#90687 02-25-2009 11:33 AM | Joined: Feb 2009 Posts: 3 Member | OP  Member
Joined: Feb 2009 Posts: 3 | Hi All, Just a quick note to introduce myself. I was diagnosed with SCC at the base of my tongue in Aug 08'. The cancer had spread to the lymph node which is how we discovered the problem. Since then I have had chemo(cisplatin) concurrent with radiation, neck dissection, and a free flap. The neck dissection and free flap were completed on Jan 19 and I'm still haveing alot of difficulty swollowing solid foods due to pain and swelling. Can you folks with similar experiences tell me if this is normal?
Jimmy, Age 42
SCC Base of Tongue with mts to one lymph node. Two courses of Chemo(Cisplatin) concurrent with 36 IMRT completed in Oct 08' 50% of BOT removed with reconstruction / forearm flap and neck dissection on 1/19/08. Only one node +
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Jimmy and welcome to OCF. It takes the body a long time to recover from the effects of chemo, radiation and surgery. Everyone heals at different rates so this is a difficult one to answer. I would think that what you are describing would take a long time to heal. The golden rule is 1 month of recovery for every week of radiation, with chemo and surgery on top of that it could be alot longer. Most of us have found it takes up to abotu 2 years to get back to almost normal. Best of luck with your continued recovery.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Jimmy, How large was the BOT tumor? How many nodes were + and how large were they pre TX? Why was the decision made to do the ND post Tx? Where were you treated? Were you a tobacco user or did they test you for HPV? Did you have a Peg? Why did you have a free flap? How much weight did you loose? How many chemos did you receive?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Jimmy if I ever reach the stage where I can eat and swallow, you shall be the 1st to know. it can be tough and thro you a curve or 2.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | You didn't mention how much tongue was removed, but I'd say that you are way ahead of the curve being one month out from that, esp with a free flap on BOT!
I had a front of tongue free flap done in June 08 and it took me much longer than a month to get near solid food.
With the finding of more SCC on BOT, and a total glossectomy w/free flap at end of Dec 08, I am still dealing with trach and PEG and am not even 'licensed' to drink yet, much less eat! Although some water can now slip by, even my viscous 'junk gunk' has to come out by way of mouth, not swallowed (I do look forward to that so I can sleep more than a couple of hours at a time until the gunk build-up wakens me).
BTW, with the trach it's kind of a Catch 22 -- I need the trach because I have gunk, but having the trach is causing gunk... The situation is improving however, albeit slowly.
Eat some food for me!
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Feb 2009 Posts: 3 Member | | OP Member
Joined: Feb 2009 Posts: 3 | David & Christine, Thanks for your response. See answers to the questions below. How large was the BOT tumor? The daimeter was roughly the size of a dime. How many nodes were + and how large were they pre TX? Only one node had cancer and it was about 5 cm in diameter. Why was the decision made to do the ND post Tx? PET scans still show uptake following treatment. Where were you treated? Medical University of South Carolina Were you a tobacco user or did they test you for HPV? Used tobaco in my past but, based on location of the tumor docs did not believe it was the cause. I was tested for HPV but do not have results yet. Did you have a Peg? No Why did you have a free flap? It's what my doctors recommended How much weight did you loose? About 30 lbs during chemo and radiations and about 10 lbs so far post surgery. How many chemos did you receive? Two courses
Jimmy, Age 42
SCC Base of Tongue with mts to one lymph node. Two courses of Chemo(Cisplatin) concurrent with 36 IMRT completed in Oct 08' 50% of BOT removed with reconstruction / forearm flap and neck dissection on 1/19/08. Only one node +
| | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Jimmy, I did not have the surgery but rad and chemo for 7 weeks. I'm coming up on the 1 year mark soon and, while I can swallow ok (had to go to a speech therapist to re-learn how) most foods still taste terrible and I don't have enough saliva to process it. Yet others have reported eating normally in a few months. My rad onc just shrugs and says "it's different for everyone."
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You can see what I had below and it would be helpful to others if you added stuff to your Signature Line as well. It will also save you time with future posts.
I didn't have the ND and I was one of the lucky ones that recovered quickly but there is no norm with this cancer and the varied Txs we go thru so hang in there and never give up. Even in the best cases the recovery is measured in years not months. I even saw improvements close to 2 years post Tx. Heck I still might not be finished yet?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | I had my surgery last May and finished radiation and chemo at the beginning of August. I don't remember how long it took me to get back to eating normal foods but I still drink a lot of water/milk when I'm eating dryer foods to make swallowing easier. So, it does take a while to get back to normal.
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Hello Jimmy and welcome to OCF. Although I am sorry that you have to be here, you will find no other place to receive the answers, support and questions that you will here.
My second surgery was 9/08 and I had a free flap. Do you still have some of your tongue? I have just a little nub at the very back, but it does move a little bit. I started therapy for speech and swallowing about 3 weeks post surgery and I am still going now for swallowing. We started with liquids and gradually worked our way up to cottage cheese and some pureed foods which is where I am now. Some people do better with thicker liquids and there are products on the market to thicken them that are carried by Walgreens and possible other pharmacies. I had radiation after surgery and it interrupted my swallowing therapy for a couple of weeks.
As the others have said and I'm sure that your doctor has said also, everyone is different and there really is no normal time for recovery. Are you going to therapy? If not, I would suggest that you do just because it is supervised attempts at swallowing different things plus they will give you exercises that you can do on your own to improve your swallowing ability.
I wish you luck and hope that this has helped some.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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