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#197257 10-01-2018 09:16 AM
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ConnieT Offline OP
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can we discuss this......

1. when does it start to come back?
2. did you experience it or did others tell you that you are not remembering as well?

just wondering. I watched my husband sitting at the puzzle table today which I have been running during this treatment. I also oversee the one in Chemo dept. I brought some word puzzles, color books, cards, crayons, etc and keep bringing more simple puzzles as many enjoy sitting down and building them. I've got to meet several people while building puzzles with them and I've enjoyed it. I was happy to see someone else caught on and had donated a basket of word puzzles, coloring book and crayons since last week. Yay! This radiation department also has a healing garden and picks produce for us to enjoy. The local grocery store brings in fresh fruit. They only have healthy choices here which makes me smile. They have a nice library in the waiting room too. I can't say enough good things about this cancer center.

Anyway, my husband is an IT guy, woodworker, detail person but I can see that putting together a simple puzzle piece (one of the reasons I am donating more simple ones with bigger pieces) is almost impossible. I noticed people don't concentrate as well as I would expect so not surprised that a puzzle might be a little overwhelming. I understand there is a lot on one's mind going through this. But I also know he called on Friday to ask how many more treatments he had. 4. He asked again today. I said 4. Nurse said 4 counting today. I reminded him that he called on Friday and he said it's alzheimers so I guess he realizes he isn't remembering things. I've read there's chemo brain and I felt I had it in the beginning as all the details run together while taking in this immense challenge ahead but I am just wondering of other's experiences and what to expect as his disability runs out Oct 19th and I bet he thinks he will be able to work some again. I'm doubting it.


I will say I was shocked at how slow motion his thinking has become even since treatment on Friday. Very noticeable.

thanks......so appreciate everyone here.

Last edited by ConnieT; 10-01-2018 10:15 AM.

Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197259 10-01-2018 07:16 PM
Joined: Jun 2013
Posts: 346
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I feel mine has only gotten worse ... but I also have to say, I've had other health complications, I homeschool, I help lead two Scout groups, and am generally in over my head with 'stuff' ... so who knows? I picked up woodcarving shortly before the cancer hit, and that's probably one thing that hasn't been adversely affected ... maybe because I wasn't terribly proficient yet beforehand. (I've missed a lot of local group meetings, but they've been super supportive.) I think the mental part comes back once the body gets better, really, because the body has its priorities ... and the Sunday crossword puzzles is NOT up there over one's ability to digest food safely, however much we might want it to be. (Kind of like pregnancy and all those other body-takes-charge situations.) I will say, this year with the teeth / denture issue and the poorer nutrition has been disastrous for my cognition. (I am SO glad my kids are teens now and help remind me of things!)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
ConnieT #197262 10-01-2018 07:55 PM
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ConnieT Offline OP
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thank you KristenS.

My daughter's fiance talked to husband last week about proposing...now mind you, we've seen him once but when I sent pic to husband showing her hand with a ring on it, he said, Is that an engagement ring?" That was the start of it last week after 3rd chemo treatment. Cognition has gone down quickly. Today really shocked me though as I knew what he was like looking at the puzzle last week and this week...almost a blank stare even when I tried to help him.

This is going to be a long haul I"m afraid. I do think I will talk to the nurses on Thursday which is his last radiation appt.



Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197263 10-01-2018 08:18 PM
Joined: Jun 2013
Posts: 346
Likes: 3
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Wow, that IS scary. That's a big thing to not remember. But ... it's also a very new thing, and he wasn't in top form when he first learned about it, either. Plus, from your descriptions of him, he's used to being self-focused, so it might not have even sunk in very deeply when they met the other day just from pure habit, if that helps some. But definitely worth mentioning to the nurses, because that does seem like a lot of decline. If things are going very badly, sometimes they can taper off a treatment or two early. There are preferred protocols, but people aren't robots, and not everyone needs exactly the same thing. I know I was able to skip one chemo (I had weekly ones) and maybe even a radiation or two, but we were dealing with snowstorms and illnesses and things that we had to work around, so it wasn't like they were all 'on schedule' as it was. Life happens, and the doctors get it. Ask, and see what they say.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
ConnieT #197264 10-01-2018 09:15 PM
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Posts: 10,507
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Administrator, Director of Patient Support Services
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Unfortunately what you are noticing we refer to around here as "chemo brain". As with anything, this too will improve. It just takes time. Lots of time! Recovery can be a very challenging phase! None of us ever can get well as quickly as we think we should. The first 2-3 weeks can be especially difficult. Most struggle the most during the first 2-3 weeks after finishing rads. Your husbands intake is critical to helping him get thru the first few weeks of recovery. If he is a bit "foggy" thats perfectly normal as is insomnia, extreme fatigue, and mouth sores. Right at the end of rads is when most will temporarily lose their voice, have the worst of their pain, and struggle with staying hydrated. Make sure your husbands doc gives him a prescription to continue getting extra hydration on an "as needed" basis. Those extra fluids have helped him tremendously! Im sure that has been what has lessened your husbands side effects and allowed him to get thru rads a little easier than most other OC patients/survivors.

If your husband is "not quite there" at times and taking pain meds, he may not be up to driving himself to appointments for the next several weeks. From what you described, his reaction time must be dramatically slower than when this whole ordeal began. Getting behind the wheel is too risky for not only your husband but anyone else on the road. I had a 45 minute drive each way to my treatment facility. I could tell I wasnt myself and got my son to drive me around my 3rd week of rads. My drive was nowhere close to what your husbands is. I knew my limits and no matter how much I disliked depending on others it was necessary to have drivers.

With your husbands treatments almost over, make sure to get all contact info for the entire treatment team. If cell numbers and email addresses are options its a good idea to get them just i n case. Make sure you get all prescriptions w/ refills (if available) and have a long talk with your husbands nurse to make certain you have everything you need. Ask about emergency 24/7 calling and what the medical team would say should be called in vs a trip to the ER. As treatments end and the recovery phase begins, most patients and caregivers feel a sense of abandonment from the medical team the had been accustomed to see every day. Make certain the nurse goes over what is normal and what isnt. Most of us dealt with thick ropey gunk-like phlegm that was very difficult to completely remove from the mouth/throat. Ask the nurse about getting a prescription for a portable suction machine which does an amazing ob at conquering the phlegm. Drinking extra water, rinsing with seltzer water and a water pik on its lowest setting also helps with the gunk. Dont be surprised to see more new side effects like the ropey thick gunk, even though rads is finished. Radiation treatments get progressively more difficult as time goes by with the ver worst of it right after finishing rads. Most patients are feeling their absolute worst around 7-12 days post rads. Its only a few more weeks until your husband starts to feel a little more like his old self.

Hang in there and keep making some time just for you too.


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
ConnieT #197268 10-02-2018 11:26 AM
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ConnieT Offline OP
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so much good info! thank you ladies.

he seemed slightly more on top of things today but still very foggy. 2 more radiation treatments! i can tell he is much more sick this week. Highly congested, sleeping most of the time.

The only time he drives is when he bolts out of the house and takes my car to walmart to buy water. I'm not happy that he does it but I think he's angry about his loss of independence.

Since fixing his feeding tube, he seems to be doing ok on fluids and intake but will find out for sure on his last appt on Thursday. And I agree, the ropey saliva has gotten a lot worse this week. I thought it was bad before but it is pretty bad. He sounds like Darth Vader when he breathes!

hanging in there! I drive for my business a couple of hours most days, I'm looking forward to driving just a couple of hours a day!



Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
ConnieT #197272 10-02-2018 10:16 PM
Joined: Apr 2018
Posts: 51
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Joined: Apr 2018
Posts: 51
The ropey gunk was the worst thing for me, even above the pain. Helpful was gargling with warm water with salt and baking soda several times a day and drinking Coke, I'm still drinking Coke 5 months later. The gunk will hang around for a couple more months.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
Non smoker, occasional alcohol use
ConnieT #197273 10-03-2018 03:57 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Im sorry to see you too suffered with the thick ropey gunk, Denise! Almost every single OC patient deals with the thick ropey gunk. Most patients have said they had the ropey gunk anywhere from 3-8 weeks post rads. For me, either I was pretty lucky or my memory is failing... thinking back to the thick gunk, I didnt have it too long, maybe 3 or 4 weeks post rads. One day I woke up and it was gone by the next morning the gunk was replaced with the dry mouth phase. The dry mouth phase felt like it took forever to improve but in reality I kinda think I just learned how to manage it better.


PS.... Denise, Im so jealous of your ability to drink Coke!!! That brings back memories, coke was one of my pre-cancer favorites. I used to stick a can in the freezer for a few minutes to get it extra cold, almost to the point of turning it into slush. I cant tell you how many times I forgot a can and had it explode in the freezer making a huge mess.



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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