| | 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 | My thoughts are with both of you and I pray everything works out as best as possible.
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.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Update.
Dot came home from the hospital on Saturday morning soon after I spoke to her. I tried to see her in the hospital and now at home and am not surprised that she wants no visitors. She is a very private person and I respect her wishes. She basically has been sleeping since she is home (and not eating anything) and although she promised me that she planned on fighting hard, her husband feels that she is giving up already.
Right after she told me that she wasn't quitting her job and was going to try to fight, she then said that she wanted only me (from our office) to come to the funeral. She immediately gave the phone to her daughter and I had no chance to respond. I was completely blown away by this and can't even imagine what's going through her mind. Her actions show that she has lost hope and that statement about her funeral proves it. I feel very helpless.
Tomorrow morning she will start radiation and then after the biopsy results come in, they will determine what else in the way of chemo they will try.
Realistically, her prognosis is very poor and I think that she knows this. Tomorrow is another day!!!!
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I can't imagine what my response would be to getting such dire news all of a sudden! I'm sure she's stunned, so anything she says now hopefully will change with a little time.
I certainly am sorry that anybody has to go through something like that, and I know that you are in a difficult position also, trying to give compassion and not being able to reach her. She'll have to make her own decisions about that, of course.
All you can do is to be "there" and to keep reminding her in small ways that you care. Perhaps you can direct your attention to her husband instead. He must be really going through a difficult time too.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | so sorry to hear this - but each one handles things and processes things differently and some can bounce back surprisingly after a down time, so too soon to know yet what her outcome will be mentally or physically. all you can do is offer your support and let the family know you are there if and when she wants / needs you or if they do as well... and hang in there... i am sure it is tough observing from the position you are in, after working with her so closely for all of these years. my prayers will be with everyone concerned and esp her.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | 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 | That's tragic. I so hope that it's not as bleak as it sounds.
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.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | My thoughts and prayers are with Dot. I've known too many afflicted with cancer...and it seems to be ever increasing as time goes on. I even have friends that have animals diagnosed with cancer. My girlfriends mothers' cat has..get this...OC! What is going on? I can't be the only one thinking this? That something is very very wrong.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Jerry, I am so sorry to read about Dot. I am praying for her and her family and for you and your staff. Wow, that is a lot to be hit with, I feel for Dot. Keep us posted, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | There still is no word on the lung biopsy. It seems that there is a lack of coordination going on between the lung and brain docs. This is very frustrating.
They did not start radiation today, but took measurements for her mask for radiation of her brain. They told her and her husband the side effects and it sure seems like everything that's been discussed here on the forum.
Since she has claustraphobic problems with MRI's, I told her husband that many here have had trouble being in the mask and she might too. I told him to let the doctor know about this. Seems like all I have learned here from all you brave souls, is helping out in this situation.
I guess I will know more tomorrow.
I greatly appreciate all of the support that my family here is giving to Dot, through me.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | man i can remember back just 10-15 yrs - hearing of someone i knew that had been hit with cancer was so rare ... now? my GOODNESS! to meet someone who has not had it in their immediate family is rare now.
some say it is all genetics ,.... i say what is see says different ... life has become so sedentary since computer age and we eat so much junk / processed food now compared to what our parents served .. there HAS to be a connection, this along with pollution and chemicals being in things that we do not even know about... it is too much of an epidemic for there not to be a change that caused such a dramatic increase.
ANyways ... i am rambling but this disease makes me angry (in a not mad at anyone way) ...
I feel for Dot and pray that her journey is met with comfort and peace and a good report at the end - even if this scenario would defy all odds.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Jerry,
I am so sorry to hear of Dot's diagnois. Where is she being treated? I'm curious as to why radiation on the brain rather than surgery. Is it the size, the location, the what? The reason I ask is I just had a friend who had a brain tumor and they did surgery, but his turned out to be noncancerous.
Post has soon as you know the results on the lungs.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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