#17617 06-13-2005 02:25 AM | Joined: Jun 2005 Posts: 1 Member | OP Member Joined: Jun 2005 Posts: 1 | Hi! My name is Carl and my situation is this, On May 13,2005 my father went into the hospital with a collapsed lung. Xrays showed a tumor that proved to be cancerous. May 17, 2005 My mothers needle biopsy came back positive for breast cancer. The next day May 18, 2005 I was diagnosed with epiglottal and tongue cancer, What a horrible coincidence!! My fathers cancer has mestastisized and he has a meeting weds. with his oncologist to decide his treatment. My mom had a lumpectomy and is awaiting lymph node analysis. I had pet and cat scans tues and my body seems to be clean. Friday I had biopsies done under General Anesthesia. The doctor said the tumor was rather large and lymph nodes on both sides of my neck were involved. I will be getting chemo and radiation for 6 weeks sometimes 2x a day. I will also be getting a feeding tube. I would appreciate hearing from all who would like to share with me, Thankyou, Carl | | |
#17618 06-13-2005 02:46 AM | Joined: Apr 2005 Posts: 50 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2005 Posts: 50 | Dear Carl, My heart goes out to you. It's tough going through so many things at once. My husband was diagnosed with Stage IV tongue cancer which involved nodal involvement bilaterally in the neck and he just finished his chemo and radiation txs (radiation was twice a day for 5-1/2 weeks). We are awaiting what comes next. However, my Dad passed away the same day my husband was diagnosed in March and I had so much thrown at me at once. This is a wonderful website and it has given me alot of hope for my husband and I'm sure it will do the same for you. God Bless and stay strong. Regards, Virginia Wife to Doug SCC base of tongue T4N2cM0
Virginia
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#17619 06-13-2005 03:10 AM | Joined: Jun 2005 Posts: 6 Member | Member Joined: Jun 2005 Posts: 6 | Thankyou so much Virginia, Please let me know how things progress for your husband! Blessings, Carl
husband dx may 18, 2005, SCC stage 4, including Epiglottis,Tongue, Throat and Lymph Nodes bi-laterly, will be starting Chemo and Rad. soon
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#17620 06-13-2005 03:12 AM | Joined: Jun 2005 Posts: 6 Member | Member Joined: Jun 2005 Posts: 6 | Sorry, I am logged in on my wifes name LOL!!
husband dx may 18, 2005, SCC stage 4, including Epiglottis,Tongue, Throat and Lymph Nodes bi-laterly, will be starting Chemo and Rad. soon
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#17621 06-13-2005 11:40 AM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Jan 2005 Posts: 156 | hi carl , you try and stay strong and positive my heart goes out to you, may god give you strengh to bere this imyself have had bilateral breast surgery 2yrs ago and also lost my voice box to this beast of a disease. i stay positive for my family . god bless you carl hugs and prayrs your way regards maz | | |
#17622 06-13-2005 12:20 PM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2002 Posts: 642 | Carl, Your diagnosis is very similar to mine, which occurred 3 years ago. My tumor was also at base of tongue on the epiglottis with neck nodes and I had similar treatment to your own, and also had a feeding tube. What you are about to go through is not easy...in fact it is a long hard road (and I did not have sick parents to deal with as well). The good news is that three years later I look and feel normal and live a wonderful life. Sure, I have the constant dry mouth and I can't eat like I used to...but other than that, I can work, play golf,travel, enjoy (or not enjoy) my children, etc. Three summers ago I would not have believed that life could be this good again...so keep the faith, and, best wishes for your family as well.
Danny G.
Stage IV Base of Tongue SCC Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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#17623 06-13-2005 02:23 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Aug 2004 Posts: 217 | Carl, It is hard to imagine so much coming at one family in a one week. You do have a hard road ahead, but we found that a positive attitude (even when it was very difficult), the confidence and trust we put into the medical team working with Tom and the prayers and support of family and friends - and this forum - helped greatly. Tom was diagnosed a year ago with stage IV tonsil cancer - lymph node involvement on both sides. Biopsies, chemo, radiation, surgery.......at the worst, he felt like death and looked it......but keeping focused on the future pulled us ALL through the worst, scariest times. You will hear from many survivors that the #1 thing for you to do is get to a comprehensive cancer center and get the best doctors available. Take a relative or friend for every consult; bring along all the questions that WILL come up almost daily...let your support person take notes and help you reconstruct the doctors visits. TAKE A HAPPY FACE to chemo and radiation....it will help you through. Bring a good book or laptop or music to keep your mind off your troubles if only for a little while. Eat whatever you love now...and much of it, esp. if you have a weight issue like Tom did. Tom just had the feeding tube removed a week ago!  He had it since the 1st of Sept. '04. Eating is a real challenge, but he knows it is a life or death deal. (He has put on 20 of the 30 he lost, but was already too slim when this began). The dry mouth is not nearly as severe - - he can say three words without needing water  His voice is not yet 'his,' but it is sooo much better than 3 months ago. You are facing a challenge bigger than most with much of your energy going towards concern and care of two others you love. This site will be a real help with solid information and this supportive forum. Believe me, you will be in the hearts and prayers of many. Not enough can be said for the group that gathers here. With all our best - and with our prayers for you and your family.. Nicki and Tom
Nicki, wife of Thomas dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#17624 06-13-2005 03:22 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Carl, as a new member-April of this year-I can tell you that the folks in this "club" will be with you all the way. Being in this forum is like having 1000 arms wrapped around you and holding you up. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#17625 06-14-2005 02:18 AM | Joined: Jun 2005 Posts: 6 Member | Member Joined: Jun 2005 Posts: 6 | Thanks to all of you for encouraging and sharing,I wish it didn't take 2 years to get to this point. I have been fighting for social security disability since 1999. It is still not resolved.I had had a heart attack back then plus asbestosis from exposure as a mechaich and plumber. I had medicaid for awhile but lost it when i started getting workmans compensation(175 dollars a week) too much income !! Anyway in july of 2003 I developed a sore throat and after 3 weeks of pain went to the ER and was admitted to ccu for 3 days ,eliminating heart attack as a possibility. They had an ENT doctor examine me with a scope and he said I probably had acid reflux. Without coverage I could not follow up so I started looking for clinical trials relating to acid reflux. I found one being done by the makers of nexium and applied, they scheduled me for an endoscopy and found I wasn't severe enough to participate any further. So still having the pain in my throat and no relief, I started thinking tonsill abcess or throat abcess and came across the yul brynner foundation and saw the article about free head and neck cancer screening. I circled the date on my calender and made sure I went. It was at Sloan Kettering Cancer Hospital in NYC. They concluded I needed to come back for further evaluation. I knew that there would be a charge and without coverage I couldn't make the appointment to go back. I shared the chain of events in prayer meeting at my church and a few days later my pastor handed me an envelope and said someone anonymously donated 1,000 dollars with which Ishould go and get my followup. I made the appointment and within 5 minutes of meeting the doctor he was showing my wife and I the cancer on a tv monitor. He said we need to get on the fast track with scans and biopsies so we could begin the radiation and chemo. I told him I can't afford to continue and he said not to worry as the hospital had a program of financial aid and I should be eligible!! I was approved for one years complete coverage in 3 days.Thankyou God!!!and the private benefactors who made that possible. IU believe I am in very capable hands at Sloan Kettering and will keep the forum updated. Thankyou all again and I am here for anyone else who needs a shoulder! I can do this, Carl
husband dx may 18, 2005, SCC stage 4, including Epiglottis,Tongue, Throat and Lymph Nodes bi-laterly, will be starting Chemo and Rad. soon
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#17626 06-14-2005 06:23 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Carl, That is great news. You are at one of the two best. It is wonderful to know donations go to providing financial help for those who need it. Hang in there. It's a rough road, but we'll try to help you down it.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#17627 06-16-2005 07:27 PM | Joined: Apr 2005 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Apr 2005 Posts: 80 | Thank goodness for the folks who donated that $1000!! Keep posting here Carl. These folks are also heaven sent and will help you through this tough time. :-)
Jennifer
Jennifer Stage II (T2N0M0) SCC diag 4/21/05; partial glossectomy & selective neck dissection (good margins and lymyph nodes negative), jaw split, 1/3 of tongue removed, free flap from left forearm - 5/23/05; 42 years old at diagnosis
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#17628 06-17-2005 10:46 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hello Carl I just wanted to add my well wishes , you have a ways to go and that good positive attitude can really help. Take Care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#17629 06-17-2005 12:15 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Carl, your statement that "I can do this" speaks volumns about your strenght. Lots of people are pulling for you. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#17630 06-17-2005 02:09 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Carl,
You have had a week from hell. Both parents and yourself dx with cancer in one week! I will be pulling for all three of you to beat this diaease. The road ahead can be rocky but many of us have traveled it and survived. When you start treatment post any questions you have and someone with similier treatment will respond.
"Who Better To Ask Than One Who Has Traveled the Path Ahead Of You"
All my Best, Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#17631 06-25-2005 06:16 PM | Joined: Jun 2005 Posts: 24 Member | Member Joined: Jun 2005 Posts: 24 | Hi Danny G., My husband Lee has stage IV base of tongue and epiglottis. I am encouraged reading your note. He is so sick right now and I'm hoping to give him some inspiration. Did you have surgery? He had a total glossectomy and partial laryngectomy and is now undergoing chemo and rad. He had non-hodgkin's lymphoma of the tonsil 9 yrs. ago and couldn't receive enough rad this time since same area involved-although different cancer altogether. They haven't given him a whole lot of hope for swallowing but don't really have a lot of statistics since the combo of total glossectomy and partial laryngectomy is not common. Thank you and God bless Doreen
Caregiver to husband Lee-Stage IV SCC base of tongue/epiglottis. Had total glossectomy/partial laryngectomy/ radical neck dissec 4/05 followed by chemo and rad.
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