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lam007 #143531 12-02-2011 07:20 AM
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Administrator, Director of Patient Support Services
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Welcome to OCF. Glad you have found this site to help get you thru your husbands treatments.

Prior to starting rads, its a good idea to get a full blood count. This way you will know what your husbands normal numbers are to compare it to later. Get dental trays made for flouride trays. Get a hearing test done. Cisplatin is known for causing high frequency hearing loss in many of our members. Most important is to try to get your husband to gain a few pounds. Eating will become a challenge for him, its only temporary. Even with a feeding tube significant weight loss can happen. There are many high calorie foods he can enjoy prior to the start of radiation. Cheesecake, milkshakes and puddings are all high calorie easy to eat foods that can help him to gain a few pounds.


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: Aug 2007
Posts: 1,301
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Hi again Laura,
Thank you for adding the signature. You are already getting great advice both here and on your more recent thread.
I know your area well but I am not sure if Gosford Hospital is a Comprehensive Cancer Centre facility. While reading here you will often see the necessity to have a multidisciplinary team and be treated at a CCC. I am sending you a PM (Personal Message) with a link that goes in to more detail. It is actually from the Northern Sydney and Central Coast Health Service. I went to Westmead which also is a CCC hospital.
I see so many similarities between you and Karen , another OCF member/carer (and friend) with experience at the RNS. She is also an ex nurse and will be able to help not only with all the technical stuff but also with the local knowledge that is also be very important. I will contact her and let her know you have joined and I know she will post when she can.
I will also PM you her link as you may want to do some reading in the meantime.
Best wishes to you and your husband.
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

lam007 #143542 12-02-2011 02:19 PM
Joined: Aug 2007
Posts: 1,301
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[quote=lam007] He is healing from fairly extensive dental work so for now we wait for treatment to begin in earnest. [/quote]
I just read your signature again and went back to your first post. Just a question but how long do they expect the healing to take and are you familiar with HBO (Hyperbaric oxygen therapy) which aids the healing process?


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #143548 12-02-2011 07:09 PM
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Hi Laura

As a paed nurse, you will have an advantage in understanding the significance of what you are told by doctors. In my opinion adult nursing is just taking care of bigger kids smile. The big difference between them is that kids often can't articulate what they are feeling and adults can't articulate what they are feeling either but think they can.

A classic example: Alex tells the doctor that he feels pain and burning here (centre point just under his rib cage), doctor enquires no further and recommends Mylanta which didn't help Alex at all. Alex was trying to describe nausea not reflux and did not get around to telling the doctor that burning usually resulted in vomiting which was the key point.

The other thing that adults do is self diagnose, so they unconciously filter the information they give healthcare professionals sometimes resulting in wrong diagnosis and treatment.

Our example: Alex decided he had a decaying tooth so went to the dentist and told him that he had a sore tooth and wondered if there was an abcess. Dentist pulled the tooth but mentioned that he thought there was more going on and referred to ENT. Alex failed to mention that he had a sore throat and was struggling to swallow. Result? A regular referral rather than an urgent appointment and a delay of over 2 months.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
lam007 #143551 12-02-2011 09:12 PM
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Been here - me too! Good luck... And the multi is probably okay just show it to your rads person! Take care!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #143561 12-03-2011 03:16 AM
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They are giving his mouth two weeks to heal and for the swelling to go down before making his mask. He saw the dentist yesterday and things are healing as expected, no delays so I assume no need for hyperbaric. The dentist did think there is swelling along the jawline that wasn't there before and isn't a result of the extractions.

His rad onc has been pushing things along, including getting prompt appointments with the medical oncologist of his preference, rather than first available. He has also been liaising with the dentist from the start. I get the impression that the team isn't going to delay treatment until after the holidays. Or at least that is my hope.

Trying really hard to get him to pack on the pounds and his effort is commendable. I am looking at Paula Deane recipes..........just reading them makes my arteries feel all clogged up. High protein things, too. Protein and sheer calories.

Karen, I've never done adult nursing and have no desire to start. Adults are big, stinky and gross.


CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.
lam007 #143566 12-03-2011 06:49 AM
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Glad to hear things are moving for you - I'm an advocate of expedience - some drs will say - don't worry cancer can't and won't move that quickly - but everyone is different, every cancer - though they tend to follow similar patterns - reacts to the individual differently. so no dr. Can tell you that for certain and if they do - then I would seriously question it. It sucks that Christmas won't be great - but hopefully because of the speed they are moving - he'll have many more to come. Hugs!!! (and yes you're right - I used to work as a nurse... Adults are stinky and gross... smile loved L&D and surge, and pediatrics! )


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Cheryld #143579 12-03-2011 02:59 PM
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+-head and neck cancer currently being treated with weekly chemo pain getting worse in left jaw advise

TedC #143581 12-03-2011 05:27 PM
Joined: Dec 2003
Posts: 528
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Hi Laura,

I am sorry that you and your husband are beginning this journey, especially with a young family and at this time of year - being the vacation season in Australia. I was diagnosed with stage 4 tonsil SCC in late December 2002 when many consultants were closing for holidays. I want to offer you encouragement because I completed my treatment in May 2003 and have been cancer free ever since. I had surgery and radiation. There is no doubt the radiation saved my life.
I would suggest that your husband has a thyroid function test before he begins rad, I was found to be severely hypothyroidic after treatment but whether I was prior is not known so I may have begun treatment under par.

Like Gabriele, I am a little concerned about being treated at Gosford hospital only, I was treated at the Westmead head and neck cancer unit where all the dentists and doctors are oral cancer specialists. I believe the Newcastle Uni hospital is excellent.

I wish your family well and am so pleased you have found this site, wonderful members here will support you through your journey.

Helen


RHTonsil SCC Stage IV tx completed May 03
aussieh #143590 12-03-2011 10:04 PM
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Hello, Laura.
I'm sorry you have to be here, but you are in the best place for your given situation. Plain and simple...it stinks and there's no way around it if you want a cure. It seems like you and your husband are in good hands, with a good plan. Caring for family members is taxing. Please be sure to take time for yourself. When others offer to help, take every bit you can get! Often, those who are willing/able to help need to be given specific tasks...pic up/deliver groceries/scripts, rides for appointments and for children's activities.

When I was sick, a friend of mine directed me to a website that can help manage your own community of "helping hands". Basically, those who want to help sign up for specific tasks that you post on a calendar. A friend of mine was kind enough to manage it for me, as I was too ill and my husband was busy working and taking care of me and my 2-year-old. If you'd like the specific website that we used, I can send it to you in a private message. If you do not care for yourself, then you won't be much good to your husband. No matter how good your relationship may be, this is probably one of the most stressful trials a couple and family can endure. It can be done...has been done...hopefully never having to be done again!

Best of luck in this journey. I will keep you in my thoughts. Here's to beating this thing and putting in its place!

:)Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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