| | 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 | Get the nasal tube!
Get Carnation Breakfast VHC which has 560 cals per can. You can get that from Walgreens but only thru their pharm dept. No prescrip necessary.
Get plenty of water down in him daily!
If your doc doesn't see these immediate necessities, switch doc ASAP.
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: Oct 2006 Posts: 209 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 209 | Mike did a nosedive off a cliff that last week as well. Just like you describe, the treatment course was somewhat bearable. He had a feeding tube and continued to swallow and drink by mouth. Then Memorial weekend he crashed so hard I thought he might die. I found just sitting with him quietly helped. He tolerated very little but at least some of my attempts at the tube feeding, and would not swallow anything.
After that weekend his Radiation doctor precribed IV hydration for a few hours which helped a lot. He was allowed to get it whenever he wanted.
Ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | | 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 | Right now and the next 2 or 3 weeks is the worst of the whole ordeal. It is critical that your husband gets proper hydration and nutrition. If he is not able to get 2500 calories and 48 oz of water in every single day then he needs a feeding tube. I can not stress enough how important nutrition and hydration are!!! I ended up being hospitalized for malnutrition and dehydration right about the same time as where your husband is right now. Ive watched others struggle and I warned them of being hospitalized for not taking in enough and Ive seen them go right down the same path as me. Watch him carefully and make sure he really is drinking enough calories and water. He cant play catch up tomorrow for what he cant take in today. If today he doesnt get 48oz of water and 2500 calories demand a nasal tube. It does not help the patient one bit to struggle so much. Same goes for the pain, if the patch still isnt enough after being on for 24 hours ask for it to be increased again.
One last thing, take a few minutes every single day for yourself. You dont want to get burned out. Being a caregiver is a difficult job. Im sure your husband appreciates everything but he probably feels awful right now. Not enough calories and water will make him feel even worse. Believe it or not, next month this time he will be a new man! Its all down hill from there.
Good luck!!!!
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Congrats....You're done with radiation today, right?? How are things going. Thinking of you guys!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 53 | His last radiation is tomorrow. 11-11-11 at 11 on Veterans day! Since his service in Vietnam may have contributed to this is it fitting and great karma!. Losing track of time so I appreciate this forum to look back and keep myself straight. It has been rough this week with Tuesday in the DRC at Moffitt to get fluids. They found that a fentenol disovable tablet helped him to the point he drank 2 glasses of water! Yeah! Yesterday was a pharmacy nightmare getting authorizations and a pharmacy that actually carried it. Finally got it today and still not enough fluids and food but still forward moving with 3 full 12 oz glasses of water and a bowl of butter laden oatmeal. Chemo this week has been canceled twice now and they are going to postpone for a couple of weeks to get his wbc count up. Right now we are at 11.5 . Other than that battling with the heavy mucus so any pointers on that would be helpful. I think tomorrow will be a great page turner knowing he won't have any more treatments. He will have a full day of the new meds and we can relax together all weekend. Thanks as always for helping us on this journey!
Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | | 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 | Here is some info I posted to you on Nov 8th regarding the mucous....
As for the phlegm, try musinex or robotussin. You can check with his doc or nurses what would work to help. He might even benefit from a suction machine. Check with the nurses about doing that on his rad. visits too. It takes only a couple minutes but will give him a big relief after its done. Some people get a suction machine for at home too. Ask for one. Sleeping on a few pillows on on his side of the bed raised will also help with the mucous. The thick phlegm will continue for about another 4 - 6 weeks. Then it will be replaced with a dry mouth which will force him to carry a water bottle everywhere. There are some biotene products that can help with the dry mouth. Some people take a medication to help stimulate saliva. Thats nothing to be concerned about right now.
Last edited by ChristineB; 11-10-2011 08:35 PM.
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 | Pat, while the end of radiation is to be welcomed please do understand that most likely his worse time is yet to come and with the end of daily radiation also cuts that lifeline to the people that know how to treat his problems. Can't emphasize enough the need to make sure he gets 2500 - 3000 calories and 48 ozs of water each and every day.
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 2011 Posts: 53 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2011 Posts: 53 | All great advice! I am also going to try the meat tenderizer that was mentioned on another chat string. Who knows. I also listened to the advice about taking care of myself. I took this week off of work so I could drive him to his treatments and take care of him. Next week I go back to work and am fortunate enough to work 1 mile away so will be able to check in frequently. One of the hard things to do to is keep an active man from being bored but until his WBC goes up I don't want him out and about. As far as getting him to eat and drink, he has been a physical fitness buff for years which I am sure has helped him a lot. Well he has always been on me to do the same so here is my plan, for every glass of water I will bike 10 minutes for every meal I will box 10 minutes etc. Kind of make a contract. Now for the just great news. Last day of treatments and Moffitt called, both machines are down and if they can't get them working today they will fit him in tomorrow. UNREAL.
Debbie, caregiver to Pat my loving husband of 32 years. T1
N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first
cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | wow sorry to hear that but hang in there it will all work out for you.
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Jeesh. You didn't need that! But you're both extremely brave souls and the thought of only one more ride in the machine, as I called it, is great even if it's delayed another day. And of course David is right about the next few weeks. They might be very tough. But you'll both make it.
All I can add to Christine's comprehensive treatise on excess mucous is rinsing with a baking soda/water solution a few times a day. As they say about chicken soup for a cold... it can't hurt!
Hang in there!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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