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.

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

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!

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

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.

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

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.

This Tx can be horrible for a short (relatively) while but death from this cancer is much more horrible and is permanent.

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

[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.