| Joined: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | Hi all,
So very glad I found this forum. Two weeks ago my 75 yo mom was diagnosed via biopsy and MRI with Stage IV BOT SCC with dual sided lymph involvement, larynx, top of hyoid bone, and TMJ on the left side. Primary tumor is about 4cm x 4 cm but has grown to fuse her tongue to her larynx (covering the epiglottis entirely).
The med oncologist and rad oncologist want to proceed with treatment but she's reluctant. She's only 90 lbs, has one kidney, and is becoming alarmingly disabled each day. I'm her only living relative. She went from living independently and working in her garden, driving, doing her shopping, to being practically bedridden in 3 weeks.
She had a trach installed in the hospital at the time of her biopsy to protect her airway, g-tube, and chemo port and now her WBC is elevated at 15,000 and nobody can find an infection.
After all I've read about the possibly devastating effects of radiation and chemo I'm not sure she could survive that course of therapy. She's not a candidate for Cisplatin due to having one kidney, so they'll try Carbotaxol? Anybody heard of that?
The docs want her to gain 10lbs before they begin, but she gets nauseated after just one can of boost in her tube, and this is BEFORE treatment, even with Compazine and meglace and other powerful anti-nausea drugs.
I've spoken frankly with her docs about treatment and they told me she'd have 6 - 9 mos if she did nothing, and they, too, were concerned she would not be able to tolerate chemo or radiation given her poor nutritional state and age, but it was all they had to offer.
I'm terrified and really flying blind here. I would appreciate any insight anybody can give me. I know everybody responds to treatment differently, but I can't imagine her surviving the treatment if it means losing even 10 lbs.
Thanks in advance and my sincere best wishes to all here.
| | | | Joined: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | I forgot to add that the PET scan was negative for any mets outside her neck area, but showed evidence of moderate-severe emphysema (she had no complaints of this). Also, no other medical disorders other than hypertension, which is controlled with beta blockers.
No diabetes, heart disease, etc. She lost the kidney 40+ years ago due to a birth defect (twisted ureter).
Thanks again for reading, and for any response.
Love and Light, Only Daughter | | | | 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 | Kathy, welcome to OCF! I am very sorry to hear about your mother and her rapidly decreasing health. She must feel horrible, poor thing! I was hospitalized for malnutrition and dehydration and felt terrible so I understand what she is going thru. Dont worry, you have come to the right place for help. My suggestions would be to make sure she is being treated at a large cancer center where they are most familiar with treating oral cancer patients. This will give her the very best shot if she goes thru treatments. Cancer Centers My concern is the nutrition and dehydration. She must be on an IV since she is hospitalized. Since she has a Gtube I do not understand why she isnt given one of the formulas which has more calories and nutrients than Boost or Ensure. Also what about using a feeding pump? This can be slowed down and the formula can be mixed with water. The 2 main reasons people cant tolerate their formulas are the speed it goes and that its too thick or heavy. By slowing down the feeding and adding water it should solve the problem. Of course with 100s of kinds on the market, there is bound to be one with higher calories would work for her. I used two-cal which was 560 calories per can, all she would need is 4 or 5 cans a day. If she has not seen a nutritionist then the facility is not doing its job, speak up and ask for one. All too often the staff is overworked so you must be her advocate and her voice. Any oral cancer patient being so small needs at least 2500 calories and 48 oz of water daily, with your moms situation I would suggest to try to get more like 3500 calories into her. Just one day after she would take this much in she would feel better. Carbo is commonly used to replace cisplatin. Im glad the docs chose another chemo as cisplatin can be very hard on the kidneys and in your mothers situation this could be devastating. Wishing you both all the best! 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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2011 Posts: 596 | Hello, Kathy.
I'm so terribly sorry to learn of your mother's diagnosis. I hope that Christine's post gave you some hope for getting your mother some added nutrition so she can pack on some much-needed weight.
I know that your head is likely spinning right now due to all of the big, difficult decisions that have to be made in an expeditious manner. Just know that we are here for you every step of the way.
I wish you and you Mom the best of luck in making these tough decisions. Please keep us posted as you are able.
Take care, 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!
| | | | 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 believe they are talking about Carboplatin. It is often used when Cisplatin can not and it is supposed to be just as effective without the nasty side effects of Cisplatin.
Please do get another opinion from a comprehensive cancer center as Christine suggests.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | When I think of all Kevin went through I can't imagine your mom being able to do it. It is miserable and he was strong, healthy otherwise and overweight by about 50lbs. It took him down for 5 months and he lost 56lbs, and that was eating/drinking Ensure most of the time. I'm not saying don't do anything, but she may want to just enjoy the time she has. Be sure she has a voice in it, as I'm sure you are. Sometimes I think patients do what they think their families want them to do even if it's not what they want. I'm so sorry your family has been faced with this. We have all been there and truly understand the devastation. Blessings, Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | 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 | It's not an easy treatment. But dying from this type of cancer is a horrible death as well. It's six to seven weeks of pain, for a possible (even likely - cure - since BOT cancer is very treatable with this course of therapy) it's a tough call. Cisplatin is very hard on the kidneys - my hospital actually keeps its patients receiving cis in for 24 hours on IV fluids to offset this. There are plenty of horror stories out there but everyone responds differently - I do not envy your decision. With regards to the feeds, if they are done on a pump they apparently cause less nausea. Hugs and god bless.
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: 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 | This Tx can be horrible for a short (relatively) while but death from this cancer is much more horrible and is permanent.
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kathy
My sympathy for the terrible predicament you face. It is just not fair. My opinion is that if your Mother is mentally competent, it is her decision to make. While there is no disagreement with David's post, sometimes the quality of life after TX is such that without a major compelling reason to deal the "new normal" , it is reasonable to seek hospice care instead of the aggressive treatment (TX) base of tongue cancer requires I would ask the doctors what they expect your Mom to be able to eat or swallow after TX Will she be able to speak so that others understand her? Will she be on a permanent feeding tube? Will she be frailer than ever? Who will be her caregiver during TX? Realistically, do they expecta "cure" or just buying time before a recurrence? Don't be surprised when they say "we do not know" but ask anyway. If my cancer comes back in 15 years, I might well choose hospice (if there have been no breakthroughs in TX ) but since was only 60 with a wife and son dependent on me the first time and 61 the second time, my decision was easy. Your Mom's decision does not seem easy at all but very difficult and based on what has happened to me, I understand her reluctance. Just a different view to consider in case your mom declines aggressive TX Your mom probably fears losing her independence permanently and not being able to garden or take care of herself as a result of TX. Finally since even her doctors share your fears that the TX will kill her in her weakened state, do not be pushed or bullied into thinking that you are a bad child if you do not insist on TX. Again while you are a caring daughter , your mother is an adult and at this time needs your support of whatever decision she makes Of course you want her cured but at what cost? Hospice can deal with the pain for the patient but not for the caregiver. No easy answer here Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | [quote=KathyM]She's not a candidate for Cisplatin due to having one kidney, so they'll try Carbotaxol? Anybody heard of that?[/quote]
Hi Kathy, it will be a hard time for your mother but we do not have too many choices here. Carbo Taxol is a combination chemotherapy of Carboplatin and Taxane (Docetaxel or Paclitaxel). Cisplatin is avoided here because of pre-existing kidney disease. As doctor mentioned she surely has to put up atleast 10 lbs to be able to cope up with this agressive treatment. Go through the forum to find out what all you can give her to achieve this target.
All the best. I agree with Charm, so my sincere request is to discuss with doctor about their intent here. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kathy As a follow up to my post, here is a link to a discussion of how dying from oral cancer in a hospice does not have to be horrible or painful Hospice It's by a certified hospice and pallative care nurse who has spent over 28 years in hospice care and had dealt with oral cancer patients. Significantly she states [quote]In caring for hospice patients for 25 years, I never saw any patient with oral cancer that was not kept comfortable. [/quote] Also look at the OCF main web page OCF hospice Best wishes for you and your family in this difficult time Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jun 2012 Posts: 3 Member | OP Member Joined: Jun 2012 Posts: 3 | Thank you all for your very kind words of support, your honesty, and encouragement. i really appreciate all of it.
Mom wants to pursue tretment, even tho the docs (Emory Hospital in Atlanta) agree that there's about a 50% chance she won't survive the treatment. Rather, they'll be forced to stop before it is curative. 50/50 is a nasty number to hear, really ties your hands. But she's moving forward. They can't tell us how likely a recurrence will be. She'll receive PeT scans every 3 months for a year, assuming she makes it through the TX.
She had her remaining natural teeth extracted yesterday and will be fitted for the mask (simulation?) tomorrow. Really dreading that. She's managed to gain about 4 pounds in 10 days. Not great, but moving in the right direction, at least.
She's in a rehab center right now but is moving toa ssisted living (with Medicare home health nurses to visit daily) this weekend. Radiation and Carbo-Taxol begin the 23rd. They need time for her mouth to heal from the extractions and time for the computer to map her face, I guess. Don't know why that takes so long.
So many uncertainties. I wish we had more family to help with the decisions and the assistance.
Thanks again for your thoughts and prayers, I sincerely hope you all are doing well in your recovery and cures!
Kathy | | | | 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 | Please prepare her for the fitting as it is quite confining. The more she understands about what it may feel like the better her response will be. I was totally unprepared (no advance discussion by my docs) and when they clamped me down so tight that the mask left marks in my skin (went away after appx 20 mins) my heart started pounding. By the second Tx I got used to it but some have posted that they needed a mild sedative before each rad session. Anyway I wish her well and please keep us posted. The more we know the more we can help.
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: 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 | Your mom is a trooper and thats great - and yes of she's not okay with being restrained - maybe an Ativan before hand to relax her. Good luck!
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: May 2012 Posts: 114 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 114 | Hi Kathy,
Good for your mom for being such a fighter! I wish you all the best.
As for the mask fitting and use during radiation, my mom actually had no problem with it. It does seem it can be very confining and if you are not comfortable with that it can be daunting. But she did fine with it personally. Everyone is different though... preparing her for it upfront is definitely a good idea, as well as being armed with an Ativan, or half if she's real sensitive to it like my mom was.
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12 | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Kathy
Best wishes for your Mom. Since it's clear from your post that the mask has already been fitted by this time today, I won't comment on it. Since she has opted for radiation TX, I would insist that her doctors immediately do a TSH blood test right now to see what her normal levels are. Please don't take no for an answer or the doctors' misinformed opinion that it doesn't matter, since subsequent blood tests can detect a thyroid problems. It is simply not true since the lab tests ranges are so large and also so 20th century and not acceptable to any savvy endocrinologist. It is a very easy test and she will be having a lot of blood work done anyway. What you want to be able to do, is after your Mom survives this (and she very well may), is to have her be able to have her own personal thryoid levels back. Trust me on this issue, I have personal experience on how terrible life can be without the right thryoid levels even though the old 20th century lab ranges say it's acceptable. Thank God I found an endocrinologist who graduated in the 21st Century who could help me. Charm
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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