ROLLCALL 2016 - CLOSED 3.1.16 (SEE UPDATE)

Matt,

thank you for continuing to keep the roll call going.  Hope all is well.  

Michelle

Flyfisherman said:

SCC base of the tongue. 

SCC base of the tongue.  Partial Neck Disection surgery at Wake Forest Baptist Medical Center (tonsils and 5 lymph nodes) with 6 rounds of Chemo (Cisplatin) and 30 rounds of radiation.  Completed the process on June 23 2015.  So far, all is good with a Dr visit earlier today and a wonderful nose scope!  I am truly blessed to be here and it's all thanks to the wonderful care I have received and the support of my family and friends.

Coal City , IL about 60 mile SW of Chicago

6 years post, SCC unknow primary HPV+, clinical trial at the University of Chicago. Trial consisted of 8 weeks induction chemo with Erbitux and taxol. Followed by weekly Erbitux and 5 alternating weeks of twice daily radiation (dont know the dose) with 120 hrs of 5FU and hydroxyurea.

My side effects were numerous I was never home for the 5 weeks I should have been. The 18 weeks total I was in treatment I beleive I made it home for maybe 5 days. PEG tube, dual lumen port etc. 

Wish I would have found this site while going thru treatment. Wishes & prayers for all still going thru treatment

Dave

Friends,

Still doing great as we enter another year to live every day to the fullest...have been put on yearly scans/appointments and still going to UT MD Anderson in Houston. Continue to run with several 5k/10k/15k under the belt and another 13.1 in April. Next scan and checkup (3 year & 3 months) is scheduled for late July. This month it will be three years since DX. So thankful for all the encouragement and advice from the many other warriors on this page. I will always be grateful for each who gave encouragement and practical advice over the past three years. Have not been on lately as life with two teenagers has been crazy but try to drop in on a regular basis. 

Jon

Tragic-king said:

Checking in

Thanks for keeping this up and to all the great contributors here.  I'm about 4 months post treatment and making slow progress.  A couple of inspections have not shown anything, but waiting for my first MRI next week before calling NED officially.  Eating is still a challenge due to poor taste and saliva, but keep trying everything and have the occasional surprise (tortilla chips, which I thought would be dry and perhaps painful, proved to give me my first eating that was close to enjoyment).  There are several other side effects, some unexpected, but nothing to stop me moving forward.

Best to everyone!

I joined in Feb 2012. I am living in the midwest. Brr!   I was declared "Cured" of stage 4 SCC of tongue, metz to neck, jugular and 2 lymph nodes.  Suregery X 2, chemo...cisplatin (including overdose last treatment) and rads full board.  Poor prognosis!  Thanking God for each and every day!  I have CKD....chronic kidney disease at 31% total kidney function and maintaining since I was in renal failure after being OD'd.  Thankful for no further loss!  I have a severe hearing loss from chemo as well.  Yet, thanking God every day my feet touch the floor no matter how much aches or pain I have in our biter cold winters etc.  I am now dealing with some eye issues that are new and bone loss.  Eating is a challenge.  It depends on the varied taste I experience! lol  Sweets are pretty nasty to me, yet DQ ice cream is my weakness.  My favorites are fresh vegetables, raw or cooked bc of the moisture in them.  Because my zerostoma is pretty active and having a bit of my tongue removed...little fragments/particles are difficult in eating.  I can aspirate easily...must pay attention to this including water.  Have learned what works for me!  Coconut oil is my BFF I even put it in my mouth and it makes it feel the most "normal" of all!  And is a natural anitbiotic as well.  Biotene products no longer work for me, as they had changed their formulary and it burns my mouth like fire.  I do have trigeminal nerve pain and facial and floor of mouth spasming and that is handled medically as well.  I am Grateful!  I get cold very easily ever since, and need to move closer to the equator! lol   Blessings to All!

(Caregiver to husband) Michigan, joined 2015. Diagnosed in June 2012 with Piriform sinus cancer with 2 lymphnodes, stage iv.  6 weeks chemotherapy with taxol, cisplatin and cetexamaub.  Clinical study with everolimous.  50 radiation treatments with imrt, inpatient with concurrent chemo, 5fu, taxol and hydrea.  3+ year NED.  

peggylulu said:

Thank you Matt for keeping this thread going !

I'm still here and doing well . Still have no salvia , but taste is much better except for sweets which were always my favorite . i have a PET scheduled for Feburary 9th and feel very hopeful that I will still be Seeing MR. NED. I'm sorry I don't check in very often but as you know my problems were so much less than most on this forum that I don't feel like I can offer much help . I'm so happy to still see some of the survivors on here that I know and sad to see the ones that are not . Thank you again to Matt, John, Phrannie and all the others that have been so much help to me and everyone . 

I am still here on the sidelines watching over all of you. I so admire the strength and tenacity each of you have as you fight this beast.

I still struggle daily with the loss of my husband and daughter. Not sure what will happen to me and my big dog as I face the loss of my home, but it cannot compare to what I have already lost or what each of you face every day.

"Never, ever give up"

Luv,

 Wolfen

Hello, 

I'm so thankful for this board and the group of you all working together to battle this disease.  I am the sister to my 54 yo brother, Mark, who was Dx with ENB just last month, January 2016.  I also run BrainCancer.org website and all related social media channels for the nonprofit and have provided brain tumor patient support for the past 4 years to brain tumor patients and their families.  I have been able to help my brother get set up with some wonderful centers/surgeons and we are in the process of choosing our surgeon/medical center for his surgery.  

Mark is a lumber mill manager and had been experiencing loss of smell, sinus congestion for the past 2-3 years.  He attributed it to some bleaching he'd done in an attic.  Mark was dx with a Hyams Grade 2, Kaddish C ENB.  Pet Scan negative for metastasis.  

Mark will have surgery in late Feb or early March and we are awaiting final determination of surgical approach adn radiation recommendations.  

Mesquite Nevada- 2-19-2016. Caregiver. Husband was diagnosed 12-31-2015. He has base of tongue, left lymph nodes and left tonsil stage IV. He has just completed his 18th radiation treatment of 35. 5th chemo of 7. As you all know it's been a difficult journey, to say the least. I'm not usually one to reach out and ask for help. We are both pretty private and independant people. With that being said, it's hard to talk to people who are not living with the problems this treatment creates. Being the caretaker I feel guilty for even thinking I need support. He is the one who is going through all of the pain and procedures. I'm trying to take a little time for myself, but I find he is relying on me for everything. I feel guilty just leaving him for some "me time." He has chemo on Monday's, followed by radiation. He has radiation treatments the remaining four days a week. The nearest cancer center is 40 miles away. I been with him for all of his chemo treatments and taken him to all but one radiation treatment. It's hard to see him in such pain, unable to eat and enjoy food (which was one of his favorite things to do). We moved to a small community two years ago after retiring. We have some good friends but none that really understand what is involved with this type of cancer. I'm hoping to find some help in how to deal with different situations. I thought I would reach out to those who have lived with this type of cancer and those who have been the caretakers.

downinthemouth said:

New to Group

Mesquite Nevada- 2-19-2016. Caregiver. Husband was diagnosed 12-31-2015. He has base of tongue, left lymph nodes and left tonsil stage IV. He has just completed his 18th radiation treatment of 35. 5th chemo of 7. As you all know it's been a difficult journey, to say the least. I'm not usually one to reach out and ask for help. We are both pretty private and independant people. With that being said, it's hard to talk to people who are not living with the problems this treatment creates. Being the caretaker I feel guilty for even thinking I need support. He is the one who is going through all of the pain and procedures. I'm trying to take a little time for myself, but I find he is relying on me for everything. I feel guilty just leaving him for some "me time." He has chemo on Monday's, followed by radiation. He has radiation treatments the remaining four days a week. The nearest cancer center is 40 miles away. I been with him for all of his chemo treatments and taken him to all but one radiation treatment. It's hard to see him in such pain, unable to eat and enjoy food (which was one of his favorite things to do). We moved to a small community two years ago after retiring. We have some good friends but none that really understand what is involved with this type of cancer. I'm hoping to find some help in how to deal with different situations. I thought I would reach out to those who have lived with this type of cancer and those who have been the caretakers.

I sent you a message - you can access it by clicking on CSN email. I'm glad you found us. This is a special place where you will find lots of information, encouragement and support.

Barbara

Heather_Lynn  (Heather) Ankeny, Iowa. I was diagnosed with Olfactory Neuroblastoma 1/12/16 after surgery to remove what was thought to be a polyp obstructing my right nostril. I had a second surgery 2/4/16 to remove remaining tumor. It was Grade II, so while my neck was clear on PET scan I am starting 31 IMRT radiation treatments scheduled on 3/10/16 to just the skull base/sinus area. I'm looking for any information  on side effects during and after radiation for this type of radiation/cancer.