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#22770 04-06-2007 03:02 PM
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Sue K. Offline OP
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Hello,

I have been reading this forum for about 2 months. I am neither a cancer patient nor a direct caregiver. I am a "caregiver's caregiver". My sister's husband was diagnosed with Stage IV squamous cell carcinoma of buccal mucosa. Though my sister is his caregiver, I consider myself her caregiver.

I am trying to gather information and resources that may be heplful to them during the difficult times ahead. By far this forum has been the most helpful.

My brother-in-law is an otherwise healthy 39 year old with two children, ages 9 and 5. This diagnosis was a complete shock, not only because the buccal mucosa location is extremely rare, but even more so for him because had never chewed tobacco. He is also HPV negative.

They live near Milwaukee and I am in Northern Illinois, so we are 1 hour apart. He is being treated at Froedert Cancer Center in Wisconsin. He started radiation last week and just had his first chemo this week. He is incredibly, horribly nauseous and fatigued from the cisplatin, and I am very worried about both him and my sister. That is what prompted me to finally post. He can barely lift his head up to drink. He had to go back to the hospital for hydration because of the concern for kidney damage. He does not have a PEG tube at this time.

My husband says I need a 2nd brain to help hold all the information I am gathering. That is how I am dealing with this, because I do believe KNOWLEDGE IS POWER. My sister is not a fan of computers so I am checking this forum for her and passing on what may be helpful. I hope my brother-in-law will feel well enough to visit this site soon.

My questions-

So what's the deal with cancer of the buccal mucosa? I hardly see that Dx here!

Cisplatin-how do you get through it?

IMRT-waiting for the side effects to hit soon-any suggestions?

This was lengthy but I want to fully explain the situation. This absolutely sucks and I just want their life to get back to normal! I love them so much-God Please Help Him!


Sister-in-law of 39 yr. old DX 2/07 STAGE IV BUCCAL MUCOSA(CHEEK)-invasive, moderately differentiated, IMRT x37 start 3/29/07, cisplatin x3 start 4/2/07.

As Bon Jovi's lyrics say..."Take my hand, we'll make it I swear, livin' on a prayer"
#22771 04-06-2007 05:35 PM
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Sue

I am sorry to hear about your bro in law..Unfortuantley I cant answer alot of your questions...Mine was on the tongue and I didnt have Rad or chemo..I can tell you Knowledge is power ....Good for you !!!!!! And I am sure someone on here can answer your questions , you have come to the right place.....We are here to listen !! At least I am ..sorry I couldnt answer more for you

Shar


Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
#22772 04-06-2007 06:25 PM
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Everyone is different in how they react....
This is what worked for Mike.

Cisplatin followed by 5 days of a pump drip 5FU.
ONE WORD- EMEND. 3 Little pills 1x a day for three days, Kept the nausea away.

Radiation....oh, what can you say about that and not talk about a peg tube. Hand in hand these 2 go. With a Peg, although used infrequently, keeps the body healthy enough to take the next day of radiation with no interupption. It sucks, radiation gets done, you get better quickly and the peg comes out.

Radiation and no PEG, you have the challange of your lifetime! Just to stay alive.
Yet, you'll still get beat down to being hospitalized and your treatment delayed. Treatment delays are not good.

Thats all for now, one stage at a time... just rembember that if the foundation that is built NOW is strong (the body's nutritional and hydrating is steady) radiation treatment as well s oncology will be optimal to beat down the cancer, and not the rest of you.


Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
#22773 04-07-2007 01:13 AM
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My husband had just radiation, not chemo, and he made it through without a PEG tube. He stables of eating were eggs, various types of beans, blueberry pancakes. Also was able to eat some types of fish


Barbara S
C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
#22774 04-07-2007 03:05 AM
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Sue,

My sister also became extremely ill from the cisplatin. Threw up 14 times the first week and 13 the next week. She was taking compazine (3x's/day), decadron (2x's/day), zofran (2x/day) and ativan (3x/day). Finally her oncologist reduced her cisplatin to 50 mg(not sure if that is how it is measured) from 60 mg...a 20% reduction and it made all the difference in the world with the nausea from chemo. She also hydrated with 2 bags of saline, 2 days after each treatment....cisplatin is hard on the kidneys, so hydration is important, whether vomiting or not. She had the PEG before she started treatment, so was getting nutrition, it would probably be better/easier for your brother-in-law if he had one. Not sure what buccal mucosa is, so can't help you there. My best to you, your sister and brother-in-law, and just take it a day at a time.

Nancy


Caregiver to sister Connie, dx 2005, scc tongue, 4 surgeries inc. radical left side neck dissection 7/06, 35 IMRT, and 7 cisplatin 2/07, passed away 8-11-07, 51 yrs. young, fought with courage, strength and grace, found peace on her new journey.
#22775 04-07-2007 06:28 AM
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Hi Sue, I also had cysplatin. I had a 2 hour titration, cysplatin, then 2 hour flush. They gave me 125mg Emend, Dexamethasone, and Kytril that day 30 minutes before the cysplatin. That was followed by 2 days of 80 mg Emend 1x daily, 3 days of Kytril 2x daily, and 5 days of the dexamethasone 2x daily. I think that was 2x daily on the dexamethasone if not it was 1x daily. More than likely he is getting the same thing or something very similar. They had me prescribed another anti-nausea med to take basically as needed but before I needed it and it was promethasine or promethazone. It is generic for Phinegrin?. That did not work for me at all. When I finally tried it I found that it didn't work so my MO put me on Zofran 8mg 1x daily. It worked great. I nearly got in trouble losing weight because I didn't have a peg tube and I went through 2 weeks of trying to find something I could eat enough of as well as something that didn't make me sick. I finally got the Zofran and started drinking all my meals. Carnation Instant breakfast mixed with whole milk (150 cal.), Ensure Plus(350 cal.), and finally found the Carnation Instant Breakfast Lactose Free VHC (560 cal.). I played around with these three until I found an amount I could handle 3x a day. When I finally got my weight stabilized I was drinking two 8oz Ensure Plus 3x a day. This equals 2100 cal which is barely enough and can be difficult when you drink water all day long as well. But it was the easiest until I found the 560 cal CIB VHC. Now I drink 1 8oz Ensure Plus mixed with 1 8 oz CIB VHC 3x a day. This totals 2710 cal. This is really helping me keep my weight where it needs to be. It took alot of time to figure this out and like others have said, sometimes the side effects will not give us the time to play with the weight loss issue so if it is still an option and he is really having alot of trouble, he may want to consider the peg tube. At this point the sooner the better for two reasons. 1. his immune system will continue to weaken raising the risk of infection with the surgery, and 2. I cannot stress how important it is to stay hydrated and fed. I am 2 weeks post tx and made it without but there were a few times I wish I had the peg because I was just to tired to force down these drinks. Nausea is worse on an empty stomach also. It is great that you are helping your sister and b-i-l. It takes a team effort to fight this disease and i'm sure they are greatful. Tell your sis I wasn't much on computers either until I found all of the helpful support and the may well come a time when they too need our support. Tell them we are here if they would like to try the computer thing out. :-) Lee


Lee, age 33, stage 4a, T2N2bM0, Tumor left tonsil (removed), 2 left side nodes removed (poorly differientiatied)total of 3 nodes involved. Treatment IMRT x33/ 2x Cysplatin completed. Good Health and Good Help to you.
Lee
#22776 04-07-2007 11:50 AM
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Dear Sue, you probably have NO idea how great your being the "caregiver to the caregiver" really is. Fighting through this can be a very isolating experience emotionally because generally there are very few people who have a clue about what the patient[and the caregiver] is dealing with. It would be great for your sister to get on this site, but you are the next best thing. Chances are the rad. txs will be hard for both of them. [I am in the "pro peg" group, by the way, as was our Surgeon, who did not give John a choice about one-he put it in during John's initial surgery]. At any rate, the challanges going forward for your BIL and your sister will be that of maintaining adequate nutrition and hydration and if you have been reading for 2 months, you already know that it's not going to be easy. I suspect that another challange for your sister will be how to deal with the physical drain on him during rad.- it will scare her alot. But it comes with the territory and he can recover from it- given time.
Keep reading and asking questions. There is a wealth of good information here to help people through this. And good for you for being there for them! Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#22777 04-07-2007 04:42 PM
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Sue K. Offline OP
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You are all amazing! Thank you all so much for your kind words and advice. I talked to my sis today and told her about my post and the responses I have received. She was amazed and touched beyond belief. It is a tough weekend for them-going to the hospital for hydration while their kids are spending Easter with their grandparents. God bless all of you who have experienced the struggles related to oral cancer and are inspiring others through their fight. You are all heroes! As soon as her hubby feels up to it she will encourage him to visit this forum. I'm still working on getting her near a computer to visit also! smile

I decided to drive up to Milwaukee Monday and meet them at the hospital (uh-oh, better take my Bears sticker off my bumper!). My sis is overwhelmed and her hubby is too sick to even think right now. I will get info. and ask questions about his meds & peg tube issue based on the helpful advice you have all provided. Thank you from the bottom of my heart!

Take care,
Sue

Another Bon Jovi lyric: "I'll be there for you, these 5 words I swear to you..."


Sister-in-law of 39 yr. old DX 2/07 STAGE IV BUCCAL MUCOSA(CHEEK)-invasive, moderately differentiated, IMRT x37 start 3/29/07, cisplatin x3 start 4/2/07.

As Bon Jovi's lyrics say..."Take my hand, we'll make it I swear, livin' on a prayer"
#22778 04-07-2007 04:58 PM
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Hi Sue, I went through a very high dosage of cisplatin and IMRT because i have a rare form of cancer. The cisplatin gave me terrible nausea and i was throwing up to ten times a day. I had terrible mucositis from the IMRT which added to the nausea. The dr. prescribed a suction machine, zofran, daily hydrations along with ativan. When nothing worked my husband took my weak body for accupuncture which, in combination with all me meds helped a great deal. I also have a peg tube which helped me keep nutrients when i couldn't eat. The peg tube never settle right with my digestive system but helped tremendously when i was too weak too eat, as my family was just plugging it in with a can of twocal. I am now three weeks out of treatment. i made it through and so will your brother in law. Keep supporting your sister, she needs it right now. GOD BLESS.

Liz


diagnosed 12/20/2006 with undifferentiated large cell salivary gland cancer
#22779 04-07-2007 05:12 PM
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I am in the middle of radiation and chemo and I thank God every day for my PEG Tube. Do yourself a BIG FAVOR and get the PEG Tube!!!!

#22780 04-07-2007 11:03 PM
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I would like to ditto the above.Robin had a peg tube fitted on day 15 of his rad treatment and i really thought he would die up till then .Now although he is not putting any weight on ,his weight has sort of stabilised and when he is in one of his cant drink days i just push extra water through the peg tube.It has saved his life.!!!


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#22781 04-22-2007 03:53 PM
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Sue K. Offline OP
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Thank you all for your advice. I met my sis and bro-in-law at the hospital and gave them copies of all your replies. He had a 17 lb. weight loss in 1 week (and was trim to begin with). The Dr. recommended the feeding tube and he decided to get it. It has been a godsend!

Bless you all,
Sue


Sister-in-law of 39 yr. old DX 2/07 STAGE IV BUCCAL MUCOSA(CHEEK)-invasive, moderately differentiated, IMRT x37 start 3/29/07, cisplatin x3 start 4/2/07.

As Bon Jovi's lyrics say..."Take my hand, we'll make it I swear, livin' on a prayer"
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