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New to the group - Tonsil cancer #199464
11-17-2019 09:48 PM
11-17-2019 09:48 PM
Joined: Nov 2019
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SueBee65 Offline OP
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SueBee65  Offline OP
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Joined: Nov 2019
Posts: 6
I am new to this forum. My husband was recently diagnosed with tonsil cancer. He had a tonsillectomy and narrow margins. PET scan was clear. He is about to start his 10th radiation treatment (10 of 35) and has 2 more rounds of cisplatin. It is all very scary. I am hoping to learn from the experiences of others in this group. He is starting to have soreness in his throat and the nausea has been challenging. Any words of wisdom or guidance would be so appreciated.

Re: New to the group - Tonsil cancer [Re: SueBee65] #199465
11-18-2019 08:10 AM
11-18-2019 08:10 AM
Joined: Jun 2007
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ChristineB Offline
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ChristineB  Offline
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Welcome to OCF, SueBee! Im . very sorry to read about what you and your husband are currently going thru together. Its NOT easy but you have found the very best place to help you both get thru this.

After about the first 2 weeks of rads is when many patients first begin to notice the rad and chemo side effects. Hold on!!! This is the beginning of what can be a long, difficult road for you both. Its vitally important for you to notify any and all changes to your husbands medical team ASAP. The chemo (probably cisplatin) can cause hearing and kidney issues in some patients... permanent ones!!! During chemo infusion, the nurses should give extra hydration to your husband. Its very important to have your husband drink 48-64 oz of water every single day... push for extra on chemo days and if possible the day before and after as well. It helps to flush the chemo out of his system. Theres other chemos to change to if even a minor tingling sensation happens in his ears so speak up.... its vitally important!!!

Intake is one of the most important tools to get your husband thru this as easily as possible. If he hasnt already begun to do so, start counting calories he takes in on a daily basis, daily water intake too. Every single day he needs at least 2500 calories and the water I mentioned previously. This may be a bit of a challenge as the side effects begin to appear making it difficult to swallow and eat. With rads being progressive, the further into treatments your husband progresses, the worse he will feel. It get more and more difficult making many patients take in less and less as rads continues which only helps to debilitate the patient by them getting weaker and weaker. Its shocking how skimping one day can very quickly turn into a game of playing catch up except its impossible to catch up in time to avoid hospitalization for malnutrition/dehydration which makes a patient feel worse than they ever have in their lives. I know this all too well as I went thru this myself and had a few of these horrible days where I thought I was in the beginning stages of dying. It can be avoided by making the ,minimum levels every single day no matter what. It really can be accomplished but a caregiver must push their patient even when the patient resists.

Nausea once it gets away from you is also a very difficult part of this to overcome. Taking anti-nausea meds around the clock when it hits to get ahead of the nausea isnt easy! if it becomes an impossibility to keep anything down, you should have on hand a prescription for anti-nausea suppositories for the worst nausea. Thats what may be necessary for a few doses to get him back on track taking regular anti-nausea meds to control his nausea. Once a patient begins throwing up, it makes intake so much more difficult, practically impossible. Everything thats thrown up MUST be replaced on top of the 2500 calories and 48-64 oz of water every single day. That vicious cycle of playing catch up and feeling so bad are a quick pass to a few overnights spent in the hospital which nobody here enjoys. Just make certain your husband takes the anti nausea meds every 4 hours or ask the doc if it can be done every 3.5 hours so he can stay ahead of the nausea. Ideally ask the doc about if your husband could take 2 different anti-nausea meds so every other dose he is taking the same medicine. Same thing if he is taking pain meds. By 2 different meds, the patient wont have such a problem by taking too much of one medicine... at least its an idea that the doc can help decide if that fits this situation. Remember no matter how lousy he feels he MUST hit those daily minimums... definitely NOT easy!!!

As a caregiver, all this can become overwhelming. Caregivers are all stars who are what make patients succeed when instead all they want to do is quit. Thats ALOT of responsibility on top of your already hectic lifestyle. We all have been thru it and understand how each person suffers weather tis the patient or the caregiver. Together its team work and you both will get thru it together, often making couples even closer. Do yourself a huge favor and take breaks once in awhile to take care of just you. Go out to lunch with friends, get a mani/pedi, shop for something you have wanted for yourself, make uninterrupted phone calls, get a massage, take a long walk or go to the gym are all things to help you take a step away for an hour or two to help you catch your breath. Its no shame if you (or your husband) need help to manage the overwhelming feelings the cancer has caused. Many patients and their caregivers speak to a therapist and/or take anxiety meds on a temporary basis. Its just another tool to help you both get thru some of the hardest days of your lives. Its ok to vent here, we all understand and are right there with you rooting you both on. We get you!!!

Best wishes with everything!!! We're here to lean on so please feel free to ask questions and talk things over as they come up. We're in your corner so ask away smile


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
Re: New to the group - Tonsil cancer [Re: ChristineB] #199522
11-26-2019 04:44 PM
11-26-2019 04:44 PM
Joined: Nov 2019
Posts: 6
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SueBee65 Offline OP
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SueBee65  Offline OP
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Joined: Nov 2019
Posts: 6
Thank you so much! The first high dose of cisplatin has increased his creatinine levels. We are pushing fluids. How long can this take to return to normal?

Re: New to the group - Tonsil cancer [Re: SueBee65] #199523
11-27-2019 07:40 AM
11-27-2019 07:40 AM
Joined: Oct 2012
Posts: 1,221
Toronto, Canada
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gmcraft Online
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Joined: Oct 2012
Posts: 1,221
Toronto, Canada
My husband consistently had low creatinine during his treatment. It would go back up somewhat before the next dose though it did not go back up to what is normal.


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.
Re: New to the group - Tonsil cancer [Re: gmcraft] #199526
11-27-2019 01:50 PM
11-27-2019 01:50 PM
Joined: Jun 2007
Posts: 10,495
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ChristineB Offline
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ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,495
PA
My blood count numbers were all over the place for several years after I had chemo and rads. I also lost a tremendous amount of weight making me feel like I was always just drained of strength. Every week I had my blood counts run and each week the numbers were different for the 8 months of visiting nurses coming 3x a week. Im pretty sure it was about 3.5 years after I first began rads until I was able to have consistently level blood counts.

Its a very good thing having the doctors checking the blood counts. Resistance runs low when they're off so its very important to avoid crowds (Black Friday shopping malls, movies, etc), frequently wash hands, avoid people who are visibly sick like coughing, blowing their nose and can be whats causing tiredness in some patients. If exposed to things that are contagious, someone who has their blood counts all way off tend to pick things up quicker than someone who is strong and in good health. Back when my numbers were way off, I began carrying hand sanitizer with me everywhere I went to be certain I was protecting myself as much as possible.


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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