#71119 03-07-2008 07:36 AM | Joined: Mar 2008 Posts: 17 Member | OP  Member
Joined: Mar 2008 Posts: 17 | Hi, My brother was recently diagnosed with stage 3 cancer of the tongue(tumor at the base) and it has spread into the lymph nodes. He is positive for the HPV virus. He just had a PEG put in and is scheduled for radiation and chemo on March 17, for 8 weeks. I have been reading the posts here for a few weeks and decided to join because you all seem so brave,supportive and informative.I am trying to get my brother and his wife to join. It is hard being away from him at this time, he lives in Md, I live on Long Island,NY. His wife just told me today that she was told to get him,caphosal for dry mouth,biotene mouthwash and aquaphor for his face and neck. Anything suggestions or information would be very much appreciated-Thank you Sadsister
Brother,56 yrs.old, diagnosed Feb.2008,scc,bot,+ 2 lymph nodes,stage3,HPV,peg,undergoing chemo and radiation 8 weeks beginning Mar 17,2008
| | | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2008 Posts: 38 | Hi dear Sad Sister, I am so sorry for your sad news. We will get through this, even though, especially at the beginning, it sure makes one's heart sink. That pit-of-the-stomach pain is unavoidable. But here at the ocf site, we've all been through it for ourselves and for loved ones. We are here for you.
AND * * * I live in Maryland, too--in Rockville! Where do they live? I would be so happy to help in any way I can. My cancer was stage iv, and now 18 months later I am cancer free and can eat almost anything. So please KNOW that this is treatable with many patients recovering completely. Where is he being treated? I highly recommend Hopkins in Baltimore, though it was a long drive for our family. Going there was SO worth it for me!!
Please offer your brother and his wife my phone number, 240-644-5558 (cell), and let them know that I will be glad to go visit them in person and answer any questions, and encourage them. Really, I will do that. You can call me any time, too, okay? If I don't answer, please leave me a message. I will definitely get back to you asap!
I'm so glad you've signed on! Don't lose heart, Sad Sister, and know that your whole family is in our prayers. This a journey you do not have to take alone. We're with you!
Carol Kanga
Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
| | | | | Joined: Mar 2008 Posts: 17 Member | | OP Member
Joined: Mar 2008 Posts: 17 | Thank you for replying Carol Kanga. My brother and his wife live in Mitchellville (near Bowie) They did go to Hopkins but switched doctors and are now going to University of Maryland Medical Center in Baltimore(I believe that is correct).
Thank you for your kind words, I appreciate it
I will send them the info that you gave me
Brother,56 yrs.old, diagnosed Feb.2008,scc,bot,+ 2 lymph nodes,stage3,HPV,peg,undergoing chemo and radiation 8 weeks beginning Mar 17,2008
| | | | | Joined: Feb 2008 Posts: 38 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Feb 2008 Posts: 38 | Hi again, Sad Sister, you are so welcome. I'm very glad you brother is in the hands of such renowned experts, and it's great that they explored their options. Living in this area has its advantages.
Of course I understand if your brother and his wife might not like discussing such a personal event with complete strangers. Maybe as he peruses the website, he'll become more comfortable with the idea. My heart goes out to you all, because it's just overwhelming, especially at the start.
Please do keep us posted; we really care and will help all we can.
Carol
Non-smoker non-drinker, 50 when diagnosed 9/11/06 stage IV scc of oropharnyx, malignant lymph nodes both sides of neck. Cause=HPV16. Daily chemo & daily IMRT for 7 weeks. In 2 clinical trials at Johns Hopkins, good results. Peg tube out March 07. Update September 2014: gratefully in good health!
| | | | | Joined: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Hi Sad Sister:
YTou have found a great group of very caring individuals here. I know this forum was a great help to me. If you go to "Getting through it project", go to the - "What I wish I known then" section. Great advice
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | Joined: Jun 2007 Posts: 510 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Jun 2007 Posts: 510 | SS: Welcome to OCF! As you've already observed, there are many caring folks here. Keep posting and let us help you through this as best we can.
Lois & Buzz in NC
CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
| | | | | Joined: Mar 2008 Posts: 17 Member | | OP Member
Joined: Mar 2008 Posts: 17 | Thank you Bill in NC (I have a sister in Cherryville NC)I took your suggestion and read through the whole section of "Wish I had known then" I took many notes and will pass them on to my brother and sister-in-law. It was extremely helpful. I am very grateful to have found this website.
Thanks again
Sad Sister
Brother,56 yrs.old, diagnosed Feb.2008,scc,bot,+ 2 lymph nodes,stage3,HPV,peg,undergoing chemo and radiation 8 weeks beginning Mar 17,2008
| | | | | Joined: Oct 2006 Posts: 8 Member | | Member
Joined: Oct 2006 Posts: 8 | SS, I live in Bowie. My husband was dx with BOT cancer in 06 and finished treatment at Hopkins in Dec 06. He is doing great now. Aside from a bit of dry mouth and not liking sweet things anymore, he is back to normal. Your brother will get through this. How old is he?
Wife/CG to husband SCC BOT Stage 1 N0M0. Finished treatment (IMRT x 35) 12/26/06. Doing great now!
| | | | | Joined: Mar 2008 Posts: 17 Member | | OP Member
Joined: Mar 2008 Posts: 17 | My brother just turned 56. I am so happy to hear that your husband is doing well. What is BOT cancer ? I am not familiar with alot of the terminology yet,but I am learning.
Thank you
SS
Brother,56 yrs.old, diagnosed Feb.2008,scc,bot,+ 2 lymph nodes,stage3,HPV,peg,undergoing chemo and radiation 8 weeks beginning Mar 17,2008
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 65 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 65 |
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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