Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
#183887 08-01-2014 03:39 AM
Joined: Aug 2014
Posts: 23
Member
OP Offline
Member

Joined: Aug 2014
Posts: 23
My husband of 32 years got his CT scan report on his "my chart" site last Saturday. Large mass on BOT and many large lymph nodes. Likely SCC. PET scan Monday, MO Wednesday, biopsy Thursday, head & neck cancer specialty clinic the following week. Lost 55 pounds in the past year. The first 30 were on purpose after doctor told him he had to lose it due to pre-diabetes. Unintentional 25 pounds over the past few months due to gerd/reflux and sore throat. Went from a big & tall to a string bean. Met with dietician for the weight loss and the appointment just happened to be right after the CT report came in. She advised 2500 calories & 80 grams protein a day. Drinking milk, ensure, boost and instant breakfast to supplement what he can actually eat. Really suffering from reflux and choking when he swallows. Anticipating chemo, radiation. Trying to get things in order at home, since we expect he will feel worse before he feels better. It's emotional, but we are coping ok so far. Trying not to think too far ahead, but want to be as prepared as possible for what we might face. Going out today to buy a big comfy recliner.

Any hints about getting in the calories & protein on a gerd diet (low fat, no chocolate or tomato)?

Last edited by Gracie mars; 08-01-2014 03:41 AM.

Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



Joined: Mar 2014
Posts: 286
"OCF Down Under"
Gold Member (200+ posts)
Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 286
Welcome of OCF Gracie. The specialty clinic will set the tone for the next few months. They have three options, radiotherapy, chemotherapy and surgery. It depends on the case but HPV P16 +ve SCCs respond really well to radiation, so thats often the first choice, backed up by chemo. They will make an assessment based on a range of factors specific to your husband's case. There may be some dental work required too, but they'll let you know what you need to do.

In the meantime you have a roller coaster of things going through your minds to worry about. That is completely normal and if necessary you can see a psychologist for some coping tools during the waiting process. It sounds like you're doing the right thing and not think too far ahead.

Its not a time for a holiday, but do what you can to relax and in particular eat well. Eat as well as you can (both of you). Lots of proteins, fresh vegetables and juices. Lots of fluids, keep the bowels going, avoid people with colds and flus, a bit of exercise, just generally do what you can to be as healthy as possible to face whatever comes next. Normally we would say bulk up as much as you can because he will lose weight later. Given his other issues I'd stick with what the dietitian advice. That may change after an SCC diagnosis, but they are the experts. 2500 is good calorie number, you'll hear that many times.

Be careful with what you Google and get from the internet, including here. You can scare yourself silly very easily, and not every headache is a brain tumour! What the internet is useful for is to help you understand the flood of information you need to absorb. I find it best to use the internet to understand what a doctor has already told me, or to frame questions to ask him. Keep a noteboook and take it to every appointment. Jot down questions, appointment times, medication instructions etc.

Every cancer journey is different, but you'll find most of us have driven over the same bumps. We'll be here to support you both. Best wishes for the diagnosis.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Welcome to OCF. Im very sorry to read about your husbands diagnosis of not just SCC but GERD as well.

Im a little surprised a feeding tube has not been suggested by the dietician. The calories they suggested is the minimum daily needs. Boost makes a very high calorie (VHC) drink that can be ordered thru the Amazon link on the upper right of this page. Most pharmacies can get it as well but they wont always do the special order for their customers. Boost VHC has 560 calories per 8 oz which makes it much less to drink to hit the daily minimum numbers. I do not know how this product works for GERD patients but it is similar to the other nutritional drinks you will find over the counter. Watch water intake as well, shoot for 48-64 oz per day.

If you havent already scheduled a dental appointment make one right away. Treatments will likely include surgery, with radiation and possibly chemo. Your husband will want to have his teeth thoroughly checked and in tip top condition as well as flouride trays made. He will also need a complete blood work up with thyroid and testosterone levels checked prior to any treatments.

Please feel free to ask questions. There isnt much we havent seen on this forum.

Best wishes!!!


Christine
SCC 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 smile
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Assuming it's SCC:

Must have cancer cells tested for HPV.

Do get Boost VHC.

More after confirmation.


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 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Good luck with the biopsy results. Only that can prove it's cancer 100%. As David says, if SCC, ask that the biopsy sample be tested for HPV-16, 18, even if they say it's p16 positive, which is indicative that it probably is, but not always.

A recliner sounds nice. I'm glued to mine drinking coffee.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Aug 2014
Posts: 23
Member
OP Offline
Member

Joined: Aug 2014
Posts: 23
Thank you for your kind and thoughtful messages. I am so grateful this forum is here. Good information on so many topics, and the most amazing people. Thanks again for reaching out with help and support. It is such a comfort to me to know I can count on the folks here when I need them. Also, a little surprising how a few messages from total strangers would give me such a lift! Seriously, a big bright spot during an otherwise dark time.


Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



Joined: Aug 2014
Posts: 3
Member
Offline
Member

Joined: Aug 2014
Posts: 3
My wife made me milk shakes with Boost to increase calories - Strawberry was my favorite. After radiation treatments to the neck, swallowing was most difficult. I credit Cocoa Wheats hot cereal for saving my life post surgery/chemo/radiation. Angel hair pasta cut up in small pieces was also a great food for me, as my mouth could not open very wide.

Joined: Aug 2014
Posts: 23
Member
OP Offline
Member

Joined: Aug 2014
Posts: 23
He had the biopsy yesterday and should have results by Monday. PET scan showed no widespread disease, just the large mass at BOT and two Lymph nodes nearby. We see a specialist for a second opinion next week at a nearby academic medical center with a head and neck cancer clinic. Oncologist at the community hospital says pretty much what I expected after reading these forums... cisplatin and radiation, with peg tube and mediport placed prior to treatment. Also prescribed a new medication for the GERD/reflux. It seems to be helping, which is a big relief.

Thanks to the advice I got here, he has a dental appointment next week. Unfortunately, he is overdue for routine cleaning, so might be playing catch up with that. I will have him ask about fluoride trays. It sounds like the radiation oncologist will determine if any teeth will be in the path of the radiation beams, and those would have to go.

Any advice about choosing where to have the treatment? There is a nearby (30 minute drive) medical center with a cancer center, IMRT, accredited by the American College of Radiology and has Commission on Cancer approval. A longer drive, over an hour, is the academic medical center with a head and neck cancer clinic. Sounds like it might be possible to get some things like chemo infusions and labs done at a local community hospital and travel for radiation. Seems like a complicated decision, and I tend to overthink things.






Caregiver to husband with SCC BOT HPV+ T4N2cMO stage 4a
CT scan 7/23/14
Biopsy 8/7/14
PEG tube in 8/15/14, out 4/2015
35 rads, Cisplatin X 3 - finished 10/27/15
cancer free May 2018



Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
I would go where the specialists are. You are looking for a CCC (comprehensive cancer center.) there is help with driving if you need it most places have a volunteer group to help with transportation or a hope lodge to stay at during the week. smile hugs


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
There is a Hope Lodge in Marshfield, Wisconsin near St. Joseph Ministry Hospital. You can also go to any city in the U.S., depending on insurance, finances, stay at Hope Lodge for free, availability permitting, and have treatment there. I stayed at Hope Lodge in NYC during one of my treatments, and was a great place.

There is also "Joe's House" that have discount lodging, and ACS, instead of Hope Lodges, have a program, forget the name, to stay in certain hotels.

I didn't get too much help with travel with the American Cancer Society my last treatment being I was going interstate, although only 32 miles away, so no volunteer drivers were going my way, and ACS apparently doesn't give any money for gas, transportation in all areas, so I had to hire someone myself, and pay out of pocket.

I did Proton Radiation one place, that's all they do, and chemo locally. Both can be done separately, but I wouldn't recommend it. You would have to coordinate, update, get copies of too many things yourself, not mentioning timing. When you go to radiation you'll be at the center anyway, and chemo is usually given immediately before or after, so you be there anyway, and just makes everything more convienant.

Another option is to have all your chemo, radiation treatment planning done at a top CCC, and do what they propose, locally, if both centers are in agreement to do so, but I would rather stay where the experts are.

Good luck with the biopsy, and hopefully no treatmnt will be needed!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Page 1 of 2 1 2

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5