#23505 06-18-2007 10:34 PM | Joined: Jun 2007 Posts: 7 Member | OP Member Joined: Jun 2007 Posts: 7 | Hi everyone
My husband has been diagnosed with cancer of the soft palate - one minute he had sore throat (2nd May,) and today he is having PEG tube fitted prior to start of radiotherapy and chemo next wednesday.
My question is, how do I cope, how can I help him, what do I say and what are the future months to bring?
I am so frightened - can anyone help us? | | |
#23506 06-19-2007 01:25 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Zoe,
You can start by calming down and educating yourself and your husband as much as possible. Knowledge will be one of your most valuable weapons in the months to come and coming to this site is the best thing you could have done and you will quickly learn why.
Help us by telling us more about his type of cancer; what chemo he will receive and it's frequency; and what type and frequency of rad. The more information you share with us the better and once we have a better picture we can respond appropriately.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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#23507 06-19-2007 06:05 AM | Joined: Mar 2007 Posts: 525 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2007 Posts: 525 | Welcome Zoe
We are sorry to hear your husband
DX 3-21-07 L tongue,SCC Stage IV (T3N2MO) TX Slash/Burn/Poison Method. ***Rapid Aggressive Recurrence 8-4-07 with same DX/TX. Life does not cease to be funny when people die any more than it ceases to be serious when people laugh. Never Give Up! ****UPDATE**** Our dear friend Petey passed away, RIP 9-2-07
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#23508 06-19-2007 07:52 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Hi Zoe,
My husband was diagnosed mid May and radiation and chemo started yesterday. This forum (the information and the people) has been a blessing for me.
What I found is that my husband was so in shock over the diagnosis, he was of no use during the many, many pre-treatment oncology consultations. He was present, but wasn't really in the moment.
And, we had some anger issues to deal with in that he was mad at the cancer and the situation...and, sometimes at me. Fortunately, that part has gotten better, but from the docs and this forum, I understand that the medications, pain and frustration may impact his mood and I feel braced for that.
I made it through the first hurdle, which was getting him into treatment. I feel ready to help him through the rest of the hurdles because I am a faithful reader of this site. Although, like you, I was scared and unsure of my abilities in the beginning.
The information on here is overwhelming and sometimes scary, but it is informative. Try not to get lost in the scary stuff.
This is one hell of a cancer, focus on learning what you need to help your husband through this. Vent or share your fears here, because this is the place to do it.
When you are meeting with doctors' take notes...lots of them. Ask questions when you are confused. And, come here whenever things don't make sense.
There are some pretty smart people here and so much willingness among people to help each other out.
Through people here, I got a much better understanding of what to expect during the 7 weeks of treatment and beyond. Our doctors, to some extent, have sugar coated much of the information and I just wanted to know the best and worst of the treatment process so that I am well equipped to help my husband through this.
My husband had no symptoms other than a swollen lymph node. So, like your situation, the "C" word came as a shocker.
There was a point in time, I wondered if I could manage him, my kids and my business. But, I have broken it down into smaller segments...day by day.
Please keep us updated on how you and your husband are doing.
We'll keep you in our prayers,
Margaret Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#23509 06-19-2007 08:02 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 | Hi Zoe
What Margaret said "When you are meeting with doctors' take notes...lots of them. Ask questions when you are confused."
We took a small tape recorder in with us so we could record what we were being told by both the doctors and the nurses. They tend to throw a lot of stuff at you and it was VERY helpful to be able to go back and review.
Don't be afraid of the PEG, it turned out to be one of the best things I did.
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
#23510 06-19-2007 08:17 AM | Joined: May 2007 Posts: 622 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 | One more article that you may want to see about the feeding tube http://www.headneckmd.com/pages/Gastrostomy.html 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
#23511 06-19-2007 08:29 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Zoe Here in the Uk one of the best places for help and information is Cancerbackup. The web site is good but the free help line is a godsend. 0808 800 1234. 9am to 8pm Hope this helps. But the main thing is one step at a time, and if you don't understand anything, please ask again till it all makes sense. Please remember this forum is always here for you Sunshine love and hugs.. Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#23512 06-19-2007 09:56 AM | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Hi zoe
glad you found your way here and believe me this site is the best site there is on either side of the atlantic,so settle in and drain the many brains of all the information you need to help you on your journey which will be long and rocky
liz
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.
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#23513 06-19-2007 10:13 AM | Joined: Jun 2007 Posts: 7 Member | OP Member Joined: Jun 2007 Posts: 7 | Thanks everyone - picked hubby up at about six this evening - he is in agony, spasms he thinks is this normal??? | | |
#23514 06-19-2007 10:21 AM | Joined: Jun 2007 Posts: 7 Member | OP Member Joined: Jun 2007 Posts: 7 | Oh and by the way - don't know what stage but he will start 6 weeks radiotherapy with 1 day a week chemo and radiotherapy (not sure what type either) and will get weekends off (wow wee!) | | |
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