SCC at base of Tongue

13

Comments

  • Dave45042
    Dave45042 Member Posts: 17
    #42
    debbiejeanne said:

    dave, i'm glad you won't need

    dave, i'm glad you won't need surgery.  one tx gets started, time will move quickly and then you'll be done.  we will be here for you as you go through tx.  if you listen, you'll hear us cheering you on from the sidelines.  we're there.  just wondering, are you being treated at the Barrett Center in Cinti?

    God bless you,

    dj

    Treatments

    The Dr's are from the Barrett Center, but my treatments are at West Chester Hospital

  • Dave45042
    Dave45042 Member Posts: 17
    #43
    Consultations done

    Well all consultation and biopsies are done, it is HPV that caused the tumor so it will respond better to treatment according to the DR's.  I am having 35 radiation treatments and 3 Chemo's, I elected to join a study group that has shown that people on Metformin respond better to treatments, First treatment is on 8-31-15, it will be a Radiation and Chemo on the same day.  Will keep everyone posted on my progress, thanks again for all the support and info.  Be Well Everyone

  • donfoo
    donfoo Member Posts: 1,773 Member
    #44
    Dave45042 said:

    Consultations done

    Well all consultation and biopsies are done, it is HPV that caused the tumor so it will respond better to treatment according to the DR's.  I am having 35 radiation treatments and 3 Chemo's, I elected to join a study group that has shown that people on Metformin respond better to treatments, First treatment is on 8-31-15, it will be a Radiation and Chemo on the same day.  Will keep everyone posted on my progress, thanks again for all the support and info.  Be Well Everyone

    humm...

    I did not read the full thread but if a "study group" means clinical trial and it is a testing deescalation. please ask enough questions to satisfy yourself you are not potentially comproming your outcome relative to standard of care. At least for me I would not consider any trial unless prognosis with standard of care was very poor.

  • Louba
    Louba Member Posts: 1
    #45
    Dave45042 said:

    Consultations done

    Well all consultation and biopsies are done, it is HPV that caused the tumor so it will respond better to treatment according to the DR's.  I am having 35 radiation treatments and 3 Chemo's, I elected to join a study group that has shown that people on Metformin respond better to treatments, First treatment is on 8-31-15, it will be a Radiation and Chemo on the same day.  Will keep everyone posted on my progress, thanks again for all the support and info.  Be Well Everyone

    Hi Dave

    My husband was diagnosed with BOT SSC with metastasis to one lymph node in his neck in March. The first biopsy showed that it was caused by smoking. (He quit smoking 20 years ago.) He had to have his bottom teeth removed first, in April, because he had periodontal disease, then underwent robotic surgery and neck dissection in May.  The pathology report showed all margins were clear and that his cancer was caused by HPV, not by smoking.

    In July he started radiation (no chemo). He was supposed to do 30 treatments (5 days a week for 6 weeks) but only got through 12 before he decided to stop. Was it the right decision? We don't know but we're hoping that by the damage that the radiation did to his throat in those two and a half weeks, if there was any cancer there, the 12 radiation treatments had to have killed it. He had lost about 10 lbs in the 10 days he was in the hospital after his surgery because he had a tracheostomy and nasogastric feeding tube. He gained some back but has lost 13 lbs in the last month since he started radiation. He only weighed 170 lbs to begin with so he can't afford to lose anymore. The hospital suggests he drink Boost but there's so much sugar in those that we're trying to find alternative ways to help him gain back. He needs to stay healthy to keep the cancer away. 

    He will see his oncologist every two months for the next year to make sure he doesn't have a recurrence.

    My husband is 55 years old. He was only 18 when his dad died from colon cancer and his mom from breast cancer two months later. His only brother also passed away from colon cancer 3 years ago. Imagine the shock of finding out he had BOT cancer when we've been making sure he's being screened every couple of years for colon cancer. With cancer, you just never know. 

    It's not a nice journey to go through but my husband has a positive attitude and we all believe that it will help us all to get through this. With the love and support of your wife, family and friends, you will get through it too. Godspeed and good luck. 

     

  • Dave45042
    Dave45042 Member Posts: 17
    #46
    Clinical Trial

    I opted out of the clinical trial, was going to make me drive 150miles round trip 6 or 7 times during the 7 weeks of treatment, but everything is scheduled, I have Radiation on 8-31-15 @ 7:15am and Chemo same day @ 8:30am.  Ready to get this started and Whoop Canacers A**.

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #47
    Dave45042 said:

    Clinical Trial

    I opted out of the clinical trial, was going to make me drive 150miles round trip 6 or 7 times during the 7 weeks of treatment, but everything is scheduled, I have Radiation on 8-31-15 @ 7:15am and Chemo same day @ 8:30am.  Ready to get this started and Whoop Canacers A**.

    Dave, i will be praying for

    Dave, i will be praying for you as you take this journey.  Put on your battle gear and really give cancer an a$$ kicking!!

    God bless you,

    dj

  • Barbaraek
    Barbaraek Member Posts: 626
    #48
    Best of luck Dave

    My husband just finished up radiation and chemo 5 weeks ago and is now doing 3 additional cycles of chemo for nasopharyngeal cancer. I wish you the best of luck and hope you have minimal pain. If you get burns from the radiation Aquaphor is good, but we also had a script for Silvadene which is a cream used for burn patients. It helped a lot for external weepy areas where they hit the lymph nodes hard with intensity modulated radiation.

    HPV+ is a good thing with oral cancers...they seem to respond better, so hopefully it will work in your favor.

    I lived in Cinti. for 7 years while my husband went to medical school there I did my doctoral work at UC. When you're all recovered, please have a Skyline Chili (3 way) and alarge scoop of Graeter's vanilla chocolate chip ice cream for me!

    Barb

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #49
    Barbaraek said:

    Best of luck Dave

    My husband just finished up radiation and chemo 5 weeks ago and is now doing 3 additional cycles of chemo for nasopharyngeal cancer. I wish you the best of luck and hope you have minimal pain. If you get burns from the radiation Aquaphor is good, but we also had a script for Silvadene which is a cream used for burn patients. It helped a lot for external weepy areas where they hit the lymph nodes hard with intensity modulated radiation.

    HPV+ is a good thing with oral cancers...they seem to respond better, so hopefully it will work in your favor.

    I lived in Cinti. for 7 years while my husband went to medical school there I did my doctoral work at UC. When you're all recovered, please have a Skyline Chili (3 way) and alarge scoop of Graeter's vanilla chocolate chip ice cream for me!

    Barb

    what a small world, barb!  i

    what a small world, barb!  i live in cinti and go to the barrett center for my follow up visits.  and, skyline 3-ways are my favorite food so i'll have one in your honor.....lol.  i'm always looking for a reason to go there!

    God bless you,

    dj

  • Dave45042
    Dave45042 Member Posts: 17
    #50
    First Treatments 8-31-15

    Had my first treatment and fight with the radiation mask, once it dried it was pressing on my adams apple, that was rough.  But made it through and done the first Chemo, no side effects on the first night, but stomach is a little unsettled, had to sleep sitting up, and is still a little un-settled this morning.  Will keep everyone posted, I will answer any questions for anyone that I can, just as this group done for me, fantastic people in this group

  • wmc
    wmc Member Posts: 1,804
    #51
    Dave45042 said:

    First Treatments 8-31-15

    Had my first treatment and fight with the radiation mask, once it dried it was pressing on my adams apple, that was rough.  But made it through and done the first Chemo, no side effects on the first night, but stomach is a little unsettled, had to sleep sitting up, and is still a little un-settled this morning.  Will keep everyone posted, I will answer any questions for anyone that I can, just as this group done for me, fantastic people in this group

    Just one day at a time

    One down. Just go one day at a time, and swallow water. Stay hydrated and just remember to swallow water. You can forget how to swallow in a matter of days, especially if your throat swells up. When it get rough just go day by day and some days it's hour by hour. 

    Bill

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #52
    Dave45042 said:

    First Treatments 8-31-15

    Had my first treatment and fight with the radiation mask, once it dried it was pressing on my adams apple, that was rough.  But made it through and done the first Chemo, no side effects on the first night, but stomach is a little unsettled, had to sleep sitting up, and is still a little un-settled this morning.  Will keep everyone posted, I will answer any questions for anyone that I can, just as this group done for me, fantastic people in this group

    dave, i'm glad the first is

    dave, i'm glad the first is over b/c that means you are on your way!!  i hope that is the only trouble you will have and i assume they fixed the part pressing on the adams apple.  good luck, dave, you will be ringing the bell before you know it and we will be here to congratulate and celebrate with you!

    God bless you,

    dj

  • MrsBD
    MrsBD Member Posts: 617 Member
    #53
    Getting started

    It's a good feeling to finally get treatment started and I'm glad your reaction was mild. There is plenty of experience on this site and people will be here with advice and prayers whenever you need it.  

  • Dave45042
    Dave45042 Member Posts: 17
    #54

    So far the most annoying thing about treatment, it has really messed with my acid reflux and have to hiccups for 20 hours a day. My wife found a section in this blog about hiccups headed there now to do some reading.  Today is the 2nd hydration and 3rd radiation.

  • Dave45042
    Dave45042 Member Posts: 17
    #55
    Chemo Side Effects

    I am experiencing some very "Head Cold" type side effects, can I take allergy meds to clear the pressure in my head up?

  • Barbaraek
    Barbaraek Member Posts: 626
    #56
    Dave45042 said:

    So far the most annoying thing about treatment, it has really messed with my acid reflux and have to hiccups for 20 hours a day. My wife found a section in this blog about hiccups headed there now to do some reading.  Today is the 2nd hydration and 3rd radiation.

    Dave, ask if you can have Prilosec for the acid reflux. Also consider sleeping in a recliner or using a wedge pillow to help with that.  Not sure I have any advice about the hiccups...it must be incredibly annoying! I hope you find some relief soon.

     

    Barbara

  • Dave45042
    Dave45042 Member Posts: 17
    #57
    Barbaraek said:

    Dave, ask if you can have Prilosec for the acid reflux. Also consider sleeping in a recliner or using a wedge pillow to help with that.  Not sure I have any advice about the hiccups...it must be incredibly annoying! I hope you find some relief soon.

     

    Barbara

    Prilosec

    I am already on prilosec but they did increase my dosage from 20mg a day to 40mg. Hiccups went away after a couple days.  Head cold symptoms seem to be getting a little lighter, but I have been relaxing all weekend.  Have to see once I get up moving around.  However the constant ringing in my ears wont go away, sometimes I feel like its going to drive me insane, and the symptom of numbness my head is having for 3 days, going to discuss these with my Dr. today.

  • SimmsFond1
    SimmsFond1 Member Posts: 6
    #58
    We got high hopes!

    I'm so sorry to hear about your condition. I was diagnosed with base of tongue cancer in 1996 and treated with surgery and radiation. You and your family may have lots of questions about this type of cancer. I will be more than happy to share my experiences and some tools to help your family through this time.

     

     Best of Luck

  • chascnj
    chascnj Member Posts: 1
    #59
    3.5 Years After Base of Tongue Diagnosis

    Hi Dave: Believe me, you will be fine. Suggest you find out the HPV status of your malignancy; HPV is a bit easier to cure, but none the less, you will be fine. I had 2 CM mass base of tongue, had 33 IMRT sessions. There was no pain from the malignancy but the radiation did hurt, after about the second week; they gave me oxycontin to ease the pain. If you do radiaition, make sure you take scrupulous care of your mouth and teeth during the same. Magic mouthwash will become your best friend. You will be fine, believe me, you will; I refused to beleive it back then, but here I am.

  • Dave45042
    Dave45042 Member Posts: 17
    #60
    chascnj said:

    3.5 Years After Base of Tongue Diagnosis

    Hi Dave: Believe me, you will be fine. Suggest you find out the HPV status of your malignancy; HPV is a bit easier to cure, but none the less, you will be fine. I had 2 CM mass base of tongue, had 33 IMRT sessions. There was no pain from the malignancy but the radiation did hurt, after about the second week; they gave me oxycontin to ease the pain. If you do radiaition, make sure you take scrupulous care of your mouth and teeth during the same. Magic mouthwash will become your best friend. You will be fine, believe me, you will; I refused to beleive it back then, but here I am.

    thanks

    Yes my tumor is HPV.  I take 10mg Percocets for my back, but the pain in the roof of my mouth and throat are quickly surpassing the relief from 10mg Percocets.  I have my second Chemo on 9-21-15 thats when its going to get bad I believe.

  • Dave45042
    Dave45042 Member Posts: 17
    #61
    Well its been awhile

    I went through some very rough times, the second round of Chemo (sisplatin) shut my kidneys down spent 6 days in the hospital, Ended up with a feeding tube and a port before I left.  Now have found out I lost all of my hearing above 5000hz, except for the 24/7 ringing in my head thats at 12500hz.  Still no appetite but taste is returning.   I find myself not drinking or eating sometimes for days, I do not recommend this, has put me in the Emergency room 3 or 4 times.  I continued to get sick (puking) for 2 months after the treatments ended.  Found out the Dr gave me 2 - 100mg doses of Sisplatin (normal is 40mg).  Side effects are overwhelming, now on Valium to try and stabilize the moods because of the ringing in my head.  It is a definite battle, I think I have bouts of depression, but I went to see my ENT Dr a couple days ago and he put a scope down my nose and said he doesnt see any sign of a tumor and he bets I am Cancer Free.  Now its just a battle with the side effects and insurance company to get them to pay for what I need.  Still seeing a speech therapist and now a psychologist I hope they can help.  I have my after treatment Pet Scan on Jan 11th, 2016, will post again after I get the results.

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