Hello everyone. I have been on treatment since 11/17/2014. I find it harder to swallow but can take in liquid and soft foods. I also have Ulcerative Colitus and need to take Lialda which are large. So I have been crushing them and eating in a pudding. My main complaints are the ear pain and a localized acid stomach pain. The ear pain feels like someone jamming a pencil in my ear. I am told it's nerve pain.Has anyone taken nerve pain meds which are successful?

Also why is the temp of 100.4 bad? To me that would normally not be high. But that's why I am here.

I have also noticed my urine has a red tinge to it. Is that just the chemo?

I want to thank you all here who have taken the time to answer my questions. You've been very helpful.

Gabapentin AKA neurontin works great for nerve pain. Ask your doc for a prescription for this in liquid form. Being in pain is not easy, its actually very detrimental to the patient. Get your doc working on somethign strong enough to manage the pain. Maybe the fentanyl patch would be a good option? Follow all directions exactly especially never bending, cut, tear, fold, rip or otherwise break the patch. Also do not take long hot baths or showers while wearing the patch as it will cause the patch to release too much medicine which can cause an overdose. fentanyl is the strongest pain medicine on the market and it comes in various strengths. It will take about 24 hours after placed for the first one to kick in and then you just put a new patch on every 3 days in a different spot. Very easy, and it works!

You must take in at least 48-64 oz of water every single day. Make sure you tell your doc about red urine. It could be blood in it??? Its especially important on chemo days to drink even more to flush the poisons out of your body. Chemo can be very hard on the kidneys which is why red urine is such a concern.

Lyrica, aka Pegabalin, is a newer drug also used to treat nerve pain, but may be more expensive, needs pre-approval, or not covered by some insurers as Gabapentin is.

Hi Larry - if you started treatment on or about November 4th that puts you exactly one year behind me. I estimated your start date from your post above.

I didn't have chemo, just surgery then radiation. So, I didn't have the symptoms you are experiencing, nor the need for the pain meds you are taking.

This post serves no other purpose than to let you know others made it through treatment just fine and you will too. Maybe one year from now you will be able to cheer up another new member.

take care,
Tony

Hello everyone. I had chemo yesterday 3rd one. I finally had the Fentanyl patch upped to 50mcr and it works. I still have pain but feel it is much less and managable.
I am running out of breath, having a difficult time swallowing. I am to begin tube feedings very soon. The company is coming out.
Has anyone else had trouble breathing?
You guys have been great in helping know what to ask for. Thank you for your advice.
I have less pain and am able to get out of bed more.

There can be many reasons for this, but it's best to ask, see your doctor. Opioids can suppress the respiratory system, it does with me, making me out of breath, and can causes difficulty swallowing, tongue swelling, but with treatment that is a cause also. Then pneumonia can cause difficulty breathing, which I had several times, some were from aspirating. Dehydration can be another. If it's that bad, you can always go to the ER.

Good luck with the rest of your treatments, and tell your medical team.

Any discomfort or especially anything new or different should be communicated to the medical team immediately. Breathing is essential to life and anything affecting that should be considered emergent or emergency care. The things that affect breathing are nerves, muscles, lungs and the brain. All of these require highly trained medical professionals.

From your post, I suspect you are not drinking very much water. Unfortunately, this is a must and not doing so only creates more problems.

larry6905: I'm going to join the chorus of folks telling you to report your breathing difficulty to your doctor. I adopted a policy of reporting everything to my doctor and letting him figure out if it was important or not. I had a bit of difficulty breathing for several weeks when the lymphedema first came into my life. So I told my doctor. Turns out my epiglottis was very swollen and a prescription for steroids for about 6 weeks put it right. Not being able to draw a breath was scary and I was glad the doctor was able to bring me some relief.