Proton Therapy at Scripps

AnotherSurvivor said:

I just got done (Jan 3) with

I just got done (Jan 3) with a very similar course of treatment.  You pretty much have a handle on the daily stuff now, that doesn't change much.  Chemo is a bigger risk to you than the rad, because its side effects are so unpredictable.  I did carbol-taxil, and I turned out to have a reaction to benedryl that they included to reduce nausea.  I started having violent shivering and fevers 4 hours after chemo.  That started in week 4.

If you start experiencing a lot of phelgm and mucus, I recommend a suction pump from medicalresouces.com (the gomco 330A) they have on sale.  You don't have to sit and spit.  Probably your main threat is not the cancer, they will highly probably get that.  It's heavy duty side effects like infections and thrombosis (blood clots).  Your best guide on that is your temp and vitals.  A self-pressuring blood pressure cuff, a digital forehead thermometer, and a finger blood oxygen gauge will let you monitor locally.

 

I ended up with lung embolisms, which showed up in my bloodwork and blood ox, but we were looking for some form of low level infection (which I never had), turns out blood clots will show the same symptoms.  I heard later that week 4 was when things commonly start getting heavy (and I really wish that had said that rather than "it depends".  Most of weeks 4 and 5 was hospital.  week 6 I was out but in a wheelchair, 7 I walked into the lab for my final Rads.

 

I am now 3 weeks past R35, and think I have taste returning (banana!), and I go for hours with no mucus.  Sleep can be iffy, sometimes solid, sometimes spotty.  Next week I have a plan for indoor walking exercise (IKEA is large, warm and indoors out of the snow and cold).

They will bug [content removed by CSN Administrator] you on calories, without working solutions.  One imbicle dietician was talking to a man who had trouble swallowing water about maybe putting gravy on mashed potatoes.  I suggest you talk to experienced head and neck oncology nurses ONLY when you talk nutrition.  Hospital dieticians seem to all be not terribly bright home-ec majors.

 

Yesterday when I woke up my tongue was hurting, when i had my rad treatment the doctor looked at it and said i have thrush. He started me on liquid Nystatin, this really sucks. I've been diligent about rinsing with baking soda and salt and keeping hydrated. Hope it clears up soon :-(

vanbcman said:

Been there with the HPV Throat Cancer 1 1/2 years out

I found the radiation hit my taste and swallowing at the 3 week point. When I complained about a sore throat the radiation tech said "finally" you complained about something. I guess you are used to your warrior mask by now. It will shink and fit looser as the radiation treatments continue which is kinda nice. I had a tube feed and I still lost 40 pounds which was considered good at the time. My friend didn't have one and he dropped  60 pounds. But everyone is different. Thats the one thing I wish I had known. I kept waiting for the nausea and it never happened. If you didn/t feel sick after your first chemo then you should be OK on that front. But still take the nausea meds just in case. I had cisplaten and just now have develped Tinnitus from it. My taste is 25% of what it used to be so far. I would say that is the worst side effect from the treatment and dry mouth. Hope I have not scared you. Your life will be different for a while ..but you are alive. Thats what I keep telling myself. 

How long since your treatment? So far I'm keeping on the weight, only lost 2lbs so far. It's been tough to eat with very little taste and pain from Thrush. And yes, being alive is the key thing :-)

Don

I would get on the horn to Scripps and set up an appointment ASAP!!! I'm not sure if you would see Doctor Grover or not but he is my Oncolgist. 
(858) 549-7400

You could also ask for his personal nurse assitant Melissa, she could help set up an appointment also.
Good Luck,

Don

Quick update - 10 more rads to go. I had most of the week off due to the Proton machine being down. They finally had me go to a standard IMRT machine Friday and Saturday, the Proton machine is supposed to be back up on Monday. They are planning to give me a double day next week to put me back on schedule. Glad to be starting week 6. Overall I haven't had too many side effects from the radiation but the Herbitux has really hit me hard. I stopped at the 5th dose and don't think i can do anymore. My face is beet red and hurts, my fingertips have cracked and bled. I just don't thin anymore Erbitux will make any difference.

I've lost all taste except for slight taste of sugar, Thrush came back but not as bad and it's almost gone again. I've been sleeping over 12 hours a day and feel very fatigued. I'm on all liquids except for watermelon and apples, I really miss food :-(

All in all - doing pretty good. Almost done with the therapy so hopefully in a couple of weeks i can report on good recovery news!!!

Don

One more week to go, didn't think it would ever get here. Fatigue has leveled off but I'm still sleeping a lot, still able to make the drive to San Diego and back. I think i should be able to do it all of next week too. I'm down 20 lbs and Dr. Grover says I can't lose anymore, I'm trying everything but it's so hard to eat when everything takes so awful or the texture is so bad. 

I do have some neck burns that may worsen next week and the Erbitux rash is still going strong :-( 

Thank you and John again for responding, it means a lot!!!

Don

AnotherSurvivor said:

There is a waterbase gel pack

There is a waterbased gel pack called RadiaDres that I used on my neck burns.  I applied Aquaphor lightly, and then used the gel packs to reduce pain and speed the healing.  They don't stick, but they also tend to dry out in a few hours.  They are not cheap, but our radiation oncol's nurse gave us a stash when she saw the need.

I also got the 'can't lose any more weight' lecture.  It's not like you have a choice on how much you lose, and I think they lose sight of that.  That led to some very tense discussions on the physical meaning of 'can't'.   I dropped 40 lbs (started at 220 and 6').  Once you can start getting calories in the loss stops quickly.  As close as you are to the end, I think you'll make it without a PEG.   They thought about it with me, but I'm a surgical risk so even putting in a PEG was too risky.  The debate on me stopped when a very senior oncol with a lot of experience said my weight loss, while sizeable, was not pushing me into organ failure risk.  Two months of post-treatment +2,000 calorie days has me lean and mean at a firm 180lbs.  

I'll look into the RadiaDres, Aquaphor is working but it's pretty messy. I've cut the collars out of several t-shirts so they don't rest on my neck burns, works for around the house but then I have to put on a collared shirt to go somewhere and that's beginning to get painful. I'm 5' 9" and usually around 175lbs, I'm a cyclist so losing a little weight from my normal is ok by me. I did bulk up to 184 lbs pre-treatment and I keep telling this to my doctor, I've really only lost 10 lbs from my normal weight. Oh well, I'll only have to get the lecture one more time.

I can't wait to feel up to riding again, especially with all of this wonderful rain we've had in Southern California. The Mt. Biking will be amazing this year!!!

Don