| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I've been thinking so much about you and Linda and hoping things would be progressing more hopefully. So sorry for the latest setback. Hope the blood test and x-ray results can get some clarification for you. Still praying for better days ahead.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Really sorry to hear this. Sounds like a lot of miscommunication.
Are you able to set up a daily meeting with Linda's Doctor/team. Where they can update you with progress, test results and the current plan and options. This also gives you and Michael a place to ask questions and ensure you understand the plan. The nurses involved in Linda's care should attend this daily meeting too.
Complicated health always involves 2 steps forward and 1 step backwards. However Family should never feel like you two are.
Thinking of the 3 of you,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | I think you need some clarification with the drs. And tell the to stop messing with her meds. They did that to my mom too, saying they were switching her to a common palliative care pain med. she had a bad reaction to it and for about 2 days they didn't listen when we told them it was the change of meds. They finally relented and gave her something different, suck! Hugs you two.
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
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | David, Im very sorry to hear about Lindas latest problems. If you have questions, ask the doctor or nurses. You need to understand what is going on so you can make proper decisions. If its too technical, ask them to explain it again. Dont be afraid to speak up if you are unsure about something. They work for you and Linda.
Im hoping you have the strength to persevere thru all of this. I know at times it must appear to be such a bleak future full of never ending medical hurdles. Be strong, we are in your corner.
(((HUGS)))
ChristineSCC 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  | | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Linda's fever peaked at 102.8 yesterday morning but was brought under control with meds. Pulse was at 135 at time of highest fever, but dropped to the low 90's. She was feeling very low yesterday eve and said, via pen and paper, that she want's to go home. I feel so awful for her, I know she is scared and far from family. As for communication with med staff, here's an example. Nurse; We are taking her off the Norco because her liver enzymes are elevated."
Me; "What does that mean?"
Nurse; "It means they're higher".
Oh, thank you so much. We have not been to impressed with this place at all, from the beginning, but we were told by the docs that it was the only place closer than Sacramento for trach weaning. We need to get her back here or bite the gas price bullet and move her to Sac. Setting up a meeting with the pulmonologist is unbelievably difficult. Disgusted!
Last edited by ChristineB; 06-27-2013 07:34 PM.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh my goodness, David - with answers like that nurse gave you, no wonder you are not impressed with the treatment and lack of clarification and proper answers to your questions! I'm so sorry this has been so rough on you and Linda. Wish I could be there so I could go yell at somebody! Keep bugging them for proper answers and get as many people involved to help you until you do! Do they by any chance have a patient advocate that can help you with information you need, or get a meeting going with the pulmonologist? You are such a great caregiver, David - but there are times when caregivers need a little help, too. Hope you and Linda get some relief soon from all this and that things improve.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | We all feel for the both of you and that place does sound scary but you have been thru the war so dig down and continue to fight for her.
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Spent 5 hours with Linda yesterday listening to her speak. R.T. put a cap on her trach so she was able to speak, albeit in a very raspy voice. I was afraid she would wear it out but it only got clearer over the time. Huge milestone.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | It must have been very nice for you to be able to speak to Linda and hear her response. So glad for you.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Looks (and sounds) like things are looking up David. Love to both you and Linda and hoping she continues to make progress like this 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
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