My mother completed her 1st week of Cisplatin F-5U two days ago. The problem she is having is her mouth and tongue is burning life fire. There is little splits on her tongue and sores breaking out inside her mouth. The Magic mouth Wash and Biotene spray isn't doing any good. Does anyone know of something else she can try. She's in so much pain from this.

Thanks
Heidi

Im so sorry to hear your mother is hurting! Your mother should be on some type of pain medication to manage it. Ask the doc to prescribe something strong. Nobody should have to hurt! It does the patient absolutely no good to be in pain, it just makes everything so much harder.

Also she can rinse her mouth a few times per day with 16 oz warm water, 2 tsp baking soda and 2 tsp salt. I have to warn you the salt will burn but it is very helpful and promotes healing. You can cut the salt back to 1/2 tsp or 1 tsp. This mixture will help keep the ph balance in her mouth stable while helping to heal the sores as well.

Thanks Christine I will fix the salt & baking soda and I'm gonna call the doctor and get a stronger pain medicine for her. All she has is Norco 7.5 and she is taking 2 at a time rite now.

Thanks
Heidi

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.

If she ramps up the pain relief keep on top of the constipation. After my bout they put me on Targin, which has an agent that stops the constipation. There are other ways to manage constipation as well, the important thing is to be 2-3 days ahead of it. (Not 7 days behind it like me!)

Christine
Thanks so much for the Advice on the Patch. The Doc. suggested the patch to me on the phone before I could even ask. I have already been to the pharmacy and the patch is now on her. I'm glad because she has a hard time swallowing the pills. She will still use the Norco for break through. I'm glad you gave me a heads up on the use of them.

OzMojo
We already had an experience with the constipation and lord knows it was nothing nice. The doctor recommended Colace but it didn't work to good. It seems like Dulcolax is helping some . Sometimes she has to take 2 but it helps. Thank you also for the advice. I appreciate it a lot .

Good Luck
Heidi

Ask for prescription pain meds to be given in liquid form. Ones Ive used are Lortab and Neurontin (AKA gabapentin which works great for nerve pain). Your poor mother is a real trooper if she is still swallowing pills with her mouth being so sore. Glad to hear she is on the patch.

She should feel some relief very soon. If its been 24 hours and she still is in alot of pain, ask the patch mg to be upped. I was on 50mg to start and after several weeks moved all the way up to 150mg. I stayed on the higher dose for less than 2 weeks and gradually went all the way down to 12.5mg over a period of about 6 weeks.

Thanks Christine
The Patches are 75 MG and she has it on for about 8 hours now. I'm sure it will give her some relief . I told her about the advise you've given and she Thanks you from the bottom of her heart.

Thanks
Heidi

Heidi, thats what we are here for. We are all in this together.

Hope your mother feels better very soon.

It could be dry mouth, infection, Mucocitis, neutropenic ulcers, a combination of these, and others. Drink plenty water, see about getting extra IV hydration at the chemo center, use less harsh toothpaste, no alcohol mouthwash, soft toothbrushes, sponge type or baby brushes, rinsing the mouth, brushing too often with harsh products can cause mouth issues. Rinsing with Glutamine powder helps in repairing tissue, helps neuropathy too. Magic mouthwash, similar products, help ease the pain, antibacterial rinses like chlohexadine help with mucocitis. Juven, made by Abbott pharmaceuticals, has Glutamine in it, and was given to me by my chemo center, which is swallowed, tastes good, repairs the mucosal lining. NeutraSal, a prescription rinse, helps with dry mouth, Mucocitis. My radiation center sprayed my mouth daily with a saline solution, which helped with mucocitis, gets the gunk out, helps controlling thrush. Those home oral cleaning products can be used the same way. Sucking on ice chips may ease the mouth pain. Try to avoid acidic foods, anything else that may irritate the mouth like hot temperature, spicy and sharp textured foods.

I hope this helps, and check with the doctor(s).

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.

Thank you for the advice

The doctor did start her on Gabapentin a couple days ago and she does have the patch and the Norco. There is a problem that may be adding to the pain. When my mother had her second "Surgical" biopsy which was just below the chin on her left side, infection had set in. We didn't even know it as she had no fever or sign of Infection. A week later while in surgery the Oncologist said a ball of infection had formed . It was cleaned well and antibiotic I V was given. Well as her surgery scar has healed well and so has her spot where the drainage tube was. But she still had some type of drainage. We realize it is coming from rite where the biopsy was done. So I'm guessing that's where the tumor is also. Its not a very big opening but we do have to continue to wipe it. She has been taking antibiotics since she left the hospital. I think it may be pressing on her nerves and causing some of this pain. It really shocked me to see that this has actually come through the skin because the biopsy was done inward. She is taking her second 5 day drip of Chemo in a couple of days. Hopefully it will shrink and dry up .

Today was a check up with the surgical Oncologist and mom said she couldn't make it. She was just feeling to bad to make the trip . I've arranged for the Surgeon to check her when she goes in the hospital.

Thanks for your Advice
Heidi

Lots of love to you and your mother. I know how great it is for us patients to be at home but where severe pain is concerned hospital is sometimes a good place to be. I'm hoping and praying your mother gets her pain meds sorted soon.