Am new & don't yet know all the abreviations. My mom had oral cancer--1st a growth in her jaw...surgically removed...got all the cancer...then on the next 3 mo visit another couple of spots found on lower gum and inside lower lip. Surgically removed...biopsies came back ok. 9 years cancer free....She lost her husband, my dad, of 64 years last June. Over the past few months she dropped a lot of weight..had her 6mo ckup...cancer's back. Dr did surgery on the spots and when he came out to talk w/us...the cancer is in the roof of her mouth, so part of her palate was taken..cancer is in the alveolar? bone....another spot at back of her tongue. Has HPV growths giving her an awful time. Dentures..a huge problem, so PEG tube placed in. Going on 3 wks now and still so very nauseous....She will have a PET scan on Fri & begin chemo using Erbitux. One Dr wants her to do radiation too, the other isn't pushing it. Dr's started her today on the anti-nausea meds..it is helping...but she doesn't want to even try to eat anything by mouth...says everything tastes awful...and too much trouble trying to get the food in (all pureed). She has macular degeneration, so she isn't able to feed herself yet. I have a brother & 2 other sisters. Us 3 girls are taking care of her & getting her to apptmnts, etc. We're devestated....confused...heartbroken...scared to death. The posts & info I've read on here have to be posted by some of the strongest & bravest people on this planet. I can't believe what many of you have endured. I just had to get this off my chest. Thanks for being here And my prayers are with all of you...each and every day. Jane

Hi Jane!

Glad you found these forums, so sorry you had to my dear!

First things first, get your mom to a Comprehensive Cancer Center ASAP! Taking a multidisciplinary approach to this cancer using the latest treatment protocols is essential to survival really, you want the absolute best medical advice available to you and people who deal with this disease everyday. It just gives your mom the best possible outcome.

I'll tell you that if she's HPV+ then Erbitux isn't the best chemo for her and she should be in radiation as chemotherapy in this disease isn't curative. Surgery, radiation are the only way to kill this cancer with chemo being a clean up/addition to radiation usually. This is really why you need a second opinion ASAP.

If you have staging information and more details etc, that helps with advice too. We are here to help my dear

Hang in there, plug into these forums, as Caregivers you've just come into the hardest job on the planet, there are plenty of "angels of mercy" aka caregivers on these forums that can help.

Glad you found us, more details the better

Eric

Welcome to OCF, Jane! Glad you have found this forum to help you with info and support for your mother. So sorry to hear she has undergone so much with this awful disease.

If she is losing weight and unable to eat, what about the feeding tube? That is a good temporary way to help get her the proper nutrition. Without taking in enough calories or water she will feel awful. Since she already has it in place her nutrition should be run with a pump several hours a day.

Best wishes with everything!

Ditto for all that Eric said including the welcome... your mom is very lucky to have you ! Hugs!

Eric, I think the HPV she is talking about are the polyps that can form in the throat. They are not cancerous and can be removed but usually will grow back. I don't think there is a cure. Some HPV+ women will give birth to babies that will have them.

Jane, At 87 and with her other problems this cancer and it's treatment will present some signaficiant challenges and quality of life issues. I'm not sure that without radiation much is being accomplished but obviously I'm not in a postion to make that call. Please consult as many experts as you can.

Hi Jane,
I agree with David. It sounds as though your mom has been through so much already. Please be sure to give her a chance to let you know her feelings on treatment. The tx is very hard and challenging. My husband was only 52 and it took it's toll on him. I can't imagine being 87.
Being the caregiver is such a mixed blessing place to be. It gives you the opportunity to smother your patient with love, but it also carries the burden of decision making and literally feeling their pain, only we don't have pain meds!!
I'm so sorry your family is going through this. We are here for you. Please come back and let us know how things are going. You are not alone!!
Blessings,
Kathy

First thing -- you are as strong as anyone on these boards. Believe it. And the alveolar bone refers to the ridge of the jawbone, where the teeth are set in.

And she does have a PEG? Try to use it to relieve her of the chore of keeping nourished and to keep her from getting dehydrated. Dehydration in particular makes a person feel dreadful and makes nausea much worse. Some outpatient departments will also "top up" chemo patients with a bag or two of IV fluids. You could ask. For the PEG I highly recommend asking for a pump to give her liquids slowly. They are easy to operate, really. Use the antinausea meds liberally.

Two points from posts above. One, radiation is the only curative treatment as I understand things. Radiation to the head and neck can be brutal. And it carries significant quality of life implications during and after treatment. It will be very hard to come back to her previous level of functioning. Next point made was to be sure to let your mom tell you honestly how she feels about treatment. Is this what she wants? If it is. then go for broke. But are you and your siblings able to accept it if she's tired of pain and loss? It might be wise to ask her in no uncertain terms about her wishes.

Listen, I'm just going to be direct. I've been a nurse for a very long time. Many times I have seen families (my patients were all children) want every possible thing done for their loved one. It is natural and understandable to never give up the fight. Sometimes though, things move from a grey area to black. You never know exactly when you hit that point but you hit it all the same. Some mountains are too high to climb. And after living a long life, sometimes death isn't the enemy, it is a kind friend.

I would encourage your family to lay it all out, as painful as it is. I am certain you all will help her through this with tenderness and compassion. I am certain she will have the benefit of your full support no matter what she decides. And you will have the full support of the people on this site, no matter what happens.

Forgive me if I have said anything hurtful or been callous and insensitive. That truly is not my intention. Wishing you strength in the coming days/weeks/months.

I am SO grateful to all of you that posted back to me...Mom has SCC HPV + and if I remember correctly Stage 2. Mom does have the PEG tube..the 3 of us take turns going to her to feed her ea. day. And we're so glad we're able to do this at least for her. Tomorrow she will start the Erbitux..we do know that it won't kill the cancer...but rather are trying to slow it down as it's agressive her ETN says & the oncologist. No, we don't think she'd make it thru radiation...one Dr wants to do it...mom doesn't...but she's willing to try the chemo...and she understands she can stay stop at anytime. Her ENT feels that after 1 or 2 treatments he'll know if it's doing any good. It's a wait & see thing. And, 007--Kathy...you are an angel....Nothing you said was out of line or coarse. It is life and we all know that an end to this might just be the best. Not giving up...but being real. We watched my dad die inch by inch over 2 yrs...he had the opposite of cancer...total drop in white blood cells...mylo..something I think...he refused to have a PEG tube...had severe scarring in his esophagus from ruptures, tears & surgeries...he couldn't eat...and we watched him starve to death literally. Weighed 98 lbs when he died & 6'3. We just want to make things as easy as possible for mom and comfortable. So...we'll see what tomorrow brings....No one can really tell her or us what to expect...other than it can be bad. She's already been started on the anti-nausea meds..and they do help. I thank you all for your help and support...and think I'll be hanging around here for a long time. PEOPLE--you are AMAZING...God bless all of you...and my prayers are with you. Jane

Jane,
You have an amazing attitude! What you and your family are going through is not easy but you seem to have a great grasp of the situation. It can be overwhelming trying to digest all of the medical jargon on top of coming to terms with what is happening to your mom. You seem to be doing everything you can to make sure your mom is getting the best medical care, is comfortable, and well cared for. I am so sorry you have to be here, but this forum has been a godsend for me and many others so I think you are in the right place. I wish I had found it before my mom passed away last month... you are in good hands.
Speaking as a former caregiver, you are making the right move by not having your mom endure radiation. It is not kind, and I can't imagine someone 25 years older than my mom going through it... it certainly takes a toll and if it is going to decrease quality of life, it is not worth it in my opinion. It sounds like your mom has a great handle on both the physicaly and emotional aspects of what she is experiencing... and while I know some days you may seem to be at peace with it, there will certainly be days where you are not. It is against every fiber of our beings to let go of all control and allow nature (or science) to take it's course. But in these situations there is very little we can control.
Best of luck to you and your family, and good health and peace to your mom. Hang in there and take care of yourself while taking care of your mom. Give her all the love in the world, I know you are. And everything will be ok.

Well if her SCC is HPV+ then as Eric mention above Erbitux would not be my chemo of choice. Erbitux works best when there is an overexpression of EGRF which is not so with HPV. Cisplatin or Carboplatin would be my choice but as I said before I doubt without rad this Tx approach will do much except produce unwanted side effects.