Everyone here covered your concerns I just wanted to wish you luck and hugs!

Hi Gina,

As per my previous post around splitting the chemo over 7 doses rather than 3 as it seems as though the side effects you are experiencing are due to the Cisplatin.

See if your MO is also happy to move you across to Carboplatin as the continuous ringing in the ear is no good.

As for the swelling, it will continue to swell around your chin / neck line as the radiotherapy will cause scar tissue to form within the skin. Make sure you plan ahead and talk to your doctors about sorting out physiotherapy post-tx so they can help with scar management & any issues associated with swelling due to lymphedema.

As for your treatment plans, I am sure they will continue with the Radio but may recommend you skip Chemo but this will ultimately be determined by your white & red blood cell counts.

Hope that helps and best of luck with your ongoing treatment!

Hi G,

I'm new here and just started my treatments last week. I'm 3 rads in (of 30) and 1 chemo (cisplatin) out of 6 weekly done.

Nothing really to report other than a slight sunburn feeling to the left side of my neck and a little redness (Special Care Cream helping) and a general feeling of "yuck" this morning from the chemo yesterday. I have several anti-nausea drugs I need to take the next three days.

Concerning the cold. Always ask your docs but I'm Ok'd to use Afrin for nasal congestion. My mask has a mouthpiece built in and it's tight so it's difficult to breath through my mouth. If you have a cold and can't breath, I imagine you have mucous in your throat too. I would ask about a decongestant to dry you up so you can deal with rad treatments easier.

I'm surprised your RO recommended Tylenol. Tylenol can mask a fever and your team would want to know if you develop one, especially with the salivary gland reacting that way. I'd ask again if this hasn't eased up.

Concerning your hearing. Ringing in the ears (tinnitus) and hearing loss are legitimate concerns with Cisplatin. Not all patients are affected by this. Being a musician, my hearing is vital to my livelihood. I had a baseline hearing test and will have it checked again after a few weeks/treatments. My MO feels a 20% loss of hearing is acceptable and will continue Cisplatin should that happen. If it get's worse, we'll switch to Carboplatin for the remaining chemo treatments.

Good luck with everything!

"T"

The article is WRONG! Not everyone who has cisplatin experiences hearing loss. I know many here who have not had any hearing problems at all and have had cisplatin. My hearing was NOT affected at all. I had the 3 big bag method with the 3rd dose cancelled.

To fishman.... A 20% hearing loss is alot!!!! Thats one fifth of your hearing! Think of it this way....out of your 10 fingers, eliminating 2 of them is ok? If it were me, I would question your doc further before ok'ing this type of risk. Its not his hearing that is being lost, and your hearing is part of how you make a living. Remember that doctor works for you.

Here are a couple articles which discus the use of cisplatin and also hearing loss...

NCBI Cisplatin and hearing loss

Cisplatin side effects

Christine,

20% is a lot when you look at it that way After meeting with the audiologist yesterday, she was confident, based on my test results, I would be Ok. Perhaps a bit of high frequency loss which wouldn't affect me too much as most of what I do falls in the mid-range frequencies.

Also, hearing loss with Cisplatin is more likely with higher dose treatments. I'm getting a medium dose over 6 weeks. The test was more of a precautionary measure to monitor the situation. Being that Cisplatin is more effective than Carboplatin, I'd rather lose those two fingers and be NED than take the chance of not curing this. Hearing loss is not one of the primary side effects from my understanding but it happens frequently enough to warrant monitoring in my situation.

"T"