| Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2012 Posts: 58 | I am the caregiver. My spouse RT ended 2 months ago. He has returned to work (as full time as possible). We even went out for dinner a month ago (anniversary) so what is going on?
He complained of heartburn Friday and then the next day he complained about his throat. I noticed on Sunday that his voice was hoarse but he is getting sicker every day. He can't stand up for long because he thinks he will pass out (light-headed). He can't go to work now. He gets physically ill from just eating Chicken Broth. His BP is ok but his pulse is high.
He won't let me call the Oncologist or call the ER. He has had a regular Doctor appt scheduled for tomorrow so he has said NO to my other suggestions.
He is as sick IMO, as he appeared to be during the end of RT (not at all the same pain).
Any suggestions or ideas?
Stacey (Caregiver to Husband) Lymph Node Removed 10/12 Dx SCC MET 10/12 No Primary Tumor Found IMRT x 33 (Started RT late 11/12) CT Scan and PET Scan Clear 4/13
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Stacey - I think if it were me, I would call the Oncologist when your spouse is not around just to put your own mind at ease. You could call the regular Doctor, too in case it's something unrelated to cancer. Not knowing and worrying about something can produce a lot of stress and no one needs that kind of stress. You have to think about your own wellbeing so that you can continue being the great caregiver you are. Sometimes caregivers have to call the shots, here. Hope everything goes well and you find out something soon. Check back here and let us know what's 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.)
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Stacey, will he let you be part of the doctor's appointment? Can you talk to the doctor about your concerns so that your husband could be referred back to the oncologists?
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. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | It's sounds to be multi-factoral, and needs to be examined, have blood work, by the doctors for proper diagnosis. I can relate to all his symptoms, but may not be the same his, as are my causes. If he is only 3 months post treatment, it's still early, and may actually be doing well, even to have attempted working. Sometimes it can take a full year to recover. It's taking me much longer.
GERD CIF...chemo induced fatigue Anemia Malnutrition Dehydration Low blood pressure
Good luck with the doctor tomorrow.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2012 Posts: 58 | Thanks to all. The Family Dr did blood tests due next week. The urine test showed that he is dehydrated. Hopefully, he will be able/willing to drink Gatorade and they suggested the BRAT diet. He has the problem of not being able to keep anything down but ever since RT he won't (refuses to) eat any food that tastes bad OR even leaves a bad taste in his mouth. The RO told him once that he had to live.
Stacey (Caregiver to Husband) Lymph Node Removed 10/12 Dx SCC MET 10/12 No Primary Tumor Found IMRT x 33 (Started RT late 11/12) CT Scan and PET Scan Clear 4/13
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Glad they identified one deficiency. Maybe your husband can get hydration by IV, ask. He does need to eat to survive, wether it tastes bad of not, unless he has a peg or nasal tube. The less side effects one has, weight loss and other complications have better prognosis. Can he chug down some protein drinks? He needs intervention from a multi-dusplinsry team, speech and swallow therapist, nutrionist, pain management, psychology, besides the RO and MO, to help with his not getting enough nutrients, hydration. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | It's good they found out about being dehydrated. When you're feeling badly it's hard to be able to keep track of how much water. Maybe lining up some water bottles for the day so he knows how much more he has to go to complete his required water intake. Sometimes you have to try different things until you find what can be tolerated. Certain meds can cause unexpected reactions. When my son had a lot of nausea, his meds had to be switched. It can be pretty depressing to feel badly for what seems so long. If the oncologist can be involved he may have some suggestions that could really help get your husband back on tract and feeling better. Hope things improve a lot very soon!
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.)
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | There is a "Water Apps" that keeps track. It lines up the glasses, I need, 11, based on my weight 178, and activities, which is none. Each time you drink, the display then empties the glass lol. I didn't really need it, but was fun to see, use for a day.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | If they know he's dehydrated they should be willing to give him IV fluids. I agree, I would ask. It's just the easiest, quickest way to hydration.
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Nov 2012 Posts: 58 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2012 Posts: 58 | He very slowly sips a glass of water that appears to last all day. Our Dr told him to stop with the water and drink Gatorade for example. He also said to go to the ER for IV fluids if needed this weekend.
He would not drink any Gatorade today tho. He didn't eat anything and I told him earlier today that I am doing what I think is right and safe for him and I am sorry that he doesn't agree. He is too weak to argue. The RO did want to see him but my husband didn't want to travel that far (20 minutes). He had to lay the seat flat to travel 6 minutes to our MD.
The Dr mentioned a possible virus, depression etc. I pleaded with him to drink/eat things that might/do leave a 'bad' after taste in his mouth but he won't. I pleaded with him to explain why he won't eat or drink (physically can't do it or what?) He said that he 'can' drink/eat certain things but it leaves a bad after taste. I suggested he use Biotene after...no luck. The RO told him that he has to 'Eat to Live' but he won't. He can actually eat now (couldn't before) but he seems to be saying that if I can't enjoy it then I choose not to eat or drink it.
I wish that he would use the help that is available to him. We have insurance so there is no excuse for this. The RO asked him to talk to the Dietician and he said ok to him but when I mentioned it then he was visibly angry and thought the idea was ridiculous.
He is dehydrated but he also complained to the MD about ear pain (and throat). It was the ear pain or tinging that finally prompted him to find the ENT.
Sorry for so much talking. I don't know what to think or if this is normal and I am overreacting.
Thanks to everyone.
Stacey (Caregiver to Husband) Lymph Node Removed 10/12 Dx SCC MET 10/12 No Primary Tumor Found IMRT x 33 (Started RT late 11/12) CT Scan and PET Scan Clear 4/13
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