Christine,

Don't be so hard on yourself. At my house, this is the summer of crying. My kids have now seen me cry so many times it has no impact on them. What they do know is that there dad was going to go from feeling perfectly fine (he had no pain or symptoms going into this) to feeling terribly lousy and then he is going to be fine again.

I am amazed at how well they are handling the day to day of this situation. And, my daily tears...and, sometimes their dad's. It's just like...oh well...there they go again.

We were told that the Cisplatin could cause thinning, but unlikely to cause baldness. Interestingly, that was my daughter's concern for her dad and not my husband's concern. (I think it's a girl thing...I'd be concerned too).

I know with some chemos that are given for below the neck cancers, hair loss is a given. Dan was set up for 3 rounds of Cisplatin and only had one. He never lost any hair. The Cisplatin wasn't going to extend his radiation schedule, he was always scheduled for 7 weeks. Are they extending yours? Or, will you have the third dose of Cisplatin after the radiation is complete?

Trying to digest all of the info at those pre-treatment consults was in some ways harder than the treatments themselves. It's hard to be told the 5 gazillion possible terrible things that MIGHT happen to you...and, then have to stew about that before treatments even started.

But, I do hope you read the posts about people who got through this and did remarkably well.

Dan's first 2 weeks of radiation and chemo went pretty darn smoothly. And, now we are already into week 5 and then there are only a little over two weeks left. It's not a cakewalk right now. However, I have a big whiteboard calendar that I use to mark off the dates...I keep reminding myself that this is such a short time in the grand scheme of life. And, now there are more two thirds of the treatment days are checked off on the calendar.

You'll get through this. You are tough...I can feel it! And, it's ok to have bad days. And, it's ok for your kids to see that you aren't always super human.

I think the feeding tube is a good idea if you are already struggling to eat. I was frustrated this week because we didn't have that option. But, now we seemed to have jumped a mini hurdle and my husband is eating (creamed soup) and drinking again.

I think the port is not a bad idea either, but I just asked my husband and he said, like you, he wouldn't want one either...even though he is tired of being poked routinely. His new chemo is weekly. Plus, they'd like him to start coming in for more IV hydration, which he refused today.

You are going to get through this!! You'll get a lot of support and prayers form this forum!!

Dear Christine, You might want to discuss the port some more with your Doc. John's was almost invisible to the naked eye. The port can be very useful for rehydration and fast pain medication should you need either. It isn't just for chemo. Sorry you had such a bad day today. It will be rough for awhile, but it will get better. Amy in the Ozarks

I have agreed to get the port. I have talked with several people at work and have decided its really for the best. It will be done the same time as the feeding tube.

Christine, You won't regret the port. I had one and it relly helped with hydration during treatment as well as delivery of chemo and meds.

As for your hair, I am really surprised you were told you would lose it with cisplatin. I had cisplatin and it did cause my hair to thin (and it is still thnnier in those spots over 2 years later) but I definitely did not go bald and I think you will find that's true of most people in here who have had it.

Your chemo schedule is the same I was supposed to have too (my white blood cells got so low after the first chemo that the second was delayed and the third was cancelled--which sometimes happens) and it goes right along with the seven weeks of radiation.

But if you are thinking it will be nine weeks before you start feeling better, you're right, because even after the radiation ends, you continue to feel worse for a couple of weeks (it's the gift that keeps on giving). Still, after week 7 you won't have to be going for radiation treatments, you can just recoup at home.

You sound like you're preparing for this really well. Keep asking questions as you have them.

Nelie

Christine:
I agree with Nelie. I feel both the port and the PEG tube are great assets. I couldn't stand the PEG tube when I first got it, but by the end of week 5 my throat had "closed up shop and went on vacation" and the tube became my best friend. At that point the port really came into play as well, due to needing hydration almost daily since I had lost so much weight, combined with the meds.

As far as the hair loss, that surprises me. I was told straight up that I would not lose my hair, but we wanted to monitor my hearing closely. Well, my hair got thin, and I actually lost some body hair, but I never lost all my hair. 8 months out and it's growing very slowly but starting to thicken back up. I have yet to have a hair cut but one of my co-workers and my boss told me the other day that my hair was about as long as they ever remember it. I told them I take that as a compliment!! Anyway, I know that there is a lot coming at you, but remember, you don't need hair to breathe!!

Stay in touch with the cisplatin and the hearing. It cost me a tremendous amount of hearing loss (especially high frequency loss). The damage was done before I even realized and could react to it. I know that's scary as well, but once again my thoughts are "I'm still around" and I have help concerning the hearing loss (There is always the option of Hearing aides and I found classes on how to cope with hearing loss through a state funded vocational rehabilitation group).

Keep communicating! We're all here to help one another.
Best of luck,
Steve

Christine, Nelie is correct. You will not go bald with Cisplatin. I had two treatments, the first before my first rad, the same day, and a second two weeks later. It was not until my hearing got weird and I was switched to Carboplatin and Tax-something-or-other, that my hair fell out.

Because of where the radiation was aimed, I lost hair on the back of my neck, but that grew back just as it was before.

I am pretty sure you can cross hair loss off your list of things you are worrying about.

I remember the flurry of appointments, but once that is over, you can settle into the routine of treatment and things will seem much easier.

You can do this!

Christine,

I'm glad you went with the port. Getting "stuck" all the time is just one more irritation on a top of a lot of annoyances for my husband. And, on chemo days, when they have to tape things securely into place...well, let's just say he has a little less hair on his arms. ;-)

My husband is stubborn, he would not have entertained the option of the port, but I do think it will make things go a little easier for you.

I hope you are having a good weekend. It does get a little easier mentally when you can start to check off treatment days...do you have a start date for your treatments?

Christine,

All the hoopla about the Peg I went through, which I didn't get and I personally am glad I didn't BUT the one thing I wish my docs had suggested more than once was the port. knowing what I know now, that's the one thing I wish I had gotten for sure.

Thanks everyone for your encouraging words. Its so nice to hear from people who have been thru this successfully. All the different doctors and appointments have me worn down. Peg tube and port are being done on the 30th, along w/ the mask for the radiation. I will begin treatments on Aug 6th. Im looking forward to October, by then I should be thru this and on my way back to being myself.

Hi, Christine, Sounds like you are making very good decisions about your treatment-both the peg and the port will help you get through the bad days. Remember October is just around the corner. Amy in the Ozarks