23 down ... 10 to go!

Fritz

Hey guys!  Sharing my current status.

This morning was # 23 with 10 rads remaining. Could not recieve # 5 of 6 on Cisplatin infusion yesterday because my platelets were too low. All other labs were ok, just platelets were low. The knew another dose of Cisplatin would cause them to dip even lower and did not want to risk the potential to "bleed out" if I were cut or anything. To me this was a blessing as Cisplatin infusion is aweful and I do not have to replace, just get to skip one.

I think getting 7 beams of radiation from various angles is taking its toll now. Neck is very red and burning at this point for the entire 360 degrees around the neck. Using plenty of lotion to keep it moist. No blistering at this point, so hopefully, redness will be the worst of that. I guess being from the South, I am supposed to be a redneck anyway (a little humor for all you North of the Mason/Dixon line).

Swallowing is becoming more of a challenge. Not the functionn itself, just the increased pain. Again, I am getting blasts from 7 angles covering back to front and everything in between. Pain is deep in throat so tough to swish Magic Mouthwash that deep but do my best to let it slowly enter the throat after swishing. It is mainly with "dry" swallows as not as painful when drinking liquids. The pain is there but not as noticeable as with "dry" swallows.  Using pain meds much like I had to after my surgery. Same type sores/lesions that came with surgery are reappearing so I had already been down this road before. As others have guided me, the various swishes have been great in helping with these setbacks when pain meds wear off but still too early for next dose.  SO THANKS TO ALL OF YOUR POSTS FOR THE MANY TIPS PROVIDED!!

Also, voice is practically gone now. Down to a whisper at best. Have been maintaining virtually a full work schedule and unfortunately, that involves a lot of conversations throughout the day.  I just think the radiation and me not cutting those conversations back have caused me to lose my voice.

Have been on all liquid diet for about a week now as mucous prohibits most foods from making it down without some type of gag reflex. Not worth that fight, so I have settled on liquids for all caloric intake. Still able to achieve 2,000 - 3,000 calories per day even with the increased pain. No peg tube, so this fight with pain is not an option for me. I have to continue to take in calories regardless of pain level.

I am just ready for one restful night's sleep.  I do not think I have had one of those since April 1 when my tonsil and lymph tumors started to show their sizes in my throat. Now it is just pain and sores. So looking for these treatments to end so I can look forward to sleep again.

Enough bad stuff .... The good news is only 2 weeks (10) rads and 1 chemo left so the real healing can begin. Just ready to discover my new normal and get there as quickly as possible.

Again, just wanted to provide you guys with an update and allow any newbies to ask questions if needed.  I so much appreciated the other comments on this site, especially with Steven sharing his journey with me and the other newbies.  And all the veterans of HNC, without your responses, I am not sure I would have been as prepared as I was for this. THANK YOU ALL SO MUCH!!!

Freddie

 

stevenpepe

Hey Freddie, sounds like you

Hey Freddie, sounds like you're doing great! I think my journey was not as involved as some other folks. For example, mucositis is pretty mild for me. In fact, after week 4, I asked my nurse when I could expect it. She said I already have it! It never interfered with eating. What finally got me off solids was the combination of mouth pain, texture, dry mouth and taste. When combined, it made eating so frustrating. It's just so much easier and faster to drink.

The next 10 sessions will go quick. When I think back, it's hard to fathom I endured 7 weeks of treatments. But I did, and now on to recovery. Best of luck to you!

Fritz

Thank you, Steven!

Thanks, Steven.

Your journey posts have really helped me during my own journey. I so appreciate you taking the time to do so. As you said, the journey may be more or less severe for each of us, but pretty consistent in what to expect. That is what was nice about your posts. It provided that window that so many need just to get as prepared as possible.

Keep us posted on your healing and best of luck to you!!!!

Freddie

SusanUES

Go Fritz!

Come on, buddy, you are almost there!  I know the swallowing is tough but keep up with the calories any way you can.  Probably the only time in our adult life we can eat as much ice cream as we want.  Yes, the sleeping gets tough...Liquid Oxy should nod you out before bedtime and I had my oncologist prescribe a month of the lowest dosage Ambien on the market.  That helped, too.  Sleep is critical and it's tough to get it during and after treatment.  Pulling for you, keep posting...INDEPENDENCE DAY is coming for you soon, Freddie!

Fritz

Thanks Susan!

As with Steven and others, your posts have been so helpful and encouraging. I appreciate your willingness to help us during our journeys.

Freddie

LiseA

Today was my 24th day.  Eight

Today was my 24th day.  Eight more to go, so we are close. Have you tried glutamine for gargling?  At first it didn't seem to work, but it's been like a miracle this week with no pain and I'm on solids into 4th day of my 5th week.

Fritz

Yep, on glutaine

Hey Lise.

Yes to glatamine ... been using it since day 1. Mucous has broke some but just very raw inside. I hope you continue to do well as we both are very close to the end.

Freddie

RottiesMom

You're almost there!

You are doing great!  I am just 4 down 31 to go (and I don't get to skip July 4).  I also have 2 cisplatin infusions.  I have to go for a hearing test on Tuesday because I had some ringing in my ears after the last one.  If my hearing gas been effected thd doctor might split the infusions onto 2 days.  Starting to feel burning on my neck and things taste strange or no taste at all.

I hope both you and Lise continue to do as well as you have been now that you are nearing the end.

Fritz

Thanks Joanne!

Thanks, Joanne.

Yeah, I am so glad I had a choice in my Cisplatin dosing. I hope your tests go well as this stuff can do permanent damage to the hearing.

Keep us posted on your treatments so that we can help if possible along the way.

Freddie