Heidi, I see it's been nearly a week since your first post. You've gotten a lot of great suggestions and I hope your mother is feeling better. For me the only thing that helped with the mouth lesions was viscous lidocaine, which I swished and held in my mouth for a good 10 minutes before trying to swallow the liquid nutrition. I also had oxycodone and finally fentanyl patches, but for surface pain the lidocaine was the only thing that helped.

Please keep us posted.

Hi David.
It's has been a long hard week since my post but we are getting along as best we can .my moms been using the magic mouth wash and baking soda /salt rinse . Her pain has been horrific . The patches help some and the MO added Oxycotin pills to her pain meds. Good thing for the Peg because my moms not been able to eat much . Yesterday after her doctor visit he ordered her to the hospital to get hydrated with IV fluids .

I'm so sorry to read about her pain, wish I could wave a magic wand and have it all disappear. I found the IV hydration very helpful, went in for it a few times and I always felt better for a days afterward. I'll keep my fingers and toes crossed.

We are wondering about this pain . Her ear , The whole side of her face , her jaw area and she is suffering with terrible headaches . Basically the whole side where the cancer is . On top of all this she has nausea and dizzy spells . She has only taken one Chemo threatment so far and is due for her second one on the 17th . Could this be side effects from the chemo treatment causing all this pain ? We asked the MO and was told it could from the treatment or it could be the Cancer itself causing all this pain . I sure hope it's not .

We may not all respond Sweetpe but I can tell you we all wince when we read about one of our OCF family in pain. Generally speaking cancer itself isn't painful, perhaps its a consequence of the surgery. Chemo can cause hearing loss, maybe that is causing the ear problems. Does she have tinnitus?

Keep everything moving along (food and water going in, poo and pee going out) and keep the doctors informed of changes in the side effects. I know you're doing that already. Chin up, we are there with you.

OzMojo

Thanks for the reply.
I sit here tonight and wonder why or what could be causing my mom to be in so much pain. I ask her " Mom what exactly is hurting. Where is the pain mom " and she just takes her hand and hold it close to the side of her face and says Its all over on one side of my face and she said her ear feels like day one from when she was diagnosed. She is also suffering with these horrible headaches only on one side of her head. She was using the pain patch but now she has removed it because she think that could be causing the headaches. The Mo put her on oxycotin along with the Norco for break through. She also takes Fericet for the head pain.
These Meds do help but when I tell you 3 to 4 hours later she is in severe pain again. The pain is so great that her hands were trembling waiting for the meds to kick in.

We have discussed this with her MO and he doesn't really know where its coming from. My mom doesn't want to do a scan on her head because she said she don't even want to know the results.

She is having swelling everyday in her face so I have been massaging it like the therapist showed me. It helps some but comes rite back. She goes back in the hospital on the 17th to start her second round of Chemo. That is if she don't land in there before .

I feel so sorry for my mom. I'm trying to be strong but I find myself alone crying in another room. something just isn't rite here.

Heidi

Managing constant pain was described to me as being like keeping a bath warm. You can keep it warm by adding a bit of how water regularly. If you let it go cold, it needs a heap of hot water and its uncomfortable while the temperature settles. To take that metaphor to pain relief, it means keeping the pain relief up and not waiting until the pain returns at the end of the 4 hours. We use a baseline of paracetamol, titrated with various combinations of oxycontin etc. Hopefully none of this is new to you.

It may be related to the chemo particularly around the ears, but I'm inclined to think its more related to surgery. I don't have any direct experience of it other than dental surgery, but it seems like nerve pain to me. Neuralgia, neuritis, something like that. I don't think an MO is the right specialty for this, but a doctor would be the best person to answer that. Has the MO suggested referring to someone else?

Keep going with the massages. It prevents Lymphedema, opens a physical connection for your mother, and its something practical you can do to help her. I know its enormously difficult for you. If you can, try to focus on separating the pain from the distress of the pain. Remaining calm and positive will help you focus on the practicalities you need to carry on, and the benefits will flow on to your mother. God be with you both.

Thank you OzMojo for your reply.

The pain Meds were new to me but I will say we learned the hard way and now every 4 hours for sure my mom takes her Meds.

After my moms first surgery our family was shocked to see how fast she had recovered. She even returned to work as she is still employed with the School Board. This second surgery has been brutal and very slow to recover. Hopefully my mom will start to feel better soon.

Thank you again
Heidi

What about a longer lasting pain medicine with something to help for breakthru pain? Ask the doc about the fentayl patch. It has worked very well for many here, including myself. This medication is a step up and step down one where it would gradually be increased or decreased. Read the directions thoroughly. The fentanyl patch is the strongest pain killer available. Never fold, bend tear, cut, rip or damage the patch. Always put it in a different place, changing it every 72 hours. I used to change mine about every 68 hours to make sure it didnt wear off. It can take up to 24 hours before it starts to work. If she could get the patch on today, about 12-16 hours later she would begin to have some relief. When wearing the patch do no long hot showers or baths as very hot water could trigger too much medication being released causing an over-dose. It also can make the patient tired and constipated. I would guess your mother would start at at least 50mg, maybe even 75mg. She can also have the norco in case she is having breakthru pain. I would also suggest asking about Gabapentin AKA Neurontin which works very well for nerve type pain.

Cancer can cause pain. I had it on the side of the face, near ear from an enlarged Lymph node, which most likely was pressing on a nerve. Oxycodone, and the Fetynal patch helped, besides it shrinking from radiation. Another medication for nerve pain is Lyrica.