemo & radiation. This rarely improves. I know Head , neck & throat like most of you. People after

[...]

Posted by cjasher, Tue, Apr 5, 2016 6:16am

I am3yrs out can't work because I'm now disabled the treatment killed
my thyroid now strangely I have autoimmune metaplastic atrophic gastritis
,however I didn't have it until after treatment. There are days that are
great but more days that are truly horrible I'm so thankful to be alive
or

[...]

Liked by jamsann

@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Mar 17, 2016 · @noslippers · My dad has Cis of the vocal cord and had the tumor [...]

My dad has Cis of the vocal cord and had the tumor removed and then started on radiation therapy. He was halfway through RT when he started having very bad side effects.He has severe sore throat, inability to swallow properly, pneumonia, sepsis and had to have a peg tube. Dr. [...]

@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Feb 11, 2016 · @danielletc · My father a veteran of 22 years just got diagnosed with stage [...]

My father a veteran of 22 years just got diagnosed with stage 4 throat cancer. Today the biopsy confirmed it. We live in the Houston area. My mother and I are doing everything we can to support him. His medical coverage wont cover MD Anderson any longer. I just feel [...]

Posted by bernicereese1, Thu, Feb 11, 2016 7:26am

My brother law had throat cancer. He went to cancer America in Pennsylvania. They specialize in this type cancer. He is now cancer free for 12 years. Just keep fighting you can beat this

Bernice Reese

[...]
Posted by Elliem, Thu, Feb 11, 2016 8:16am

The scariest part of this journey is right at the beginning. Don't play the "what if " game. Slow down and take one day at a time. Don't give up hope. If, you are not confident with your Doctors, tell them what you are feeling. Give it some time, you

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Feb 6, 2016 · @tom1947 · I have stage 4 head neck, would like to know what others [...]

I have stage 4 head neck, would like to know what others are finding most effective for a good nights sleep. It's 3:36 am and I'm up at the computer unable to sleep again. [...]

Posted by maureen3, Sat, Feb 6, 2016 6:42am

You need your sleep to heal. My doctor  gave me trazadone wich usually helps a lot. When it doesn't i take an ambien. Always ask your doctor because sleep is very important.

[...]

Liked by rodwilson

Posted by coinr, Sat, Feb 6, 2016 12:59pm

If it helps you're not alone. I had a neck dissection 3 weeks ago and have only had a few good nights sleep since. Before I would fall asleep as soon as my head hit the pillow and not wake up until the alarm went off. Amazing how quick things

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.

Jan 26, 2016 · @ponderit · Head and Neck

Head and Neck I was first diagnosed with tonsil cancer in April of 2015. I was given an NED in August of 2015. The comes new years and Im getting sick, pain in the throat , teeth and ears. I was freaked. I was on vacation to see my mom In NYC as she [...]

Posted by ponderit, Tue, Jan 26, 2016 2:53pm

Hi Megm,
This is an issue that we are thinking about a lot. I am not very big on elective surgery. It seems very invasive to get a biopsy. THe ENT I went to in NYC will be getting touch with me tomorrow so I can speak to him about

[...]
Posted by megm, Tue, Jan 26, 2016 3:14pm

Hi @ponderit, It definitely sounds like you are asking the right questions.That's great that the PET was clear in addition to the initial biopsy. I have read that biopsies of that area do typically require anesthesia because it is a complex procedure. Hopefully your conversation with the other ENT will

[...]
@ Mention Someone Photo/Files

You can upload JPG, JPEG, JPE, PNG, GIF, PDF files at or less than 5 MB.