| | 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 | I'm confused to. If she has been told she only has a few months to live then what are they waiting for her to get strong for?
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: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Guys,
Back in November 2007 they finished 7 weeks of radiation and chemo to the neck/lungs. At the beginning of December we met with the doctors and he said the radiation has done a lot of good and bad lets give her a break.
When we met with them on the 14 of Jan, he said shes too weak, the CT scan shows growth in the lungs, neck(visiable now), tongue (not visiable to the human eye yet). He also said the chemo and cisplatin(sp?) didnt help...
He wants her to become stronger (we are meeting in Feb), so they could look at some treatment options, he said another round of chemo at this stage might make her even worse...
The 6 months he didnt tell her, I came back into the room after my mom left, and asked him about time frame and he said patients in her state where the chemo/drugs has had no effects we are looking at 6 months....
Now, like obviously the cancer is going to continue to grow because these guys aren;t doing anything. IF i cut myself and let myself bleed for 2 months im sure im not going to get any better right? Now is she weak because of the lung cancer? or is she weak because shes not getting enough nutrition?
I just want a second opinion, if the cancer in the lungs grew 10% in 3 weeks (according to the CT Scan/doc) then something should be done? .. Sitting around isnt going to do much?
give me some thoughts here guys, im just fishing
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Nov 2007 Posts: 29 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 29 | I am here in Ontario and I was just wondering who your mom is seeing...is it at PMH? | | | | | 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 | Son,
I agree with you...something needs to be done NOW. I would try to get another opinion ASAP.
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: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | SCC lung mets are very difficult to treat. They may, in fact, be discussing palliative treatment and they want her strength built up to begin that protocol. Palliative treatment is used to extend life and minimize pain, shrink tumors, etc. The weakness could be caused by malnutrition or possibly low blood oxygen levels due to the lung mets (possibly even low TSH levels from radiation damage to the thyroid).
Some people just don't respond to treatment I am sorry to say and recurrence in the first year can have very serious consequences. I wish that I could give you something more positive to hold on to. No one should have to go through this...
We are here for you.
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Son,
You have looked into many avenues in search of ways to help your mother.
You have received much good advice and support from this forum. You have spoken with your mother's doctors.
Have you been in touch with any clergy? Every hospital has a chaplain. Particularly if your mother is receiving care at such a major facility the chaplains are experienced with the heartbreaking situation you are experiencing. Although she is not currently hospitalized there they should be able to help you and can even steer you to someone of a particular faith. Have you spoken with a clergy person who is familiar with your mother and or yourself? Every faith has specific prayers for troubled times. Be as agressive with this as you have been in the other paths you have been exploring.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: May 2006 Posts: 69 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: May 2006 Posts: 69 | Enimatic,
She is at PMH - the team went from a Surgical Oncologist, Radiation Oncologist, and an ENT?
Does PMH have a policy on SCC lung cancer patients? I remember the Radiation Oncologist saying to us that if and when lung cancer in the lungs is confirmed they would have to stop radiation to the neck (and they did, once it was confirmed) ...
Do you want the names... i can PM them to you?
the world brought me to my knees...
Update: Feb 10/08: Mom passed away on Jan 31,08 - infection (unknown) in her lungs with her weakened immune system resulted in cardiac arrest - T2NO SCC of tongue surgery 6/30/06, SCC left neck and lungs detected Sept 07, 7 weeks rad/3 rounds chemo had no effect.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Most pastors will be more than glad to visit her at home or in the hospital. Mine has even gone to Columbus, Ohio with me and to <Morgantown, WVA He is a very special and caring person. Most are.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | Hey Herson,
WhenI was getting second opinions for my mom, i realized how important it is to do them all at once. Therefore if you don't get the results you want from your first choice, you will still have options. go to the hospitals websites and start emails. I emailed and called doctors directly. Don't go through the main hospital try to to go straight to the Doctors.
Also becareful of "protocol." Protocol is a big reason why my mom can't have moe treatment. She was iven the old school radiation and now she can not have anymore. Go where treatment is advancing not where there is a strick standard of care that doctors are unwilling to to admit it maynot be the best.
Let me know if you need help with contact information.
Amy
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Nov 2007 Posts: 29 "OCF Canuck" Contributing Member (25+ posts) | | "OCF Canuck" Contributing Member (25+ posts)
Joined: Nov 2007 Posts: 29 | I must admit I agree with Gary....SCC mets are very hard to treat. PMH is essentially the 'centre of the universe' for cancer care in Ontario, if not in Canada. You may send me the names of your specialists and I can let you know if I know anything about them and their protocols. I am sending a patient of mine down there now with suspected lung cancer. | | |
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