newly diagnosed Base of Tongue with lymph node involvement
My husband Robert was diagnosed on 1/13/12 with BOT cancer at 48 years of age, he is Stage IVA - T1-N2b-M0. He is scheduled for treatment with the Lehigh Valley Health Network in PA and it will be 7 weeks of cysplatin and radiation. We went to Sloan Kettering in Manhattan yesterday for a second opinion and are processing all the information. They specialize in specific cancers and said that if the radiation oncologist is experienced with head and neck we should stay with them because of logistics. Also, it would be better as we are young and raising our children which would not allow me to stay with him in the city. They say that support and the caregiving is very important for treatment and healing. He is scheduled to go on Thursday to Lehigh Valley for his mapping/tattoos and treatment would start 2/14. He had his port and peg tube placement last Friday. I welcome any and all advice or thoughts.
Thanks,
Denise
Comments
-
wish you luck
and the best on this journey. My case is different but a lot of survivors can came here and send you information. Also try the OCF Forum. best wishes0 -
Hi Denise and Welcome
Welcome to the forum, sorry you have found your way here by the situation....
Sloan gave you some very good advice I believe...
Here is my background from another recent post;
I was Dx with STGIII SCC HPV+ Tonsil Cancer and a single lymphnode (all on the same side)...
First, don't or try not to think doom and gloom...it's a very treatable cancer these days, with very good results.
I finished up mid June 2009, all clear to date....just had a CT today, but won't get those results for a few days.
One thing to remember during all of this is hydration....you can't stay hydrated enough basically...it's a most and will put you down if you don't stay hydrated.
Here is a link to the SuperThread with tons of good infomation;
SuperThread
Others will chime in with their experience and to welcome you as well....
Best,
John0 -
Welcome
Staying local is fine for this. The key is the right equipment, machine and software and the expertify ise to run it. That was good advice on their part and will simplify your situation
quite a bit. The treatment will likely seem pretty easy at the start, but it tends to get harder later on. The odds of success are actually very good, so you all be brave and carry on. Lots of us have been about exactly where you are headed so check back often. I've had BOT cancer in 1998, treated when the older conventional rads were delivered through very large ports, and did just fine with that. I was 45 at the time. So it can certainly be done to good effect, as I'm still around.
Welcome, and keep ccoming back.
Pat0 -
exact diagnosislongtermsurvivor said:Welcome
Staying local is fine for this. The key is the right equipment, machine and software and the expertify ise to run it. That was good advice on their part and will simplify your situation
quite a bit. The treatment will likely seem pretty easy at the start, but it tends to get harder later on. The odds of success are actually very good, so you all be brave and carry on. Lots of us have been about exactly where you are headed so check back often. I've had BOT cancer in 1998, treated when the older conventional rads were delivered through very large ports, and did just fine with that. I was 45 at the time. So it can certainly be done to good effect, as I'm still around.
Welcome, and keep ccoming back.
Pat
I was T1N2bMX, but so is your hubby actually because of the lymph node involvement. I had 39 rads and three rounds of cisplatin every 21 days. I was 49, doing well three years later. Do as much reading here as you can. Welcome to the community Denise.0 -
My husband had the exactratface said:exact diagnosis
I was T1N2bMX, but so is your hubby actually because of the lymph node involvement. I had 39 rads and three rounds of cisplatin every 21 days. I was 49, doing well three years later. Do as much reading here as you can. Welcome to the community Denise.
My husband had the exact diagnosis and treatment. It was hell for him (everyone is different). Today, he has no evidence of disease. We are 9 months out and still recovering from treatment. Well actually, after his first treatment of cisplatin, it affected his kidneys and they switched him to Carbolatin/Taxol. Like they said read all the posts and Sweets info page. The only thing that I was not prepared for is the healing time after treatment. ike they say everyone is different, some work during treatment some cant. My husbands case he could not work, and still not working to this day. If you need any info feel freet to message me. Welcome to the board.0 -
Advice
Welcome aboard Robert and Denise....
first off let me say everyone here will be most helpful.
I was stage 4 with three lymph nodes involved. Mine was smoking along with HPV. I had 35 radiation treatments along with 6 chemos.
I am divorced with no family and I lived with friends in the city where I had my treatments (about 80 miles from home).
Working was out of the question for me so I did the FEML. I do know some who worked all thru their treatments and all I can say is hat's off to you to anyone who can do that!
Take each day as it comes, ask lots of questions, take notes, stay calm and know in today's world this is NOT a death sentence. I was done with treatments on Dec. 18 2010 and it hasn't been an easy road but today my new normal finds me almost as good as I was before!
Every day is a good day.
Good luck to you both and we will all be thinking of you...
Peace,
Nancy aka toughcookie0 -
Well Look At You....arndog64 said:My husband had the exact
My husband had the exact diagnosis and treatment. It was hell for him (everyone is different). Today, he has no evidence of disease. We are 9 months out and still recovering from treatment. Well actually, after his first treatment of cisplatin, it affected his kidneys and they switched him to Carbolatin/Taxol. Like they said read all the posts and Sweets info page. The only thing that I was not prepared for is the healing time after treatment. ike they say everyone is different, some work during treatment some cant. My husbands case he could not work, and still not working to this day. If you need any info feel freet to message me. Welcome to the board.
Congrats...you have reached a milestone....graduated from seeking answers, to giving advice, and answers based on your experiences.... I'm proud of the knowledge you have gained on your journey.
Best,
John0 -
Sorry you have a need for this site. but glad you found it.
My husband was diaqgnosed with stage 4 and 2 lymph nodes. he finished treatment the end of August due to two hospitilizations. He had 40 rads and two cisplatin. The cisplatin was damaging kidneys so had to stop. They did 3 erbitox. He had the first PET in November which showed a ribbon of activity. Doc said it could be radiation risidual or scar tissue. He goes for next PET next Monday.
If I can give you any advice it would be hydration, especially after chemo. That is what put my husband in the hospital twice for a week each time. Hope your husband has an easy time.
Yor doctors are right. The closer to home the better. We drove 45 minutes to and from every day for 8 weeks. You think you will have a lot of time to catch things up. But the stress and worry kept me exhausted. Your huaband needs you close when he is going through the treatments, even if he sleeps all the time. Just knowing you are there is a comfort for you both. I can't imagine not being there during his treatment and wondering if he is getting the care he needs.
You are both in my prayers.
Debbie0 -
treatment
Hi Denise. I do not know all of the jargon of T1-N2b-MO yet. I was diagnosed MArch 2011 with stage 3 and a nickel sized tumor on the base of my tongue. The tumor was surgically removed with a Da Vinci robotic machine. It was actually dime sized and the edges were clean and clear. 38 lymph nodes were removed from the left side of my neck. Pathology showed that the evil little guys had made microscopic holes in node. Right side of neck did not show signs of cancer. I had 33 sessions of radiation from a tomo machine which can specifically locates the direction and strength of the radiation. I was scheduled for 3 large doses of cisplatin though only had 2 as the chemo doctor only wanted to have the chemo during the radiation. My 2nd dose was postponed as my blood counts dropped too low. Ask your doctor about this. I did not get tatooed as the mask was tatooed. The first time with the mask being clamped down onto your face is kind of freaky and claustrophobic. Had them take it off several times so that I could adjust physically and mentally. The radiation burns the outside of the neck and inside of the throat. I used aquaphor cream to help with the neck burn. I found this better than the radia gel which the hospital gave me. It was hard to swallow after a week. Thought pain was going to be real bad then it backed off. Suggest carnation breakfast drink for g tube feeding. 500+ calories per can and is less expensive than ensure. See if Lehigh Valley has a dietician. For the chemo take the anti nausea meds before you feel ill. After the first chemo, i took my meds when I felt ill. Next time I took them right after the treatment. Much more effective. Ask the doctors and nurses [which mat have more time] a lot of questions. Hope this helps. Try to stay positive. My October 2011 PET scan was clean. My January 2012 CT scan was clean. Best, Homer0 -
Hi, Homerhdwchisholm said:treatment
Hi Denise. I do not know all of the jargon of T1-N2b-MO yet. I was diagnosed MArch 2011 with stage 3 and a nickel sized tumor on the base of my tongue. The tumor was surgically removed with a Da Vinci robotic machine. It was actually dime sized and the edges were clean and clear. 38 lymph nodes were removed from the left side of my neck. Pathology showed that the evil little guys had made microscopic holes in node. Right side of neck did not show signs of cancer. I had 33 sessions of radiation from a tomo machine which can specifically locates the direction and strength of the radiation. I was scheduled for 3 large doses of cisplatin though only had 2 as the chemo doctor only wanted to have the chemo during the radiation. My 2nd dose was postponed as my blood counts dropped too low. Ask your doctor about this. I did not get tatooed as the mask was tatooed. The first time with the mask being clamped down onto your face is kind of freaky and claustrophobic. Had them take it off several times so that I could adjust physically and mentally. The radiation burns the outside of the neck and inside of the throat. I used aquaphor cream to help with the neck burn. I found this better than the radia gel which the hospital gave me. It was hard to swallow after a week. Thought pain was going to be real bad then it backed off. Suggest carnation breakfast drink for g tube feeding. 500+ calories per can and is less expensive than ensure. See if Lehigh Valley has a dietician. For the chemo take the anti nausea meds before you feel ill. After the first chemo, i took my meds when I felt ill. Next time I took them right after the treatment. Much more effective. Ask the doctors and nurses [which mat have more time] a lot of questions. Hope this helps. Try to stay positive. My October 2011 PET scan was clean. My January 2012 CT scan was clean. Best, Homer
Good to hear from you0 -
Another Base of Tongue Survivor
Stage 4, T2N2 - diagnosed at age 44. Got my first clean scans almost a year and a half after treatments started - it took me a little longer to get there than it does many, but that's OK - long as I got there. I had a PEG too - no port, though - I had a PICC line instead. I also had Cisplatin. With rads, though, I had Carboplatin. I was anxious initially because I was going to a small local center, and not a Comprehensive Cancer Center. It was nice, though, to only have a seven minute trip for treatments and appointments. I, too, had markings on my mask, not tattoos on my skin. I did have small marks put on me with a permanent marker, but I usually kept them covered with a waterproof bandage.
Do well - keep us updated. Oh - and YOU drink lots of water, too. It'll help with your energy levels, and he won't feel like he's the only one downing a pond every day.0 -
Welcome Denise
Stage 4 BOT here. Had 7 weeks of rads along with 3 infusions on Cistplatin. Lots of good advice already from the kind folks here and from your MD's.
Went through treatment not needing the PEG, though eating was difficult since everything tasted like stale cardboard eventually.
I was one of the luckier ones in that I tolerated treatment fairly well and recovery afterward was pretty straight-forward. I didn't get a clean scan until one year post treatment, which gave some anxious moments. Am 18 months out and life is good. Robert can do this. Stay strong. Cheers.
Jimbo0 -
The PondPam M said:Another Base of Tongue Survivor
Stage 4, T2N2 - diagnosed at age 44. Got my first clean scans almost a year and a half after treatments started - it took me a little longer to get there than it does many, but that's OK - long as I got there. I had a PEG too - no port, though - I had a PICC line instead. I also had Cisplatin. With rads, though, I had Carboplatin. I was anxious initially because I was going to a small local center, and not a Comprehensive Cancer Center. It was nice, though, to only have a seven minute trip for treatments and appointments. I, too, had markings on my mask, not tattoos on my skin. I did have small marks put on me with a permanent marker, but I usually kept them covered with a waterproof bandage.
Do well - keep us updated. Oh - and YOU drink lots of water, too. It'll help with your energy levels, and he won't feel like he's the only one downing a pond every day.
I love the humor, when I read this I couldn't help but laugh. You know a good laugh especially when you have to hold your stomach/peg tub.
Robert0 -
You found a good site
Robert and Denise,
I am sorry that you are here as the others have mentioned, but glad that you did find the site with people available to answer your questions when you think of them while at home.
Robert, you need to keep your weight as close as possible to where you are at the time of the fitting of the Mask. If you lose too much weight, you will move around in the Mask and treatment may be stopped to refit you with a new mask. A quick tip I used to maintain my weight was to eat the calories needed each day. Example, if you currently weigh 200lbs, mulitply that by 12 and that is the number of calories you need each day to maintain that weight. 200 X 12= 2400 calories
Denise and Robert, I had basically the same type of cancer, Base of Tongue cancer. T1N1M0. After surgery, I was told it was T1N2M0 as there were 2 lymphnodes involved and the Surgeon removed over 30 lymphnodes.
When you have time, check the Super Thread that Sweetblood bumps up each week to keep it on the front page. Some of your questions may be answered from there. As the radiation starts, try using the Baking Soda and Salt solution as needed, I used it as often as every 30 minutes as the weeks passed.
Like some of the others here, my Mask was marked, not my body.
My Best to Both of You and Everyone Here0 -
Ask about Laser for skin
One thing I haven't read here much about is laser treatment for the radiation burns on the neck.
When my burns got to be quite red, sore and beginning to crack they put me under a red laser for 15-25 mins a day. Within 2 days there was improvement and within a week my neck was completely back to normal. I kept up the sessions (2 per week) until the end of treatment and never suffered from burns.
They said it was a new treatment and I haven't read about it anywhere but it was a miracle.
Larry0 -
laser wowLarrykins said:Ask about Laser for skin
One thing I haven't read here much about is laser treatment for the radiation burns on the neck.
When my burns got to be quite red, sore and beginning to crack they put me under a red laser for 15-25 mins a day. Within 2 days there was improvement and within a week my neck was completely back to normal. I kept up the sessions (2 per week) until the end of treatment and never suffered from burns.
They said it was a new treatment and I haven't read about it anywhere but it was a miracle.
Larry
Larry, I never heard of the red laser. Thanks for posting this. I will mention this to my docs at Seidman Cancer center of University Hospitals in Cleveland. On another post, someone mentioned the side effect of neurapthy [sp?]. I have found accupuncture has helped with my hands and feet. Homer0 -
HPV test came backhdwchisholm said:laser wow
Larry, I never heard of the red laser. Thanks for posting this. I will mention this to my docs at Seidman Cancer center of University Hospitals in Cleveland. On another post, someone mentioned the side effect of neurapthy [sp?]. I have found accupuncture has helped with my hands and feet. Homer
Positive!! We are so encouraged with the little bump in the cure rate with this. He has made it through first week with just a reaction with swollen glands in his neck. They gave him steroids and benedryl to combat it. This will now be given prior to the rest of his chemo treatments. Thanks for all the insight and support!
Denise0 -
Fellow HPV SSC from Lehigh Valleydclear14 said:HPV test came back
Positive!! We are so encouraged with the little bump in the cure rate with this. He has made it through first week with just a reaction with swollen glands in his neck. They gave him steroids and benedryl to combat it. This will now be given prior to the rest of his chemo treatments. Thanks for all the insight and support!
Denise
Robert and Denise, My wife Jen and i may run into you guys as I start Tx at Lehigh Valley next week. I had SSC wiuth origin on right tonsil in 2006. Removed tonsil/tumor through mouth then 33 rad treatments. Thought I was done but it's back. S4 base of tongue on opposite side. In 2006 I had IMRT radiation by Victor Risch at LVHN. He is retired now but I have Dr. Andrews doing the rad and Chemo with Dr. Baron up stairs. The positive HPV is huge. Unless you have other health issues you should be fine. LVHN has a great rep for Radiation and Chemotherapy and the travel puts a montrous burdenthat you do not need.0 -
Robert goes for radiationbuellman91 said:Fellow HPV SSC from Lehigh Valley
Robert and Denise, My wife Jen and i may run into you guys as I start Tx at Lehigh Valley next week. I had SSC wiuth origin on right tonsil in 2006. Removed tonsil/tumor through mouth then 33 rad treatments. Thought I was done but it's back. S4 base of tongue on opposite side. In 2006 I had IMRT radiation by Victor Risch at LVHN. He is retired now but I have Dr. Andrews doing the rad and Chemo with Dr. Baron up stairs. The positive HPV is huge. Unless you have other health issues you should be fine. LVHN has a great rep for Radiation and Chemotherapy and the travel puts a montrous burdenthat you do not need.
Robert goes for radiation around 2:15 and Tuesday he goes right after rads. for his chemo. His doctors are Dr. Ashish Shah - Hemotology Oncologist and Dr. Alyson McIntosh - Radiation Oncologist. LV also sees him twice a week for hydration which I think is great with being proactive. Best of luck to you and maybe we will run into you.
Denise0 -
Morning guydclear14 said:Robert goes for radiation
Robert goes for radiation around 2:15 and Tuesday he goes right after rads. for his chemo. His doctors are Dr. Ashish Shah - Hemotology Oncologist and Dr. Alyson McIntosh - Radiation Oncologist. LV also sees him twice a week for hydration which I think is great with being proactive. Best of luck to you and maybe we will run into you.
Denise
Once things start rolling, I will be getting rads at 8 AM and then going right upstairs.My schedule is Mon. then Hydration on Wed. and Fri. In 2006 I did the same thing then went right to work and never missed a day. Just FYI if you have to miss a radiation treatment, that is no big deal.....they just add it on at the end. Do your Docs say Robertwill need surgery after the burn/poison regimen?We live in Zionsville?
Bill0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 397 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.4K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 539 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards