| | Joined: Aug 2009 Posts: 21 Member | OP  Member
Joined: Aug 2009 Posts: 21 | Hi, I'm Belinda and I'm almost done with 35 treatments of radiation. 31 down, 4 to go. My biggest problems are not eating (lost over 20 pounds), dehydration, and terrible terrible mucus draining and choking. I'm ready to be done with this already!
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Hi Belinda,
When you go for your treatment tomorrow, ask someone on your medical team if they can arrange for you to get a portable suction unit. It's got the suction similar to what you experience at the dentist office in a portable rechargeable-battery unit.
Also, ask for daily IV hydration. That will help quite a bit. If you don't have a PEG, ask your team and insurance company if you can have home IV infusions for the week or two after you finish treatment. How many calories are you able to get in a day?
I'm sorry you are going through this. This period and the 2-3 weeks following radiation can be tough.
Where is your cancer? Are you getting chemo as well?
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Thanks, I will ask for the portable suction unit. I started IV fluids once last week and then on Tuesday this week. I'm going to ask to go again tomorrow since I can't drink execpt for very small sips of water.
As for calories, I was getting about 375 in a day..but now I can barely get a few sips of any kind of protein drink. I decided I could do without the feeding tube early in treatment now regret that...I talked to my doctor yesterday and he thought the fluids would get me through so I wouldn't have to do the feeding tube this late in treatment.
My cancer is in my tongue but it spread to both sides of my neck in my lymph nodes...
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Was the cancer on your base of tongue or your mobile tongue? For my husband, it was at the base.
I know you probably realize you aren't getting nearly enough fluids or calories. Radiation keeps working after treatment, I recommend planning now to have daily IV treatments through the rest of your treatment and the week following as well. Dehydration can land you in the hospital and make you feel magnitudes worse than you are already feeling. Our insurance covered the cost of home IV infusions. Many do, you just have to ask your insurance company.
What are you taking for your calories? My husband was drinking watered down Boost at this stage of the game...yum! It's not about taste or flavor...it's all about how much you can choke down at this stage of the game.
Do you have any break thru pain medication or magic mouthwash to temporarily numb you mouth so you can try to down more calories and liquids in a day?
Margaret
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C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | The question of oral or base of tongue is still confusing to me. It was on the bottom of the left side of my tongue but I've also heard them refer to it as base of tongue so I'm not completely sure.
Yes, totally aware about my malnutrition issues. I'm trying to dilute the carnation but I choke so bad I just give up. I will try harder tomorrow since I know I need to do this.
I have some numbing meds but they make me so nauseated since my stomach is empty. I do like the Mary's Magic Potion and the Oasis mouthwash. Even water feels like acid on my tongue and swallowing is like hot razor blades going down and it almost always gets stuck and I choke it back up.
I will talk about IV fluids more often. I have a newborn baby and it's hard to be in the outpatient unit for so long..ugh
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | 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 | BelindaJo
You must increase your intake. I know how difficult it is for you. I ended up being stuck in the hospital for dehydration and malnutrition, that was with a feeding tube. Let your doctors and nurses know immediately what your consumption is so they can help you.
Try yoo-hoo or chocolate milk. Its soothing to the mouth. Use magic mouthwash before trying to drink.
Sending prayers and hoping tomorrow is a little easier.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Belinda, you are going thru the mucous , the swallowing and other issue that many of us have been going thru for a couple of years or so. I lost 70 lbs and it is just a big job trying to put weight back on. Just keep doing your best with the food and keep right on living and smiling. There is one thing in your post that has to be eliminated, the " I just Give Up "part. those are three words we don't use in here.
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: Jul 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2009 Posts: 31 | I totally admire you. I've got 12 Rads down and don't know how anyone can do 35 of these. Swallowing is already difficult and everthing I eat taste like salt. Congrats again.
Rick
Age 50 at DX July 13 2009. T1N2BMO, stage III BOT-2 nodes right side, HPV negative, drinker-smoker, cisplatin x 3 IMRT x 39 70 GY, pegged and ported. Started treatment on 8-3 2009. Selective neck disection 11/30/2009, 9 nodes removed-neg pathology
| | | | | 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 | Belinda, please add a signature when you have time. It will help us to better respond to yoru posts by knowing your history. Its easy to do, just click on the My stuff tab and select profile, it will let you type some info about your diagnosis and treatment.
Hang in there, it get rough but you must finish to make sure you take care of this the first time. Nobody wants to do it again due to not finishing.
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: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Belinda, in Australia we have 'Cocaine Mouthwash 0.5%' which is has a numbing agent which lasts for 1/2hour roughly [you don't swallow this], which the cancer center pharmacy makes up, do you have this where you are? We also have 'Lignocaine', a pink gel, can be swallowed, apparently tastes ok, only lasts about 10mins, but it could help. We didn't find out about alternative meds until we demanded them...over here if you don't ask you don't get...good luck...
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | 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 | Belinda,
Inquire about a nasal tube that they slide into your nose and down into your stomach. In office procedure that takes only a few minutes. It's meant for temporary feeding solutions just like this.
Also Try Carnation Instant Breakfast VHC. It has 560 nutritional balanced calories in a 8 oz can and will cut the misery and the time in feedings. You order it thru your pharmacy dept or online and some have suggested that if you get a prescription for it, your insurance company will pick up the tab. I only paid about $32.00 per 24 can case at Walgreens.
It helps the responder to your Post if you include facts about your Diagnosis and Treatment, etc under your Signature. See mine below as an example. To add to your signature go to the top of the screen and click on MY PROFILE. Then click on EDIT PROFILE and scroll down to the Signature Block and type away. Once you add it, It appears every post you make and your questions and even responses are more understandable.
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: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Thanks for your comment. I'm happy to report that I got down a whole can of chicken broth for 9g of protein and a whole 7 up for 210 calories. I also got more IV fluids and a half bottle of water down yesterday. Today hasn't been as successful as of yet but I'm going to get down some more stuff here shortly. Thanks again.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi Rick, YOU CAN DO THIS. It's not comfortable but it is possible. The mucous has been the toughest part for me and many others but it's managable. Please keep yourself hydrated and nourished while in this stage. Good luck and keep us posted.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | WE have magic mouth wash in the states too. The one my oncologist made up himself, has 3 narcotics in it, but it just doesn't last long after you eat, Supposed to take 2 teaspoons before meals. swish, gargle and then swallow it. Same at bedtime. At bedtime it will last longer unless you try to eat. Belinda ,m I had one thing done to me that most don't and that is radiation seed implants put into my tongue by going up thru my chin in the OR then quaranteening me for at least 3 days, This ended up to be 7 days and one step from being put in a home to wait for me to die,. LOLNo way will I leave this earth that easy. I was put into an induced coma for the 3 days. As you can see, there is no set procedure they follow.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi belinda
the part of your post i picked up was that you have a new born baby,surely the best reason i the world to get through this,but how on earth you cope is quite beyond me,you must have a great support network.
all the very best
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Belinda,
You really need to get more in you than 210 cals. Have you heard about Carnation Instant Breakfast VHC? In a small 8 oz can it has a whopping 560 nutritionally balanced cals. Mix it half and half with whole milk and drink one with each meal or as a meal. Four or 5 of those a day is all you need until you get your desire nad or strenght back. I lived on that stuff all thru Tx and at least a year post Tx. I think it saved my life and no I don't get commissions. lol
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: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi David,
Yes I do have some of those. I'm having trouble with anything milk like, it seems to really stick in my throat and not go down even when I dilute it. I have tried the Boost Breeze which are more like fruit juice. That will go down easier, but the fruit tends to burn so that's hard too. I'm going to try diluting the Boost Breeze to cut down on some of the burning so hopefully that helps. It's not got as much calories but they have 250 and lots of protein. Thanks for your suggestion and I'll keep doing what it takes to get nutrition.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi Liz,
Yes, a great family supports me. I just wish I could enjoy the precious stage with my son a bit more...but I'm still here and I do enjoy him so thats what matters. I'm sorry about your husband. That is scary to me as it took him so fast. Were there other medical things that made it progress that rapidly?
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | 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 | Belinda,
I'm sure you will and not being able to drink milk stuff would have been really hard on me as it was so soothing and yes some fruit juices especially OJ burned me as well for a long time post Tx. I also ate a lot of things with gravy, oh and pancakes smothered in syrup. Yum
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Hi Belinda. I've been a bit AWOL on here lately as we've just been overly busy. I'm in Richmond, IN and my husband was treated in Indy. Just curious as to where you are getting treatments? Like Liz I am amazed at the support network you must have to go thru this and have a new baby. I wish you all the best and can only offer to keep coming here for support and advice of those who have been thru it all. I would have gone crazy if I hadn't found OCF.
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | 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 | Belinda, hope it was a good day for you today. Hows the intake? Hope its increasing even thoguh its difficult.
I must have missed the part about having a new baby. I am amazed by this. Treatments are so difficult sometimes and being the mother of a baby too is alot for anyone. In fact, just being a mother to a new baby takes a ton of energy.
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: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | CherylR,
I'm going to the St.Vincents oncology center on 86th street. It seems ok but sometimes I wish I would have taken a bit more time and went to a specialized cancer center. I was just really ready to get started since I had to wait for treatment until I had the baby.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi Christine,
Today is better. My tongue feels better and I've been diligient about using the magic wash. I'm not doing much better with calories, I had an ensure for 250 cals and some chicken broth for 9g protein lastnight and about 3/4 bottle of water. So far today I'm not doing well. I'm going to try to get at least 2 ensures down and 2 bottles of water by 4:00 then see what else I can get down..it's a challenge but I'm up for it! Yes, being a mom to a newborn is very hard during this treatment especially when he pulls at my neck! But, he also gets me through it so the timing is actually a blessing!
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Belinda, It is amazing what you are going through while having a new baby to take care of. I certainly know what you mean about our little guys getting us through. When I got my diagnosis i was devastated but my boys kept me going. I love them even more now. How old is yourt little guy if I may ask? Good luck on finishing up those treatments.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Belinda - My husband had his ND at St. V's on 86th. Radiation and chemo through Methodist. All arranged by CENTA (Center for Ears Nose Throat and Allergies). Wishing you the best.
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Belinda, if you don't have a good blender buy one. There are so many things I have used mine for.Even some of the soups that are lumpy and taste the same after hitting them with the blender, LOL well, not actually hitting them but blending. Stuffed peppers, cabbage rolls are ok. Most things will burn your tongue abd hurt but you need the food so put up with some burning and pain. My advice might not be real sound tho. LOL I startd hyperbaric oxygen treatments tomorrow daily for the next 6 to 8 weeks. But you need energy for the baby.
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: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Angelina,
My son is 12 weeks old tomorrow. He was born on June 1st and I started my treatments on July 8th to give myself some time to recover from childbirth.
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | 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 | Belinda
How sweet your baby must be. At 4 months old they are beginning to get happy and develop their personalities. Does your son laugh and giggle yet? When a little baby laughs it lights up the whole room with happiness.
He is reason enough to get thru this and move on to a better life without cancer. What a wonderful day it must be to come home to your little bundle of joy. I sure miss that my kids are grown.
Im glad you joined OCF. There are so many members here who will give you helpful info and support when you need it. I wish you the best of luck with your tx and 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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi Belinda
No Rob didn't have any underlying issues,he was as healthy as an ox and hadn't seen a doctor for 15 years.He was however a heavy drinker and a smoker and of course his diagnosis was missed by a negligent dentist who failed to identify his tumour when he saw it seven months prior to his eventual diagnosis.By the time it was found he already had a very large secondary and his survival chances were reduced to 30% from the outset.You have so much to fight for and thats half the battle,the other half is youth,strength and great doctors.
The very best of luck
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Hi Belinda,
You're a very very strong woman, per the above, you need to and WILL get through this, for your baby's sake, and more importantly your sake. Hope you have lots of love & help around you, don't forget, if anyone offers, say 'yes please'!! take care, you'll do good.
Jeanna
x
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There is absolutly nothing that compares to a baby. The 1st roll over, the 1st laugh outloud, the first almost word, the 1st tooth. Just everything is amazing about them. I can feel the love radiating thru the web for your baby. I have you in my prayers and thoughts and you will watch the baby mature into a great adult.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Belinda,
Congrats on having your own sweet angel in this world. I bet he gives you so much happiness. A lot of us here are on Facebook. Are you on there? We usually see pics of each other which is fun...but we can see your sweet baby too!! No doubt you are a strong woman....
I know how hard it is to eat but I'm sure you know you will feel better the more nutrition you give yourself. My surgeon told me to drink at least 6 cans of Ensure a day b/c I wasn't healing. Turns out you have to eat to heal...who knew?!?!? Drink one more than you think you can get down...you can do it.
Last edited by suzanne98; 08-24-2009 05:06 PM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Aug 2009 Posts: 21 Member | | OP Member
Joined: Aug 2009 Posts: 21 | Hi all,
Thanks for all your support and well wishes. I'm happy to report that the treatments are finally done!! YEAH. Now on to healing... Also, yes I'm on facebook. Belinda Andrews Indianapolis, feel free to friend me! Thanks
Belinda Jo- Age 28 non-smoker, casual wine drinker, original tx 5/09, T3/N2 (now N0)/M0, 2 tongue surgeries partial glossectomy, Rad x 35 treatment began 7/8/09, no chemo, neck dissection 11/25 revealed 12 benign nodes!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Belinda,
Sent you a "friend request"
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | A BIG congrats Belinda Jo. Now on to the recovery phase. BTW, it's a lot better than the Tx phase. lol
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: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | Belinda Jo,
I am in Louisville and was curious to see where you were getting treatments. I love my Oral Surgeon and I am meeting with oncology team on Friday.
I cannot imagine going through all this with a newborn. I was diagnosed 1 month after getting married...where did my newlywed stage go? haha
I will be praying for you!
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
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