My dad has 2 Cisplatins under his belt and 15 more cooks to go. He is WIPED OUT. This is expected, right?
Many of you are familiar with our many unexpected struggles and we are happy to report all is "okay". No fever, blood work normal, the intense mouth sores are at bay.
His neck is beginning to look raw-kind of scary considering there are 15 more to go.
Is this normal, too?
Again, he is WIPED out/exhausted.
He continues to lose weight despite the PEG tube. Is this "normal"?
We are heading toward the finish line-so happy. We are expecting a tough road still. Each tick of the clock brings us closer to being done.

Hi, It sounds like your dad and my mom are having similar treatments. Mom has had 3 Cisplatins (the last was last Wed.) and she has 2 more radiation treatments this week and she will be DONE!! (She had 36 in all, I think.) Anyway, she too is quite exhausted. Her worst side effect right now is actually the constant thick mucousy saliva production. Is your dad having this also?
Mom has a PEG tube and has been doing very well holding her weight. Her neck did get very reddened and has now kind of peeled, but it has remained O.K. I think she is using aloe at home after the rad. treatments to keep it lubricated.
We are so glad to be close to the end, but from what I understand it takes several weeks to really start recovering. Hang in there and give lots of encouragement. I know my mom likes to hear that others are having similar problems, so she knows that they are "normal" for this treatment.

Good luck and God bless you!
Marie's daughter

What type of Cancer? Yup-sounds the same. I am so happy for you that you are on the last 2!!! What a triumph! Before my dad's break in treatment he was getting that awful mucus crap. What we did was get him a suction device (you know, what they have at the dentist.) That helps big time. I would imagine your mom would benefit too, since it will take a while for things to even out.
Did your mom have any breaks from treatment?
Ditto on the the hanging in there-I can't imagine anything worse than seeing a parent suffer. It just tears my heart apart. Nothing is put before you that you can't handle, I hang on to that.
Hugs to you.

Does he use the Vigilon pads? If not have him ask for them. They are what saved my neck along with the Biafine cream 4 times a day and 1/4" thick.

No, I will ask-thanks Barb.

I used radiaplex gel. Excellent stuff! I still have some left & used some a couple of weeks ago when I took my kids swimming at a lake & sorta forgot the sun screen! I had a pretty bright red sunburn that night & put radiaplex on & was gone the next day! Probably not so smart on my part to even get sunburned to begin with considering the massive radiation exposure I've already had! I spent two weeks in Honolulu in April of this year & with diligent sunscreen app's I didn't get burned once! Erik

ShawnaMargo,
Hi, my mom's cancer is mucoepidermoid and her tumor was in the submandibular salivary gland. She had a left neck dissection before the chemo and radiation combo.
Tomorrow is her last day of radiation!! Praise the Lord! She is having a pretty tough time with the mucous, though. It seems to have gotten even worse over the last few days. Where did you get the suction device? Did the doctor order it, or did you rent it from somewhere? I tried to get my mom and dad to ask for one early on when the stuff started getting bad, but her rad. doctor said she didn't need it! From the posts I've been reading, many have found it very helpful. Any info. on how to get one would be great since I think she'll be dealing with this for a while. She is gagging frequently and having a very difficult time sleeping.
May God give you the strength to endure,
Laura

His oncologist ordered it and the Home Care company just dropped it off. Oh my goodness, call her Oncologist-that is awful news. If your insurance doesn't cover it, I know that medical supply companies do rent out just about everything for a nominal fee, of course. The only reason you need the MD order (also known as prescription) is so insurance will cover it.
Some hope for you though: My dad's treatment was delayed for a week and the thick mucous completely broke up and is still kind of gone.
So, you be assertive and get what you need. If one says "no" keep going until someone says yes.
On another note-HOORAY! I am so elated for her and you! Finito!

Thanks, I've already called and left Dad a message to ask the docs tomorrow. If we can't get anywhere, I'll have him call the other doctor. I just want her to be able to enjoy finishing the treatments! We've been counting down the days. I'll also tell them about your dad's mucous subsiding- that will be welcome news!
Good luck to you, and I hope your dad can continue the treatments soon so he'll be finito, too!! At least then they can deal with the effects as "post-treatment." That is at least one small victory!

Hi Shawna,

Sounds normal to me. He will be wiped out and very weak. It will take several months to recover fully. I'm 9 months outof treatment and still feel the effects. They ar eslowly going away. He must consume at least 2100 calories per day. That's nine bottles of Boost or other nutrient per day. Your Oncologist can give some cream for the neck burns. It's amazing but my burns healed very quickly. My skin came off like a sunburn but underneath was smooth.

Steve Daib

Hi Shawna,

Steve again. have your Oncol prescribe Vanicream or get a sample from him. It is very cooling and soothing. Worked wonders on my neck burns.

Steve

Shawna,

I hope your dad's neck is holding up o.k. Sounds like you've gotten lots of good advice above.

I just wanted to thank you so much for your encouragement about getting the suction machine. My dad called the onc. doc. today and had one ordered and they delivered it this evening. I just talked to him, and he said mom is using it and it is helping already! That is great news because she was very skeptical that it could help with her extreme mucous problem. She is now finished with radiation! YEAH!!

Thank you so much for your encouragement and advice!
Laura

Oh, thank God for your mom! I am so happy for you and your family. My dad must have been posessed by the cancer devil today-he told me to "Go to Hell". This is INCREDIBLY unlike this typically sensitive man. I was/am still in absolute shock-kind of like a huge dagger was sunk into my chest. Yes, I realize I "shouldn't take it to heart" and "he's going through hell."
It still hurts me. I will be so glad when all of this is over...12 more treatments.

Hey Laura,
It's Minnie. So glad your mom is done with radiation. Give me a call when she is up to visitors. I talked to your dad last week so hope to see you all soon.
Minnie

Shawna,

I know what your dad said must have really been hurtful, but you have to think about all he's going through. I'm sure he's just frustrated and ended up taking it out on you. It is definitely hard watching a parent go through this. My mom can't talk right now, and it is so hard not even being able to call her. Sometimes I just wish I could turn things back to how they were 6 months ago and just call her up and ask her to go shopping!! Hang in there and remember that people say things when under stress that they don't really mean. I know how you must have felt, though. My heart goes out to you.

Keep counting down the days... It will be over soon!

Thanks, Minnie.
I'll certainly give you a call. The last several days have been very hard. I'm hoping and praying she'll start improving by the weekend. She had some nauseau which may have been left over from the last chemo last week, and the mucositis is really bad right now. Thanks for your continued thoughts and prayers.
Laura