| Joined: Jan 2017 Posts: 2 Member | OP Member Joined: Jan 2017 Posts: 2 | Hello everyone, I've scrolled through many posts and found wonderful information (and a supportive environment) and realized I should introduce myself. My name is Christina; 39yo mother of a 5 yo girl. My father was dx with Stage IV BOT cancer in September 2016, and 2 weeks later diagnosed with Stage III Colorectal Cancer (unrelated to BOT). He began receiving weekly chemo (Folfox) on 11/17/16, and began daily IMRT on 11/30/16, with a plan for a total colectomy once chemoradiation concluded and he had some time to heal.
He was tolerating treatment well until 1/1/17 (though it's difficult to tell, because he doesn't like to "complain") when he started to have severe difficulty swallowing, and was in a lot of pain. I made the decision to get him and bring him to my house on 1/2/16, and was shocked when I walked through his front door - he looked terrible (I had seen him 5 days prior, and talked over FaceTime on 12/31). I stayed up with him the night of the 2nd because he had so much excessive, thick mucus and couldn't swallow and his heart rate was over 150. We went to his regular radiation appointment on the 3rd and met with his radiation oncologist (who I had been in touch with via his cell phone for the last 24-hours around the clock - he is wonderful!) who brought us to the ER to be admitted, and Dad has been in the hospital now since the 3rd. He was dx with sepsis, tachycardia (due to existing AFIB and the infection), neutropenia, severe dehydration, and beginnings of malnutrition. He was given an NG tube, and a PEG was placed yesterday. Sepsis is now cleared, heart rate is (mostly) under control and white count has come back up a little. They are testing the PEG now with saline, and we're waiting for his first feed (hopefully tonight). Remaining question is that the ER chest CT showed some chest lymph nodes that looked enlarged - his oncologist and radiation oncologist want a biopsy (once discharged) before we resume treatment.
I am not letting him go home to his condo, he will be staying with me until he completes treatment and feels able to be at his own home (Plus my house is about 30 miles closer to the hospital where he's receiving tx). With everything going on with the hospital (plus my work and daughter), I haven't had time to even think about or prepare for what that will be like, or require. Any advice, support, ideas, experiences are appreciated. Thank you all so much.
Christina
Caregiver to Dad (Victor, Age 68) Dx 9/27/16 SCC BOT Stage IV (T4aN2cM0) Dx 10/18/16 Stage III Colorectal Cancer Previous Smoker (quit 5/18/08, smoked for 30 years) Began Tx: 11/17/16 Receiving: Daily IMRT(35), Weekly Folfox (Leucovorin Calcium, Fluorouracil, Oxaliplatin) Rx: 7 weeks Hospitalized: 01/03/17 - Present PEG installed: 01/11/17
| | | | 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 | Christina,
Welcome to the forum. You made a timely decision to take over the care of your father. A patient who is dehydrated can end up with serious problems. I am glad to hear that his temporary setback is being competently handled.
I am guessing that the doctors want to do a biopsy to determine if one of his two cancers has impacted the lymph nodes. If so, it will help them determine what the next step in his treatment will be.
Coming out of hospital, your father may be more suspceptible to infection if his white blood count is lower. He will probably need a lot of rest. It would be helpful for you to create a little space in the sitting room for him so all that he will need, like water, cream, reading materials, or even the tv remote is near him. Then at night, he may have to have a humidifier so he doesn't suffer from dry mouth or dry throat too much. If he has a lot of thick muscus, then having him use a waterpik on the lowest setting with some magic mouthwash and warm water and the tongue scraper attachment will go a long way in helping him have a fresh feeling in his mouth.
You really need to ensure that he gets his 48oz of water daily and at least 3000 calories. If there is access to a dietitian, then get some ideas or helpful into from this person. If you father feeds well, then he will feel a lot better going through the remaining sessions of radiation.
I don't know if I have answered your questions. If you have other questions, please do post them. There are lots of other people around here who can give you good information.
Last edited by gmcraft; 01-12-2017 02:01 PM.
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: Jan 2017 Posts: 2 Member | OP Member Joined: Jan 2017 Posts: 2 | Gloria-
Thank you so much! Your post was incredibly helpful, and I hadn't thought of the waterpik - will definitely look into that.
I agree - getting enough water and calories will be key for him, and I've already got the nutritionist on speed dial.
Thank you so much for your thoughtful response.
Christina
Caregiver to Dad (Victor, Age 68) Dx 9/27/16 SCC BOT Stage IV (T4aN2cM0) Dx 10/18/16 Stage III Colorectal Cancer Previous Smoker (quit 5/18/08, smoked for 30 years) Began Tx: 11/17/16 Receiving: Daily IMRT(35), Weekly Folfox (Leucovorin Calcium, Fluorouracil, Oxaliplatin) Rx: 7 weeks Hospitalized: 01/03/17 - Present PEG installed: 01/11/17
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF, Christina! Im so very sorry to ready about what your father is going thru!
Oral cancer is rough enough without all the other medical problems and a second cancer on top of it. Poor guy!!! I am so glad you have found us to get help with your father. We will do our best to give you info to make it easier on everyone.
Im very glad your father will not be alone. He is a very sick man and treatments (as you are seeing) are very difficult and recovery can be a long road.
With using a feeding tube it should be easier for him to meet his daily minimums of 48-64 oz of water and at least 2500 calories. If he can take more in it will only help to make this easier for your father.
Hang in there and take good care of you as well. ChristineSCC 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 | | |
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