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#192702 07-09-2016 08:06 AM
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I have been reading this forum since I found it about 2 weeks ago. It is time for me to step out of the shadows and introduce myself.

My name is Jessica. I am the caregiver to my husband, John. John is 53 and was recently diagnosed with oral cancer in his cheek, where the jaw hinges together. It is not HPV. He has never smoked or chewed tobacco and is a very light, recreational drinker. At first we thought a little surgery, a little radiation and back to life as usual. HA! After many tests, we now know that the tumor has grown into the muscle and into the bone. We were told stage 3 or 4. And no one has clarified. I should ask, but I don't want to hear the answer. Surgery is not an option at this time. From looking at the scans, they tell us it is in 1 lymph node. We have also been told that nothing shows up anywhere else in his body.

He had a port and PEG tube put in 2 days ago. He will start Chemo and radiation on Monday. He will have 3 chemo treatments (Cisplatin) on days 1, 22 and 43. And 45-50 radiation treatments.

Nutrition has been an issue for us already, as he hasn't been able to open his mouth normally for many, many weeks. I have been doing my best to prevent him from losing any more weight prior to treatment. I have made ChristineB's shake for him numerous times already. We are hoping to put off using the PEG until absolutely necessary.

Emotionally he is at a real low. At first, communication was difficult for us. We have been working on that. He is sad, scared, frustrated and more. You all know and understand. I'm trying to find ways to lift his spirits and have some "normal", but it is increasingly difficult. I am worried that his emotional state will hinder his treatments. We have 2 daughters. Both leaving for college during the treatments. One is a rising junior and the other will be a freshman. They are handling this as best they can. I have tried to be positive in the things that I tell them, but I also want them to understand that this is bad and that their dad is in a fight for his life.

I'm sorry that this is long and I know I tend to ramble on. I hope to find support here. In a safe place. Amongst people who have been there, done that.
~Jessica


Jessica
Caregiver to husband, John, 53. Non-smoker.
oral cancer, stage 3 or 4
Dx 6/22/16
Port and PEG 7/7/16
Radiation M-F beginning 7/11/16
1st Cisplatin 7/11/16
38 radiation treatments, Cisplatin x3
Completed treatment 9/2/16
PET scan 11/29/16
Tumor back or never gone
Surgery scheduled 1/17/17
Joined: Oct 2012
Posts: 1,275
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Jessica,

I am sorry you have to join this circle of friends, nevertheless, i welcome you warmly and I know everyone here will strive to help and support you.

It looks like you are already focused on nutrition which is probably the most important thing a caregiver can do for now. Do you have access to a therapist at the hospital? It may help for you and your husband to be connected to one, especially if he is feeling low. A hospital therapist will probably have experience with patients who have difficulty speaking clearly and have strategies to deal with that.

Please visit and post as often as you need. We have all been there and understand how important it is to have someone who will listen.


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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Posts: 756
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Jessica,

I want to also welcome you to OCF, and very sorry that you find a need to be here.

You've gotten some great advice already. When I was going thru RT, I received some smoothie recipes from my hospital. Basically try anything that provides nutrition, calories and "tastes" good (at some point during treatment, nothing tastes good). I also would add whey protein to my smoothies along with yogurt. Yogurt contains probiotics which helps with the dreaded other "C" that is often a side effect of medication and diet, and also helps prevent thrush, another unpleasant and potential dangerous side effect.

Did you husband have blood work done? Permanent damage to the thyroid is a common side effect of RT and it helps to have a baseline TSH test done before treatment starts. Dry mouth is another issue, and a good dental checkup before treatment is also recommended as well as the use of fluoride trays to help prevent tooth decay.

Also read the main OCF webpages - great information on there. Wishing both of you the best!


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Joined: Jun 2007
Posts: 10,507
Likes: 6
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Jessica, Im so sorry about your husband! You certainly have your hands full with his illness and your daughters leaving for school soon. Being a caregiver is not an easy job at all! I have great respect for anyone who can manage to care for a loved one when they are at their lowest and still keep a smile on their face. Make sure you take good care of yourself too! Every week, make some time to be alone or away from the house so you can catch your breath and get a different perspective. Staying super busy is another way to keep from worrying too much.

Already, you must have spent lots of time reading our site. Im very glad the milkshake recipe is helpful and your husband is able to drink it. Make a couple of those a day and he should meet at least the daily minimum of 2500 calories. As the treatments progress he may develop painful mouth sores making the milkshake hard to drink, just thin it down with more milk or half and half.

Im sure you must have seen many of my posts stressing the importance of intake. Not only are calories important, so is daily water consumption and managing pain levels. Since your husband has a feeding tube, I suggest practicing with it to make sure you both are very familiar with using it. This way it wont be such a big deal if the time comes he needs to do tube feedings. Even if not using it, at least 2x a day flush the tube with a large syringe (should be 60ml). If you can slowly flush the tube morning and evening with 2 syringes full of luke warm water then you have just added 8oz of water to your husbands daily intake. Another benefit of the feeding tube is many medications are available in liquid form. These can go right thru the tube (just flush it good after using) which is a huge help to patients who have a sore throat or mouth.

Depression is prevalent with OC patients (caregivers too). At the treatment facility, ask if they have someone who specializes in speaking with their cancer patients and their families. Some medications for depression take weeks to begin working. Make sure you ask about this if you notice your husband really needs help right away. There are other meds that are for a more occasional use, maybe that would help him? One thing that always seems to help patients is giving them a purpose. Everyone needs a reason to get up in the morning. Do you have a dog? If so, maybe your husband could start taking the dog on daily walks? The exercise and fresh air should help make him feel a little better. How about a hobby? Now is a great time to start one. It would give him something positive to focus on. Reading is always something that held my attention. Anything that helps to keep his mind occupied with other positive things besides sitting around thinking.... [i][/i]what if???? Everyone is afraid of the unknown so Im sure he must be under incredible stress. Maybe by joining our site or meeting other OC patients/survivors would help him to not feel so alone. If he would like to speak to someone who has been down a very similar path, Im available. Over the years, Ive talked with hundreds of OC patients and caregivers. Just let me know if this is something that would help and I will send you my number.

Since treatments begin very soon, make sure you make a list of anyone who offers their assistance. Having a close friend pick up a day of driving your husband to rads could be a huge help to you and a nice change of pace for your husband. There are all kinds of things others can do to help out to make this easier on everyone involved. Picking up medications from the pharmacy, visiting your husband, doing a load of laundry, mowing your lawn, or doing other outside chores all can be very helpful when you have so much going on caring for your patient. Dont be afraid to ask people for help. Most really want to help out but they dont know what they can do.

Stop back often and keep reading. Post questions and updates as much as you like. We are here to help both you and your husband get thru this and the recovery phase too.

Best wishes!!!!!


PS... Great job with your signature. Thank you!!! 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
Joined: Jul 2016
Posts: 3
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Thank you for the responses. I feel fortunate to have found this group. We tried to have a "normal" weekend (whatever that is). John got started with chemo and radiation yesterday. He is napping comfortably as I type. I am trying to take advantage of the advice you all have given. I have made a list of people offering help. We live in the south and, unfortunately for us, people immediately want to bring food when someone is sick (or well, or sad, or happy... food is always the answer) It's a kind gesture, so instead I'm asking them to maybe invite our girls over for dinner. It gets them out of the house and keeps food smells down as John is feeling a tad squishy.

Christine, thank you for the offer to speak with him. I think he's feeling more positive now that treatments have started. I will add your offer to my list of people offering assistance. He may want to speak with you on down the road a bit.

Again, I am lucky to have found this group. I appreciate being welcomed so warmly. I have never been so thankful for a group of people I've never met.


Jessica
Caregiver to husband, John, 53. Non-smoker.
oral cancer, stage 3 or 4
Dx 6/22/16
Port and PEG 7/7/16
Radiation M-F beginning 7/11/16
1st Cisplatin 7/11/16
38 radiation treatments, Cisplatin x3
Completed treatment 9/2/16
PET scan 11/29/16
Tumor back or never gone
Surgery scheduled 1/17/17
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Dear Jessica,

It sounds like you have the present situation well in hand. I like the idea of getting the neighbors to invite your girls over for dinner. It will be a diversion for them and a break from the smell of food for your husband.

Now that radiation has started, do make sure you check the skin on his neck regularly for signs of skin breakdown, especially in the folds. Do you have scent-free cream/lotion ready? You might want to bring it with you to the treatments and have him put cream on his neck as soon as he comes out of treatment -- but, NEVER before treatment as it will intensify the effects of radiation on the skin. Think of an egg frying in cooking oil.

Take it a day at a time and you will get him through treatment.


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 2016
Posts: 3
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Posts: 3
Thank you, Gloria. Is there a particular cream or lotion that is better than another? Also, I was just searching the forum about radiation side effects. How quickly should we expect to see/feel any sores or burns?


Jessica
Caregiver to husband, John, 53. Non-smoker.
oral cancer, stage 3 or 4
Dx 6/22/16
Port and PEG 7/7/16
Radiation M-F beginning 7/11/16
1st Cisplatin 7/11/16
38 radiation treatments, Cisplatin x3
Completed treatment 9/2/16
PET scan 11/29/16
Tumor back or never gone
Surgery scheduled 1/17/17
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
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Jessica,

John's doctors recommended Lubriderm. Another cream which we liked was Glaxal Base. You should expect some redness during the first week. By the second or third week you might see broken skin. We were told to be conscientious about saline soaks -- putting regular medical saline on a clean J cloth on the sore and cover it with a clean towel. Leave the saline on for 10, 15 minutes and then let it air dry and then put cream on. Do this three or four times a day. The saline is pretty good with drying up the sores. ChristineB also recommends an antiseptic cream, but I have never used it, so I'll leave it up to her to tell you about it. Remember to pat the cream on, and don't rub it in. If the sores are really bad, you may want to cover them with a non-stick dressing in between saline soaks.



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: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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I love your idea about having your daughters go to friends homes to have dinner. That is a great idea! But... what about you? Maybe they can bring you home a plate? I know you have alot on your shoulders. Try your best to take some time for just you at least once a week.

Jessica, your question is one thats not easy to answer. There are so many variables when trying to guess which and how intense the side effects will be. Everyone has a different body chemistry and experiences this slightly differently. One thing that plays a huge part in how a patient responds to their treatments with minimal side effects is their intake. Ive noticed the patients who do the best with their intake have less severe side effects. Only a few unlucky patients will notice side effects from the first week or so. For most patients its week 3 or 4 when the going gets tough. The last week is definitely the hardest and the first 2-3 weeks after finishing are pretty rough as the radiation continues working even after finishing treatments. The recovery phase is usually starts about 3 weeks post rads and for most its a slow go with ups and downs.

My estimate is 10-15% of patients going thru rads while paying close attention to getting 2500+ calories and 48-64 oz of water every single day will sail right thru with barely a sore throat and slight sunburned neck. Next are the 10-15% of patients who suffer the greatest as a direct result of not paying enough attention to their intake. The largest group is what most of us went thru at 70-80% of OC patients. They develop painful mouth sores and their "sunburned" neck turns into open weeping sores. The last group doesnt always get enough nutrition and hydration causing significant weight loss which also causes them to feel pretty lousy.

Another major factor is if chemo is given, how often and what type. The patients who get chemo one dose every three weeks have a harder time than those who get the smaller weekly doses. Cisplatin can cause permanent high frequency hearing loss so its vitally important to pay close attention to any changes in hearing and report it immediately to the doctors so chemo can be changed before another dose is given.

For the sunburned neck pat your choice of cream or lotion onto the reddened area. Never put it on prior to going for the rads treatment. Its ok to pat some on immediately afterwards. My son drove me to almost every treatment, I patted the beta val ointment on as we drove back home. I would apply it 3 or 4 times a day. When my neck was at its worst with oozing open sores, I still would very gently pat the ointment onto my neck. I also placed non stick gauze pads on top of the ointment. My neck was in really bad shape but somehow I dont see any scars.

In case I havent already gave you intake info. The daily bare minimum is 2500 calories and 48-64 oz of water. If you can get your husband to manage a few more calories it can only help make this easier.

Hope this helps you and your husband.



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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