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#143462 - 12/01/11 03:06 AM Treatment has Begun! One week closer to the End!
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Jerry began his induction chemo last Wed (23rd). As I think I shared (no memory here), the team recommended no surgery due to the excessive size of the tumor in neck. The plan outlined was 2-3 cycles of induction chemo followed by chemo radiation and then evaluation for whether surgery would then be completed.

We left the hospital Wednesday nite with the fanny pack and pump in place. At first we were a bit set back thinking the pump might be smaller and less awkward, but after considering the options, Jerry was pleased to be unrestrained to move about. Spent Thanksgiving afternoon with family. He felt well enough to eat quite well! I was thankful for that. By 10 p.m. that night however, he felt like crap. He held it together with the nausea meds, but one of them (Zofran) turned out to be killer on his head. He has always been prone to migraines and the Zofran attacked his head. Then the acid reflex began. By late Fri he wanted off the meds believing they were wreaking more havoc than the chemo. All new to me and feeling helpless watching him, we went ahead and stopped after our required 3-day dosages. Big mistake. Within six hours he was throwing up. I should have held strong recalling advice to stay ahead of the nausea with the meds, but he was very convincing (now I feel more strong about the feeding tube when chemoradiation begins because I do not know that I can fight him with eating when he needs his nutrition) It took a day to catch back up and get ahead but we did. Still feeling like crap but at least not throwing up!

Appointment with doctor Monday was very positive. The tumor in his neck has reduced in size so signficiantly that doctor believes they will stop the induction chemo after 2nd cycle; there will be no third. And adjustments to meds for 2nd cycle will address his continued nausea and headaches (replacing Zofran with Em..?) Planning for chemoradiation will then begin. Doctor believes that by April 1, Jerry should be feeling pretty good. I am praying that is true.

Jerry started running a fever this evening. Working to get that down but just a reminder of how simple complications can just change a whole day! And how this 'event' is such a roller-coaster! Wish I was in better shape to weather the ride a bit better, but because of all of you, it helps alleviate some of my anxiety through your sharing advice, thoughts, encouragement... So again, THANK YOU! Gayle
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#143463 - 12/01/11 04:10 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 873
Loc: Ohio
Hi, Gayle -
It is easy to feel helpless, but think of all that you are doing, and that you are by his side. You will be better prepared for the second round of induction chemo physically and emotionally.

Fabulous news about the tumor reduction! If Jerry will be starting chemoradiation around the beginning of the year, the April 1st prediction of feeling 'pretty good' sounds doable. It's going to take longer for him to get his stamina back - but you should both be able get out and enjoy the last of the spring snow and the first signs of green. It is almost a year since my husband's diagnosis, and his treatment began mid-January. It is hard going through the winter weather to the treatments ... but then it is done, and spring will come, and it will be beautiful!
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#143465 - 12/01/11 05:46 AM Re: Treatment has Begun! One week closer to the End! [Re: Maria]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Keep hanging in there, you beautiful caregivers!!! Oh, they do sound convincing in their discomfort, poor guys! It's hard to be the meanie while feeling awful about what they are going through.

Gayle, you are wise to hold strong when it comes to following instructions. Getting nourishment and fluids can be particularly challenging. They were major points of contention here and landed J in the hospital for four days.

I hope the feeding tube works well for Jerry. I would think that keeping fed and hydrated would go a long way in making the rest of it a little easier to handle. Even with a feeding tube, he can (and should) take whatever he can tolerate by mouth, even if it is just water. That way, he'll preserve the swallowing mechanism.

Sometimes, they forget we're on their side. So, every now and then, a little reminder is in order. It's not an easy rollercoaster ride for either of you. You are doing a great job! Keep moving forward!

Remember to take a little time for yourself. Try to get some quality rest when you can. Your incredible husband has an incredible wife!


Sandy
xoxox


Edited by Sandy177 (12/01/11 05:47 AM)
_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#143489 - 12/01/11 10:46 AM Re: Treatment has Begun! One week closer to the End! [Re: Sandy177]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2594
Loc: TN
Oh Gayle - As a caregiver I know what a roller coaster ride it can be in caring for someone you love. It's been almost five years since I took that ride with my son but I remember the anxious days of wondering whether to be soft and compassionate or to hold firm. It's good to keep track of everything that goes into and comes out of the patient, as well as to keep track of all the medications so that if one doesn't work or has a bad effect, you can be prepared to check with the doctor who may recommend a substitute. It helps to remember the positives that happen like the the tumor reduction and celebrate any small improvement. Things do get better!


Edited by Anne-Marie (12/01/11 01:11 PM)
Edit Reason: typo
_________________________
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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#143520 - 12/02/11 03:17 AM Re: Treatment has Begun! One week closer to the End! [Re: Anne-Marie]
msmac Offline
Gold Member (200+ posts)

Registered: 05/01/11
Posts: 266
Loc: california
Sounds like you both are doing great. I hope the fever and nausea are under control now. Lots of good thoughts coming your way.
_________________________
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.

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#143589 - 12/04/11 03:27 AM Re: Treatment has Begun! One week closer to the End! [Re: msmac]
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3537
Loc: San Francisco CA
Gayle,
I had a similar Dx and treatment protocol and never had surgery. My tumor had completely melted by the third week of radiation. I also had one infusion less because of the severe issues with nausea and weight loss. It is the "E" ticket ride in the roller coaster dept.

Please note that was 9 years ago and I am doing all right. I hope your outcome is the same.
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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#143629 - 12/05/11 01:20 PM Re: Treatment has Begun! One week closer to the End! [Re: Gary]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Jerry finally made it over the hump from the first round. I took him to local hospital Friday for more liquids. Second time but seems to have really helped. He feels so much better with his nausea and able to eat again. Now, however -- it's always going to be something (Rosanna Danna) isn't it? -- he is fighting mouth sores which makes it hard to eat. I have read so much here and there and ... just wondering if someone could please share any recommendations to help. Also is having trouble with eyes feeling like they are burning? Maybe just the fact he finally got a good nite's sleep at 10 days! Overall, much better so looking forward to this week and next enjoying eating before round 2 hits on the 16th.
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#143646 - 12/06/11 01:26 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8391
Loc: PA
Try some magic mouthwash to numb the sore mouth. Then try some of the easy to eat foods on this list. Right now texture of the food plays a huge part in if you can handle eating something. It takes time to heal so try to add some high protein powder to help speed his recovery.

Easy to Eat Foods



Edited by ChristineB (12/06/11 01:29 AM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#143662 - 12/06/11 08:13 AM Re: Treatment has Begun! One week closer to the End! [Re: ChristineB]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
Hi Gayle, Manuka honey has been used with good results in healing mouth sores for patients here on the forum. There's quite a bit of recent discussion about it--just put Manuka honey in the search box right above "Who's Online" in the upper right corner. I hope it helps.

_________________________
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

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#143710 - 12/07/11 10:47 PM Re: Treatment has Begun! One week closer to the End! [Re: Sandy177]
Gary Offline
Administrator, Resident radiation science expert
Patient Advocate (old timer, 2000 posts)

Registered: 11/27/02
Posts: 3537
Loc: San Francisco CA
It is stunning how miserable you can feel from dehydration! If you haven't already, use the infusion unit for IV rehydration - it's much more comfortable, very little wait (typically) and much faster.
_________________________
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)

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