| Joined: Feb 2012 Posts: 151 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 151 | with 10 rads done and 23 left and 1 out of 6 chemo done the first 2 weeks went great. No nausea and didn't need the pills. Mouth sores started on the 3 hour trip home. Will remember to have the soda and salt water in the car this week. No terrible fatigue yet, been too busy for that. My husband is a Pastor so week-ends are busy when we are home. He is still speaking which is wonderful even though he lost a lot of his voice after the first surgery. Peg and port are scheduled for Tuesday. The doctors sure have different opinions on this. Wish he could pass on it but better safe than sorry.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | Joined: Nov 2011 Posts: 60 "OCF Down Under" Supporting Member (50+ posts) | "OCF Down Under" Supporting Member (50+ posts) Joined: Nov 2011 Posts: 60 | You sound like you are on top of things. Any chance you are an effective list maker in normal times?
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
| | | | 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 | Best wishes with tomorrow's surgery for the peg and port. I always think the same, so much better to have it before its needed than after it becomes a problem. He will be sore for a couple days after the surgery. If its alot of pain ask the doc for strong pain killers he can take. Let me know if you need any peg pointers. Best wishes! 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 2012 Posts: 151 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 151 | Yes I am always looking for any pointers. Just talked with someone who's mother had one put in and had such pain they kept her overnight. The daughter insisted that it should be checked and they were confident it was fine. Finally the next morning the doctor reluctantly checked and sure enough it needed to be loosened. Unnecessary pain for someone older. I have been told yes and no on putting my own food through the PEG. I don't want to rely on Ensure with all the sugar. I plan on continuing the carrot and fruit juicing. I'm sure I will be throwing all kinds of healthy stuff in the blender and diluting it. I had lots of practice with 5 kids and even with my daycare kids. I came up with the idea when my son was 6 months old and looked so skinny. I put meat, potatoes, veg. and milk in the blender and then in a bottle with a big hole in the top. Breakfast was scrambled eggs, baby cereal, fruit and milk. He beefed up quick in just a few months. Glad he decided to go with the PEG. I can see how difficult it is to swallow already.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | 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 | You should be given a prescription formula which is more nutritionally balanced than the over the counter ones. There are many different ones with all different calorie contents. Most are either 250, 375 or 540 per can. A medical supply company will deliver cases of formula along with all the other necessary accessories that go along with it. You should also ask for a visiting nurse from the hospital to come out a couple times to check on the feeding tube usage.
It is not unusual for the tube's plastic to be placed tightly against the stomach when first inserted. It can easily be loosened. Nor is it unusual to spend a night overnight in the hospital after having one placed, especially when having a port done at the same time. You can be pretty certain your husband will feel sore for at least the first 24 hours, maybe up to 3 days. Make sure you get pain meds for home and also ask for a home feeding pump so he can have night time feedings done while he sleeps. Makes it much easier to get all his daily requirements.
Best wishes with everything! 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 2012 Posts: 151 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Feb 2012 Posts: 151 | Week 3 and what a change. Sunday the sore throat kicked in although the mouth sores that started on the trip home Friday are a little better. Yesterday was Peg and Port day, long day!! Waited over 3 1/2 ours to go into surgery. Today was busy with appointments and learning how to use the PEG. Before noon the throat became drastically worse. I hope this might be from the tube being put in also so there's hope it will improve. Did not get him to eat much or drink which is not good. Tomorrow I will take charge!! With being sore and not wanting to use the Peg or rather acknowledge it was there I did finally get some water in. NOW FOR THE GOOD NEWS!!!! Our son in Florida surprised us and called tonight and is taking time off from work and flying home for 3 weeks to watch his brother who is 13 while we are gone all week. This will cover the last 3 weeks of treatments. What a relief to my husband, he feels so bad leaving our son. He won't even hardly miss us with his brother home, they'll have a good time. This makes me really proud of our son in FL, I guess he is a pretty responsible 26 year old. I'll be busy cooking on week-ends now, he really appreciates home cooking!!!
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | That's great on all fronts make sure he has decent pain meds... And njoying your time with family.
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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Good for your son! Ours came out to visit during the last week of therapy - it was wonder to have him. It's nice to get that 'maybe I did sometime right as a parent' feelings. Best wishes and keep on truckin'
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, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Oct 2011 Posts: 225 | The feeding pump was essential for my brother and if he is to take adequate pain medication he MUST anticpate the constipation that often results and deal with it before it happens. I can't stress how important I think this is after my brother's experience. Best wishes to you, your husband and lovely boys. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good. | | | | Joined: Nov 2010 Posts: 74 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2010 Posts: 74 | [quote=Christine
It is not unusual for the tube's plastic to be placed tightly against the stomach when first inserted. It can easily be loosened. ![/quote]
That's what is driving me crazy with pain right now. How do you loosen it?
4 cancerous tumors stage4 Surgery 10/26/2010 Radiation 2x a day for 4 weeks (started Dec 13th 2010) Reccurance discovered Nov 2011. Tumor behind left jaw. Erbitux, Taxol and Paraplatin for 6 wk. Surgery scheduled for Feb 50 year old woman smoked for 30 years quit 3 years ago light drinker HPV +16
| | |
Forums23 Topics18,168 Posts196,925 Members13,103 | Most Online458 Jan 16th, 2020 | | | |