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#144488 01-04-2012 03:14 AM
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Husband's weight is in free fall now and he's only 10 radiation treatments into it. He's lost maybe 4 kg in the past 2 weeks, weight is now about 56kg (5ft 9 or 10). He is so thin. Some days he's eaten really well, others not so good but still the weight falls. He says he can't eat more, can't use Sustagen because of nausea or if not that then burping or belly pain or indigestion. Says he simply CAN'T take in more.

Today he's had his weekly chemo. He ate a modest breakfast, no snacks, minimal lunch and 75 mls of Jevity 1.5 cal/ml for the first time using the PEG. Now he's having a small dinner.

This is the thing we are going to argue about. The dietitian told him today what he needs to take in. In trying to get him to actually do it though he got mad at me saying I don't understand, am not listening, he can't possibly do it because of the way he feels, that he will do it tomorrow when things might feel better. But I'm thinking I've been hearing something like this for days and days and tomorrow is never better. I know he feels awful. I own up to my frustration and worry.

I ended the discussion by saying that he heard the dietitian's instructions the same as me. He knows what he needs to do and it is on his shoulders to do it. I will make him whatever he wants, whenever he wants it and be happy doing it because I care about him but that I won't chase, mother or dog him. (At least not for the immediate future -- but I didn't tell him that.) I am at a total loss for what else to do. And I'll say this too because this seems to be a safe place to say it -- I am worried that he isn't going to fight this for himself or me and the kids because it seems too hard. I don't know whether to hold his hand or kick him.

I would be interested to know what motivated and what demotivated the rest of you when it came to keeping intake up. This just sucks all around.


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.
lam007 #144489 01-04-2012 04:40 AM
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I'm sooo sorry for what you and your husband are going through! What your husband said really struck a chord with me because I heard almost the same exact words from my son when he was going through treatment. He got mad at me, too and told me that I didn't understand and didn't know how he was feeling and that the pain was too much, that his throat was raw and bleeding and he just couldn't swallow anything. He was depressed and I felt so badly for him. So I did just what you did just now. I came on to OCF, and got some practical help and compassion. One of the OCF "angels" told me I should put on my "nurse from Hell hat" and tell him what was what. So I did. I told him that he had to start eating and drinking or I would call my daughter (his older sister who is a police officer with a gun) and get her to come over to help me push him into my car and take him to the hospital to get a feeding tube put in. Somehow that got him jump started. I felt so badly about yelling at him while he was suffering so much, I knew I was about to fall apart, so I left and drove around the neighborhood and just cried my heart out.

Now, for some other ideas:
1) My son used "magic mouthwash" which is a prescription the doctor can give you to numb the area used in swallowing. My son said it only worked for a short time so it's probably a good idea to try to get as much nutrition in in the early moments of eating as possible. There are different types of mouthwash and my son switched back and forth on this because when one didn't work as well anymore, he would go to something else and then found that the original mouthwash worked ok again. There was one - don't remember now which one- that was OTC (over the counter) at the drugstore which worked well, too.
2) Tube feeding. My son never did get the feeding tube but there are lots of different experiences and advantages on OCF re tube feeding and you could do a search (see search box upper right this page) to see what might help your husband.
3) You could make a chart - which is what I did - of everything your husband manages to consume in food or liquids. You could include med on the chart, too and also what comes out of his body. This way, my son didn't have to feel like his mother was telling him what to do and he could see for himself what his progress was. I made it clear I would show the doctor the chart.
4) I would print out postings from other OCF people and just leave them by my son's bed for him to see when he woke up and this became the advice known as "what other people are telling me and not my mother telling me what to do".
5) YOU: It is important to take care of yourself. Caregivers can get stressed and depressed and fail to get proper nutrition. Make sure to check with your doctor about what your needs might be. From what you say, it does seem like there are some positives to hang on to in that your husband does have moments when he can eat so there is still lots of hope. I'm sure you will get ideas from others with some more recent experience. Let us know what is happening.





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.)



lam007 #144490 01-04-2012 05:02 AM
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Hi Laura, My brother was still eating OK 2 weeks into rx. However, he wasn't too far past your hubby when he was only taking water by mouth just to keep his swallowing going. He ended up totally dependent on the the PEG, which he detested at first. We now can't believe some people go through treatment without a PEG. Rick may well get to the point where he is only feeding by the PEG tube. Si certainly did, and that was OK, but he did drink as long as he was able - nearly to the end of week 6.

Simon went from 85kg to 65kg and, like everyone else, had some very low times. It's so hard to see through to the end of treatment when you are where the two of you are at the moment, but hang in there. It will probably get worse, but it will get better.

As far as what you can do to get him going, since he was diagnosed in June, I ring Simon every day, some days 2 or 3 times to check he's doing what he should and to give him a bit of a pep talk. His wife has more than enough on her hands keeping it together with 4 little kids, so I am
co-hassler/berater/researcher. I ring and ask the same questions over and over again. How much water have you drunk today? Have you been for a walk? What have you eaten? Why haven't you had more to drink/eat? Are you staying out of the sun? And again, have you drunk enough water? (that one again and again!!) Why have you only had 3 cans down the PEG. etc etc. I do this because I want him to see that there ARE things he can do to empower himself and get a bit of control over the situation rather than feeling utterly helpless.

Does Rick have someone who can do this for him? For his sake as well as to take the intense pressure off you; someone as well as you he can debrief to about the blow by blow of the awful treatment, and to encourage him to do what he needs to do?

I've sent you a PM. 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.
samkl #144494 01-04-2012 07:10 AM
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If your husband wants to struggle then he is doing everything right. Getting enough calories and hydration are NOT optional and he can NOT make it up the next day. I cant stress this enough. I always thought I could play catch up since I wasnt feeling good. I would always think tomorrow I will do better. Well one 'tomorrow' I found my son practically carrying me to a wheelchair and being wheeled into the hospital. There they took one look at me before they did ny vital signs and I was admitted into the hospital for malnutrition and dehydration. I actually felt so bad that I thought I was starting to die. Your husband is on the same path. It is not optional, every single day he MUST get a minimum of 2500 calories and 48 oz of water.

I would suggest you get him to read these posts or print them out for him to read. Let him see what so many other patients and caregiver have to say about this. I would also suggest that for 2 days he listen to you and that you get him the right amounts of intake and then ask him how he feels. I guarantee your husband will feel better. There was another member who also struggle and I warned them they would end up being hospitalized but they couldnt turn things around. It came as no surprise when they posted they were being kept in the hospital to finish their treatments.

Since he has a feeding tube why not do night time feedings? I have a feeding pump that I hook up at night and I let it run while I sleep. This is a very easy way to make sure he gets enough nutrition. Make sure the head of the bed is propped up for the feedings.

I hope your husband begins to get more in right away.


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
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I understand how your husband feels. I was right there. My sister stayed with me during treatments. I cried, yelled and tried to get her to stop making me take in nutrition. She was persistent to the point of being mean. She kept saying I'm trying to keep you alive.

In addition to being persistent while I was awake, every time I went to sleep she connected my peg tube to a feeding. Even if it was a short nap, she hooked me up.

I lost 11 pounds the first week of treatment then we started the sleep feedings. I lost a total of 15 pounds during the entire treatment.

A couple of months after treatment was completed, I sent her a text "thank you for all you did meany". She replied "you're welcome pukey" LOL.

Angie


51 y/o Stage 4 HPV Tonsil Cancer IMRT & Cisplatin. Completed 9/26/2011.
Angie2 #144500 01-04-2012 08:10 AM
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I totally identify with what your husband is feeling. What motivated me, was when I was admitted to the hospital because I wasn't getting enough nutrition. My husband kept after me, but I gave him the same arguments that your husband is giving you. When I went for blood work after I had finished my treatments, my oncologist took one look and insisted that I be hospitalized. I cried and asked if I couldn't just take a pill, but I was hospitalized for three days to build up my nutrition. That did it for me. I hadn't been using my PEG, but I did then. I also started eating yogurt and ice cream and making milk shakes out of Ensure, a banana, and a scoop of ice cream. I hated the PEG, and I even hated trying to eat, but I didn't want to have to go back to the hospital.


Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
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I think you are beginning to see a few trends here. The Caregivers are sharing that they know exactly how you feel as it's tough to get the patient to eat because of how badly they feel. The patients are affirming your husbands feelings that it sucks and the feelings are real.

It's not that your husband doesn't want to eat more, he probably has it in the back of his mind(I know I did) however physically it "feels" impossible. I remember that feeling where I just couldn't let anything more be jetted down the PEG tube even though I was losing massive amounts of weight, 70 lbs total which was about 1/3 of my body weight at the time.

My opinion is that he needs assistance, either via IV nutrition or chemical to ease other symptoms and increase appetite. Now you've inquired before about medical marijuana on these boards and I think that should be an option. I have several friends on these forums that have used it through treatment successfully to help motivate them to eat, relieve nausea caused by opiate pain killers, help reduce the need for opiate pain killers and lift the mood. Some of those patients use it in a state where it is not legal however take it anyways because it has worked for them. It's worth a shot in my opinion.

Treatment is tough and the patients and caregivers should have every option to help get them through this hell, just how I see it. I wish going through I didn't have the preconceived notions on mj and had used it despite it being illegal where I live, I think I would've had an easier go.

Keep your chin up

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #144509 01-04-2012 02:37 PM
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lam007 Offline OP
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And I thought it was a private hell we had entered. You people are wonderful. You have given me many things to think about.


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.
EricS #144513 01-04-2012 05:09 PM
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Or Eric, as my sister always says to me, "keep those chins up"!

Simon was hospitalized for a couple of weeks, week 4 and 5 of treatment, I think, because of nausea and inability to keep even water down. He also had an infection, or at least a spiking temperature that couldn't be sorted with antibiotics.

Point being, Rick may at some stage need a short stay in hospital, which won't necessarily be a bad thing - it will give you some respite - and he needs to start using the PEG. He will end up thinking it is a lifesaver.

Si also had severe indigestion (still has his PEG and indigestion is still an issue though not so much now) but managed this with constant sips of water and indigestion meds.
I've just remembered Simon saying he should have had a food pump with his PEG right from the word go, so ask your treatment team about that. It makes feeding much much easier.

Last edited by samkl; 01-04-2012 05:30 PM.

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.
lam007 #144516 01-04-2012 06:28 PM
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Your story sounds exactly the same as the one Alex and I went through nearly 18 months ago...

Alex is 6'1" was 60kgs when diagnosed which was already 10-15 kgs under his ideal weight and he dropped to 48kgs before being hospitalised.

Like your husband, he complained that he just couldn't take any more food and he would try again tomorrow when he felt better. Like you, I bullied, let him go, cried, cajoled and tried reason. I even went so far as to accuse him of slow suicide and if that was what he was doing, could he please inform me now so I could leave and not watch him do it (my worst day and one which I am not proud of). I tell you this to demonstrate I know the frustration you are feeling.

My Alex could not tolerate TwoCal and literally 3 sips into a can, he felt unwell, complained of bloating and the 4th sip caused him to bring it back up. Actual food was not an option due to difficulties with all of the above plus swallowing issues and pain.

This all happened during induction chemo, and the oncologist refused to treat any further until he gained weight. TwoCal made Alex sick so he was put on a pump which ran 8-10 hours overnight with a product called Nutrison. He was hospitalised at first as his weight was so low, they were concerned with "refeeding syndrome" which is a condition where the body can't cope with the return to normal nutrition and can cause life threatening events such as heart attack.

In hospital, he learned how to use the pump and gained 5kgs in 5 days. He took 2000 cal per day this way and whilst his weight never recovered to anywhere near normal, he gained 10kgs and stayed there all through radiation. I learned how to work the pump as well but my help was never needed. Alex used the pump for the next 12 months at home and became so adept at changing the bags over in the middle of the night, there were occasions when I would poke him awake, believing he had turned off the alarm on the machine and not changed the bag.

There appeared to be two issues: one was nausea and vomiting if pushed; and the other was bloating where Alex felt extremely uncomfortable after 3 "mouthfuls" where the 4th would cause him to throw up. This also happened when PEG feeding so was not a psychological or gag reflex. The radiation oncologist led me to believe that Alex's issues were unusual and something to do with Alex's attitude (hence my extremely inappropriate outburst). The oncologist believed that it was a matter of drive or will power. The oncologist was wrong!

My advice: Find someone who will listen to the issues without judging and then attempt to solve the problems. We ended up with slower feeds via pump overnight (needed to be changed after 4 or 5 hours unfortunately), medication for reflux (Somac) and an antinausea med (Maxalon)to help get the stomach contents moving which I believed was Alex's major problem although have no idea why his treatment would cause this.

Your husband is not abnormal and don't let any healthcare professional convince you otherwise. He is probably feeling just as scared and frustrated with his inability to eat as you are.

Please feel free to PM me with a phone number if you need more guidance or information, and I will call you at your convenience.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #144521 01-04-2012 08:04 PM
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just reread your original email and realised your husband is not even on a high energy drink. Get your dietician to prescribe Ensure Plus. It is not available to the general public and you have to be registered with the company who makes it for you to buy it. Once registered (your dietician should do this), you order a month's supply at time and they deliver to your door. Can't remember the cost but it is cheaper than buying all that food to tempt your husband and MUCH cheaper than Nutrison if you end up with pump feeds. The ensure plus can also be administered through the PEG but do it slowly at the same speed as if your husband were sipping it (avoid bloating and subsequent refusal to take on more). Suggest 50 mLs, wait a few minutes then another 50mLs etc.

This should supplement whatever your husband can take on and can subsitute should he become unable to eat anything. My Alex has 7-9 Ensure Plus's per day and it is his only means of nutrition (number 8 and 9 are a struggle though).


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #144522 01-04-2012 08:20 PM
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Karen, great catch. There are also other ways to "beef up" the calorie intake too when using Ensure Plus or Boost. Using a healthy oil like Olive Oil to help increase calorie intake. Olive Oil is a long chain triglyceride that is great for energy, has 14g of fat and around 140 calories per "tablespoon" so it doesn't take much to get more calories packed into the liquid nutrition.

If his appetite won't increase get more calories in each feeding session by just adding a couple of tablespoons of olive oil to it. I've given this advice before and even use it as I have issues keeping weight on so I put OO in my shakes. It has other benefits to it as well like promoting testosterone levels etc...not sure why I didn't think about that in my first post.





Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
EricS #144534 01-05-2012 08:12 AM
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Get Carnation Instant Breakfast VHC if you can via the internet. Each 8oz can has a whopping 560 cals and he needs to down 6 of those a day PLUS 6 of those cans filled with water. He needs to do both EACH and EVERY DAY until months post Tx. If he doesn't many other things can happen that will make this treatment much worse than it needs to be.


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.
klo #144541 01-05-2012 11:51 AM
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I think we all went thru hell. Look up some of my postings, I sat here on the phone at work to the Dr's office crying that I think he is going to die, Ron lost so much weight, he was already tall and thin but had muscle mass before this. He is 6'2'(yes eyes of blue!) and healthy he weighed 189. Now he is only 132lbs and he thinks that is great, he actually came out of the shower with only a towel on in front of my kids and inlaw kids and wasn't embarrassed, but my goodness he is so thin but he's alive! He didn't have any feeding tube even though he had an NG twice and took them out himself cuz it hurt his throat, and he refused to get a PEG and I just couldn't believe the docs let him go without one for all his treatments but I guess they figured he is doing fine seeing he is driving himself to and from Rad treatments til the final one. I just didn't understand but he made it. And believe me I "B"tched him out daily to no avail. I finally had to leave it in his and HIS hands and take care of myself and yes that was with Xanex just to take the edge off. Now he still has alot of paid due to the dead bone in his jaw but first we are taking care of the spot on his lung before that gets handled, but he is alot better and eats alot more than he did 2 yrs ago. Guess he was lucky not ending up in the hosptial is all I can say, seeing everybody else who lost so much weight ending up in there. Ron did have those drinks though maybe that's what kept him out of the hospital specially the 560 Carnation
Good Luck and take care of you too!

Last edited by SUEZ; 01-05-2012 11:54 AM. Reason: I didn't read all the postings...sorry

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
SUEZ #144549 01-05-2012 07:22 PM
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Thanks everyone. Karen, you mention a high energy drink -- are you meaning something besides Jevity and TwoCal? We have some sample packets of Ensure plus. I'll try to get him to sip it.

He's still able to eat, as in his throat is sore, but issues with texture, spice/salt, etc are cropping up. Saliva issues are coming into it now, too. He just doesn't want to eat much because of nausea and now indigestion. He was prescribed Losec yesterday and indigestion is somewhat improved today. He takes maxolon regularly and has ondansatron but isn't using it. He's also got Emend, the three day course of antiemetic he gets after weekly chemo.

So the reasons for not eating have been 1) Discomfort and nausea post PEG insertion. PEG has been loosened and site less uncomfortable. 2) Nausea post chemo. Have full compliment of anti-emetics, one of which has only been used sparingly. 3) Indigestion. Losec should help. He is open to increasing his appetite and decreasing nausea via whatever means necessary. Exploring all options.

Last night he steeled himself up for dinner and after a couple of bites he looked disappointed and mildly confused. He complained about a funny taste. He tasted something else on the plate and it tasted funny, too. Metallic, I asked? Yes, said he. Side effect, I told him. He doesn't want to read ahead about any of this and relies on me to let him know what to expect -- understandable, although not how I personally would handle it. He just seemed so disappointed. This disease makes a person sad in a thousand ways.

He said before bed last night that he would start using the PEG suppliments today but it is after lunch and the cans sit unopened on the kitchen benchtop.

He's bitchy today. Day 3 post chemo is usually the start of 3 bad days. The radiation is kicking in, too. And a bit more hair than usual came out in the brush. He said something about feeling pretty low mentally which is not the sort of thing I would have expected to come out of his mouth. This is only the second bitchy day he's had since this whole thing started back in October. I have to admire him for that. Today I promise myself I will be the even tempered one.

Eric, you put it so well when you acknowledged both sides. Karen, I have no doubt that what he is feeling is completely in the range of normal for a person in his position. I had dreadful morning sickness during both pregnancies and let me say that there is no way on earth I would have had a third child. And that experience is light years away from what the oral cancer people go through. LIGHT YEARS. I know this is the best he can do for right now but it scares me so. Christine, I know, I know, I know. His healing depends on nourishment and there will be no makeup days. I'll call a friend of his today who had RT for oral cancer to enlist support. Thanks again all of you. I may not have specifically referenced your reply but I'm taking it all on board. Every single thing.


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.
lam007 #144553 01-05-2012 07:51 PM
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Take it day by day. You are doing the very best job you can do. Being a caregiver is very difficult. I dont think I could do it. You have to wear so many hats that when would you have time to catch your breath? I hope you are able to set aside a few minutes every single day for just yourself. Its a very rough path you are on and you need your strength and the patience of a saint. Even if its for 10 minutes to walk around the block, have an uninterrupted phone call with a friend, go out to lunch, or soak in the tub (or since you are in Australia to take a cold shower to cool off) smile We patients know all too well what our caregivers endure, so a big thanks for what you do!!! Hang in there, we will be here to help.


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
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Posts: 60
lam007 Offline OP
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Oh I get my "me" time. Rick is very conscious of my need for it and the kids accept that's just the way it is. When he was first diagnosed I was wound pretty tight. I threw away the cigarettes the day after reading the CT report. (He quit many years ago.) Did I miss them? Not in the slightest.

A week or so later I went to the local pool for a swim because I find water relaxing. I still wasn't ready to come home after my swim so I went for a walk on the beach. I wasn't ready to stop when I got to the end so I continued up the track at the headland. I went up to a lookout, one that I had been up to in the past. Although I was out of breath, it wasn't unpleasant like it had been the last time I went.

I have continued exercising as a way to cope. It makes me feel powerful and in control. It is a guilt-free escape. And I'm finding the hills don't seem very steep and the ocean doesn't feel as cold. I am choosing not to be bothered by some things anymore. You might want to check back with me in 5 years but something fundamentally changed at 3:25pm Tuesday October 25th. For better AND for worse, I will never be the same.


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.
lam007 #144557 01-06-2012 02:07 AM
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I know what you mean Laura. I said to someone yesterday, that I feel like I have been holding my breath for 7 and a half months.

With regard to the peg again, Simon empties out half the can (he's on Ensure Plus) then fills it up again with water. Then has the other half with the same amount of water also, so for every 250ml of food he's also having 250ml of water. It helps to get in the 2.5 litres of water he tries for each day. It also helps with his indigestion and allows the food to flow through the tube more easily.

His PEG was put in at the beginning of 7 weeks rx. He is now 7 weeks post rx and I can't see him getting rid of the PEG for at least another month or two. He can eat, but he says food tastes very average indeed, so the PEG is helping him to stack on the weight.


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.
samkl #144559 01-06-2012 08:05 AM
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Hi. Boy have I been where you are. It is so extremely frustrating! My husband refused to have the PEG put in when we initially met with his doctors. His ENT, RO and MO all insisted and John agreed but swore he wouldn't need it or use it. When things started getting really bad around week 3 he started to use it a little but not as much as he should have. He continued to loose weight and feel lousy. He was on both Zofran and Compazine for the nausea and gagging. I finally sat down with him one day after many days of bribing, begging etc. and explained to him that his body couldn't fight the way it needs to without the proper hydration and nutrition. Luckily that seemed to work and he started using the PEG. Even with the PEG in he lost 30 lbs. John hates hospitals and I think the thought of having to be hospitalized for hydration or nutrition also got him using the PEG to avoid that.

John hates pain pills and got through treatment without any but the PEG was a lifesaver. He had the PEG removed 2 1/2 months after treatment ended and has regained all the weight he lost. smile We are here for you!


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
slim #144566 01-06-2012 09:37 AM
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Hi there again. Tell him the hair thing was the most disturbing thing for me being a woman.. I lost all of it from almost the top of my ears down to my nape and it thinned all over my left side - I looked funny! And my ponytail was anorexic in a big way! This was all due to rads - being a man is a little better because he can shave his whole head to match! smile at some point food becomes unpalatable - I mean completely - pop tasted like turpentine, etc. he needs to look at it not as a pleasure to eat but a survival tool. Seriously I tried soups etc, up to week 4-5 then I gave up and went for bland and just chugged my ensure plus (I changed flavors frequently to stave off boredom) . Since he's a man and needs more - calories -the carnation is right for him. Flatten club soda - let it sit on the counter... If he's drinking water it's likely most comfortable Luke warm, have him down a glass of this. It helps heal. And because you can drink it it's hydration. Post chemo there are several drugs he has to take up to day three then his breakthrough antiemetic if needed-- maybe try having him take it half an hour before he tries eating. And taking meds on an empty stomach can contribute to nausea, so maybe if he even takes a mouthful, if he has to have a pain med. I remember the feeling of not wanting to eat but I forced myself - I was my own caregiver despite being married. Since my husband works long hours and didn't know what to do for me. Plus I'm just like that... I know what has to be done so I suck it up and do it! And I want to be left alone when I feel crappy. smile good luck! Hopefully something will work. The drugs and the treatments are poisoning him, he needs nutrition to fight back. Take care and do take a mental health break!


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
lam007 #144570 01-06-2012 03:59 PM
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klo Offline
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Sounds like you have yourself, your husband and his treatment under control as much as is possible. With support and words of advice from this forum, you will be looking back as a co-survivor in no time.

Yes, TwoCal and Jevity are high calorie drinks as well as Ensure Plus which are all pretty much the same in cal/mL and nutrition (although be aware they have no fibre). Supermarket or chemist bought ones are not "complete" enough and tend to offer extra protein without all the other essentials. They tend to be complementary rather than supplementary.

Good that you have a variety. Alex went through a few before settling on Ensure Plus which made him feel slightly less ill than the others. TwoCal was impossible for Alex and now, the smell of Vanilla (the only flavour we could get) makes us both sick. There is a juice type of one as well (Enliven)if your husband is struggling with the creaminess of the others. It didn't suit Alex, but your husband may prefer it.

Watering down worked for Alex as well although he hated doing this as it prolonged the process (which is part of why he ended up in hospital).

I don't know if we can get Carnation through the dietician here. Certainly it was never offered to us although I did not try the net at the time as I hadn't found this website yet. My early forays onto the net, uncovered a confusing array of body building style high protein drinks which were no good for us and cost a fortune.

That your husband is still eating is a very positive thing -Alex was entirely dependent on drinking or PEG administration from the beginning due to tumour damage and pain. Don't forget the hydration either. Flat soda water may help cut through the mucous - first mouthful may be swished and spat then he can drink the rest. There are many stories here of people relying on flatish fizzy drinks - usually soda or mineral water to help.

Re what finally motivated Alex? It was never about himself or fear of dying which blew me away when I finally twigged. The turning point seemed to be the day I told him I could not bear to be left alone after waiting for him half my life. He took that as his challenge. What motivated me? Research, knowledge and breaking each issue into a series of steps to solve the problem. Using Alex as a guinea pig to try out all the potential solutions. Drove Alex insane but kept him alive enough to start paying back the 649 cups of tea he owes me (currency used for each solution found) grin


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
klo #144575 01-06-2012 06:43 PM
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Laura

First, I really sympathize with your husband. EricS had it right on the money about the different viewpoints of patients and caregivers. Jevity 1.5 is much much better for him than Ensure Plus since Jevity 1.5 actually does have fiber in it, in fact it's a special blend of oat and soy fiber that is chemically treated so after it hits the stomach it turns into 3 grams a can with 75% insoluble (what you need to avoid diarrhea). It's pretty cool, although it falls out of solution with wine so you can not mix the Jevity.
Hint to get more down easily: make a nice cup of coffee and add the jevity cans, they mix fantastic and the smell of the coffee plus the caffeine is a tonic. Of course this has to go down the feeding tube but it gets him in the habit of using it. For breakfast, I always have two full cans (474 ML) and coffee. For lunch, I do two more cans, For snack, one can in afternoon and then the Vitamix for real food.
Last but not least, please consider just telling your husband that you are counting on him to be here for you and the children. I know that if my wife had not broken down and said how much she needed me to tough it out and be here, I would not have bothered to do what was needed to be done. It really really hurts to eat, drink and the feeding tube is pure hell (still is for me). I've had a great and wonderful life and the struggle was simply too too much to deal with except that I realized that I would be abandoning my wife and son. As EricS posts, if you have a Why, you can do anything.
You can even do it tangentially by mentioning to him that when you read one post, you couldn't help but think that maybe he does not realize just how much you need and want him. Because if he does, then he needs to man up here.
Sad to say, what he is feeling is so normal, but that is no excuse for not dealing with it. Oh, and despite what everybody says, if he gets 2,000 calories down a day, he will make it. I was only 56 kg when I ran marathons and I am taller than your husband so his weight seems okay to me especially since I went down to that during my first TX.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Hi Charm:
Where do you get your Jevity, and how many calories does it have in a can? Can you get different flavors? Thanks, and hope you have a wonderful New Year.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Jevity is gotten ffrom a medical supply company. It is a prescription formula prescribed by the gastro doc, a nutritionist, or one of the other many doctors we have. There are several strengths to Jevity or any of the other high calorie nutritional formulas. There are probably over 100 different ones a person can be on. Usually the calories in these formulas range from 175 to 575 with most being 375 per can. These are completye balanced nutrition some with fiber and some without. Im sure someone could drink these things if they really wanted to but the smell of it is like baby formula. Mine is put into a feeding bag with a can or 2 of water and run thru a feeding pump while I sleep.


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
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julieann

Your post lets me clarify my advice to Laura. Christine has summed up the options. IMO Jevity can only be tolerated with a feeding tube - it has only one flavor: "Yuck". Jevity 1.5 has 355 calories per 8 oz. can. My medical supply house delivers 8 cases plus 30 syringes each month per my prescription. The can says it can be drunk, but I think you would have to be very drunk to be able to drink it. wink

Laura

Since your husband already has a feeding tube, I pushed the Jevity 1.5. However since he can still swallow, it is important that he keep doing so and Ensure Plus (I also could only stand the Vanilla ) or Carnation VHC are " better" than jevity to drink. IMO, You caregivers have it so much harder than the patient. I hope his weight stabilizes.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Ah ha, my memory is coming back. I remember that is what I had delivered to my house when I was taking my treatments and had a feeding tube - I believe my insurance paid for it. Thanks guys for the information - I still have trouble swallowing after 4 years, and thought I'd try something different than the Carnation VHC, but I sure don't want to try to drink the Jevity. I knew the name sounded familiar sick
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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I cant drink my formula either. Just the smell of it is enough to make me gag! I use Nutren 1.5. Both my type and the Jevity are pretty popular liquid formulas.


Lsura, keep encouraging your husband to use the feeding tube as a tool to help him get thru this. If you dont have a pump ask for one. This way you can do the feedings like Angie's caregiver did. Everything they went to sleep she hooked up the feeding pump and let it run.

I hope your husband is beginning to take more in so he feels a little better. Try printing out all these responses and showing them to him. He will realize he is not alone and we have given tips on how to help him get thru this.


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: Mar 2008
Posts: 404
Likes: 2
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I had a PEG tube for 3 � years. For many months at a time I was totally dependent on the feeding tube. It is a tough situation to be in, both physically and emotionally. There were many times my medical team and I thought I might require the feeding tube permanently. The PEG is a useful tool that can prevent malnutrition, dehydration and consequently ending up in hospital. The times I could swallow throughout treatments, I could not drink those canned products. The smell makes me puke. IMO permanent PEG uses deserve a medal!

Ensure is the supplement of choice through the Victorian hospital system. A couple of years back I asked if they could supply, or put me in contact with a supplier of the Carnation product mentioned here. The nutritionist looked into it through the hospital contacts. Unfortunately at the time it was too expensive to get in Australia. It might be more accessible now.

Karen


46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Ron use to add either Hershey's chocolate or Strawberry flavoring to his cans of plain vanilla Ensure or Isomil is it called? I can't remember it's been awhile since he used that stuff they sent and I think we have alot left too. I'll have to check on that.


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
SUEZ #144634 01-10-2012 06:12 AM
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The canned formulas expire. There are many needy patients who arent lucky enough to get the prescription formulas paid for. For anyone who has formula or supplies left over there is a great organization that will help you get it to someone needy. Ive been caught without insurance for the past 6 months and have used them with great success. For example, someone doesnt have insurance, medical supply companies charge $10 per feeding bag. They are free with your formula. This is an exchnge program where the person who needs the supplys send a money order to cover S&H to the person who is donating it. There are also many manufacturers who will give donations of free formula for needy patients. Please IM me for any further info about ither program.

Oley Supply Exchange



(Sorry, I cant find the Nestle info right now but will later when I have more time.)


Last edited by ChristineB; 01-10-2012 06:22 AM. Reason: add link

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
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