Posted By: DavidUofMsavedMe My Update - 03-11-2020 12:12 AM
Two more days, woot!

Looking forward to the end of treatment. The mucositis is getting bad...the worst it has ever been during a scheduled 33 radiation treatment sessions, which is why my scheduled third round of chemo (cisplatin) was canceled today. Got fluid infusion with pain killer instead. My Chemo Oncologist did not want the chemo enhancing the radiation treatments, which would make the sores worst.

I've been dealing with tongue sores for a few weeks now, but have been able to deal with it using lidocaine, salt & soda rinse, & Magic Mouthwash. Last week I finally had to start using Morphine Immediate Release (IR) 15mg as needed for pain every 4 hours.

The pain worsened over the weekend. Eating & drinking have finally become difficult & I had to throw away some of my meals, which dialed back my caloric intake. Drinking an 8oz. bottle of Ensure became a chore, taking a long time to drink because of the pain. Now my nutritionist wants me drinking around 5 per day. Oh boy...

I was prescribed Morphine Extended Release (ER) 15mg today to use in conjunction with the IR. So hopefully it helps, because the IR alone wasn't getting the job done.
Posted By: gmcraft Re: My Update - 03-11-2020 01:33 PM
Many patients do not get the final dose of Cisplatin because of averse effects. If you are still able to drink Ensure you are doing not too badly. One patient I met at the hospital was taking an hour to get a bottle of Ensure down. That’s probably the norm rather than the exception. Hang in there, you’re doing very well. In a couple of weeks you will start to feel better.
Posted By: DavidUofMsavedMe Re: My Update - 03-11-2020 11:51 PM
One day to go. Woo hoo!

I handled the Cisplatin quite well. Only vomited once (because of a milkshake I think). Other than that the nausea was handled by antinasuea meds. I have been getting ringing in my right ear on occasion (same side as my tumor & neck dissection), but not every day. Not sure if it is tinnitus or not. Have not noticed any hearing loss ... yet.

My doctors have been telling me I've been doing really well compared to other patients at this point of treatment. I credit that with getting in shape physically prior to my diagnosis. I exercised and used intermittent fasting to drop over 70 pounds. Went from 265 down to 195. Got off a blood pressure pill and lowered the dosage of my cholesterol pill.
Posted By: ChristineB Re: My Update - 03-12-2020 03:37 AM
To clarify just how important it is to report any and all changes no matter how small or insignificant they seem to their medical team, especially when its happening during rads and/or chemo. Cisplatin can cause a wide variety of significant, permanent health issues. Hearing loss is one of the most common problems patients may have. Cisplatin is also known to cause kidney problems. When going thru rads w/ chemo, any changes a patient notices should be immediately brought to the attention of the medical oncologist. Often the cisplatin is changed to carboplatin which is similar to cisplatin without causing more permanent damage. Patients should NOT receive another dose of cisplatin if they've noticed any hearing changes (no matter how insignificant it may seem.... its not!!!). Hearing side effects from cisplatin are permanent and can not be reversed.

Learning about OC is something all OC patients should do, even the ones who want to avoid knowing too much. Reading about OC (using only reputable resources like the main OCF site... link is below) helps patients to find their own voice to be their own best advocate. Patients should know what is normal and what isnt so they know what to watch out for and pass along to their medical team. Its better to immediately speak up about every noticeable change, even something that seems like its just a minor difference to prevent a permanent health issue that affects something as important as their hearing. Better safe than sorry.

Main OCF Site, Understanding OC section
Posted By: DavidUofMsavedMe Re: My Update - 03-13-2020 01:31 AM
Had my final treatment today & rang the bell. 33 radiation treatments completed. Plus the 2 chemo rounds. Did anyone else keep their radiation mask? Or just me? Not that it matters, but I thought I would keep it for a while as a reminder.

Heading home tomorrow morning after breakfast. It will be nice to get back home again. I have only been home for two weeks since my surgery back on December 19, 2019. The rest of the time was spent here in Ann Arbor, Michigan where I received my cancer treatment.

Home sweet home.
Here I come.

Now the recovery begins.
Posted By: ChristineB Re: My Update - 03-13-2020 01:00 PM
CONGRATS on finishing your treatments!!!! Im sure you are anxiously awaiting being able to finally go home. In case you have anything pop up, your medical team is still working for you so dont hesitate to call for any changes you notice. Rads continues to work even after treatments have been completed. Have patience in your recovery speed. Its still all about the intake, the better you do with it the quicker your will begin to feel a little better. Im sure you've had a very long road with rads and you still most likely will run into some ups and downs during your recovery. At least you will be more comfortable being back home and the worst is almost behind you. In 2 or 3 weeks you should finally be thru the hardest part of the entire journey.

For me, I kept my mask since I completed rads w/ chemo back in in 2007. I actually found a way to put it to good use. The mask is frequently part of my anti-tobacco presentations I do at local schools. Besides my admin duties with OCF, I do several other public service type projects that keep me pretty busy. I'll spare you the details of my post-admin projects. The mask is part of my presentation at schools that are within driving distance from where I live. It always has quite a shocking effect on the audience when I explain how the mask is used to bolt us down to a skinny, cold table for our rads treatment. If I had to put a number on it, Id say 12,000+ students have seen my mask at my school presentations. Im certain the mask was quite a conversation starter when the students told their family about their school day. You never know what your future holds so if at all possible, hang onto your mask. If nothing else, its a reminder of how far you have come since being bolted down to that skinny table.

Best wishes with your recovery!!!
© Oral Cancer Support - Survivor / Patient Forum