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#194061 03-26-2017 07:29 AM
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sooner Offline OP
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My husband just had his 2/3 planned rounds of Cisplatin three weeks apart in in the middle of IMRT treatments. He is over half way through the treatments. This time, for the first time since treatment started, he seems to be really struggling emotionally. Don't get me wrong we have had hard days and the entire spectrum of emotional responses but this seems different. He is not feeling well from the Cisplatin which I know is part of it but how do you know when to be concerned and what do you do if you are concerned about their emotional well being? We go to a Cancer Center out of town. We travel and go in for treatment and then come home. I have the insurance for the family and I am trying to still work so we don't stay around for support groups. There is a group locally that has invited him to come but he has not seemed interested. Honestly, we are both so exhausted I think doing one more thing has seemed overwhelming. I am starting to think I might need to insist/encourage. I don't know what else to do. We see the MO on Tuesday. I assume I should mention this to him.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
sooner #194062 03-26-2017 09:01 AM
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Your husband is probably quite fatigued at this point in his treatment. His entire being might be focused on just staying well enough to go in for the daily radiation sessions. At this point, my husband lost all interest in things, even watching his favorite shows on the iPad in bed. He was also bothered by the thickened neck as a result of the collection of lymphatic fluid. He wasn't a vain man, but he didn't like what he saw in the mirror.

Have you mentioned the listlessness to the doctors? They may be able to prescribe some anti-anxiety mess for him. It may only be for a short time and can help with his mood.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
sooner #194063 03-26-2017 09:50 AM
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sooner Offline OP
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Yes, he has mentioned being extremely fatigued for several days and we both know that is part of the journey. That's interesting about losing interest in his favorite shows. We had that conversation this morning and that was part of my increased concern. One thing he mentioned was seeing commercials for food and thinking, "I used to like to eat that." He was finding that very discouraging because right now he has zero and I mean zero interest in food. Every calorie is put in because he knows he has to do it. The RO was not there last week. We saw the PA and the speech path but 100% of the time was focused on pain management which was a huge problem at the time. We have that under much better control. I thought that would improve his mindset but instead he has had a far more difficult time coping with everything else. We don't see the MO until Tuesday. If he does not perk up before then I am going to have to ask for some direction. One thing I think is a huge contributor is that he could work very little last week. I think not being able to go in and see his friends/coworkers resulted in way to much time for him to think about his situation. I am worried about him but we will get through it. I just know this is all cumulative and I have felt like often we are just a little behind the curve in dealing with things. I am trying to be more proactive with this because I think your mental health is directly connected to your physical reserves for healing. Thanks for the insights.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
sooner #194064 03-26-2017 09:57 AM
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There are many things going on that can all seem small by themselves but put them together with facing cancer, battling the brutal treatments, and worrying about an uncertain future these things can easily become a cause for depression. Of course on top of everything else, he probably isnt feeling much like himself right now.

One major thing that I always tell our members is focus on what is within your control. His intake plays a much bigger role than you can imagine. If your husband isnt taking in at least 2500 calories and 48-64 oz of water every single day then he will not be feeling very good. Has he been losing weight? That is a sure sign he needs to up his intake. I know its not easy to do when going thru rads/chemo but it is the single most important thing he can do to help himself get thru this easier. If he is able to push to take in even higher calories like 3000 or 3500 it will only help make everything easier.

I also suggest seeking out a professional at the treatment center. Im sure you husband (and you as well) are probably a bit overwhelmed by everything going on. It would greatly benefit him to talk with someone experienced with dealing with cancer patients, he may also need anxiety meds to get him thru treatments and recovery. If you suggest it he may not want to hear it but if a professional who he doesnt know advises anxiety meds he probably would be more open to trying it.

If you havent done so already, contact the American Cancer Society and start the ball rolling on getting a volunteer driver. Yes, there are volunteers who drive those distances. I had a couple drivers take me to treatments and back home on my 45 minute commute to my treatment center. On my volunteer driver days, it was like the weight of the world was off my 17 year old sons shoulders. Just one day here and there for someone else to drive him would make a huge difference to you both. You could go to work without having to worry about your husband. I know I greatly enjoyed meeting other cancer survivors who were my drivers. It helped give me the hope I could make it thru the treatments and recover and go on to have a decent life after cancer. Those volunteers had no idea how important spending time with them was to me when I was in the dark days of rads/chemo treatments.

There all kinds of small things that can make a big difference and change a patients (and caregivers) perspective into a more positive way of thinking. The few I mentioned I know for certain they would help you both. These are the things that helped me get thru the terrible treatments and my recovery. I hope they can also benefit you and your husband. And yes, I do think your husbands doctors should be made aware of everything you have told us. They need to help him to get thru the treatments and Im sure they have seen others who have gone thru the same issues. Maybe its his medications that are making him depressed or maybe worrying about if the cancer will be eliminated could be whats bothering him. Ive noticed over the years, many male patients suffer silently with these problems. Its a good thing they have great caregivers by their side to help them over the hurdles.

Its ok to lean on us when the going gets tough. We have been there and know how bad it is and what can make a difference in helping to see this in a better light.

Best wishes with everything!!!


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
sooner #194065 03-26-2017 07:45 PM
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Posts: 46
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Welcome to the forum and I am sorry you are both dealing with this very tough disease. I had the same diagnosis and treatments as your husband. I don't know if this is of any comfort to you but his difficulties, both physically and mentally, are very typical at his point in treatment. My experience was very similar and the frustrations with food, fatigue, mouth sores, etc... all seem compounded by 10 by the fear and uncertainty of a cancer diagnosis. On top of that was the guilt I felt for putting all of this on my wife/caregiver.

It helped me to try and take as proactive an attitude as possible. Concentrating on what I had to do everyday. I tracked every calorie and every oz of liquid I ingested. Did my swallowing and mouth exercises 3 X a day. And when I needed to sleep, I slept. All the time keeping focused on beating this disease and getting better.

You didn't mention if your husband has a feeding tube. I could not have survived without it. Eating was a nightmare. The tube was a godsend and I kept my liquid and calorie levels where they had to be.

I saw a social counselor once a week during my treatments and she offered a few things that helped me tremendously with my attitude and my fears. If it's available I would strongly recommend it. I scheduled it right before a treatment so I didn't have to make another trip out.

You guys are halfway there so hang tight! It's worth the fight so keep the "prize" in sight!

Best of luck😃

Ed


Edward, 64 yrs
7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node
8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks.
Feeding tube and port.
10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue.
01/13/2016 PET Scan shows no sign of cancer.
EMTK3 #194066 03-27-2017 06:22 PM
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Posts: 67
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sooner Offline OP
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We came to the cancer center for treatment today, Monday. Met with the RO and speech path. He's lost 9 lbs. since we were here on Friday. Yes, he has a PEG tube, but when he is nauseated and exhausted after his chemo/radiation weeks he just will not eat or drink like he should. It seems like a vicious cycle, the meds for the nausea I feel like make him sleepy then he doesn't eat and drink like he should and that compounds the problem. As a caregiver, it is heartbreaking.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
sooner #194068 03-27-2017 06:38 PM
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The weight loss is what is troubling me. His intake must be way below what it should be for your husband to drop 9 pounds in such a short period of time. I fell into that same cycle where I preferred to stay in bed and sleep which only made me feel worse as I was skipping my feedings. This turned into malnutrition and dehydration which led to several hospitalizations. Im very concerned about your husband starting to avoid eating and drinking. Rads get progressively more difficult as treatments continue, they even keep working after treatments have finished. He must turn this around now or he will have a much harder time than most do.

If your husband has a feeding tube, he should also have a pump to go with it. If he doesnt have the pump tell his doctor he needs one right away. His doc can send a prescription to the medical supply company you use and he can get the pump delivered within 24 hours. A visiting nurse will come out and show you both how to use the pump. This is something you can do to greatly help break his cycle of not eating or drinking. You can set up the bag of formula and program the pump so it runs overnight or even while he is sitting watching tv. As far as nausea goes, he needs to get all the extra fluids to help flush the poison (chemo) out of his system.

Your husbands daily minimums he needs to take in every single day are at least 2500 calories and 48-64 oz of water. Remember all those ounces of formula count towards his daily water intake. He absolutely MUST get this every single day. I cant stress it enough. Every single person Ive nagged on here about their intake that has done their best to hit their daily minimums has gotten thru it much easier than those who havent followed my advice. The patients who didnt hit the minimums struggled and many unfortunately went down the same path I did with being hospitalized. At one point towards the end of my rads I was so sick I actually thought I was dying. I was just malnourished and dehydrated which really can make you feel pretty bad.

I know you have your hands full, do the best you can to encourage your husband to do better with his intake. Thats the only thing that will pull him out of this bad cycle he's fallen into. Please do your best to take good care of yourself too. I know this is hard on both of you. Take advantage of anyone who has offered to help out.

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
sooner #194069 03-27-2017 06:44 PM
Joined: Jun 2007
Posts: 10,507
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Im sending you a private message with other info.


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
sooner #194071 03-27-2017 08:59 PM
Joined: Mar 2014
Posts: 286
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Posts: 286
Hi and welcome. As has already been said both the physical and mental reactions you describe are typical for this stage. I remember being irritated by Christine's relentless nagging about calories! But she is absolutely right. Without nutrition the recovery from treatment takes months longer. Months of added uncomfortable symptoms, side effects and mental anguish.

One thing no one can really appreciate until they are in the situation is how quickly the taste can change. Something you can eat one day suddenly takes nauseating the next. Even water. There are a variety of great high calorie recipes around and my wife did a great job of becoming very inventive with the changes in taste. But a lot of that effort was wasted because something fine one day was tossed in the bin the next.

Simple flavours with strong smells worked for me, like coffee and peanut butter. For example she did a peanut butter and cream sauce for rice. It smelled like peanut butter, and regardless of what my screwy taste buds were telling me my sense of smell was able to convince the brain it was ok to swallow.

Its a moving target and patience is very important for both of you. It might not feel like you winning, but stick with it you are doing a great job.


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.
sooner #194075 03-28-2017 05:58 PM
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Posts: 67
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sooner Offline OP
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Well after two days at the center we came home with new meds and new things to try. They changed up his meds a lot. Their read on the situation was that it was highly likely connected in part to his medication regimen. We decided to makes some changes with it and see how he responded before doing other things. I also took some good advice from this site and once he was more alert and engaged we developed a plan for tracking his input much more explicitly. One day home, adequate hydration and nutrition and he seems so much better already. So thank you for all of the support and encouragement. Great ideas.


Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
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