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#194222 - 04/23/17 04:02 PM What to expect one week after treatment  
Joined: Feb 2017
Posts: 66
sooner Offline
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sooner  Offline
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Joined: Feb 2017
Posts: 66
We are at the end of the first week post treatment. It has been awful. I know everyone says the two weeks after treatment are most unpleasant. I don't know if we were just really not prepared or what as the medical team did not paint the same grim picture of this time that the patients on this site do. I am so glad that after reading here I at least had a heads up that we were headed for a rough patch. We ended up in the ER because of dehydration and vomiting and pain that was preventing most swallowing and making him short of breath. They actually did a scope to see if he had developed an abscess or other issue. We have had issues with recurrent thrush causing throat pain. He's on meds to clear that up and preventative meds for that. When they did the scope they said the thrush was clearing for sure but of course his throat was in the kind of shape you would expect. That was reassuring. He's just in a mess. He had lost his voice but had it sort of back before this last round of treatments. It's gone again. Not having a voice is so isolating in so many ways. It is so frustrating as a caregiver. I can't do this for him. He is on fluids every other day for this week for sure. After that we will see what is needed.

1. He is experiencing more throat pain than ever at any time in treatment which is making any attempts at eating impossible even with drugs. He says his pain goes from terrible to bearable with the pain meds. He is pegging 100% of his nutrition and hydration.

2. Despite constant reminders from me and others on the medical team, he has only taken in the recommended number of calories one day since April 10. He is close to what he should be taking but says he just CANNOT get in the last feeding. He is within about a few hundred calories of the very minimum the dietician recommended number most days. He was getting them all in before this last round of treatments. I cannot figure out what has changed or if I should even be making an issue of it. Honestly, he just can't/won't eat the last feeding so my issue making is not working. When he pushes himself to do it, he ends up vomiting which is counterproductive on so many levels. He is having over the recommended amount of residuals with his peg tube at least part of the time.

3. I am planning to call the Cancer Center and ask for some direction on Monday but wondered if anyone here had any advice. He is just so discouraged. My frustration is that he has been given the advice to stay on the anti-emetics routinely. He just won't do it because he says he is not nauseated but then he vomits unexpectedly because of either constipation or dehydration. He has been told to take more pain meds but he says if he does that then he is asleep and eats even less and has more constipation potential. He has been told to take some extra steps to prevent constipation from developing but to me he resists that as well and waits until he is constipated and miserable then takes action to relieve it. He says if he is more aggressive about managing it he ends up with diarrhea which is not helpful on numerous levels. I can't help but think the constipation that manifests itself has probably been brewing and causing his issues with wanting to eat less before he feels completely miserable and increases his medications. He is on routine meds for it but not as many as they have told him to use.

4. As a caregiver I am torn. I am not living in his body so when he says he can' t/won't eat I have to believe him but there is another part of me that just wants him to do every single thing he is told to do to the letter. Just be compliant, please I want to scream. But then I realize he has lost control of so much that letting him make some choices seems only fair given that I am not experiencing what he is. The only thing I have gained total compliance about is getting the fluids. He did not do that one time and told me he would work really hard to get in all of his nutrition/hydration. He did that for one day. Of course given the cumulative effect of not doing it he couldn't keep up with just one day and ended up in the ER. So, now he is not resisting the fluids. We had a trial of Marinol with no impact. He just put on a Scopolamine patch today to see if that works any better. Before this final round of treatment we could both see him returning to work and feeling better in time. Right now he feels worse than he ever has, is beyond fatigued, is having more pain than ever and has no voice again. At this moment he says he can't see past the misery and I think he sees no hope he will recover. HIs labs are not bad except for an unexplained rise in his WBC, so and they have not yielded an explanation for this. Is this just typical and we have to slog through it? They told us during the ER visit that he probably should not be alone for 3 weeks. We had not prepared for that length of constant supervision. I have someone to be with him through this Wednesday then I am going to have to rethink things. I keep thinking that if he was getting his calories we would see a turn around. We talk about it every day but he just can't/won't. I am trying not to get discouraged myself.


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
#194224 - 04/23/17 05:57 PM Re: What to expect one week after treatment [Re: sooner]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
Toronto, Canada
Hi Sooner,

i assume your husband is using Ensure/Boost or something like that. Is he on the regular stuff or is he on something with a higher calorie content -- like 500 calories per feeding? It may help with the problem of his not wanting to have his final feed. If he can tolerate the higher calories, maybe that's the way to go.

We were always told to get ahead of the curve when John was taking anti-emetics. The explanation was once the nausea starts, it's very hard to bring it back under control. Will your husband accept that as an explanation? I know some people feel that taking the meds is like an admission of failure, but if he is becoming miserable and sick, he might need to re-think it. My husband hated the post-treatment period because he felt he had been "reduced" as a man by the treatment. It took a lot of convincing to get him to see that heroics had nothing to do with it. It's not a failure to have to take the pain medication/anti-emetics, it's just pain management with the emphasis on management. He might consider starting with the prescribed dose and then slowly reducing the dose and see if it will work for him. Of course, if you are going to do that, make sure you check with the Cancer Center first. As for the constipation, will he at least take a stool softener? Of course, the more hydration there is, the easier it is to keep constipation away.

I understand totally how you are feeling, having been the one and only caregiver for my husband through almost four years. I had to learn to roll with the punches and to take it day by day. If you are feeling really anxious, you might want to look into getting some counseling or even some anti-anxiety medication. I coped by being super-organized. I recorded everything that went into my husband's mouth. I recorded his weight, his pulse, blood pressure, temperature, etc. that way, we never had to argue about "how much." It makes it more a factual issue than an emotional issue, especially with the intake and the hydration.

I hope some of this helps. Do let us know how you are getting on. Hopefully other will pitch it with their ideas as well.


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.
#194226 - 04/23/17 06:43 PM Re: What to expect one week after treatment [Re: sooner]  
Joined: Jun 2007
Posts: 9,680
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,680
PA
Im so sorry to read about what you and your husband are going thru! Your husbands medical team really should have been upfront and told you about how rough the first couple weeks after rads are. Right now is the lowest of the low times for all OC patients who go thru rads. If your husband has a feeding pump (most common is the Joey pump), he can have it run slowly overnight while he sleeps (propped up on a couple extra pillows) to take in a couple extra cans of formula. This should ensure he hits his daily numbers. By taking in less than he should his recovery will only be more difficult. Ive been where your husband is and it is one heck of a hard time!!! I had constipation and diarrhea too as do most OC patients. I also lost my voice as do many patients. Its only temporary and will come back as he begins to heal. BUT.... to heal he must take in enough calories (protein is especially important) or he will get well at a much slower pace. Im a nag about intake all because Ive gone thru this and know how hard it is, I also was hospitalized for malnutrition and dehydration a few times. I wasnt the best with keeping up with my intake either and boy did I pay for it. Every single day thru his first year anniversary of finishing rads (at the very least) your husband should be taking in at least 2500 calories and 48-64 oz of water (water in the formula counts too). There isnt much you can do to help or encourage your husband to do better.... he must understand the big picture and do it out of necessity or suffer the consequences like I did.


I feel so bad for you both!!!! As a caregiver you have such a tough job, and right now is the worst it should get for you both. Just make sure to take good care of you and take a break once in a while to clear your head. Hang in there, you guys are almost past the worst of it. Take it day by day and soon enough you will see some improvement.


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
#194229 - 04/23/17 10:49 PM Re: What to expect one week after treatment [Re: sooner]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
I wrote a long response but it did not post....too tired to do it again but thank you all for your words of support. Yes, he is on VHC Boost, 530 calories. We are tracking everything and aware he is not meeting the benchmarks. He knows he needs to and understands it is critical but just can't. Maybe tomorrow will be better.


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
#194230 - 04/24/17 12:11 AM Re: What to expect one week after treatment [Re: sooner]  
Joined: Jun 2007
Posts: 9,680
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 9,680
PA
Awwww! I feel so bad for you both!!!!

If your husband doesnt have the feeding pump to use while he sleeps maybe that could help? I completely understand why he says he cant. I had the same problems like he did. I would sleep instead of doing feedings as I didnt have a caregiver. Your husband is very fortunate to have you.

You're right... all you can do is take it day by day. Hope tomorrow is better for you both.


PS... Im sorry you had problems posting your reply. I havent been aware of any tech issues after our recent website upgrade. Please let me know if you have any further problems.





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
#194238 - 04/24/17 11:38 PM Re: What to expect one week after treatment [Re: sooner]  
Joined: Apr 2017
Posts: 16
Elainy Offline
Member
Elainy  Offline
Member

Joined: Apr 2017
Posts: 16
New Jersey
Hello
I'm so sorry to hear of your husbands discomfort. I been thru it. I was using the Store Brand (Walgreens) ENsure in the Vanilla Protein Plus 350 calories. I remember even the smell of food would make me sick. As far as the NO speaking OMG is that so frustrating. Did you hear of the BOOGIE BOARD...its a dry erase board about 4 X 6 LED . U can write on it with the PEN it comes with and press the button to erase. They last a long time and now I keep them in all the rooms I use. I hope he feels better real soon. I'm sure DOCS told you that half the battle is a POSITIVE ATTITIUDE. Keep it in his mind ITS TEMPORARY!!!! There is light at the end of the tunnel. Just STAY HYDRATED... and yes LOTSA protein of course. As far as the PAIN MEDS..you gotta do what you gotta do to stay comfortable, I never had constipation I was on liquid morphine. It was very helpful. GOOD LUCK to you. I hope all gets better for you both. Hang in there please....


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
#194240 - 04/25/17 02:56 AM Re: What to expect one week after treatment [Re: sooner]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
He had a good day today. Took in all his calories without nagging. smile Had fluids, labs which were much improved and even worked a little in the AM then slept all PM which I supported! One good day can take us a long way. The only two things we changed were putting on a Scopolamine patch and having the 3rd day of fluids. Whatever made it happen, I am taking it with a grateful heart. At one point he said today, "I am not tired." I have not heard that in months. Then he took two naps which I consider totally normal for this stage.


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
#194242 - 04/25/17 07:26 AM Re: What to expect one week after treatment [Re: sooner]  
Joined: Apr 2017
Posts: 16
Elainy Offline
Member
Elainy  Offline
Member

Joined: Apr 2017
Posts: 16
New Jersey
Im glad to hear he's having a better day. I hope this continues moving forward. Yay!! He will probly go up and down. Just try to hang in there. Best wishes to you both 😉


SCC 5/21/09 Base Of Tongue, Stage 4-age 42
5X Cipltn, 37 IMRT end 9/09
10/09 neck disection- 2nd Feed tube instal
2/11 Tracheostomy-
2/12 - 2/13 over 25 Diolations
2/14 Total voice loss
2/15 Total Laryngectomy Researched
2/16 Jaw bone starts to deteriorate TL put on Hold
6/16 30+ HBO dives
Annual PET shows NED until the hot spot lights up the jaw bone
1/17 Jaw Replacement research
#194246 - 04/25/17 12:49 PM Re: What to expect one week after treatment [Re: sooner]  
Joined: Oct 2012
Posts: 854
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
"Above & Beyond" Member (500+ posts)

Joined: Oct 2012
Posts: 854
Toronto, Canada
Hi Sooner,

Having enough hydration would make him feel less tired. ChristineB is right, it's so important to be adequately hydrated. The only time my husband was dehydrated was after his first chemo, about the end of the second week into his rads. He went from passing out in the doctor's office to being his normal self after he was given intravenous hydration. Thereafter, it was never a problem to get him to take in fluids. Make sure you keep an eye on his fluid intake and he should feel a lot better.

Keeping you both in my thoughts.


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.

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